Welcome to my new section called "Your Thoughts, Questions & Comments". I always wanted to add a means for my readers to post their comments. Given the limitations of this site, I finally figured out of a way. This is a place for you to add comments, thoughts, your story or ask questions to myself or others to answer. This is the "guinea pig" stage. I may make changes as we go and any suggestions are welcome. All I ask is that you please be polite and respectful of others. Offensive posts will be deleted.
21 Comments
Sherrie
7/29/2013 12:56:30 am
Hi, I had the 1st of 2 surgeries to replace my joints due to TMJD. Surgery on 3 Jul was performed to remove the condyles which were completely eroded due to arthritis. Next surgery on 11 Sep will implant the titanium joints made by tmjconcepts, Ventura, CA. would be happy to discuss. thank you for sharing...i'm wired shut (completely) until my next surgery...on total liquid diet. any suggestions of liquid drinks would be greatly appreciated!!!
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Diane
8/1/2013 11:00:21 pm
Thanks for being the first to leave a question. There are a few things that might be beneficial to add to your smoothies and drinks; vegetables, protein, fat source, and fiber. We often use just fruit in our shakes because it tastes good! Don't forget your vegetables. You need the vitamins and nutrients in them. Try juicing them and go for nutrient rich veggies like spinach, bell pepper, broccoli, and tomatoes. To make them taste good, you can add carrots and fruits. If you don't like the taste at all, add a small amount to your smoothies and shakes. Also, don't forget to add protein to your drinks. Go for a higher quality protein in the form of a powdered protein isolate which you can buy at any supplement store or if you are truly daring, pasteurized liquid egg whites. The one item that is always forgotten is a fat source. I like to add a tablespoon of virgin coconut oil or extra virgin olive oil.
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Diane Meyer
6/11/2015 01:37:09 am
There is a protein powder called "Vega One". It provides a balanced meal;
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Hi Diane! My name is Melissa. I'm 30 years old and I'm 5 weeks out from bilateral TMJ replacement with TMJ Concepts, multiple maxillary osteomies,and genioplasty. I was diagnosed with idiopathic condylar resorption a year ago after dealing with headaches and noticing a significant change in my bite. I have had no previous surgeries and no TMJD symptoms besides the headaches. By the time I saw my surgeon both of my condyles were non salvageable and surgery was my only option. I read your blog this afternoon and you are truly inspiring! It's so rare to meet others that have had TJR that I enjoy hearing others stories on what led them to have surgery. I left a link to my blog and hope you will take a look at it. I am very fresh into my recovery but am feeling great for everything I had done. Keep up the good work, your blog is so helpful and full of information that is so are to come by.
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Rene'e Beaudrie
9/19/2013 04:33:20 pm
Hi Diane, I had bilateral TMJ replacements done in 1996, my joints were put in by Christisian Company. My right fossa fractured and came out of my ear and parotid gland. I have no joint, on the right side and don't know what is left on the left side. I know I still have the titatinium condyle, but the fossa was made of silastic. Looking at your pictures brought back lots of painful memories for me. I have had approximately 35 surgeries since my initial TMJ surgery in 1984. I have no movement in my forehead, nor any movement in my right eyebrow. Also, my lower lip is paralyzed on the right side. I developed an infection, osteomyelitis in my ear and the base of my skull. My last surgery was in 2002, I have been on SSD since 1998, I was a flight attendant and fell and fractured my nose and jaw. If you would like to chat sometime. Drop me a line @ [email protected]. I would like to read your book, I also deal with PTSD, anxiety and depression, and my immune system is shot due to infection. It took over 18 mos. before they realized that the deep ear pain that I was having was due to my metal fossa tearing through my ear canal. It is rare to find someone who has blogged about their experience with TJR. Until you have gone through it , no one knows what kind of pain you live with. And the collateral damage that comes along with it.
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Rene'e Beaudrie
9/27/2013 03:53:35 pm
Could you please email me at [email protected], I have several questions that I would like to ask you.
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ginni
12/21/2014 11:24:58 am
Just an FYI. I had years of severe left sided jaw joint pain, multiple closed lock situations, discs were useless, big ragged holes in them. Osteoarthritis/degeneration of joints, bony ankylosis.
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Sherrie
12/25/2014 10:10:42 pm
I agree Ginni, other than muscle aches (chewy stuff) I'm 100% better!!! I can't believe it's been over a year already ;) I had a great experience and consider myself very blessed. Here's to a Happy 2015 to all ;o)
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Tracie
5/3/2015 02:56:20 am
I am having R joint arthroplasty, with a coronoidectomy and a joint replacement from TMJ concepts. It's a 2 part surgery for me. June 1st to have the joint removed. Wired for 8 weeks and the. The joint will be replaced. I will be "banded" shut for the 1st 8weeks and then be using rubber bands for the last 6 weeks for maintaining occulsion. I AM SCARED. The pain I have been in has overrun my life. It is been nothing but a fight with the insurance company as I do not have TMJ coverage. The financial strain has only added stress which doesn't help situation. Any tips on diet post surgery, and financial assistance as I don't have any type of short or long term disability insurance and I'm about to financially lose everything and still have to come up with $2205 by May 31st to have the surgery.
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Diane Meyer
6/11/2015 01:41:08 am
I completely understand how you feel. Head related pain is horrible. Unfortunately I have no suggestions on how to deal with the financial costs of TMJ surgery and treatment.
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ginni cioffletti
6/11/2015 09:24:45 am
Tracie - I am SO sorry you are dealing with all this insurance nonsense on top of everything else. However, as we likely know, most insurance companies would rather NOT pay for stuff if they can get out of it, and they will certainly try the latter option. My question is do you have good medical-surgical coverage - i.e. if you needed it tomorrow, would it pay for a needed knee or hip replacement, etc? Does it pay for oral surgery - "TMJ" exclusions are common, however, if you look at policies carefully, they may say NONsurgical TMD/TMJ stuff is not covered. They don't mention surgical needs. I am a nurse and so I think it helped give me a leg up on how to argue with them. Trust me, I DID argue. Many times, over and over. But, in the end, I DID win the coverage. Lord knows no one needs that stress when they are in severe pain. However, they are hoping you will just go away. Don't let them do this to you!
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Aimee Prainito
6/19/2015 05:36:43 pm
Hi, I had my bilateral TMJ replacement surgery in April 2014 in Atlanta GA. Also joints made by TMJ Concepts. I only had to wait for the joints to be made and insurance to OK it and cover my co pay. I was only in the hosp overnight, surgery was only 2 hours (my first open joint surgery back in 1991 was 10 hours). Left the hosp using the therabite (oh I hated that). No post of complications at all thank goodness. and now 14 months post op and so glad I did it. I used it as a last resort after 35 years of TMJ misery with assorted therapies, procedures etc (wont go into detail because very boring) and have been the subject of several studies since my tmj issues started in the 1980s when no one knew what it tmj dysfunction was and people wanted to remove my teeth, give me braces, gave me assorted bite plates, etc. I always went to the top md in the field in whatever state I lived in (NY, AZ and now GA). I still have numbness from the surgery but I expect that to lesson over the next year. I went from massive meds prior to surgery to nothing now. I don't chew gum or very chewy foods and my range of motion is limited due to prior surgeries when they reduced my ligaments at one surgery but I am basically pain free most of the time (weather still effects me) and take the occasional pain med but nothing like before. I just strongly suggest to anyone thinking about the surgery to make sure they are seeing the best md they could where they live. I currently see the head of oral fascial maxo surgery at Emory University in Atlanta and he is beyond wonderful. they have performed hundreds of this type of surgery as it is usually reserved as the last resort and only a small percentage of patients need the surgery. I also only see Physical therapist who know how to treat tmj, and one of the top PTs is in the field happens to work in Atlanta as well. I am sorry for all you who are going through this and are hearing horror stories but know that there are some of us who have excellent outcomes as well with no continued complications. everyone has different reasons why they need the surgery so results will obviously vary. I had arthritis set in over the years and joint deformity and had discs removed and condyles reshaped, etc and held off until replacement was the absolute last resort. each surgery prior had bought me some time until there was nothing left to do but the surgery and again am so grateful that I did it and hope that all that are going to go through it will come out the otherside without complications and reduced pain
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Reta
2/24/2016 09:10:30 am
I just had my second TMJ joint replacement. The first one was done 16 years ago using a rib and had worn out. I had a custom Biomet titanium joint put in my left TM. I am just 3 weeks out from surgery but very happy to report that I have no nerve damage and all of the parts of my face move the way that they are supposed to. I went to Mayo Clinic & University of Pennsylvania and consulted with their two top specialists. Actually Dr. Quinn made the Biomet. In the end I went home to my surgeon in Halifax Canada. He uses a technique where his incision on the ear is back farther to help prevent nerve damage. That incision has been opened 4 times for various surgeries and I am happy to report there is no nerve damage. I am working on learning to chew again, so I am experiencing some muscle spasms due to the muscle trying to heal from being cut to reach the bone. If anyone has any questions regarding my long battle with TMJ headaches feel free to contact me at [email protected]
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Lidia
3/25/2016 03:21:36 am
Hi! My name is Lidia and I'm from Spain. Could you tell me who is your jaw surgeon, please? Here in Spain there isn't any surgeon who does this kind of surgeries :( I am wondering how someone would do the post-op rehabilitation in another country. I mean: imagine I have total replacement in the U.S. or Canada... could I do the post-op rehabilitation in Spain. I ask that because I have to fly home after the surgery...
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Ginni Cioffletti
2/29/2016 06:23:07 pm
Just an FYI - I think I unsubscribed myself from here accidentally so hoping anyone who can use this sees it - I was referred back to this site for a comment following mine. On reading some of the posts again, I would like to say that if anyone runs into insurance company arguments, I saved all my correspondence related to my situation (it's a big file!). Both as a patient and former nurse, I would be more than happy to try and help someone through the maze and obstacles they throw up at patients. Sometimes it is the language one uses that might get the insurance company to sit up and pay attention, etc. I can be contacted at [email protected]. Just put TMJ in the heading so I would know it isn't spam, thanks.
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Odette
3/7/2016 03:51:08 pm
I am 6 days post-op from TJR & I'm wondering about joint stiffness. Does this subside?!
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Lidia
3/24/2016 05:38:45 pm
You can't imagine how lucky you are! Here in Spain there isn't any surgeon who does this kind of surgery. Can you imagine how many people with serious tmjs problems are completely hopeless and desperate in Spain? If we need this surgery, we have to go to other country like the U.S. Can you imagine how difficult and expensive it would be? And I don't want to think about the post-op rehabilitation. Thank you for your blog. It's really useful
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Melody
4/30/2016 04:19:22 pm
Hi. I am just waiting for insurance approval to have my bilateral TMJ replacement done. I am scared to death to tell you the truth. Thank you for this site and all the information provided.
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Tara
11/17/2016 05:13:16 pm
Diane, thank you for sharing your story. I have TMD-OA with severe condyle flattening. I've been on a soft/mush diet for 2 years. I'm in orthodontics (to prepare for surgery) and will have bilateral TMJR in about 6 months in California, USA (my first surgery on the joint) using the TMJ Concepts device. Naturally, I'm very nervous. Information you provide has been very helpful as I try to get mentally prepared.
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Chas
6/27/2018 02:17:47 am
HI everyone. I really appreciate being able to read all the comments and experiences that everyone has gone through. I haven't gone through such extensive surgeries, however, I don't know what my surgeon will say when I see him. I had my first TMJ surgery in 2003. My surgeon said I wasn't so bad that I needed lock jaw surgery, so he made tiny incisions by my L ear and put in time-released anesthetic. A couple years later I had the other side done. Now I am suffering again, but the symptoms are worse. I just got referred to the oral maxcilofacial surgeon today by my doctor with urgent on it.
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Delia
11/16/2018 05:30:23 pm
Hi just wondering if you are still active with your site?
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