Note: Start reading from bottom at "2008".
Happy One Year Anniversary To Me!
I can't believe it is almost one year. Today is Sunday January 27th. I turned 45 years old yesterday. Boy do I feel old! I can't believe that in one week it will be my one year anniversary from the day I had my total bilateral TMJ replacement surgery.
Reaction to Stress - The Case of the Missing Eyelashes
I noticed that some posts that I did are missing. Somehow they must have gotten erased or I forgot to hit the publish button after I finished writing into this blog. So I am going to recap on an issue that I had but has since been rectified. I noticed 6 months after surgery that I lost my eyelashes. I went to put on mascara for the first time and noticed my eyelashes were gone. Someone stole them! I actually had places where there were no lashes and whatever lashes were there, were so small they were barely noticeable. I went to see a Plastic Surgeon. He prescribed Latisse for me, which is a prescription to help grow your lashes back. This product was expensive ($150 CDN) and not covered by my insurance but IT WAS WORTH IT. You wouldn't believe the length of my lashes now! I should be an eyelash model for mascara. They are really long and beautiful. It took six months for the ful result to happen but I couldn't believe it. I highly recommend LATISSE if you have the same post-surgical side effect. They say that it is caused by stress and I believe it! You can check it out at: http://www.latisse.com/
Pain Will Never Go Away
Due to the weight gain that I have been having, I went off my Neurontin/Gabapentin because weight gain has been known to be a side effect of weight gain. Unfortunately, I have not been able to lose much weight, only about 5 pounds. That's better than nothing. On the negative side, my pain has skyrocketed through the roof. It has been excruciating. I couldn't take the pain anymore and have started back taking the drug. It seems to be the only thing that was helping me. I found that OxyNeo did not help. The new formulation of the drug seemed to be non-effective at reducing my pain. In the meantime, the temperatures in Mississauga Canada have dropped and it was -12'C with a wind chill of -22'C. I don't know if any of you experience this when you have severe pain but when I have excruciating pain, I get nauseous and want to vomit but my mind starts playing tricks on me. It starts throwing thoughts everywhere. There are no words to describe it, but it is horrible. At times, I feel like I am running away from my pain in my mind and it is chasing me. You are nauseous, you are crying, you are in pain and you are literally losing your mind. That was me all this week. I haven't had this much pain since before the surgery. I even missed three doctors appointments and didn't even realize it! It basically told me that I will have pain the rest of my life. If I can get back up to my full dosage of Neurontin/Gabapentin, I should be able to avoid these excruciating pain attacks, assuming that it helps like it did before. UPDATE FEB.21st: I am back up to my previous dose and the Neurontin is helping me. ( Wooo hooo!!!! Happy Dance! ) I think this is my "miracle" medication. It really helps with my nerve pain and helps to prevent me from having trigeminal neuralgia pain and the pain where I feel like I'm having root canals in my teeth!
Mourning the Loss of My Career
That leads me to another revelation...... I will not be returning to work. I always hoped that I would one day return to work, to my career, to my job, to my friends and colleagues But I have realized and come to the conclusion that it will not happen. I still have too much pain. I have more better days now than I did before, but I will continue to have bad days and I cannot predict when the bad days will happen, and how long they will last. Whenever the weather changes, my pain increases. I can feel the swelling in the left side of my mandible. My ears still do not relieve the pressure and I try to pop my ears with the hold your nose technique and blow, but it doesn't work. All I hear is clicking noises in my ear. My surgeon agrees because I have nerve damage in my face and that damage will unfortunately continue to cause me pain.
I am still working with my Psychologist to get me through this whole ordeal to and deal with the fact that I will not be returning to work. I found that I couldn't have done this alone. Seeking help was necessary and a smart move on my part. I now go only one a month because I have used up all my insurance coverage and the sessions are very expensive (when you don't have coverage). It will always hurt me inside that I cannot continue my career or return to work.
I have come to the conclusion that I can dwell on it and go nowhere, or I can move on with my life as I started to do in my previous posting.
Writing an E-Book
I have started writing an e-book on my experience in dealing with Trauma, to help others like me and their families get through difficult times. The book will be aimed at both the patient and their family and friends. For the patient, it will help people like me who have suffered major trauma understand what they are going through and how they can help themselves. For the families/friends, it will help them understand what they can do to help and support the patient. As I wrote this blog, I aimed it at more at TMJ replacement and my experience related to the surgery. This e-book will focus on trauma in general and be much more specific in nature when it comes to overcoming adversity and the roadblocks and challenges that one will incur while on the road to recovery. Once it is completed, I hope to have it published as an e-book and donate a portion of the proceeds to a charity.
ONE YEAR!
My one year surgery anniversary will be February 7th, 2013. I know that this is a major milestone and could be a very emotional day. I plan to go with my husband to The Key, which is a steakhouse, and celebrate with a nice big soft juicy prime rib! Even though my juicy steak will slice like butter, I am going to devour it and celebrate that I can eat, talk and breathe. That I am still alive. I survived my surgery. I am a fighter and I never gave up and I will continue to fight this TMJ disease and kick butt!!!!!
Please note that I am not advertising for any products named in my blog. Nor am I being paid to speak or write about them. I am purely mentioning them to you because they helped me and they may help you too. This is pure word of mouth and it is solely your decision and discretion whether or not you want to pursue investigating or taking the mentioned product(s).
8 Months - Tiny Eyebrow Movement & Creating Purpose In My Life
It's been 8 months since my surgery and my mother told me that she has noticed a big change in my face in terms of the swelling. The swelling really subsided and appears to be almost all gone now. Also, my mom noticed that I am speaking much better. I am not slurring as much. My mom has seen the small changes in me week by week, but she says that I am finally looking more like myself prior to the surgery.
I am still paralyzed in both eyebrows and my forehead. However, there is a very small movement in my left eyebrow. It is hard for me to do the movement, but it is there. That gives me hope that the nerves are regenerating. My Neurologist says that it could take up to a year and half for the nerves to completely regenerate, but there is hope. For all of you out there that have had surgery and have nerve damage, be patient. It takes months, even a year for it to heal. You will see very very very very small changes month to month. Just hang in there.
The nerves in the right side of my face are regenerating. My eye surgeon has noticed a difference. It is a small change, but a change for the good. I still cannot close my right eye and keep my left eye open. I can only close my right eye if I close my left eye at the same time. The eyelid is finally closing all the way on my right eye which is evidence that the nerve is still regenerating and healing.
I was talking to my husband one day and he started doing this funny tic kind of movement with the corner of his mouth. I couldn't figure out what he was doing. Before I continue with the story, you have to understand that my husband has a kind of "sideways" kind of humor. He was imitating me. Not to make fun of me, but to make me laugh. I had no idea that the corner of my mouth was moving on it's own. It does that time to time. Also, when I close my right eye, the corner of my right mouth moves as well. I do a half smile with my right side when I close my right eye. It is very hard to get the corner of my mouth to relax. When I go to sleep, it takes me about 10 minutes to get the corner of my mouth to relax enough that I can start to fall asleep. Again, it's all due to the nerves regenerating. It has been like this for over a month now. I call it my "gympy face" trick.
I have to say that the MEPIFORM is a god-send. It is amazing. A sheet in Canada is $25.00 CDN/USD and can be purchased over the counter without a prescription. I saw a plastic surgeon the other week about my face and he highly recommended that I keep using the MEPIFORM and is confident that my scars will improve even more. They are no longer bumpy and are getting very smooth. Plus, they don't hurt anymore. I know that the scars are still healing because they are itchy. I am going to keep using the MEPIFORM for another 2 months. The plastic surgeon noticed that one of my eyes is still "unbalanced" due to the nerve damage. The nerve is regenerating and my lower eyelid is starting to work a bit better in protecting the eye. I am no longer at risk for any cornea damage which is great news. He said that he could do a Botox injection to make the eyes more symmetrical but I opted not to do the Botox. It is a very small difference and I don't want to start injecting my face. I will wait for nature to take its course and naturally heal.
I saw my dermatologist again. She recommended laser therapy to get rid of the rash - redness in my face caused by surgery. No cream with get rid of it. I believe it was LHE laser treatments. I am now looking into getting a few treatments. They are quite expensive - up to $750 per treatment.
I still have the RLS. I notice that I had to take my meds one hour prior to going to bed or else I end up with the "hee-bee-jee-bees". That's the name I've given it because it feels like you have ants and bugs crawling around in your legs and body. I have it under control with the meds now.
I started to see a Psychologist about a month ago. You know those pictures with someone sitting on a couch or chair and the doctor with a note-pad taking notes, well that's what my sessions are like. I needed someone to talk to about the whole surgery and ordeal. I have alot of pent up anger towards the dentist who screwed up my teeth and jaw and I need help dealing with my depression. His idea in helping me is to get me active again. To give my life purpose and meaning again. Although my life is nothing like it was prior to all the reconstruction and surgeries, I have to start having one again. I have to find a way to create a new life and start living again. We are making small steps to get me out of the house and around people again and to be social. No more living in pajamas! I started taking a 9 week Hula hoop class at the local community centre and I started guitar lessons. I always wanted to learn how to play the guitar. I am an accomplished pianist and started piano when I was 4 years old and started teaching piano when I was 13 years old. Teaching music helped put me through university. Anyways, I am thoroughly enjoying my electric guitar lessons and my hula hoop class. Although I am terrible at hula-hooping and all the fancy moves that they are teaching us, the point is just to get out of the house and be with people and try something new. I am also taking free Yoga classes at our local Lululemon store once a week. I am finding the yoga really helps relieve tension and stress in the neck, back and head. The classes are generally hatha yoga and slow paced with a focus on the breadth. I highly recommend trying a yoga class during your recovery.
I also volunteered at our neighborhood centre for a program called "Strong Bodies, Healthy Minds". I did a 10 minute presentation two weeks ago at an Addiction workshop. I spoke about my ordeal with jaw reconstruction and turned it into a motivational story. It was well received. It felt good to help others with my story. It felt good to socialize with others too. Although my story is not about addiction, it was about overcoming adversity. Although I am still working on overcoming adversity myself, I have come along way and talking about it also helps me in my own recovery.
As you can read, I am trying very hard to start living life again. I've spent too many days/weeks/months sleeping and lying in bed. On a lighter side, I have more pajamas than I have street clothes!!! LOL! It's been over 4 years since I worked full-time and I really miss my job and all the people at work. That is the hardest thing.... not being able to go back to work. I still have too much pain. Plus, I am still very drowsy from the meds and do not have the energy, memory, and mental capacity that I used to. I sleep and nap more than my 81 year old mom. (Happy Birthday Mom!) This is a big cause of my depression. But I am trying to work at getting a life back. Maybe not the one I used to have, but my new life. It is hard to accept that I can't have my old life back. No more fitness instruction, no more full-time employment. Yes, life throws you curve balls and you have to duck and keep on going. I am just learning to duck now. For all those of you who have had their lives turned upside down because of the problems with their jaws, I am sure you can relate. If you are stuck in a rut, perhaps you too need to find a new purpose in life like I am.
That's all for now. I will keep updating my blog. I hope to post some recent pictures of my scar and my face shortly. See you at month 9!
P.S. If you are going through TMJ replacement, please reach out to me. I can be there to help and support you. The more support you have, the easier it will be. You don't have to go through this alone. Although I am miles away on another continent, I can be there to answer any questions or just be a friend to talk to.
I am still paralyzed in both eyebrows and my forehead. However, there is a very small movement in my left eyebrow. It is hard for me to do the movement, but it is there. That gives me hope that the nerves are regenerating. My Neurologist says that it could take up to a year and half for the nerves to completely regenerate, but there is hope. For all of you out there that have had surgery and have nerve damage, be patient. It takes months, even a year for it to heal. You will see very very very very small changes month to month. Just hang in there.
The nerves in the right side of my face are regenerating. My eye surgeon has noticed a difference. It is a small change, but a change for the good. I still cannot close my right eye and keep my left eye open. I can only close my right eye if I close my left eye at the same time. The eyelid is finally closing all the way on my right eye which is evidence that the nerve is still regenerating and healing.
I was talking to my husband one day and he started doing this funny tic kind of movement with the corner of his mouth. I couldn't figure out what he was doing. Before I continue with the story, you have to understand that my husband has a kind of "sideways" kind of humor. He was imitating me. Not to make fun of me, but to make me laugh. I had no idea that the corner of my mouth was moving on it's own. It does that time to time. Also, when I close my right eye, the corner of my right mouth moves as well. I do a half smile with my right side when I close my right eye. It is very hard to get the corner of my mouth to relax. When I go to sleep, it takes me about 10 minutes to get the corner of my mouth to relax enough that I can start to fall asleep. Again, it's all due to the nerves regenerating. It has been like this for over a month now. I call it my "gympy face" trick.
I have to say that the MEPIFORM is a god-send. It is amazing. A sheet in Canada is $25.00 CDN/USD and can be purchased over the counter without a prescription. I saw a plastic surgeon the other week about my face and he highly recommended that I keep using the MEPIFORM and is confident that my scars will improve even more. They are no longer bumpy and are getting very smooth. Plus, they don't hurt anymore. I know that the scars are still healing because they are itchy. I am going to keep using the MEPIFORM for another 2 months. The plastic surgeon noticed that one of my eyes is still "unbalanced" due to the nerve damage. The nerve is regenerating and my lower eyelid is starting to work a bit better in protecting the eye. I am no longer at risk for any cornea damage which is great news. He said that he could do a Botox injection to make the eyes more symmetrical but I opted not to do the Botox. It is a very small difference and I don't want to start injecting my face. I will wait for nature to take its course and naturally heal.
I saw my dermatologist again. She recommended laser therapy to get rid of the rash - redness in my face caused by surgery. No cream with get rid of it. I believe it was LHE laser treatments. I am now looking into getting a few treatments. They are quite expensive - up to $750 per treatment.
I still have the RLS. I notice that I had to take my meds one hour prior to going to bed or else I end up with the "hee-bee-jee-bees". That's the name I've given it because it feels like you have ants and bugs crawling around in your legs and body. I have it under control with the meds now.
I started to see a Psychologist about a month ago. You know those pictures with someone sitting on a couch or chair and the doctor with a note-pad taking notes, well that's what my sessions are like. I needed someone to talk to about the whole surgery and ordeal. I have alot of pent up anger towards the dentist who screwed up my teeth and jaw and I need help dealing with my depression. His idea in helping me is to get me active again. To give my life purpose and meaning again. Although my life is nothing like it was prior to all the reconstruction and surgeries, I have to start having one again. I have to find a way to create a new life and start living again. We are making small steps to get me out of the house and around people again and to be social. No more living in pajamas! I started taking a 9 week Hula hoop class at the local community centre and I started guitar lessons. I always wanted to learn how to play the guitar. I am an accomplished pianist and started piano when I was 4 years old and started teaching piano when I was 13 years old. Teaching music helped put me through university. Anyways, I am thoroughly enjoying my electric guitar lessons and my hula hoop class. Although I am terrible at hula-hooping and all the fancy moves that they are teaching us, the point is just to get out of the house and be with people and try something new. I am also taking free Yoga classes at our local Lululemon store once a week. I am finding the yoga really helps relieve tension and stress in the neck, back and head. The classes are generally hatha yoga and slow paced with a focus on the breadth. I highly recommend trying a yoga class during your recovery.
I also volunteered at our neighborhood centre for a program called "Strong Bodies, Healthy Minds". I did a 10 minute presentation two weeks ago at an Addiction workshop. I spoke about my ordeal with jaw reconstruction and turned it into a motivational story. It was well received. It felt good to help others with my story. It felt good to socialize with others too. Although my story is not about addiction, it was about overcoming adversity. Although I am still working on overcoming adversity myself, I have come along way and talking about it also helps me in my own recovery.
As you can read, I am trying very hard to start living life again. I've spent too many days/weeks/months sleeping and lying in bed. On a lighter side, I have more pajamas than I have street clothes!!! LOL! It's been over 4 years since I worked full-time and I really miss my job and all the people at work. That is the hardest thing.... not being able to go back to work. I still have too much pain. Plus, I am still very drowsy from the meds and do not have the energy, memory, and mental capacity that I used to. I sleep and nap more than my 81 year old mom. (Happy Birthday Mom!) This is a big cause of my depression. But I am trying to work at getting a life back. Maybe not the one I used to have, but my new life. It is hard to accept that I can't have my old life back. No more fitness instruction, no more full-time employment. Yes, life throws you curve balls and you have to duck and keep on going. I am just learning to duck now. For all those of you who have had their lives turned upside down because of the problems with their jaws, I am sure you can relate. If you are stuck in a rut, perhaps you too need to find a new purpose in life like I am.
That's all for now. I will keep updating my blog. I hope to post some recent pictures of my scar and my face shortly. See you at month 9!
P.S. If you are going through TMJ replacement, please reach out to me. I can be there to help and support you. The more support you have, the easier it will be. You don't have to go through this alone. Although I am miles away on another continent, I can be there to answer any questions or just be a friend to talk to.
6+ Months - Dermatologist & Stable Mode
I saw a Dermatologist regarding the rash on my face. She said it was a form of adult acne and was given a cream to apply twice daily. I suspect that I developed it from not washing my face that often. Because of the pain, I know that I have refrained from washing my face diligently. Hopefully it will clear up in a couple months.
I showed the Dermatologist the scars under my cheek and chin which were painful to the touch. I could not touch my face within one inch of the scars and when I touched the scars, it felt like razors blades cutting in to my skin. The Dermatologist recommend a product that you can get over the counter called MEPIFORM. MEPIFORM is a thin, discrete and flexible scar dressing (like a bandage) with a soft silicone layer. It flattens, softens and fades red and raised hypertrophic scars and keloids. It is waterproof and can be worn while bathing and showering. You can cut to size to fit your scar. This is a god-send. Everyone should use this. It comes in a big sheet and you cut a very small piece to put over your scar. You wear it as much as you can, a minimum on 12 hours a day to 24 hours a day. Keep wearing the same strip as long as you can until it won`t stick any longer. Within a week of wearing the strip, my scars were no longer painful. I have been wearing them for a couple weeks now and I can already see an improvement. Every surgeon should recommend these to their patients! See http://www.molnlycke.com/patient/en/Products/Wound/Mepiform/
I had my 6 month checkup with Dr. Psutka and am now in a stable - holding pattern. That is good news!
I saw my Neurologist about my RLS. He gave me a prescription to treat it and it has made a big difference. It took a couple weeks for it to really start working, but it is really helping. I can now fall asleep at night and no longer wake up in the middle of the night with symptoms. I asked my Neurologist why I started having RLS and he could not give me an answer. He did do a blood test but I forgot to ask what the results were at my last appointment.
I showed the Dermatologist the scars under my cheek and chin which were painful to the touch. I could not touch my face within one inch of the scars and when I touched the scars, it felt like razors blades cutting in to my skin. The Dermatologist recommend a product that you can get over the counter called MEPIFORM. MEPIFORM is a thin, discrete and flexible scar dressing (like a bandage) with a soft silicone layer. It flattens, softens and fades red and raised hypertrophic scars and keloids. It is waterproof and can be worn while bathing and showering. You can cut to size to fit your scar. This is a god-send. Everyone should use this. It comes in a big sheet and you cut a very small piece to put over your scar. You wear it as much as you can, a minimum on 12 hours a day to 24 hours a day. Keep wearing the same strip as long as you can until it won`t stick any longer. Within a week of wearing the strip, my scars were no longer painful. I have been wearing them for a couple weeks now and I can already see an improvement. Every surgeon should recommend these to their patients! See http://www.molnlycke.com/patient/en/Products/Wound/Mepiform/
I had my 6 month checkup with Dr. Psutka and am now in a stable - holding pattern. That is good news!
I saw my Neurologist about my RLS. He gave me a prescription to treat it and it has made a big difference. It took a couple weeks for it to really start working, but it is really helping. I can now fall asleep at night and no longer wake up in the middle of the night with symptoms. I asked my Neurologist why I started having RLS and he could not give me an answer. He did do a blood test but I forgot to ask what the results were at my last appointment.
5 1/2 Months - RLS
It is July 19th and I am having a problem...... RLS, short form for Restless Leg Syndrome. I call it the hee-bee-jee-bees. It feels like I am trying to crawl out of my own skin. I feel weird sensations in my legs. I have this urge to move my legs when I am sitting or lying down. The only thing that provides instant relief is walking. Stretching does also help once you experience symptoms but takes a bit longer to take effect.
Here is a description of the symptoms from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001810/
Symptoms: RLS leads to sensations in the lower legs between the knee and ankle. The feeling makes you uncomfortable unless you move your legs. These sensations:
To help relieve the symptoms, other than walking, my best advice is to stretch the legs and hips. Yoga is excellent. Before going to bed or resting, stretch your legs. While you are at it, stretch you back and arms as well.
Here are a few descriptions of stretching.
Here is a description of the symptoms from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001810/
Symptoms: RLS leads to sensations in the lower legs between the knee and ankle. The feeling makes you uncomfortable unless you move your legs. These sensations:
- Usually occur at night when you lie down, or sometimes during the day when you sit for long periods of time
- May be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling
- May last for 1 hour or longer
- Sometimes also occur in the upper leg, feet, or arms
- You will feel an irresistible urge to walk or move your legs, which almost always relieves the discomfort.
To help relieve the symptoms, other than walking, my best advice is to stretch the legs and hips. Yoga is excellent. Before going to bed or resting, stretch your legs. While you are at it, stretch you back and arms as well.
Here are a few descriptions of stretching.
- Standing calf stretch: Facing a wall, put your hands against the wall at about eye level. Keep one leg back with the heel on the floor, and the other leg forward. Turn your back foot slightly inward (as if you were pigeon-toed) as you slowly lean into the wall until you feel a stretch in the back of your calf. Hold for 15 to 30 seconds. Repeat 3 times and then switch the position of your legs and repeat the exercise 3 times. Do this exercise several times each day.
- Quadriceps stretch: Stand an arm's length away from the wall with your injured leg farthest from the wall. Facing straight ahead, brace yourself by keeping one hand against the wall. With your other hand, grasp the ankle of your injured leg and pull your heel toward your buttocks. Don't arch or twist your back. Keep your knees together. Hold this stretch for 15 to 30 seconds.
5 Months - Itchy Itchy Itchy - scratch, scratch, scratch and more scratching! (I feel like a dog with fleas! LOL!)
GOOD NEWS! I am not allergic to the prosthetic joint, the metals or the plastic stuff. Whew! What a relief. I still have the rash on my face and have an appointment with a dermatologist in the beginning of August. My surgeon still wants to know what the rash is. He has never seen anything like it before.
BETTER NEWS! My increased pain is letting off. I am not in as much pain lately. It is because it is summertime here in Canada and the weather is pretty much stable. We've had hotter weather than normal and it's been very humid. Most days, it is too hot to go outside. I've been staying indoors. We have air conditioning but I keep the temperature moderate. Cold air bothers me so I have the temperature between 72 and 75'F - comfortable but not too hot. My dogs love the air conditioning. Java sleeps on the vent. I love this time of year because I have the least amount of pain for a month or two. Canada has a variety of weather from snow to rain to sun, so it is not the best place to live if you have TMJ problems. However, this is where I live so I just have to adapt.
GOOD NEWS! My depression is back under control. I am on more medication to manage it but it is working. My motivation to do things is restored and I am able to continue making some of my jewelry and crafts. Check out my website at www.zibbet.com/smiley All my items are handmade and include feather wreaths, beautiful necklaces, earrings, hair clips and fascinators. This is something that I highly recommend during your recovery..... If you are not working, have a hobby or something that you enjoy doing and can start and stop anytime. For example, reading, cross-stitching, crafts, gardening etc. You need to have an activity that keeps you amused and entertained. It gives you a sense of belonging and self-worth. This is critical to fending off depression.
BAD NEWS WITH GOOD NEWS! I know that I have gained weight. People can't believe it that I gained weight because with a bad or healing jaw, they wonder how I could gain weight when I have problem eating. It's easy. All the soft foods and good tasting foods are fattening such as ice cream, bread, pasta etc. All the healthy good foods are crunchy and harder like vegetables and proteins like chicken. As a result, I have gained 20 pounds. I now weigh a whopping 147 pounds. You would never know it looking at me. I don't look fat. However, I have lost a lot of muscle mass and I think the medications have a negative effect on my weight and body composition, not to mention they make me drowsy, sleepy and tired with no energy or stamina. As a result, I have started exercising. I walk the dogs around the block in the evening, and try to exercise for 15 to 20 minutes every day. I do some light weights, abs and walking. I will also start doing some yoga while watching tv in the evening to streatch. I must say that the more I exercise, the better I feel and the less drowsy I feel. There are days when I can't get out of bed I am so tired, drowsy and exhausted. But on the days that I can get out of bed, I try to do some exercising. Hopefully I will get back to my pre-surgery weight of 140 pounds by the end of July and then back to pre-sick weight of 130lbs by the end of September. I'll keep you updated on my progress. The best recommendation that I can make is that after surgery, start exercising or doing yoga ASAP.
I thought the itchiness had stopped, but it has started again! No matter how much you scratch, you can never find the itch. It is more frustrating and annoying than anything. The worst thing is when it is itchy at night. Before it was itchy more along the incision line. Now it is itchy where the joint is located. The area and skin feels really tight. My best suggestion is not to scratch, but to rub the are like you are giving a back massage. Rubbing is a bit more effective than scratching.
BAD NEWS! My face is still numb. No changes. The area around the incision line is completely numb. I have four layers of incisions and hundreds of stitches to hold my face together and they are still healing. My cheeks are numb and still hurt when I touch them. I've never had shingles but the pain is like sharp tacks. The surgeon said that my facial nerves are "not normal". That is what is causing my facial pain and the pain in and around my ears. I am still having more pain when the weather changes and the pressure changes. My surgeon says its nerve pain and this won't go away. It's here forever.
BAD NEWS TURNED INTO GOOD NEWS! I still cannot move my eyebrows or forehead. The good thing ladies is that I DON"T HAVE FOREHEAD LINES!!!! IT IS BETTER THAN BOTOX! Finally, this is a benefit of having this surgery. My face looks better than before the surgery because of less lines.
I saw my eye doctor and I do not need surgery to put the gold piece in to close my upper right eyelid. I still have motor damage in the nerve but my eyelid appears to be closing just enough to protect the eye. My eye still waters like crazy and I have to keep applying eye drops every hour. I am now a candidate for a different eye surgery to fix my lower eyelid. My lower eyelid is not high enough and is not closing around the eye properly. As a result, tears do not stay inside causing my eye to water and bright light and wind are very hard on my eye. I go back in late September. If there is no change in the lower eye lid, I will have the surgery to fix it.
IT IS WORTH IT! I don't know if I have mentioned this before in my blog, but I am glad that I had the surgery. Yes, I have numbness and yes I still have pain, but I can eat and my breathing is easier too. Plus I am able to talk and my bite is aligned. I am able to eat almost anything except super hard foods. I even had a steak a few times! I made sure it was a prime rib or a soft high quality steak. I even had a bagel. I eat these "forbidden" foods every once in a while. I know I"m still not supposed to eat these foods but once in a blue moon keeps me happy. After all, you have to keep on living. Thank goodness chocolate melts in your mouth!
BETTER NEWS! My increased pain is letting off. I am not in as much pain lately. It is because it is summertime here in Canada and the weather is pretty much stable. We've had hotter weather than normal and it's been very humid. Most days, it is too hot to go outside. I've been staying indoors. We have air conditioning but I keep the temperature moderate. Cold air bothers me so I have the temperature between 72 and 75'F - comfortable but not too hot. My dogs love the air conditioning. Java sleeps on the vent. I love this time of year because I have the least amount of pain for a month or two. Canada has a variety of weather from snow to rain to sun, so it is not the best place to live if you have TMJ problems. However, this is where I live so I just have to adapt.
GOOD NEWS! My depression is back under control. I am on more medication to manage it but it is working. My motivation to do things is restored and I am able to continue making some of my jewelry and crafts. Check out my website at www.zibbet.com/smiley All my items are handmade and include feather wreaths, beautiful necklaces, earrings, hair clips and fascinators. This is something that I highly recommend during your recovery..... If you are not working, have a hobby or something that you enjoy doing and can start and stop anytime. For example, reading, cross-stitching, crafts, gardening etc. You need to have an activity that keeps you amused and entertained. It gives you a sense of belonging and self-worth. This is critical to fending off depression.
BAD NEWS WITH GOOD NEWS! I know that I have gained weight. People can't believe it that I gained weight because with a bad or healing jaw, they wonder how I could gain weight when I have problem eating. It's easy. All the soft foods and good tasting foods are fattening such as ice cream, bread, pasta etc. All the healthy good foods are crunchy and harder like vegetables and proteins like chicken. As a result, I have gained 20 pounds. I now weigh a whopping 147 pounds. You would never know it looking at me. I don't look fat. However, I have lost a lot of muscle mass and I think the medications have a negative effect on my weight and body composition, not to mention they make me drowsy, sleepy and tired with no energy or stamina. As a result, I have started exercising. I walk the dogs around the block in the evening, and try to exercise for 15 to 20 minutes every day. I do some light weights, abs and walking. I will also start doing some yoga while watching tv in the evening to streatch. I must say that the more I exercise, the better I feel and the less drowsy I feel. There are days when I can't get out of bed I am so tired, drowsy and exhausted. But on the days that I can get out of bed, I try to do some exercising. Hopefully I will get back to my pre-surgery weight of 140 pounds by the end of July and then back to pre-sick weight of 130lbs by the end of September. I'll keep you updated on my progress. The best recommendation that I can make is that after surgery, start exercising or doing yoga ASAP.
I thought the itchiness had stopped, but it has started again! No matter how much you scratch, you can never find the itch. It is more frustrating and annoying than anything. The worst thing is when it is itchy at night. Before it was itchy more along the incision line. Now it is itchy where the joint is located. The area and skin feels really tight. My best suggestion is not to scratch, but to rub the are like you are giving a back massage. Rubbing is a bit more effective than scratching.
BAD NEWS! My face is still numb. No changes. The area around the incision line is completely numb. I have four layers of incisions and hundreds of stitches to hold my face together and they are still healing. My cheeks are numb and still hurt when I touch them. I've never had shingles but the pain is like sharp tacks. The surgeon said that my facial nerves are "not normal". That is what is causing my facial pain and the pain in and around my ears. I am still having more pain when the weather changes and the pressure changes. My surgeon says its nerve pain and this won't go away. It's here forever.
BAD NEWS TURNED INTO GOOD NEWS! I still cannot move my eyebrows or forehead. The good thing ladies is that I DON"T HAVE FOREHEAD LINES!!!! IT IS BETTER THAN BOTOX! Finally, this is a benefit of having this surgery. My face looks better than before the surgery because of less lines.
I saw my eye doctor and I do not need surgery to put the gold piece in to close my upper right eyelid. I still have motor damage in the nerve but my eyelid appears to be closing just enough to protect the eye. My eye still waters like crazy and I have to keep applying eye drops every hour. I am now a candidate for a different eye surgery to fix my lower eyelid. My lower eyelid is not high enough and is not closing around the eye properly. As a result, tears do not stay inside causing my eye to water and bright light and wind are very hard on my eye. I go back in late September. If there is no change in the lower eye lid, I will have the surgery to fix it.
IT IS WORTH IT! I don't know if I have mentioned this before in my blog, but I am glad that I had the surgery. Yes, I have numbness and yes I still have pain, but I can eat and my breathing is easier too. Plus I am able to talk and my bite is aligned. I am able to eat almost anything except super hard foods. I even had a steak a few times! I made sure it was a prime rib or a soft high quality steak. I even had a bagel. I eat these "forbidden" foods every once in a while. I know I"m still not supposed to eat these foods but once in a blue moon keeps me happy. After all, you have to keep on living. Thank goodness chocolate melts in your mouth!
4 Months - The bump in the road
Two things have been bothering me lately; my depression and increased pain.
I have really been feeling depressed lately, so much that I made an appointment with my family doctor. I am wondering if all my sleeping and drowsiness is not only from all the medication that I am taking and the pain, but if it is related to my depression. I feel like I can cry at any time but I don`t know why I am crying. The only word that can describe how I am feeling is òverwhelmed. My brother asked me if I was feeling sorry for myself, and I didn`t believe that is was a true statement. However when I think of it now, I do feel sorry for myself because my life has been turned upside down.
On May 14th, my family doctor added another stronger anti-depressent medication to my mix of meds. My husband calls my mix of drugs `the stew` because I take so many. I go back in 8 days to see my family doctor for a follow-up on 22nd. I have a history of depression which started when I was in highschool and am now classified as having major depression. You yourself may not feel depressed after or before your surgery. Everyone`s situation, circumstances and experience is different.
My pain has become daily and has increased in intensity since I had the surgery. Prior to surgery, I would only get a pressure type pain when the weather changed. It was around my ear and affected my left side more than my right. My ears would not `pop`. Lately, I have been having that pain daily even when the weather has been nice and sunny out and has not changed. It feels like a severe headache, but the pain radiates around my ear and temple on the left side. I try to pop my ears but I can`t. They feel full and I hear a squeeking noise when I try to pop them using the hold the nose and breathe trick. Also, my incision line has been very red. I have some small red bumps on my right side just underneath the ear and the incision line is very bumpy. My husband thinks that I got a rash from not washing my face properly, which I`m sad to say is very true. With all the nerve problems I`ve had, I have avoided touching my face including washing it. I have an appointment later today with my surgeon to see what is going on.
At the appointment with Dr. Psutka to review my rash, he took pictures to document what was happening. He did a skin test. He has a sample of the cobalt and a titanium and taped the samples which look like watch batteries to the top of my arm. He was out of the plastic poly- ? sample and had to order more. I`ll test that when it comes in. I report back to him on 22nd to review the result.
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3 Months - Arch Bars Removed!
The itching it driving me crazy!!!! Most of my face near the incision is numb so I can't feel anything when I touch that area. It is itchy along the incision line but when I go to scratch, I feel nothing because the top skin is numb but the itching is deep in the tissue. I am going nuts!!! All I want to do is scratch. My surgeon said that there are 4 layers of stitches. Can you believe that? Four layers. I swear that all at least one of those layers is itchy at any given moment in time. I know the itching means that the incisions and tissue is healing which is a good thing.
The incision line also feels very tight. I have to keep applying cream on it. The skin around the incision is tight because it is healing. I wish my surgeon could have put a couple incisions near my temple and forehead to tighten the skin there and give me a face lift!!!!! I am in desperate need of an eye lift!
I received a letter with the date for my appointment with the dermatologist. It is July 25th. I am using the cream the doctor gave me but the rash is not going away. When I rub it on my face, my cheeks and skin goes bright red. The rash goes even more red. The rash is still there and hasn't gotten any better.
I had an appointment for May 3rd to have my Arch bars (wires) removed from my jaw. Luckily there was a cancellation so I had them removed on April 19th. It was such a relief. I was so happy to have them removed. An Anesthesiologist started by putting an IV line in the top of my hand. They got me comfy and gave me a blanket to keep me warm. They placed electrodes on my chest and started taking my vitals. That's all I remember. I woke up two hours later. My mouth was completely frozen. I had over 20 needles of freezing to freeze my mouth. I could hardly talk. My throat was really sore and I felt nauscious so they gave me something to take away the nausea. My husband came to pick me up and I went home.
My entire mouth and lips were frozen. I had no feeling what-so-ever in my mouth. I felt like I was drooling and my lips were humongous. I wanted to drink something but couldn't even use a straw because I couldn't get my lips around the straw in order to create suction. I had to tilt my head back and pour the water into my mouth and try and swallow. It was too funny. I spilled more water on me than I got into my mouth! After about an hour, the freezing started wearing off. My gums were bright red and very sore. I was told to rinse with salt water as many times as possible for the next couple of days. It took about 4 days before the gums started to feel somewhat better. They stayed red for almost 2 weeks. I had lots of little cuts in my gums which took over a week to heal. Within a week, they were well on their way to healing. I was so relieved to have that surgery done and over with.
I have to caution you because that little bit of anesthesia (an hour's worth) really affected me. I was extremely tired afterwards. I was sleeping night and day. Any little bit of activity was exhausting. It took about 3 weeks to feel like it got out of my system. I didn't think it would affect me that much but it did. Remember, we just had major surgery less than 3 months ago and it takes longer for our system to heal and recoup.
I had an appointment with my Neurologist on April 26th. He said that my right eyelid should regain movement because the nerve is still in tact. He is optimistic that it will improve. He has no idea why my forehead is not moving. Hopefully my face will regain all movement within time. I have an appointment with my eye doctor in June to put a gold piece as a weight in my eyelid if it doesn't regain movement by then. However, my Neurologist told me to see him before I do anything with my eyelid. My next appointment with my Neurologist is August 7th (because he is going on vacation). I think I will change my appointment with my eye doctor to after I see my Neurologist.
My pain seems to be getting worse lately. The nerves in my teeth are going crazy with pain. I feel like any teeth that haven't had a root canal or haven't been extracted are in agonizing pain. The worst side is my lower right side. I can't even drink water right from the tap because it hurts. Cold water is a no-no. I can't eat or drink anything cold. When I touch the outter side of my farthest back tooth, I hit the roof in pain. I went and saw my family dentist to have her take a look. I suspect that it is just sensitivity, since all the nerves in my mouth and teeth are firing like crazy at will. I want to make sure that my tooth doesn't need a root canal. The back tooth looks like it has tooth decay (brown line) but it could be a stain from the Peridex mouthwash that I was using after the surgery. My dentist took xrays and couldn't really see anything wrong. There is a small shadow that she needs to keep her eye on. But otherwise the brown area was not soft. If it was actually decay, it would be soft but it wasn't. She decided to go the conservative approach to treatment and gave me rapid relief Sensydyne toothpaste to use. THIS IS A MUST! If your nerves are hay-wire and acting strange, most likely you will need to desensitize the nerves in your teeth. Start using a FAST ACTING TOOTHPASTE FOR SENSITIVE TEETH right away, as soon as you start brushing after surgery. It will make a difference in the long run as you recover. And don't forget to keep using your Waterpik to clean your teeth and gums, even after your Arch bars (Wires) are removed.
After my dentist appointment, the centre of my right cheek became completely numb to the touch. This makes me think that my tooth pain is nerve related and there is nothing wrong with my teeth.
Another thing that I started doing that has made me feel better is take a really good quality multi-vitamin. I am taking a very expensive good quality one for 2 months and then I will switch to something that is still high quality, but not as expensive.
I am finding that I am extremely tired. I don't know if it is because of the pain, the meds etc., but I am sleeping 15 hours a day. For example, I go to sleep at 10pm. I get up at 7am to feed the dogs. I go back to bed at 8:30am. I stay in bed till 12:30pm. I get up to look after the dogs and have something to eat. I go back to bed at 1:30pm and sleep until my husband gets home at 4:30pm. I watch some TV and make dinner. After dinner at about 7:30pm, I go back up to bed until 9pm. I stay up for a couple hours and go back to bed at about 10:30pm. When I add up my sleeping time, it is 17.5 hours! The problem is I sleep but I don't feel refreshed. I feel tired, exhausted, drowsy, sleepy. I know that I am feeling more depressed lately. When I try to find a word to describe why I am depressed, the only thing that I can come up with is "overwhelmed". I think the whole surgery experience has been overwhelming for me and very stressful. Even though I am 3 months post surgery, I am still having pain and complications and feel overwhelmed. I believe that I need help. I will reach out to my family doctor this week. We have both a social worker and psychiatrist at my doctor's office. Perhaps one of them can help. I am already taking anti-depressant medication but I think I need emotional help.
The incision line also feels very tight. I have to keep applying cream on it. The skin around the incision is tight because it is healing. I wish my surgeon could have put a couple incisions near my temple and forehead to tighten the skin there and give me a face lift!!!!! I am in desperate need of an eye lift!
I received a letter with the date for my appointment with the dermatologist. It is July 25th. I am using the cream the doctor gave me but the rash is not going away. When I rub it on my face, my cheeks and skin goes bright red. The rash goes even more red. The rash is still there and hasn't gotten any better.
I had an appointment for May 3rd to have my Arch bars (wires) removed from my jaw. Luckily there was a cancellation so I had them removed on April 19th. It was such a relief. I was so happy to have them removed. An Anesthesiologist started by putting an IV line in the top of my hand. They got me comfy and gave me a blanket to keep me warm. They placed electrodes on my chest and started taking my vitals. That's all I remember. I woke up two hours later. My mouth was completely frozen. I had over 20 needles of freezing to freeze my mouth. I could hardly talk. My throat was really sore and I felt nauscious so they gave me something to take away the nausea. My husband came to pick me up and I went home.
My entire mouth and lips were frozen. I had no feeling what-so-ever in my mouth. I felt like I was drooling and my lips were humongous. I wanted to drink something but couldn't even use a straw because I couldn't get my lips around the straw in order to create suction. I had to tilt my head back and pour the water into my mouth and try and swallow. It was too funny. I spilled more water on me than I got into my mouth! After about an hour, the freezing started wearing off. My gums were bright red and very sore. I was told to rinse with salt water as many times as possible for the next couple of days. It took about 4 days before the gums started to feel somewhat better. They stayed red for almost 2 weeks. I had lots of little cuts in my gums which took over a week to heal. Within a week, they were well on their way to healing. I was so relieved to have that surgery done and over with.
I have to caution you because that little bit of anesthesia (an hour's worth) really affected me. I was extremely tired afterwards. I was sleeping night and day. Any little bit of activity was exhausting. It took about 3 weeks to feel like it got out of my system. I didn't think it would affect me that much but it did. Remember, we just had major surgery less than 3 months ago and it takes longer for our system to heal and recoup.
I had an appointment with my Neurologist on April 26th. He said that my right eyelid should regain movement because the nerve is still in tact. He is optimistic that it will improve. He has no idea why my forehead is not moving. Hopefully my face will regain all movement within time. I have an appointment with my eye doctor in June to put a gold piece as a weight in my eyelid if it doesn't regain movement by then. However, my Neurologist told me to see him before I do anything with my eyelid. My next appointment with my Neurologist is August 7th (because he is going on vacation). I think I will change my appointment with my eye doctor to after I see my Neurologist.
My pain seems to be getting worse lately. The nerves in my teeth are going crazy with pain. I feel like any teeth that haven't had a root canal or haven't been extracted are in agonizing pain. The worst side is my lower right side. I can't even drink water right from the tap because it hurts. Cold water is a no-no. I can't eat or drink anything cold. When I touch the outter side of my farthest back tooth, I hit the roof in pain. I went and saw my family dentist to have her take a look. I suspect that it is just sensitivity, since all the nerves in my mouth and teeth are firing like crazy at will. I want to make sure that my tooth doesn't need a root canal. The back tooth looks like it has tooth decay (brown line) but it could be a stain from the Peridex mouthwash that I was using after the surgery. My dentist took xrays and couldn't really see anything wrong. There is a small shadow that she needs to keep her eye on. But otherwise the brown area was not soft. If it was actually decay, it would be soft but it wasn't. She decided to go the conservative approach to treatment and gave me rapid relief Sensydyne toothpaste to use. THIS IS A MUST! If your nerves are hay-wire and acting strange, most likely you will need to desensitize the nerves in your teeth. Start using a FAST ACTING TOOTHPASTE FOR SENSITIVE TEETH right away, as soon as you start brushing after surgery. It will make a difference in the long run as you recover. And don't forget to keep using your Waterpik to clean your teeth and gums, even after your Arch bars (Wires) are removed.
After my dentist appointment, the centre of my right cheek became completely numb to the touch. This makes me think that my tooth pain is nerve related and there is nothing wrong with my teeth.
Another thing that I started doing that has made me feel better is take a really good quality multi-vitamin. I am taking a very expensive good quality one for 2 months and then I will switch to something that is still high quality, but not as expensive.
I am finding that I am extremely tired. I don't know if it is because of the pain, the meds etc., but I am sleeping 15 hours a day. For example, I go to sleep at 10pm. I get up at 7am to feed the dogs. I go back to bed at 8:30am. I stay in bed till 12:30pm. I get up to look after the dogs and have something to eat. I go back to bed at 1:30pm and sleep until my husband gets home at 4:30pm. I watch some TV and make dinner. After dinner at about 7:30pm, I go back up to bed until 9pm. I stay up for a couple hours and go back to bed at about 10:30pm. When I add up my sleeping time, it is 17.5 hours! The problem is I sleep but I don't feel refreshed. I feel tired, exhausted, drowsy, sleepy. I know that I am feeling more depressed lately. When I try to find a word to describe why I am depressed, the only thing that I can come up with is "overwhelmed". I think the whole surgery experience has been overwhelming for me and very stressful. Even though I am 3 months post surgery, I am still having pain and complications and feel overwhelmed. I believe that I need help. I will reach out to my family doctor this week. We have both a social worker and psychiatrist at my doctor's office. Perhaps one of them can help. I am already taking anti-depressant medication but I think I need emotional help.
2 Months
I developed a rash on my cheeks. I thought it was lupus or rosacea. I went to Shoppers Drug Mart and spoke to the Cosmetologist. She recommend a cream for Rosacea to diminish the redness and also another cream to help my scar heal. The Rosacea cream was not working. The redness persisted. I started to get very itchy around my incision and on my head at night. It would keep me from falling asleep.
At my visit to Dr. Psutka, he saw the rash and thought that I might be having a reaction to the metal in the prosthesis. I became increasingly itchy. I was now itchy during day, not only on my head (scalp) but on my entire face. He told me to go see my family doctor about the rash. The nurse took pictures of my face with the camera to document what was ha penning. I called my family doctor that day and told them the situation and they got me an appointment right away with my GP. My family doctor thought it was more like dermatitis. He gave me a cream to apply twice a day and also referred me to a Dermatologist. I did have a Dermatologist a couple years ago but she moved away so I needed the referral to someone new.
I am now waiting for a call from my doctors office with the date of the appointment with a Dermatologist. My itchiness is so bad at night that I put Benadryl itching cream on my scalp and face. I am scared to take Benadryl or some kind of allergy medication because it too will make me sleepier and I don't know how it would react with all the drugs in my stew.
At one of my post-op checkups, my surgeon prescribed Gabapentin or Neurontin to help relieve the nerve pain. I was getting electrical type shocks in my face and a burning painful feeling in my cheeks. When I got the prescription filled, the pharmacist told me that it would make me sleepy. Oh great I thought. Another drug to make me sleepy! I was not too happy about that. Before I would start taking the new medication, I knew that I needed to remove something from my stew of drugs. I decided to remove the Hydromorphone because my pain had changed. My joint pain was less but my nerve pain had increased. I was basically exchanging one pain killer for another.
I also had to ween myself off of the Hydromorphone because I was too tired. Between the narcotics and the muscle relaxant, I was beyond drowsy. I was falling asleep all the time, standing up, sitting down eating, watching TV. It didn't matter where. I would fall asleep. Once I was off the hydromorphone, I was not as drowsy. I am still very sleepy and drowsy, but at least I wasn't falling asleep standing up. I have days where I wake up and are able to stay away for a few hours and then go back to bed. I have other days where I wake up and have to go immediately back to bed and basically stay in bed all day. It was not uncommon for me to be sleeping when my husband came home at 4pm. I lived in my pajamas most of the time.
I didn't start driving until close to 2 months after surgery. I did not feel alert enough to drive and focus. My husband took me everywhere. Plus, every time I would get in the car my eye would start watering. At about 2 months, my eye started to improve slightly and wouldn't start watering for 10 minutes, so I was able to drive occasionally to local places like doctors office, grocery store etc when my husband was unable to take me. Many days I opted not to drive and had to cancel appointments. I did drive occasionally but it was extremely limited and still is.
I am finding that my memory since the surgery has been extremely bad. I can't remember what I did or things that happened two hours ago. I literally feel stupid. I also have problems picking words. As an example, when I was writing this blog a few minutes ago, I couldn't remember the name for the recommendation that the doctor gives you to see another doctor. It wasn't until a second or two ago that I remembered that the word is "referral". My husband finds it very frustrating when he talks to me because I can't remember words and have difficulties describing the word I forgot, I forget what I am saying in the middle of a sentence, and sometimes I don't make any sense at all. Plus I still mumble a bit when I talk which doesn't help. I am so used to talking through my teeth, that I forget I can move my mouth!
At my visit to Dr. Psutka, he saw the rash and thought that I might be having a reaction to the metal in the prosthesis. I became increasingly itchy. I was now itchy during day, not only on my head (scalp) but on my entire face. He told me to go see my family doctor about the rash. The nurse took pictures of my face with the camera to document what was ha penning. I called my family doctor that day and told them the situation and they got me an appointment right away with my GP. My family doctor thought it was more like dermatitis. He gave me a cream to apply twice a day and also referred me to a Dermatologist. I did have a Dermatologist a couple years ago but she moved away so I needed the referral to someone new.
I am now waiting for a call from my doctors office with the date of the appointment with a Dermatologist. My itchiness is so bad at night that I put Benadryl itching cream on my scalp and face. I am scared to take Benadryl or some kind of allergy medication because it too will make me sleepier and I don't know how it would react with all the drugs in my stew.
At one of my post-op checkups, my surgeon prescribed Gabapentin or Neurontin to help relieve the nerve pain. I was getting electrical type shocks in my face and a burning painful feeling in my cheeks. When I got the prescription filled, the pharmacist told me that it would make me sleepy. Oh great I thought. Another drug to make me sleepy! I was not too happy about that. Before I would start taking the new medication, I knew that I needed to remove something from my stew of drugs. I decided to remove the Hydromorphone because my pain had changed. My joint pain was less but my nerve pain had increased. I was basically exchanging one pain killer for another.
I also had to ween myself off of the Hydromorphone because I was too tired. Between the narcotics and the muscle relaxant, I was beyond drowsy. I was falling asleep all the time, standing up, sitting down eating, watching TV. It didn't matter where. I would fall asleep. Once I was off the hydromorphone, I was not as drowsy. I am still very sleepy and drowsy, but at least I wasn't falling asleep standing up. I have days where I wake up and are able to stay away for a few hours and then go back to bed. I have other days where I wake up and have to go immediately back to bed and basically stay in bed all day. It was not uncommon for me to be sleeping when my husband came home at 4pm. I lived in my pajamas most of the time.
I didn't start driving until close to 2 months after surgery. I did not feel alert enough to drive and focus. My husband took me everywhere. Plus, every time I would get in the car my eye would start watering. At about 2 months, my eye started to improve slightly and wouldn't start watering for 10 minutes, so I was able to drive occasionally to local places like doctors office, grocery store etc when my husband was unable to take me. Many days I opted not to drive and had to cancel appointments. I did drive occasionally but it was extremely limited and still is.
I am finding that my memory since the surgery has been extremely bad. I can't remember what I did or things that happened two hours ago. I literally feel stupid. I also have problems picking words. As an example, when I was writing this blog a few minutes ago, I couldn't remember the name for the recommendation that the doctor gives you to see another doctor. It wasn't until a second or two ago that I remembered that the word is "referral". My husband finds it very frustrating when he talks to me because I can't remember words and have difficulties describing the word I forgot, I forget what I am saying in the middle of a sentence, and sometimes I don't make any sense at all. Plus I still mumble a bit when I talk which doesn't help. I am so used to talking through my teeth, that I forget I can move my mouth!
Fourth Week to 2 Months
I was now eating normal foods and able to use adult size cutlery.
I had my appointment with the eye doctor on March 15th. He was optimistic that my eye would start blinking. He instructed me to use eye drops every hour and to force a blink every minute. He said that if my eye was not blinking in 3 months, he would put a gold piece in my eyelid as a weight to permanently lower my eyelid. My eyelid would always be partly closed, but it would protect the eye. I made my next appointment for June 13th.
I had my appointment with the eye doctor on March 15th. He was optimistic that my eye would start blinking. He instructed me to use eye drops every hour and to force a blink every minute. He said that if my eye was not blinking in 3 months, he would put a gold piece in my eyelid as a weight to permanently lower my eyelid. My eyelid would always be partly closed, but it would protect the eye. I made my next appointment for June 13th.
Third Week
As the weeks went by, my progress started to slow down. By the third week, the bulk of my swelling had gone away. I was starting to look more like myself. I was also feeling better. To me it felt like the anesthesia had worn off and was out of my system. Whether that's true or not, I don't know but I was feeling better and that was all that mattered.
I continued to use my Therabite every day. I was also starting to really hate my Arch Bars. Every time they moved, it was painful. They would rub against my gums and cause sores. My gums were red. I was using the Peridex mouth wash and toothpaste for sensitive teeth. This helped but the wire ends kept sticking out. The wax would get soft and loosen off on some very sharp points. I had an entire strip of wax along the top and bottom Arch Bars. It was the only way to stop the sharp ends from cutting me.
In the third week, I started eating more regular foods. I would have one meal of soft foods, and then one meal of more normal foods. I would have to cut up the normal foods into tiny small pieces because chewing was still very painful. I was not able to eat any crisp vegetables and I was loathing for a nice big salad.
People who came to visit me thought that I was looking really good for having such a major surgery.
I continued to use my Therabite every day. I was also starting to really hate my Arch Bars. Every time they moved, it was painful. They would rub against my gums and cause sores. My gums were red. I was using the Peridex mouth wash and toothpaste for sensitive teeth. This helped but the wire ends kept sticking out. The wax would get soft and loosen off on some very sharp points. I had an entire strip of wax along the top and bottom Arch Bars. It was the only way to stop the sharp ends from cutting me.
In the third week, I started eating more regular foods. I would have one meal of soft foods, and then one meal of more normal foods. I would have to cut up the normal foods into tiny small pieces because chewing was still very painful. I was not able to eat any crisp vegetables and I was loathing for a nice big salad.
People who came to visit me thought that I was looking really good for having such a major surgery.
Second Week
I spent my time sleeping. When I say sleeping, I mean 14 to 16 hours a day. Any activity would leave me exhausted. Even going up the stairs was tiring. At times, I couldn't keep my eyes open. I would fall asleep standing up, eating dinner..... you get the idea. My husband had to do all the housework. My whole body just felt "blah". The swelling had subsided alot after the first week. My husband said that I no longer looked like a bobble head. My husband has a sarcastic and strange sense of humor. I found humor to be very helpful in my recovery. He would make me laugh. His idea of physiotherapy for TMJ is that they give you a pack of gum and after you finished chewing it, your therapy was done.
On Friday February 17th, I went for my post-op checkup at my surgeon's office. This is the first time that I saw him since the surgery. The bandages/tape over my incisions were removed. Some of the ends of the stitches that were poking out were cut off by the nurse. He told me that the incision that I see are the "cosmetic" one and that there were THREE LAYERS OF STITCHES underneath and they could take up to six months to fully dissolve. My eye was still not blinking so he referred me to an eye doctor to have my eye checked out. He also prescribed Flexeril, a muscle relaxant to help relieve the pain of the muscle spasms. This made me even sleepier but it worked and helped relieve the pain. I was instructed to keep using my Therabite five times a day for five minutes.
I started applying Vitamin E to my incisions. I would put it on in the morning and at night. My incisions were healing nicely, but were a bit itchy.
I slowly started eating more solid soft foods like pasta, macaroni and cheese (non-pureed). The only question I bet you are wanting to ask is.... Did I loose weight? The answer is yes. But I didn't loose as much weight as I had thought I would. I only lost 10 pounds. I gained them back pretty quickly. I found ice cream to be my weak point and I ate alot of it! I also had a craving for chocolates that melt in your mouth.
I started moving around the house more. Every day I felt a little better. My husband took me to the grocery store to pick out some foods that I wanted to eat. The trip was exhausting. I would tire out really quick. It was a very short grocery trip.
The more you can move around, the better. It really helps to get rid of the toxins in your body. Go for a walk in your apartment building, or outside if it's nice. Even a trip to the grocery store or local mall is good to walk around. Like I said, the more your move, the better you will feel!
On Friday February 17th, I went for my post-op checkup at my surgeon's office. This is the first time that I saw him since the surgery. The bandages/tape over my incisions were removed. Some of the ends of the stitches that were poking out were cut off by the nurse. He told me that the incision that I see are the "cosmetic" one and that there were THREE LAYERS OF STITCHES underneath and they could take up to six months to fully dissolve. My eye was still not blinking so he referred me to an eye doctor to have my eye checked out. He also prescribed Flexeril, a muscle relaxant to help relieve the pain of the muscle spasms. This made me even sleepier but it worked and helped relieve the pain. I was instructed to keep using my Therabite five times a day for five minutes.
I started applying Vitamin E to my incisions. I would put it on in the morning and at night. My incisions were healing nicely, but were a bit itchy.
I slowly started eating more solid soft foods like pasta, macaroni and cheese (non-pureed). The only question I bet you are wanting to ask is.... Did I loose weight? The answer is yes. But I didn't loose as much weight as I had thought I would. I only lost 10 pounds. I gained them back pretty quickly. I found ice cream to be my weak point and I ate alot of it! I also had a craving for chocolates that melt in your mouth.
I started moving around the house more. Every day I felt a little better. My husband took me to the grocery store to pick out some foods that I wanted to eat. The trip was exhausting. I would tire out really quick. It was a very short grocery trip.
The more you can move around, the better. It really helps to get rid of the toxins in your body. Go for a walk in your apartment building, or outside if it's nice. Even a trip to the grocery store or local mall is good to walk around. Like I said, the more your move, the better you will feel!
First Week - Thursday Feb.9th to Monday February 13th.
I am gonna give it to you straight up. The first week is absolutely brutal. If you can get through that, you are well on your way to recovery. I found that the swelling was very painful and uncomfortable. Your face feels like the skin is stretched beyond its limits. Make sure you bring a facial moisturizer to keep your skin soft and subtle.
It wasn't until Thursday that I started to become more alert and less stupid. I realized that I had nerve damage in my face. I couldn't move my forehead or my eyebrows. My right eye lid was not blinking and closing properly. Parts of my cheeks and around my scars were numb. Parts of my face and cheeks were painful to the touch. When I touched them it felt like razor blades scraping them and I had a burning painful feeling. I also had a lot of tingling around my chin. I basically had facial paralysis on the right side of my face. Because my eyelid would not blink, my vision became blurry quickly and my eye was constantly watering. I knew that nerve damage was a frequent complication and accepted it. The interns told me that it could take a few months to over a year for the nerves to heal and there was a possibility that the damage could be permanent. They also gave me some wax to put over the wire ends that were sticking out in my mouth from the Arch Bars.
This was the reason that I did not continue my blog when I got home for all those that were following along. I found looking a computer screen to be very difficult because it was blurry and I couldn't read anything. Plus, my eye would start watering (tearing) when I tired to focus. I was not able to use the computer so my entry into my blog had be put on hold.
I was realeased from the hospital on Thursday evening. I lived on the couch in our basement because it was completely dark. My eyes were very sensitIve to the dark. I could put a few pillows against the arm of the couch and lay back and rest my back on pillows and my head on the arm rest. Later on, I migrated to my lazy boy reclining chair during the day but had to keep blinds closed to block out the sunlight.. I could recline but still keep my head elevated. I found my bed to be very uncomfortabe with two pillows. I didn't start sleeping in my bed until the third week home.
I started using my Therabite to exercise my jaw. It hurt like hell. I was told to use an ice pack for 10 minutes prior to using the Therabite. My muscles around my jaw were cramping something fierce and causing me alot of pain, especially at night. Nothing would help relieve the pain.
Day by day I would see progress. Every day the swelling would go down little by little. Every day I would start feeling better.
I ate pretty much the first day or so home using a syringe. I slowly progressed to soft foods like mashed potatoes, cream of wheat, oatmeal, and soup. I would eat everything using a baby spoon. I sent my husband to Costco to buy a waterpik. I highly recommend getting one. It was helpful to clean the food from my Arch Bars and to help get rid of the tartar because I couldn't brush the inside of my mouth.
It wasn't until Thursday that I started to become more alert and less stupid. I realized that I had nerve damage in my face. I couldn't move my forehead or my eyebrows. My right eye lid was not blinking and closing properly. Parts of my cheeks and around my scars were numb. Parts of my face and cheeks were painful to the touch. When I touched them it felt like razor blades scraping them and I had a burning painful feeling. I also had a lot of tingling around my chin. I basically had facial paralysis on the right side of my face. Because my eyelid would not blink, my vision became blurry quickly and my eye was constantly watering. I knew that nerve damage was a frequent complication and accepted it. The interns told me that it could take a few months to over a year for the nerves to heal and there was a possibility that the damage could be permanent. They also gave me some wax to put over the wire ends that were sticking out in my mouth from the Arch Bars.
This was the reason that I did not continue my blog when I got home for all those that were following along. I found looking a computer screen to be very difficult because it was blurry and I couldn't read anything. Plus, my eye would start watering (tearing) when I tired to focus. I was not able to use the computer so my entry into my blog had be put on hold.
I was realeased from the hospital on Thursday evening. I lived on the couch in our basement because it was completely dark. My eyes were very sensitIve to the dark. I could put a few pillows against the arm of the couch and lay back and rest my back on pillows and my head on the arm rest. Later on, I migrated to my lazy boy reclining chair during the day but had to keep blinds closed to block out the sunlight.. I could recline but still keep my head elevated. I found my bed to be very uncomfortabe with two pillows. I didn't start sleeping in my bed until the third week home.
I started using my Therabite to exercise my jaw. It hurt like hell. I was told to use an ice pack for 10 minutes prior to using the Therabite. My muscles around my jaw were cramping something fierce and causing me alot of pain, especially at night. Nothing would help relieve the pain.
Day by day I would see progress. Every day the swelling would go down little by little. Every day I would start feeling better.
I ate pretty much the first day or so home using a syringe. I slowly progressed to soft foods like mashed potatoes, cream of wheat, oatmeal, and soup. I would eat everything using a baby spoon. I sent my husband to Costco to buy a waterpik. I highly recommend getting one. It was helpful to clean the food from my Arch Bars and to help get rid of the tartar because I couldn't brush the inside of my mouth.
Day Two - Wed. February 8th, 2012
NOTE: I know that these pictures of me are not glamorous and it is embarrassing to have these posted on the internet. However, I believe that it is important for others to see exactly what I looked like post surgery, to see the swelling and incisions and the healing process.
To be completely honest, this day was brutal. I could feel something in my mouth like stitches all along the upper and lower gumline, inside and outside my teeth. I could put my teeth together but my teeth would chatter. I was told that this was due to muscle spasms. I later found out that my jaw and teeth were wired using Arch Bars but instead of using wire to close the jaw, I was to manually put in elastics. This would help to re-align my bite and to keep my jaw from dislocating when I was sleeping.
The next morning, i was excited because my mom was coming to see me. My husband could not come until he finished work. My mom was bringing my knapsaack with my toiletries and clothes. I tried to get out of bed and realized that I had an IV line connected to my wrist. I got the IV trolley ready and then tried to step out of bed. I had no idea why I was stuck. There was a tube attached to this unit on the bed. I then realized that i had a catheter and I was going nowhere. I rang for the nurse and asked them to remove it. I had no idea it was there until I tried to get out of bed. Not only are you mentally stupid, you are physically challenged!
The nurse soon removed it. What a relief. I was able to roll my IV unit to the washroom. When I got there, i was shocked. I looked in the mirror and was stunned. I could not believe how swollen my face was. My head was twice the size. I thought I looked like a cabbage patch doll on steroids or a puff-a-lump. Not only was my face swollen, but every part of my body. My fingers looked like sausages and my feet and ankles were like balloons. I felt like I had gained 50 pounds. My lips were swollen like I had too many botox injections. I could not stick my tongue out my lips were so swollen. I had no bruising except where the bandages were. I just stood there because I could not believe i was looking at myself. I then I slightly opened my mouth and lips and stood there for another few minutes in disbelief. There were these wires in my mouth and around my teeth. They were painful. The wires had sharp ends and were digging into my gums and cheek. (I found out later on that the wires are called Arch Bars.) I had no problems going pee into the "hat" the nurse left for me to see what the volume was. I felt like a little kid with my mommy checking to see if I actually did go pee pee.
My mom came to visit me in the morning. She had to take a double look at me because she didn't recognize me my head was so swollen. I was able to open my mouth a couple centimeters. I was a pro at talking without moving my jaw from so many years of practice waiting for surgery so I was able to talk. My mom ended up sitting in the chair reading while i napped for most of the day because I didnt feel like talking and was still in that stupid mode. One time when i went to the washroom on my won, the nurse said to my mom "she can go to the bathroom so she is ready to go home". My mom was shocked to say the least and told me not to let them send me home until I was ready to go home.
My mom had brought me my Therabite which is a tool to exercise your jaw. I was told by my surgeon to start using it immediately, but I couldn't open my mouth wide enough to start using it. I was also still drinking out of a syringe. They brought me a liquid lunch and for dinner I had a soft diet. I used the baby spoon I had brought from home to eat some pureed macaroni and cheese.
My mom left and I was waiting for my husband to show up. The two interns who got me ready for surgery and who participated in my surgery came to check up on me. They said that my joints were severly diseased and that the left had a big gouge in it. They said that it was a good thing that I had the surgery done. They did some quick little tests. They asked me to smile, pucker my lips, raise my eyebrows and close my eyes. They told me that my right eye was not closing properly and said that they would get me some eye drops. I was still in stupid mode so I didn't ask any questions, nor did I realize that my right eye was not working properly. They gave me these elastics and explained how to use them. They told me to put two on each side before bedtime.
My husband came and surprised me with two stuffed doggy animals with little red hearts on their heads. It was the 7th of February, so the hearts were perfect with Valentines day coming shortly. They looked like my two dogs; Java and Wilson. it really cheered me up. (see picture below)
After he left, I went to put the elastics in my mouth. I went in front of the mirror in the bathroom. I attempted to put one on and I got it stuck. I couldnt get it out. Everytime I tried, it got more painful. I eventually gave up. I went to the nurses desk to ask for help. Luckily there was someone from the oral surgery depaertment there. He went and got some tools and came and removed the stuck elastic. Now when I look back at what happened, I realize that I was still in stupid mode and my eyesight was blurry and I could not see the hooks where i was supposed to put the elastics on. That's why I got the elastic twisted and stuck. That was a big ooops!
If you think you will be able to sleep at the hospital, you are wrong. I found it very hard to sleep. There were too many interruptions with nurses coming in to check my vitals ansd give me meds. I also found it hard to sleep sitting up. You have to keep your head elevated all the time. They instructed me to always have two pillows or more when I slept at home.
To be completely honest, this day was brutal. I could feel something in my mouth like stitches all along the upper and lower gumline, inside and outside my teeth. I could put my teeth together but my teeth would chatter. I was told that this was due to muscle spasms. I later found out that my jaw and teeth were wired using Arch Bars but instead of using wire to close the jaw, I was to manually put in elastics. This would help to re-align my bite and to keep my jaw from dislocating when I was sleeping.
The next morning, i was excited because my mom was coming to see me. My husband could not come until he finished work. My mom was bringing my knapsaack with my toiletries and clothes. I tried to get out of bed and realized that I had an IV line connected to my wrist. I got the IV trolley ready and then tried to step out of bed. I had no idea why I was stuck. There was a tube attached to this unit on the bed. I then realized that i had a catheter and I was going nowhere. I rang for the nurse and asked them to remove it. I had no idea it was there until I tried to get out of bed. Not only are you mentally stupid, you are physically challenged!
The nurse soon removed it. What a relief. I was able to roll my IV unit to the washroom. When I got there, i was shocked. I looked in the mirror and was stunned. I could not believe how swollen my face was. My head was twice the size. I thought I looked like a cabbage patch doll on steroids or a puff-a-lump. Not only was my face swollen, but every part of my body. My fingers looked like sausages and my feet and ankles were like balloons. I felt like I had gained 50 pounds. My lips were swollen like I had too many botox injections. I could not stick my tongue out my lips were so swollen. I had no bruising except where the bandages were. I just stood there because I could not believe i was looking at myself. I then I slightly opened my mouth and lips and stood there for another few minutes in disbelief. There were these wires in my mouth and around my teeth. They were painful. The wires had sharp ends and were digging into my gums and cheek. (I found out later on that the wires are called Arch Bars.) I had no problems going pee into the "hat" the nurse left for me to see what the volume was. I felt like a little kid with my mommy checking to see if I actually did go pee pee.
My mom came to visit me in the morning. She had to take a double look at me because she didn't recognize me my head was so swollen. I was able to open my mouth a couple centimeters. I was a pro at talking without moving my jaw from so many years of practice waiting for surgery so I was able to talk. My mom ended up sitting in the chair reading while i napped for most of the day because I didnt feel like talking and was still in that stupid mode. One time when i went to the washroom on my won, the nurse said to my mom "she can go to the bathroom so she is ready to go home". My mom was shocked to say the least and told me not to let them send me home until I was ready to go home.
My mom had brought me my Therabite which is a tool to exercise your jaw. I was told by my surgeon to start using it immediately, but I couldn't open my mouth wide enough to start using it. I was also still drinking out of a syringe. They brought me a liquid lunch and for dinner I had a soft diet. I used the baby spoon I had brought from home to eat some pureed macaroni and cheese.
My mom left and I was waiting for my husband to show up. The two interns who got me ready for surgery and who participated in my surgery came to check up on me. They said that my joints were severly diseased and that the left had a big gouge in it. They said that it was a good thing that I had the surgery done. They did some quick little tests. They asked me to smile, pucker my lips, raise my eyebrows and close my eyes. They told me that my right eye was not closing properly and said that they would get me some eye drops. I was still in stupid mode so I didn't ask any questions, nor did I realize that my right eye was not working properly. They gave me these elastics and explained how to use them. They told me to put two on each side before bedtime.
My husband came and surprised me with two stuffed doggy animals with little red hearts on their heads. It was the 7th of February, so the hearts were perfect with Valentines day coming shortly. They looked like my two dogs; Java and Wilson. it really cheered me up. (see picture below)
After he left, I went to put the elastics in my mouth. I went in front of the mirror in the bathroom. I attempted to put one on and I got it stuck. I couldnt get it out. Everytime I tried, it got more painful. I eventually gave up. I went to the nurses desk to ask for help. Luckily there was someone from the oral surgery depaertment there. He went and got some tools and came and removed the stuck elastic. Now when I look back at what happened, I realize that I was still in stupid mode and my eyesight was blurry and I could not see the hooks where i was supposed to put the elastics on. That's why I got the elastic twisted and stuck. That was a big ooops!
If you think you will be able to sleep at the hospital, you are wrong. I found it very hard to sleep. There were too many interruptions with nurses coming in to check my vitals ansd give me meds. I also found it hard to sleep sitting up. You have to keep your head elevated all the time. They instructed me to always have two pillows or more when I slept at home.
SURGERY DAY - Tuesday February 7th, 2012 (Day One)
I arrived at Mount Sinai at 6am. My in-laws drove me and dropped me off at the front doors off University Ave in Toronto Ontario Canada. I went to open the door and it was locked. I tried every door and they were all locked. I ran back to the car (thank goodness they waited) and we drove around to the back, where I found an open door. I thought.... I waited 3 years for this surgery and I am gonna miss it because
the doors are locked??? Too funny!
I went to admitting and checked in and then was sent up to the 5th floor to the waiting area. My name was called within minutes and I was told to change and put the ugly hospital gown on. I waited a bit longer then was taken to the recovery room where I met with Dr. Psutkas 2 female interns who were the nicest ladies. They shaved my head about 2 inches all around my ear and bandaged my entire head up to get me ready for surgery. I waited there for about 20 minutes and then was wheeled into the operating room. An IV line was placed and they placed electrodes on my chest and legs. They gave me anesthesia and it was lights out, sleepy time.
I awoke in recovery long enough to be responsive but fell back asleep. All I can remember is the intern telling me that the surgery was successful and they were able to re-align my bite, which had been dislocated for over 3 years. I do not remember anything else from recovery. I must have fallen back asleep. I was wheeled into my room at around 6:30pm when I awoke. All I remember is seeing that I was in a room with no one next to me and I was next to the window. I feel back asleep.
The nurses brought me lots of water and apple juice and encouraged me to drink as much as I could using this big syringe. After the surgery, you are litterally stupid. Your brain goes on vacation to another country!!. I couldn't work the syringe... something as simple as that. The nurse had to show me. I could feel some cuts in my mouth and that there was something in the roof of my mouth around my teeth. I had no idea what it was. I thought it was stitches. (they werent stitxches, it was the wires from the arch bars)
Throughout the night, I remember nurses coming and going and giving me medication and about midnight, the pain became excrutiating. I was given more pain meds which brought the pain from a 10 out of 10 to a 8 out of 10. Luckily I was drowsy from the anesthesia and fell back asleep. Each time I awoke, I was in pain. Originally it was explained to me by my surgeon that I would be able to manually administer my pain medication as needed via IV pump. Well, that was not true. The Pain control department came and determined that I was already on enough narcotics that additional narcotics were not required. Most people have some reduction in pain immediately after surgery, but I was not one of them. In the morning, I told the nurses that I was still in pain and they called the pain management team to come see me again. They increased my dosage of Dilaudid (Hydromorphone) which is otherwise known as Hospital morphine. This helped to reduce the pain to a 6 out of 10. The nurses came and went during the night taking my vitals, temperature, giving me pain killers, antibiotics and anti-imflammatories via IV, as well as other people from the pharmacy and different departments. ( I do not remember who). I slept but I seemed to be awakened every hour. I really do not remember much about the day which is a good thing!
I went to admitting and checked in and then was sent up to the 5th floor to the waiting area. My name was called within minutes and I was told to change and put the ugly hospital gown on. I waited a bit longer then was taken to the recovery room where I met with Dr. Psutkas 2 female interns who were the nicest ladies. They shaved my head about 2 inches all around my ear and bandaged my entire head up to get me ready for surgery. I waited there for about 20 minutes and then was wheeled into the operating room. An IV line was placed and they placed electrodes on my chest and legs. They gave me anesthesia and it was lights out, sleepy time.
I awoke in recovery long enough to be responsive but fell back asleep. All I can remember is the intern telling me that the surgery was successful and they were able to re-align my bite, which had been dislocated for over 3 years. I do not remember anything else from recovery. I must have fallen back asleep. I was wheeled into my room at around 6:30pm when I awoke. All I remember is seeing that I was in a room with no one next to me and I was next to the window. I feel back asleep.
The nurses brought me lots of water and apple juice and encouraged me to drink as much as I could using this big syringe. After the surgery, you are litterally stupid. Your brain goes on vacation to another country!!. I couldn't work the syringe... something as simple as that. The nurse had to show me. I could feel some cuts in my mouth and that there was something in the roof of my mouth around my teeth. I had no idea what it was. I thought it was stitches. (they werent stitxches, it was the wires from the arch bars)
Throughout the night, I remember nurses coming and going and giving me medication and about midnight, the pain became excrutiating. I was given more pain meds which brought the pain from a 10 out of 10 to a 8 out of 10. Luckily I was drowsy from the anesthesia and fell back asleep. Each time I awoke, I was in pain. Originally it was explained to me by my surgeon that I would be able to manually administer my pain medication as needed via IV pump. Well, that was not true. The Pain control department came and determined that I was already on enough narcotics that additional narcotics were not required. Most people have some reduction in pain immediately after surgery, but I was not one of them. In the morning, I told the nurses that I was still in pain and they called the pain management team to come see me again. They increased my dosage of Dilaudid (Hydromorphone) which is otherwise known as Hospital morphine. This helped to reduce the pain to a 6 out of 10. The nurses came and went during the night taking my vitals, temperature, giving me pain killers, antibiotics and anti-imflammatories via IV, as well as other people from the pharmacy and different departments. ( I do not remember who). I slept but I seemed to be awakened every hour. I really do not remember much about the day which is a good thing!
January 29th to February 5th, 2012.
The pain is getting worse. I have had to triple one of my pain meds. As a result, I am extremely sleepy. I let the dogs outside and I was waiting for them to come back to the door to be let in. I was leaning against the wall and I fell asleep! I woke up as I was falling backwards. I can fall asleep anywhere, anytime. I've been sleeping from 9pm to 4:30pm every day. I have to fight to keep my eyes open. My husband says that I look spaced out like there's no one home. I don't have the energy to fight the pain anymore. On a positive note, sleeping is great because I don't feel the pain and I don't think about the surgery.
When I'm on the computer, I find myself googling TMJD (Temporomandibular Joint Disease/Disorder) and anything related to joint replacement. I guess I am trying to find some sort of comfort that the surgery will go okay. Over the last 3 years, I have researched TMJD thoroughly and although I keep reading articles that I've read previously, I compulsively feel the need to keep searching and reading. My nerves are getting the best of me. I am not just scared, I am TERRIFIED. The closer my surgery date becomes, the more surreal this all feels to me.
The good news is that my asthma is being managed well. I do not feel any tightness in my chest or shortness of breath. I can go up stairs without being short of breath. I am very pleased because having my asthma under control is one less thing to worry about.
I contacted a lady named Terri who had posted in a TMJ forum and who has her story posted on tmj.org. She had her surgery back in 2002 and it was unsuccessful. She was gracious enough to email me back and be there for me like Haley from Australia. I highly recommend finding people who have had the surgery to chat with. Family and friends are great support systems, but no one understands what you are going through better than someone who has gone through it themselves. They understand the intricacies and you will find yourself bonding with them very quickly because you have something in common that becomes an integral part of your life and not only affects you physically, but emotionally and psychologically.
The days just before your surgery are the worst. They were terrible for me because I had been waiting 3 years for surgery. I was a complete basketcase. I was extremely nervous and sick with worry. I think those days were worse than how I felt after the surgery. You will have soooo many questions going through your mind and you will start questioning if you really need the surgery. That's normal. I was scared. No, sorry that is wrong. I was terrified. Don't be afraid to lean on friends and family for support and for a hug. If you are like me, a hug goes a long way. I couldn't even watch TV because I couldn't focus. I was going around the house trying to do things and accomplishing nothing. Don't expect to get housework or stuff done the two days before your surgery. Plan to do those things a few days in advance so that you don't have to worry about those things.
January 27, 28 2012
I am in excruciating pain that won't stop or go away. I would say my pain is an 8 out of 10, where 10 is when I am throwing up. I have not been able to sleep and I am extremely nauseous on the verge of throwing up. I believe it is nerve related pain. It is a sharp pain, like my ear or jaw is being pinched, squished or pulverized to a pulp. There is also a burning pain similar to when you put your hand in a bucket of icy cold water and try to hold it in there as long as possible. My molars feel like I am having root canals. It feels like little electrocutions going off inside my teeth. I haven't had this type of pain in a couple months and it is debilitating. I am sensitive to light and noise. I also have tinnitus (ringing in my ears). It is continuous like the background noise you hear when you are flying in an airplane.
To understand what I am feeling, here's how I describe or interpret the severity of pain.... When pain is light, it is merely physical. In other words, your body hurts at a specific location. It is localized. As pain gets more intense, it becomes becomes intense in a specific location but also starts to become more generalized in an area. The largest impact is that the pain becomes physiological or psychological and starts to impact my mind. For example, when my pain is a 5 or greater, it becomes painful in an area. I am thinking to myself, "please make the pain stop". When my pain is greater than a 7, it affects my mind. I start trying to imagine myself escaping or becoming detached from my pain. I mentally try to run away from it, to hide from it. I am mentally trying to separate myself from the pain.
Unfortunately, I cannot run from the pain and I cannot separate myself from it in my mind. It becomes a never-ending circle or struggle to be free from my pain. At this point, I can't distinguish the difference between the physical and the psychological or physiological. This is when depression sets in my anxiety goes up. I also starts to aggravate my asthma and my breathing becomes labored. It consumes every aspect of my life, every aspect of me and is debilitating.
The only medication that takes the edge off this pain is Hydromorphone. I doubled my normal dose and have to take it every 3.5 hours. It normally lasts 4 hours but I have to take it in 3.5 hours in order for it to start working before the previous dose stops working. It doesn't get rid of the pain, but it does take the edge off so that the pain is reduced from an 8 to a 6. The pain reverts back to being more physical than mental and at least keeps my mind out of the equation. I've had this pain for 2 days straight now. I don't know what is causing it. Perhaps my stress and anxiety from waiting for the surgery is impacting my physical well-being. I wish I knew.
December 2011
I have a history of asthma since I was 13. I've never been hospitalized for it and was taking medication for it. However, I was hospitalized December 17th at Trillium Hospital for several days to due a bad asthma attack. I stayed a couple of days in the hospital and was given oxygen and put on Prednisone, antibiotics, brochilidators/inhalers (Atrovent and Salbutamol) and Advair. Once I showed improvement and I was getting enough oxygen into my body, I was released and sent home to recover. Mid January, my asthma started to take a turn for the worse. Luckily, the Respiratory doctor from the hospital back in December had referred to me an asthma clinic to create a plan whereby I could manage my asthma and my first appointment was on Jan.16th. At the appointment, I was put on Prednisone, Advair and Singular was added. A complete Pulminary Function Test was completed, as well as other various tests. Once I started the Prednisone, I immediately started to show improvement. This was critical because if my asthma did not improve, I would not be cleared for surgery. After 3 years of waiting, that was not an option in my mind!
Prednisone is a nasty drug. Doctors limit the amount of time that you are on this medication (1 week or so) due to the nasty side effects such as moodiness, irritability, anxiety, severe headache, weight gain, inability to sleep at night and indigestion. It has turned me into a psychotic woman!!! I can't sit still, I am tired/exhausted but I can't sleep, I eat constantly, and I'm in a bad mood and grumpy. I'm not exactly the best person to be around now.
The week of January 16th, I had all my pre-operative appointments. The first was with my family doctor. I then took the form he completed to my pre-op appointment at Mount Sinai, the hospital where I am having my surgery. At that appointment, I saw one of my surgeon's interns. He did an examination of my face, head, neck and checked for neurological problems. I also saw the anesthesiologist, the nurse for the usual blood tests, swabs,blood pressure etc. , had an ECG and a chest xray. I had to sign every kind of form you could think of.
2008
In 2004, I had my first meeting with an Oral & Maxillofacial surgeon, Dr. David Psutka. My first encounter was to have a tooth extracted. From that day on, Dr. Psutka become my oral surgeon and performed many surgeries including bone grafts, implants, tooth extractions, trigger point injections and arthroscopies on my jaw to name a few.
My first MRI on my jaw was taken in December 2005 when I officially became one of Dr. Psutka's TMJ Patients. I was diagnosed with severe degenerative joint disease. At that time, there was evidence of remodeling which means that the shape of the bone was starting to change. This is an indication of osteoarthritis. Luckily, I had one of the key and leading surgeons in Canada as my surgeon! I was very fortunate that way to have already had a relationship with him and he had earned my trust and respect which is key. If you are not comfortable with your oral surgeon or any doctor for that matter, go see someone else. You will be putting your life in their hands when you go under the knife. You need to trust him or her. You need to feel comfortable and that you are in good hands. Do not mix up or confuse butterflies and nervousness. Everyone is anxious and nervous with regards to their TMJ health. That is human nature. You will have a gut feeling if your surgeon is the right person for the job. Don't ignore those feelings. If they are there, I highly suggest getting a second opinion in order to meet another surgeon to see if they are the right doctor for you.
I don't remember the exact date, but in the summer of 2008, I was officially put on the TMJ Replacement surgery waiting list. At that time, the waiting list was 3 years long!!!! THREE YEARS!!! That's long enough to get a degree at college, have a baby, sail around the world! Luckily, I knew I had three years to come to the terms that I needed this surgery and accept it. Even though I knew back from 2005 that I would probably need the surgery at some point, I was still in shock that the time had come.
During most of my dental reconstruction which started in 2004, I was working full time as a Project Manager in Systems and Technology for a major communications company. Everything was going good until February 2009. From October leading up to February, I knew I was not feeling well. I was getting more tired and had less and less energy. It was getting to the point where I could not sleep at night and I was falling asleep at work during the day and couldn't keep my eyes open. Even though I was exhausted at night, I still couldn't sleep and would lie there all night or get up and start working from home on my laptop. I could not think straight. I had no problem solving abilities which was key in my job. I couldn't make decisions because my mind was going completely blank. When I say blank, I mean no thoughts at all. I was forgetting people's names. I could not remember previous facts and information. Plus, I was in pain. Finally one day, I knew I was too sick to work. I ended up going on Short Term disability and then progressed to Long Term Disability (which I am currently on now to this day in 2013.) I was on disability while I waited for a date for my TMJ surgery. In November 2011, I called to find out where I was in the waiting list and found out that my surgery would probably happen some time in early 2012. Even though I had been waiting over 2 years, it didn't feel like it at that time. In mid-December, I got a phone call from my surgeon's Office Manager with a surgery date. It was surreal. I couldn't believe the time had finally come. I think it took a couple weeks to sink in!!!
If you want to know what I did for those couple years while I waited for surgery..... I slept and went to doctor appointments. Due to all the pain killers and the pain itself, I slept 14 to 18 hours a day. I could sleep till the cows came home! (a Canadian expression to mean a long time.) I saw prosthedontists, psychiatrists, psychologists, Ear nose and throat doctor, Gastroenterologist (internal & stomach doctor), dermatologist, neurologist, chiropractor etc. etc. My TMJ problems were causing other problems in my body. Every system in your body is connected and when one goes out of whack, they all get affected. I was having stomach problems from all the meds and nerves, I saw an Ear nose & throat specialist because of the pain in my ears, I saw a neurologist because of the pain in my face and the numbness in my hands and arms. I saw a chiropractor to re-align my back and get rid of the tension in my neck and back from pain and headaches. I felt like I was falling apart. I was taking more medication and seeing more doctors than my dad who is in his 80's!!!!
The pain is getting worse. I have had to triple one of my pain meds. As a result, I am extremely sleepy. I let the dogs outside and I was waiting for them to come back to the door to be let in. I was leaning against the wall and I fell asleep! I woke up as I was falling backwards. I can fall asleep anywhere, anytime. I've been sleeping from 9pm to 4:30pm every day. I have to fight to keep my eyes open. My husband says that I look spaced out like there's no one home. I don't have the energy to fight the pain anymore. On a positive note, sleeping is great because I don't feel the pain and I don't think about the surgery.
When I'm on the computer, I find myself googling TMJD (Temporomandibular Joint Disease/Disorder) and anything related to joint replacement. I guess I am trying to find some sort of comfort that the surgery will go okay. Over the last 3 years, I have researched TMJD thoroughly and although I keep reading articles that I've read previously, I compulsively feel the need to keep searching and reading. My nerves are getting the best of me. I am not just scared, I am TERRIFIED. The closer my surgery date becomes, the more surreal this all feels to me.
The good news is that my asthma is being managed well. I do not feel any tightness in my chest or shortness of breath. I can go up stairs without being short of breath. I am very pleased because having my asthma under control is one less thing to worry about.
I contacted a lady named Terri who had posted in a TMJ forum and who has her story posted on tmj.org. She had her surgery back in 2002 and it was unsuccessful. She was gracious enough to email me back and be there for me like Haley from Australia. I highly recommend finding people who have had the surgery to chat with. Family and friends are great support systems, but no one understands what you are going through better than someone who has gone through it themselves. They understand the intricacies and you will find yourself bonding with them very quickly because you have something in common that becomes an integral part of your life and not only affects you physically, but emotionally and psychologically.
The days just before your surgery are the worst. They were terrible for me because I had been waiting 3 years for surgery. I was a complete basketcase. I was extremely nervous and sick with worry. I think those days were worse than how I felt after the surgery. You will have soooo many questions going through your mind and you will start questioning if you really need the surgery. That's normal. I was scared. No, sorry that is wrong. I was terrified. Don't be afraid to lean on friends and family for support and for a hug. If you are like me, a hug goes a long way. I couldn't even watch TV because I couldn't focus. I was going around the house trying to do things and accomplishing nothing. Don't expect to get housework or stuff done the two days before your surgery. Plan to do those things a few days in advance so that you don't have to worry about those things.
January 27, 28 2012
I am in excruciating pain that won't stop or go away. I would say my pain is an 8 out of 10, where 10 is when I am throwing up. I have not been able to sleep and I am extremely nauseous on the verge of throwing up. I believe it is nerve related pain. It is a sharp pain, like my ear or jaw is being pinched, squished or pulverized to a pulp. There is also a burning pain similar to when you put your hand in a bucket of icy cold water and try to hold it in there as long as possible. My molars feel like I am having root canals. It feels like little electrocutions going off inside my teeth. I haven't had this type of pain in a couple months and it is debilitating. I am sensitive to light and noise. I also have tinnitus (ringing in my ears). It is continuous like the background noise you hear when you are flying in an airplane.
To understand what I am feeling, here's how I describe or interpret the severity of pain.... When pain is light, it is merely physical. In other words, your body hurts at a specific location. It is localized. As pain gets more intense, it becomes becomes intense in a specific location but also starts to become more generalized in an area. The largest impact is that the pain becomes physiological or psychological and starts to impact my mind. For example, when my pain is a 5 or greater, it becomes painful in an area. I am thinking to myself, "please make the pain stop". When my pain is greater than a 7, it affects my mind. I start trying to imagine myself escaping or becoming detached from my pain. I mentally try to run away from it, to hide from it. I am mentally trying to separate myself from the pain.
Unfortunately, I cannot run from the pain and I cannot separate myself from it in my mind. It becomes a never-ending circle or struggle to be free from my pain. At this point, I can't distinguish the difference between the physical and the psychological or physiological. This is when depression sets in my anxiety goes up. I also starts to aggravate my asthma and my breathing becomes labored. It consumes every aspect of my life, every aspect of me and is debilitating.
The only medication that takes the edge off this pain is Hydromorphone. I doubled my normal dose and have to take it every 3.5 hours. It normally lasts 4 hours but I have to take it in 3.5 hours in order for it to start working before the previous dose stops working. It doesn't get rid of the pain, but it does take the edge off so that the pain is reduced from an 8 to a 6. The pain reverts back to being more physical than mental and at least keeps my mind out of the equation. I've had this pain for 2 days straight now. I don't know what is causing it. Perhaps my stress and anxiety from waiting for the surgery is impacting my physical well-being. I wish I knew.
December 2011
I have a history of asthma since I was 13. I've never been hospitalized for it and was taking medication for it. However, I was hospitalized December 17th at Trillium Hospital for several days to due a bad asthma attack. I stayed a couple of days in the hospital and was given oxygen and put on Prednisone, antibiotics, brochilidators/inhalers (Atrovent and Salbutamol) and Advair. Once I showed improvement and I was getting enough oxygen into my body, I was released and sent home to recover. Mid January, my asthma started to take a turn for the worse. Luckily, the Respiratory doctor from the hospital back in December had referred to me an asthma clinic to create a plan whereby I could manage my asthma and my first appointment was on Jan.16th. At the appointment, I was put on Prednisone, Advair and Singular was added. A complete Pulminary Function Test was completed, as well as other various tests. Once I started the Prednisone, I immediately started to show improvement. This was critical because if my asthma did not improve, I would not be cleared for surgery. After 3 years of waiting, that was not an option in my mind!
Prednisone is a nasty drug. Doctors limit the amount of time that you are on this medication (1 week or so) due to the nasty side effects such as moodiness, irritability, anxiety, severe headache, weight gain, inability to sleep at night and indigestion. It has turned me into a psychotic woman!!! I can't sit still, I am tired/exhausted but I can't sleep, I eat constantly, and I'm in a bad mood and grumpy. I'm not exactly the best person to be around now.
The week of January 16th, I had all my pre-operative appointments. The first was with my family doctor. I then took the form he completed to my pre-op appointment at Mount Sinai, the hospital where I am having my surgery. At that appointment, I saw one of my surgeon's interns. He did an examination of my face, head, neck and checked for neurological problems. I also saw the anesthesiologist, the nurse for the usual blood tests, swabs,blood pressure etc. , had an ECG and a chest xray. I had to sign every kind of form you could think of.
2008
In 2004, I had my first meeting with an Oral & Maxillofacial surgeon, Dr. David Psutka. My first encounter was to have a tooth extracted. From that day on, Dr. Psutka become my oral surgeon and performed many surgeries including bone grafts, implants, tooth extractions, trigger point injections and arthroscopies on my jaw to name a few.
My first MRI on my jaw was taken in December 2005 when I officially became one of Dr. Psutka's TMJ Patients. I was diagnosed with severe degenerative joint disease. At that time, there was evidence of remodeling which means that the shape of the bone was starting to change. This is an indication of osteoarthritis. Luckily, I had one of the key and leading surgeons in Canada as my surgeon! I was very fortunate that way to have already had a relationship with him and he had earned my trust and respect which is key. If you are not comfortable with your oral surgeon or any doctor for that matter, go see someone else. You will be putting your life in their hands when you go under the knife. You need to trust him or her. You need to feel comfortable and that you are in good hands. Do not mix up or confuse butterflies and nervousness. Everyone is anxious and nervous with regards to their TMJ health. That is human nature. You will have a gut feeling if your surgeon is the right person for the job. Don't ignore those feelings. If they are there, I highly suggest getting a second opinion in order to meet another surgeon to see if they are the right doctor for you.
I don't remember the exact date, but in the summer of 2008, I was officially put on the TMJ Replacement surgery waiting list. At that time, the waiting list was 3 years long!!!! THREE YEARS!!! That's long enough to get a degree at college, have a baby, sail around the world! Luckily, I knew I had three years to come to the terms that I needed this surgery and accept it. Even though I knew back from 2005 that I would probably need the surgery at some point, I was still in shock that the time had come.
During most of my dental reconstruction which started in 2004, I was working full time as a Project Manager in Systems and Technology for a major communications company. Everything was going good until February 2009. From October leading up to February, I knew I was not feeling well. I was getting more tired and had less and less energy. It was getting to the point where I could not sleep at night and I was falling asleep at work during the day and couldn't keep my eyes open. Even though I was exhausted at night, I still couldn't sleep and would lie there all night or get up and start working from home on my laptop. I could not think straight. I had no problem solving abilities which was key in my job. I couldn't make decisions because my mind was going completely blank. When I say blank, I mean no thoughts at all. I was forgetting people's names. I could not remember previous facts and information. Plus, I was in pain. Finally one day, I knew I was too sick to work. I ended up going on Short Term disability and then progressed to Long Term Disability (which I am currently on now to this day in 2013.) I was on disability while I waited for a date for my TMJ surgery. In November 2011, I called to find out where I was in the waiting list and found out that my surgery would probably happen some time in early 2012. Even though I had been waiting over 2 years, it didn't feel like it at that time. In mid-December, I got a phone call from my surgeon's Office Manager with a surgery date. It was surreal. I couldn't believe the time had finally come. I think it took a couple weeks to sink in!!!
If you want to know what I did for those couple years while I waited for surgery..... I slept and went to doctor appointments. Due to all the pain killers and the pain itself, I slept 14 to 18 hours a day. I could sleep till the cows came home! (a Canadian expression to mean a long time.) I saw prosthedontists, psychiatrists, psychologists, Ear nose and throat doctor, Gastroenterologist (internal & stomach doctor), dermatologist, neurologist, chiropractor etc. etc. My TMJ problems were causing other problems in my body. Every system in your body is connected and when one goes out of whack, they all get affected. I was having stomach problems from all the meds and nerves, I saw an Ear nose & throat specialist because of the pain in my ears, I saw a neurologist because of the pain in my face and the numbness in my hands and arms. I saw a chiropractor to re-align my back and get rid of the tension in my neck and back from pain and headaches. I felt like I was falling apart. I was taking more medication and seeing more doctors than my dad who is in his 80's!!!!