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Conditions and Diseases > TMJ Forum > Adolescent Internal Condylar Resorption (Page 1)
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Q: Adolescent Internal Condylar Resorption
asked by: rosy22 on March 2nd, 2008
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My daughter was diagnsosed with this. Does anyone have same condition? How serious is this? Also if you have any references/websites.
Irma
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edgaras
replied on March 3rd, 2008
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Rosy, I am happy you posted here, nice to hear from you, and please know that you are not alone in the quest to find answers.

You can check pubmed.com for research on this subject.

Here is something I found by doing simple search:

Oral Maxillofac Surg Clin North Am. 2007 May;19(2):223-34.

Department of Oral and Maxillofacial Surgery, Massachusetts General Hospital, Harvard School of Dental Medicine, 55 Fruit Street, Warren Bldg. 1201, Boston, MA 02114, USA.

Idiopathic condylar resorption almost exclusively affects women. Its exact etiology and pathogenesis remain unclear. It has been associated with rheumatoid arthritis, temporomandibular joint internal derangement, condylar fractures, connective tissue or autoimmune diseases, orthodontic treatment, and orthognathic surgery. In most cases, however, there is no identifiable precipitating event, hence the term "idiopathic condylar resorption." The female predisposition to this condition may be attributed to the influence of estrogen and prolactin on the bone response. Treatment of idiopathic condylar resorption is controversial. Condylectomy and reconstruction with costochondral graft offer definitive management of active idiopathic condylar resorption.


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Am J Orthod Dentofacial Orthop. 2007 Jan;131(1):89-97.
Retreatment of a patient who presented with condylar resorption.
Bilodeau JE.

This case report describes the retreatment of a patient whose initial nonextraction treatment several years earlier had been unsuccessful. When she sought new treatment, she had an open bite, proclined incisors, and severe temporomandibular joint derangement with almost complete resorption of the condyles. The new treatment, which included extractions and surgery, gave her balanced and harmonious facial proportions, a Class I occlusion with normal overjet and overbite, and a healthy dentition. There was no further loss of condylar tissue and the temporomandibular joints were asymptomatic.

Full article available here:
http://www.bilodeauorthodontics.com/case10 .pdf


================

This are abstracts of medical journal articles. University medical libraries might have more information as well - books, journals. I wish that someone who has experienced this would comment and provide you with more information.

I would say that more information is needed before you can find out if it is serious or not. If condyle suffers
to much brakedown then I would assume it might cause a problem with proper joint function.

Please tell us how old is your daughter and if she has pain, also, how was this diagnosis made? Did they do CT or MRI scan and noticed this? Did you see an oral surgeon or some other specialist? Wish you and your daughter strength and find a good doctor.
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edgaras
replied on March 4th, 2008
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I thought abstracts where public domain
I thought I would not get reviewed for posting abstracts, they are public domain published by our own government. I have inquired before with pubmed on this matter and they grant such rights to republish as long as we include reference.

Now, the full article, it appears that the doctor who wrote it, has his own site, and allows people to download it for free.

I am very sorry - if you are so upset with it. I am just trying to help.
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edgaras
replied on March 4th, 2008
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Re: Adolescent Internal Condylar Resorption
rosy22 wrote:
My daughter was diagnosed with this. Does anyone have same condition? How serious is this? Also if you have any references/websites.
Irma


Rosy, go to pubmed.com and enter "condylar resorption". It would get you the articles, I know my library at university has computers on which you can freely access all the journals. So it might take a visit, or some browsing to find full medical articles. And it just recently, I have this idea, of trying to find a doctor based on the fact of how many published medical papers he has out.
Some doctors never do independent research, it's unbelievably! Doing so I think is important sign that doctor is up to date and is not beyond new advances. You can only know that if he/she publishes medical reports and continues to do so even after they start practicing privately. That's when you know you have a good doctor. I'm abit upset as I've seen doctors that appear clueless, and then I end up bringing in medical literature to support and back up what I am sayings, otherwise they think you're nuts, while in fact, it is some of the doctors that have outdated knowledge and fail to read new publications.
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TMJWorld
replied on March 4th, 2008
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Re: I thought abstracts where public domain
edgaras wrote:
I thought I would not get reviewed for posting abstracts, they are public domain published by our own government. I have inquired before with pubmed on this matter and they grant such rights to republish as long as we include reference.

Now, the full article, it appears that the doctor who wrote it, has his own site, and allows people to download it for free.

I am very sorry - if you are so upset with it. I am just trying to help.


the post was ok--dont worry about that --we just had to take out an email address.Smile
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ramblerec
replied on April 28th, 2008
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Condylar resorption
I am just starting this long journey. My son has been diagnosed w/ idopathic condylar resorption. The initial diagnosis was made two years ago, when he was 12. We were just starting the orthodontic process and they did x-rays. We were referred to Mayo Clinic and told nothing could be done until he was done w/ puberty. Now, at age 14, we went back for another visit and will soon start treatment!! No changes in the condyles, they are "burnt" all the way down. Waiting for the orthodontist to receive the info from Mayo. I am wondering, since this is a medical condition, is it possible for the orthodontic work to be covered under medical insurance rather than dental insurance? Any ideas out there??
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edgaras
replied on April 28th, 2008
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coverage- insurance
I know my last policy had limit of $2000 for TMJ related treatments. There might be a way around ( I am hoping) if it is surgical and can be shown to be medically necessary (you are not addressing popping, clicking, or general appearance of smile for aesthetic purposes). I think insurance companies really need a kick in the butt and pressure from Congress to include all treatments if they are medically necessary.
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ramblerec
replied on May 12th, 2008
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Condylar resorption
I am SOOOOOO angry. I checked into my dental and medical insurance and absolutely nothing is covered. About the only thing that will be paid for is the extraction of impacted wisdom teeth. My medical policy excludes malocclusion. I can appeal or send a grievance, but I am totally at a loss as to how this can happen. It's not cosmetic, it's an idiopathic condition!!!
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TMJWorld
replied on May 12th, 2008
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oh yes beleive me ---most of us can relate to your anger----i usually warn every one that tmj is an exclusing. beleive me im mad too
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edgaras
replied on May 13th, 2008
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Don't give up. I read somewhere that one lady had Medicare who denied
her jaw surgery and she had to take them to court to pay, and they did eventually paid because it was medically necessary.
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TMJWorld
replied on May 13th, 2008
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yeah you can do that but it costs more money
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ramblerec
replied on May 13th, 2008
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I received a letter from the insurance saying that I can appeal or file a grievance. They carbon copied the doctor at Mayo. So I plan on giving him a call to see what they can do to help. I'm sure they see this quite often.
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TMJWorld
replied on May 13th, 2008
Extremely eHealthy
yes unfortunately we do----not just us as patients but the companies and the doctors
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kate0002
replied on April 17th, 2009
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Juvenile Rheumatoid Arthritis
Hi -

I was diagnosed with idiopathic condylar resorption when I was about fifteen, because I noticed my jaw was shrinking - and my face was changing...and my teeth no longer closed together. Anyway, it ended up I had JRA, despite the fact I had almost no other symptoms (not in bloodwork...etc), other than complete joint deterioration in my jaw. (The bone loss was progressive- it occurred over several years. It was hardly noticeable to begin with.) My advice is to see if you can get a referral to see a rheumatologist. If you catch the bone resorption soon enough - then maybe you can avoid surgery. I wish someone would have told me this when I had no clue why my jaw was disappearing! (Or - if your daughter had surgery already, as I almost did before my JRA diagnosis, perhaps it will be able to stabilize and she won't risk losing her new joints.)

Anyway - it is a frustrating process. I know because for me it started when I was 14 and now I'm almost 23 and I'm still dealing with it. I saw doctors for almost a decade trying to figure it out! But, JRA might be worth investigating. I wish you and your family the best!
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PDunn
replied on May 2nd, 2009
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condylar resorption
My daughter was diagnosed with condylar resorption November 2008 after having lower jaw surgery about nine months earlier. We have been told to wait until it goes into remission before we decide what to do next. She has been tested for auto-immune diseases and arthritis, etc. and all tests came out negative. She does have pain in her neck and jaw. She is now 17 years old.
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kate0002
replied on May 2nd, 2009
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Juvenile Rheumatoid Arthritis Part II
Familiar story...(see post above.) All my tests came out negative for auto-immune & arthritis as well - blood tests and contrast MRI. From what I understand, most tests do come back negative for people with auto-immune issues. My doctors say that diagnosing auto-immune diseases is more of an art than a science sometimes. I was told that I had to wait until remission before I had surgery, as well. (I'm currently waiting for those results.) However, it's so confusing because if they couldn't *officially* diagnose the JRA (they just said "bone loss appears consistent with JRA") than how will they know if it's in remission or not? PDunn - what happened with your daughter? I mean, "condylar resorption" is a symptom, not a diagnosis...some of the doctors I saw in my decade of searching tried to pull that one on me..."idiopathic condylar resorption" which sort of translates to "we have no idea, so we'll just name the symptom (bone resorption) and throw in another 'I dunno.') I'm just very frustrated and frightened myself, and it sounds like I'm in a similar boat as your daughter, only I'm 22. I figure since this is so rare, sharing new findings might be a good thing to do. So far, despite my negative tests, I'm stuck with a JRA diagnosis.
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PDunn
replied on May 3rd, 2009
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Thanks for your reply. My daughter had lower jaw surgery because of an over bite. She was told by our ortho that she would need surgery when he first saw her at the age of 6 or 7. She had the surgery at the age of 16 and everything went well and she looked and felt great. After 9 months her ortho noticed her overbite was coming back and she also was developing an open bite. He thought she might have a tongue thrust but told us to go see her oral surgeon for a consult. He was the one who diagnosed condylar resorption. We then went to an arthritis/rheumatologist who did blood work and a physical on her. He told us she has hypermobile joints and thought that might be the reason she got condylar resorption. The blood tests came back negative like I stated before.
I thought that some people have condylar resorption alone. I know that it can be a symptom of other diseases but from what you said it is always a symptom of something else? We have gone to a holistic chiropractor for adjustments and thought why not try the holistic approach since our doctors don't really seem to know that much about this condition. I want to get her hormone levels checked. She went on the birth control pill right before this happened and I wonder if that triggered it. I really don't know what else to do. Since you have done so much research have you found any doctors that specialize in this? We live in Southern California but I will take her anywhere to figure this out. She is in constant pain but tries to just live with it. I think it's a great idea to keep this subject alive and compare stories so maybe we can find help.
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kate0002
replied on May 3rd, 2009
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Doctors & More!
That is interesting that your daughter was suspected to have tongue thrusting - that's what my doctors said at first, too! Checking hormones is a good idea - thyroid can cause issues like this. My thyroid was negative though (It's usually part of the blood tests, so if you received copies of the results, you might want to check it out!)

As for doctors: my uncle is my dentist, so he noticed the resorption first through my x-rays. He went to the University of Michigan, and is friends with the retired chair of oral/facial surgery there, Dr. Norman Betts. My uncle referred me to Dr. Betts because he is supposed to be the best for such rare conditions. When I met with him, Dr. Betts refused to do any surgery (it's an invasive procedure involving condylar reconstruction) until the cause of the resorption was diagnosed and was in remission. Dr. Betts stressed that condylar resorption is a *symptom* not a diagnosis. That is when he referred me to Dr. Hilary Haftel, a rhumatologist at the University of Michigan Hospital, even though I explained to him that other doctors had concluded I had no autoimmune disease via a series of negative tests. I ended up meeting with Dr. Haftel anyway because it was convenient for me, as I am a graduate student in Social Work at the University of Michigan. Dr. Haftel is an absolute expert in rhumatology - the best - she also teaches at the university. (Fun Fact: Michigan is where "House" went in the tv show "House." Haha, I guess that gives it a good reputation, sort of.)

Anyway, this is the confusing part for me - there was no evidence whatsoever that I had an autoimmune disease even after Dr. Haftel's tests. There are only a few ways to test this, and none of them have to come out positive for a diagnosis. Tests are: blood work, the doctor checking for nodules, swelling or redness on/around the joint, and finally a contrast MRI to check for any "active processes" like rhumatoid arthritis. In my case - all three of these came back negative. Blood was fine (no Rhumatoid factor), no swelling or nodules and even the MRI did not indicate an active process. However, for me, there is no joint left - at all. I no longer have condylars on either side, so there would be almost no joint to examine anymore. After Dr. Haftel read the MRI she concluded that the bone loss was consistent with JRA...despite my complete lack of other symptoms.

Or at least, I thought a complete lack of symptoms. My mother has since convinced me otherwise...as a child my growing pains were way more severe than normal (e.g. I actually complained, where most kids don't.) and my jaw ever really hurt...more than an annoying toothache feeling. However, JRA can inflame tendons around the joints. I did notice the tendon issue; I was a dancer and some days my knees and arms would just hurt. (But, never in *that* noticeable of a way.) Now, I can notice it...but the pain hasn't been that bad, which apparently is very rare - usually it really hurts, according to other people with JRA or autoimmune diagnoses.

I find the birth control bit VERY interesting. This bone resorption didn't happen to me before I was on Depo Provera (the shot)...it happened during and after I stopped taking the shot. There might be a connection there - but, Dr. Haftel didn't seem to think so.

Anyway, I also really like taking the holistic method as well...however, because this may be a serious condition (I mean, if it happened to one joint...what's stopping the other joints from disappearing later?) That's not meant to be scary...it's just how I'm kind of feeling about it. I would really, really recommend getting a diagnosis...bones don't absorb into themselves and disappear for no reason. (Note! I also used to go to a naturalistic chiropractor for scoliosis as a kid - apparently if your daughter does have an autoimmune problem, lubricating the joint via 'cracking' can irritate this problem.)

Anyway, I would recommend looking into Dr. Hilary Haftel at the University of Michigan in Ann Arbor. Also, on the 'hypermobile' joints - I also have heard that in the past. My elbows over-extend to the point of looking almost broken! However, I talked to Dr. Haftel about it and she said that no matter what, a joint is a joint - and no amount of hyperextension should wear it away, in the way mine wore away. She said it might explain slight bone loss through 'wear and tear' but, nothing like this complete condylar resorption. I guess it depends on how severe your daughters loss is. My open bite was only 1mm for a long time...two years later it became over 3mm wide. My teeth do not close together in the front at all, and the whole shape of my face has changed. (Slight chin recession, shorter forehead to chin distance)

If you or your daughter ever want to talk - feel free to write me. This is a very annoying and scary process. When I was 17, it really irritated me because I just wanted to go to college and not care about it - which was easy for me to do because the resorption is so slow moving and random. Anyway, feel free to contact me if you want. (My real name is Kathryn.)
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PDunn
replied on May 4th, 2009
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Kathryn,
It talks about the connection between estrogen levels and condylar resorption.

Do you have problems sleeping? My daughter said she recently began having problems sleeping and I'm wondering if she is developing sleep apnea due to the resorption.
I called and talked to the Center for Corrective Jaw Surgery in Santa Barbara, CA. They specialize in condylar resorption. We may go in for a consultation.
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kate0002
replied on May 4th, 2009
New User
Yes! Last summer, I went to see one of my doctors, I forget which one...but, they noticed how small my throat was. They suggested I go in for a sleep study before having any kind of surgery, because they thought I had sleep apnea due to the condylar resorption. Apparently this is dangerous during surgery because of choking reasons, or something like that.

I experience sleep paralysis a lot, and I guess that can be associated with sleep apnea. But, that's probably my biggest sleeping issue.
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