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    Old 07-28-2004, 06:29 AM   #1
    gaillilpal
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    Post What Now after Surgery

    Hi I just joined today. I have had it with my Dr and am now looking for any tips on this jaw!! I have done the drugs/cold spray/therapy and surgery. Since the surgery 1 yr ago the popping/clicking/locking and headaches have declined somewhat. Now I am facing sharp shooting pains in my left ear and my bite is off as well.the headaches are resuming and I cant eat normal.one side of my jaw works ok the other in constant pain. even after a day of talking My jaw is exhausted!I have gone from locking popping to I can barely eat chicken or a slice of bread. I now have to cut everythingtoddler size. My husband said get a second opinion.He will send me anywhere! this Dr I see now is the only specialist in the area. If anyone has any ideas please let me know. Thanks Gail

     
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    Old 07-28-2004, 10:57 AM   #2
    Katie G
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    Smile Re: What Now after Surgery

    Hi there - so sorry for your troubles. Question for you - what type of surgery did you have done? There are so many types of orthognathic surgeries, I get a headache just from trying to read about all of them.

    The reason I ask is that I'm in Phase I of wearing a repositioning bite splint 24/7 - my year of wearing it is up in Oct. '04. Since wearing the splint, my anterior open bite has become even more open, and my ortho keeps talking about surgery in the future to realign my jaws/close my bite. Yikes! After the horror stories I've read here, I just want to know what I'm in for.

    Katie G

     
    Old 07-29-2004, 11:53 AM   #3
    meditation
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    Re: What Now after Surgery

    Hello, we haven't seen you in a while.

    What kind of surgery have you had?? arthroscopic? open joint (tons of them)? arthrocentisis (sp)?

    If you are concerned that you may not be getting the care you need, the best thing to do, is to go and get a second opinion.

    While that one doctor is the only one in your area; you may need to go outside your area. Your pain is significant and if someone isn't helping you, another person may.

    When I went through this as a young girl...12.13.14...up until my early 20's...my poor mom drove me all around the state of FL...from Miami, Tampa, St. Pete, Gainesville...and so on (I lived in the Palm Beach area), because the pain and limited opening were so bad.

    Find someone that is in your state. It may be a little drive; but, a second opinion is just that...an opinion....It will not hurt you.

    take care, and hope to hear from you soon,
    johnna

     
    Old 07-31-2004, 07:26 AM   #4
    gaillilpal
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    Re: What Now after Surgery

    Quote:
    Originally Posted by meditation
    Hello, we haven't seen you in a while.

    What kind of surgery have you had?? arthroscopic? open joint (tons of them)? arthrocentisis (sp)?

    If you are concerned that you may not be getting the care you need, the best thing to do, is to go and get a second opinion.

    While that one doctor is the only one in your area; you may need to go outside your area. Your pain is significant and if someone isn't helping you, another person may.

    When I went through this as a young girl...12.13.14...up until my early 20's...my poor mom drove me all around the state of FL...from Miami, Tampa, St. Pete, Gainesville...and so on (I lived in the Palm Beach area), because the pain and limited opening were so bad.

    Find someone that is in your state. It may be a little drive; but, a second opinion is just that...an opinion....It will not hurt you.

    take care, and hope to hear from you soon,
    johnna
    Thanks for responding to my questions. I emailed the Dr in Ohio that wrote a few books on TMJ. I havn't had his reply yet. I will call Monday. I am taking your advice a nd looking in the Albany-Buffalo-rochester area. What are you doing now about your jaw? Do you have any other tips or more advice? I thank you again. Gail From UPstate NY

     
    Old 07-31-2004, 07:31 AM   #5
    gaillilpal
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    Re: What Now after Surgery

    I forgot to say that the surgery was arthro scopic. I know that I have artheritis on one side. Actuallly that is the side that feels fine.

     
    Old 07-31-2004, 07:37 AM   #6
    gaillilpal
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    Re: What Now after Surgery

    Hi Katie I have had the artroscopic surgery. I have a mouth guard that I wear at night. I have noticed that my bite has changed since the sugery. My bite with the splint is cockeyed. One side rests on the bottem teeth where the bad side does not. I have not worn a splint like you for 24-7 I wonder if that would help. Some one told me to have my teeth filed. I feel that its the jaw that has moved not the teeth. Thanks for your reply. Got any more info? Gail

     
    Old 08-01-2004, 03:38 AM   #7
    Cymy Sue
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    Re: What Now after Surgery

    Hi,
    Sorry for asking another questiion. There are several different types of Arthro procedures. If you don't mind posting, what exactly did you have done?

    I ask because I've had several over the years and finally did find a splint that has worked and I am out of pain. It is possible after surgery or multiple surgeries to find help, for most of us.

    It seems more Doc's are now seeing the need for "more" after-surgery care. This was not so just a few years ago.

    Cymy Sue

     
    Old 08-02-2004, 05:24 AM   #8
    gaillilpal
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    Re: What Now after Surgery

    What kind of splint are you using? And how many surgeries have you had? I feel that if some one could just punch my left jaw it will pop back in place. ( Like that will work!LOL) How many Drs in your area specialize in this? My problem I s that everywhere i go to get a secong opinion they all send my to the Dr I am seeing now. He is the only one on this area. So now I am branching out for another DR opinion.

     
    Old 08-03-2004, 04:02 AM   #9
    Cymy Sue
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    Re: What Now after Surgery

    The splint I am using was designed specifically for someone with surgical damage or multiple surgical intervention It's very small & thin, a bottom fit: similar to a flat plane but not exactly. It has very small cusp wings, (you can hardly see) so I don't slide around on it and my top teeth fit evenly on it all around. I only wear it at night now. It's made to be very comfortable because I made need it for a very long time.

    It doesn't have a name due to being made specifically for my condition.
    Splints made for people with long-term, post surgical problems was and still is a relatively new concept. Or it was when I was fitted with it 20 months ago.

    Each person's would most likely be a little different based on problems and symptoms. The theory of this splint was based on those used for people with joints destroyed by rheumatoid and osteo arthritis. This theory was being used by my Dentist (and others) and proven to work.

    My condition is abnormal joint structure from birth, condyles and other surrounding structure deteriorated and no disc.

    When I was first diagnosed in 1977, there was no MRI's or tomogram, etc., so the abnormal joint structure, bone deterioration and shredded disc situation was not known.

    I was treated with splints and braces for about 8 years or so and decided on the surgery (at that time) they thought would help. I didn't have real bad occlusion or facial structure abnormalities, but with all the symptoms and pain, they did orthognathics to realign your bite. They thought this would work. At that point in time, occlusion was what most believed caused TMJ problems.

    In 88 I had 2 orthognathics. Breaks to both mandibles, lengthened a little and lined up properly. My left condyle pulled loose and due to serious complications during the surgery, it was left about an inch lower than the right.
    The second orthognathic was 3 months later to try and relocate the condyle and another attempt at realignment, breaks again to both mandibles. Complications again and the condyle would not go back to the proper position.
    I was left with permanent nerve damage to the 2 & 3 tri****nal nerves and my left condyle about 10mm or so lower than the right. I was numb from my nose down. (they thought permanent and it was for 16 years. I have recently had some feeling return to my upper lip and parts of my lower face. My lower lip and chin is still numb)

    A few moths later, MRI's were being tested on TMJ patients and I was found to have the abnormal joint structure, both disc shredded into threads and mostly out of the joints laterally to the outside.

    These two surgeries had added to the problems and pain. Caused incredible nerve damage, permanent structural changes I didn't need and my left condyle will always be too low. The disc had most likely been shredded for many years.

    In 90 it was determined I had developed a low grade infection in the mandible and maxilla and had significant bone loss. They believe due to the amount of bone loss, the infection had started right after these surgeries and gone undetected.
    I had a bone grafting procedure to take out all of the damaged (necrotic) bone and it was replaced with bone grafts.

    In 92, I had an arthroplastic procedure to clean out deteriorated bone, smooth the jagged condyles and autogenous disc replacements. They used aricular (ear) cartilage.

    These replacements begin to deteriorate in about 2 years.
    I had been in severe pain for most of this time, it did get better for a while before the replacements started to deteriorate.
    I managed with it until 97 and had another arthropasty (discectomy) to remove the disc with no replacements and another clean up of deteriorated bone and smoothing of what little condular bone was left.

    I was sent into "Pain Management" and told I most likely would need medication for the rest of my life. I was 45 and this was not the kind of life I wanted. I did ask about a splint during this time and was told it would not help my condition and due to having no functioning joint structure, it could make my condition worse. I was told this by my Surgeon up until the last time I saw him in 2002 when I got my records from him and told him I was going to try splint therapy. He said I was wasting my money and my time. It wouldn't help.
    I did ask for Total Joint Replacements during this time and was turned down due to multiple surgeries, too much nerve and muscle damage, bone loss and fragile bone where the Implants would need to be attached and age. (50)
    I was told my only option was staying highly medicated the rest of my life.

    At this point I had all of the TMJ symptoms most people have, plus problems caused by damaging surgeries. I had nerve pain that never ended, developed a roaring tinnitus, nasal problems which required another surgery and I had not been able to open over 19mm in 25 years. Normally it was 5-10-15. I had ongoing physical therapy to help with this through all of these surgical years.
    In about 1999, I started seeing a Massage Therapist, trained to work with TMJ patients and she was able to help with many of the muscular problems I had. More so than the Physical Therapist.

    Joining this group in Oct.2002 for support is actually the reason I started to question if splint therapy could possibly help someone in my condition. There were members here at that time who told me it might be possible. I couldn't find anything published about surgicals using splints, but I had nothing to lose.

    I saw my Dentist to ask for a referral to anyone who might be able to help me. He said he and some colleages had started to work with "Surgicals" using splint therapy and he designed the splint. This was DEC 2002.
    The splint was to support my joints and passively let the muscles reposition back to as normal as possible and still maintain the function of the joints.
    Within weeks I began to see results. Symptoms and pain that I had for years was going away, the Tinnitus started to diminish and my opening increased to about 34mm in a couple of months.

    The muscles started to relax and reposition back to normal. I could tell due to the spasms and pain easing up and also, it was visual. Over the years, I had developed extra muscle mass on the left side due to the condyle displacement and shorter muscles on the right that caused a deviation or pull.
    This went away and my face straightened.

    My opening has not increased any further, but without disc and basically no joint structure, 34mm is excellent. I have none of the regular TMJ symptoms or nerve pain anymore. I still have some minor problems directly related to the surgeries.
    After about a year, I started to have some feeling return in numb area's.
    It's believed that muscle spasms/compression on these nerves for years has been relieved and the nerves are able to heal and send signals again.

    The rule of thumb on numbess is, after a year or so, if you still have it, it doesn't go away. With my experience, this is not true. It can change due to the reason. If muscle compression is causing pain and numbness, this can be helped. I also had some nerves damaged and possibly cut. They can heal given the right circumstances. i.e., get the muscles relaxed and off of them and they will try to heal and function regardless of the time involved.

    My condition now is good. My life is back to normal and I look almost like I did when this started 27 years ago. You can live without disc and normal joint function. You need help with splint therapy designed for your individual post- surgical condition. I no longer need medication for TMJD and haven't for a long time.

    I'm not sure how many Doctors or Dentists in my area work with surgicals. I do read that many all over the country are now seeing the need for this type of help and are beginning to treat people. TMJ Surgicals.
    I was helped by a General Dentist with a unique understanding of TMJD. Experienced, knowledgeable, and devoted to helping people regardless of the condition they may be in with any stage of TMJ problems.

    There is help available. You just have to find it and not settle with living in pain and "Highly Medicated" just because one or two may tell you "There are no other options".
    They are, many times, very wrong.

    Cymy Sue

    Last edited by Cymy Sue; 08-03-2004 at 04:18 AM.

     
    Old 08-03-2004, 05:12 AM   #10
    Cymy Sue
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    Re: What Now after Surgery

    I want to to add one last thought.

    I had the orthognathic surgeries prior to proper diagnostics being available.
    I didn't need them. Orthognathics should only be considered for severe structural abnormalities and deformaties that cannot be helped with other treatment. They do traumatize healthy joints. They will, in most cases, cause further damage to (already) unhealthy joints.

    I had the cartilage replacements when they thought this would work. Many surgeons don't use autogenous materials (cartilage, muscle, demal/fat, etc.)for disc replacements anymore. They have been proven to hold up only 2-5 years in most cases.

    I agreed to these because I was told they did work and there was no information available to the contrary at the time.

    I had excellent surgeons, but they were doing surgeries that don't work for TMJD. The theories on the procedures are flawed. The TM Joint does not respond to surgical repair or intervention as does the knee or hip. Many of these surgeries are/were based on the successes with other joints.

    I have been told by many Doctors/Dentist in different fields, I did need the discectomy. There was no way to repair the shredded disc.
    That was the only one I should have had.

    TM joint surgery of any kind should never be the first line of treatment otherwise. Try everything else available first.

    I am doing extremely well now. I will never be completely normal again and I just lost 25 years of my life due to inappropriate treatments and flawed surgical procedures. I was 24 when I first heard the words TMJ. I was 50 when a small splint and a wonderful Dentist gave me back my life.

    I am very fortunate and blessed. There are many like me who started with surgeries so many years ago and they will never get back to "Almost Normal".

    There are people who have had these procedures recently and they are in the same situation I was.

    Regardless of what you are told, all of these procedures are invasive, they have a great potential to cause further damage and the FIRST, is rarely, the LAST.

    Cymy Sue

     
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