Surgery - Idiopathic Condylar Resorption

[barbschm]

Hi everyone

My name is Barbara and I was diagnosed with Idiopathic Condylar Resorption (ICR) around 3 years ago (I am now 25). It started off with toothache which my dentists diagnosed as being caused by bruxism. I started to wear a nightguard which helped, but then started gradually noticing that my bit was opening up. It took a little while but eventually my orthodontist and oral surgeon diagnosed me with ICR.

I live in Australia, and the oral surgeon I've been going to is one of the best. He suggested that we wait until the resorption stopped and then treat with orthodontics and orthognathic surgery to correct the bite. He says he has had 1 other case like this and he successfully treated the patient in this way.

I am at the stage now where the process has stopped (according to the surgeon), and I have been wearing braces for over a year, with a surgery planned for 31 March this year. He is still not 100% what he will do with the surgery (I have an appointment in a couple of days where he will take models and do the surgery plan), but he mentioned Lefort 1 and Sagittal Split with a possible genioplasty as well, as my chin is non-existent. He had initially only wanted to operate on the top jaw, so jus the Lefort, but I really want to fix my receding chin and lip incompetence (which is getting each time worse due to the ICR), so he will most likely do both upper and lower.

I have been living with this for a while, and although I have had some anxiety over the years, I sort of just trusted the surgeon and tried not to think about it too much, until now. Now I am very anxious about the surgery - everything about it! From what I am reading on the internet, including on this forum, the treatment seems to always include surgery on the TMJ joints themselves, not just orthognathic. However my surgeon said from the start that he does not want to operate on the joints as it is very risky..I feel like my bite keeps changing, and I am not sure if it is only due to the orthodontics or whether the ICR is still at work on my joints. I am very worried that the process may still be going on in my TMJ as it seems to me that my open bite is getting worse and I can barely close my lips now.
I am also very concerned about a relapse, as well as the fact that he only relies on x-rays and I have not had an MRI done, nor do my doctors seem to have got together to discuss my treatment - the 2 seem to be independent of each other (orthodontics and surgery).
I am so upset and suffering from serious anxiety, not to mention low self-esteem due to my face changing so much, and constantly worrying about what is going to happen, whether the surgery will make me worse and whether I am going to need a root canal soon due to wearing braces (this is my second time), as I already have so many filling sin my mouth and my teeth are not good.
Is there anyone out there who has had experience with a treatment plan like mine - i.e. orthognathic surgery only?

I feel incredibly alone as my family lives thousands of kilometres away and I know they feel really helpless as well. I can't talk to my partner because he thinks I should just "be positive" and trust the doctors and just do the surgery and see...he can't stand me "complaining", and of course since this is such a rare condition, I have never even heard of anyone else having it. It is such an isolating experience, and I feel so helpless. This is compounded by the fact that I live in Australia and I cannot find anything on the internet relating to this in Australia - I would even know which doctors to go to.. All the research and technological advances seem to be happening in the States.

Does anyone have experiences to share regarding this condition? What about the recovery from these 2 surgeries?

Every time I htink about teh surgery I get really anxious and terrified - help!

[suzyscientist]

Hi Barbara,

I'm afraid I don't know much about your condition, but I just wanted to say: hang in there! You've been very brave to get as far as you have, and I know how scary it is too, especially when you feel alone.

I guess my advice is firstly, you're not alone. There's a whole forum full of people here who understand what you're going through.

Secondly, never be afraid to ask questions. Your surgeon may be one of the best but he has to convince you that his plan is the right plan. Discuss your concerns with him. My surgeon only decided the day before what he would do with my jaw.

It's hard to find people who understand. As much as your partner can be supportive, he can't understand what you're going through... it is hard for people to realise why we do this to ourselves, and the impact of braces and surgery on our confidence and self esteem. It might be worth asking your surgeon about counselling? I speak from experience in saying that counselling can be a very rewarding process.

Finally, just stay true to yourself. Listen to your gut! If you aren't happy with something say so.

Best of luck with everything!

Suzy

[barbschm]

Hi Suzyscientist

Thank you so much for your words of encouragement. It's the next morning after I wrote my post and I feel a bit more optimistic today. I'm putting together a list of questions to ask my surgeon at my appointment on Monday and I'm going to try to be really assertive and get my answers. I think part of the problem is my surgeon is very matter of fact and just wants to get on with it, and perhaps doesn't realuse how much patients need to have their hand held, so to speak.

Thank you fir your advice about counselling, i think you have a point and I have started seeing a counsellor lately about my anxiety.

Most of all it's so good to know that there are other people out there who have been through ortho surgery (even though I've never met one!).

I will update once I have spoken to the doc.

If there is ANYONE out there suffering from idiopathic condylar resorption, plase write to me.

Thanks,
B

[hduggan]

If there is ANYONE out there suffering from idiopathic condylar resorption, plase write to me.

Sorry to hear you're going through this.

If you click on the "search" button towards the top of the page and put in condylar, you'll find a few people here who are dealing with it.

[barbschm]

Thanks for the advice - I did just tat and have spent hours reading other people's posts :

I will update afer my meeting with the OS tomorrow (I have a 3-page long list of questions!)

Wish me luck everyone!!

[suzyscientist]

Good luck Barbara. And remember - you're not alone!

Suzy

[barbschm]

Thanks Suzy

Appointment went OK, except major setback - surgery's been cancelled for now because basically my orhtodontist messed up and I have a gap between my wisdom tooth and molar on my bottom left side.. My bite looks really off, and I feel like maybe my condylar resorption hasn't stopped. I am so disappointed!! The OS said it'll be another 6 months...that'll make it nearly 2 years since I got my braces!

I'm so angry at the ortho, I'm going to give him a piece of my mind next week when I see him.

Anyways, went for another xray and have another appointment with the OS on Monday so we'll see hwere it all goes...I'm tyring not to stress too much of get too frustrated...

B

[TMJ Survivor]

Hi Barbara, I have been suffering from Idiopathic Condylar Resorption since I was thirteen. At fifteen my joints joints started to dislocate and in my twenties I had three surgeries to correct the problem. First I had an Arthroscopy of both joints (basically a clean out of scar tissue etc). When that did not work I had an open jaw surgery to tighten the ligaments. When that did not work they went back in and did a second arthroscopy. When this failed a CAT scan revealed that I had Idiopathic Condylar Resorption. By this stage the condylar bone in both joints had half disappeared and I was in a lot of pain and not functioning with daily chores very well. (Eg gardening and hanging out the washing.) Soon after I was told that both joints were unsalvagable and I needed bilateral replacements. By this time I had had the condition for over twenty years. I had the joint replacement one year ago. It was successful, (although painful). I am not pain free but the pain gets better all the time rather than worse and is heaps better than before the surgery. I can now perform most tasks I was unable to do before the surgery and I can chew a decent steak again. Things that I learned along the way (there is hardly any info out there on this condition) is that your surgeon is right, joint replacement is risky which is why you need to find a skilled surgeon. (One who has done heaps of these surgeries and knows things like the need to add fat graphs around the neck of the joint etc). My surgeon over here in NZ is very experienced (actually he's my hero if the truth be told) and if you want, I could ask if he could recommend someone for you. Secondly, if you do eventually need joint replacement, make sure you receive a custom made concepts joint, preferrably fully titanium. (The rolls royce model). Also 80% of people with this condition cannot absorb vitamins and minerals properly so you may want to try supplements if you find yourself tired all the time (and prone to muscle spasms). Research a good brand that does not have synthetic vitamins and minerals in it. I had to try a few different ones before I found one that would work. Lastly, this condition is hormonal and got worse for me at puberty and with two pregancies. If you do not correct your hormone imbalance, this condition will not get better. Studies have now linked it in some cases to the contraceptive pill. I tried several ways to help balance my hormones and have found that Progest-E oil that you place under your tongue really works well for me. Sorry to bombard you with so much info, but I know at the beginning I was desperate for someone to advise me and could not find anyone.
Hope some of this helps.

[TMJ Survivor]

Hi RMF7825, just thought that I would let you know that when I try and read the message you sent to me I am informed that I am not authorised to receive private messages.

[kelis]

@TMJ Survivor: I am looking for a very experienced oral surgeon in NZ, as i had jaw surgery 5 times altogether and my upper jaw is still in the wrong place, so i have to go through it again. Would you let me know where to find your surgeon? Is he experienced in jaw surgery?

[RMF7825]

TMJ Survivor -
Not sure about why you can't receive PM. Maybe board Administrator can step in and answer that. Not enough posts???

[TMJ Survivor]

Hi RMF7825, My surgeon's name is Bruce Murdoch and his practice is called the Broadway Surgical Clinic and is located in Palmerston North, New Zealand. Due to his experience in joint replacement, he does travel throughout NZ to perform this procedure. He has mentioned operating on patients in both North and South Islands during conversations. I cannot recommend him highly enough. He is not only top of his field, but is compassionate and is right up to date with the latest research. He is not in this field for the money, but rather to see patients get better. I would trust his advice and if you had to travel to have a consultation with him, I feel it would be worth it. He will give you honest advice. He had performed the three operations on me prior to receiving my new joints and did not just leave me when these options failed but persisted in finding an accurate diagnoses and solution. He also did not take the replacing of my joints lightly and tried every available option first.
I hope this helps.

[kelis]

Hi TMJSurvivor,

thank you for your response, do you know if Dr. Murdoch does jaw surgery e.g. moving upper jaw?

[cotis]

Dear TMJ Survivor,

I am a 30-year-old veterinarian who has been recently (within the last two months) tentatively diagnosed with idiopathic condylar resorption. I went from a normal bite documented by orthodontic photos and xrays less than 2 years ago (I was seen for TMJ pain x 3+ years and evaluation for a nightguard) to a severe open bite with only my third molars and maybe a bit of my second molars touching now. MRI and CT show severely beaten up discs, loss of cortical bone on the condyles, and misshaping of both condyles. I am interested in what you said about hormones influencing this condition. Who helped you sort through hormone therapy? I don't know if it is related at all, but I discontinued taking the pill right about the time my jaw started changing.

I am trying to coordinate two dentists, an orthodontist, a third dentist who only sees TMJ issues, two oral surgeons, and the head of the University of Maryland Facial Pain Center to develop a working diagnosis and therapeutic plan. I also am waiting to see a rheumatoid specialist (although basic tests for rheumatoid arthritis are negative) and an infectious disease specialist (Lyme disease and other tick-borne disease are common here, although basic tests for those are also negative). I don't want to do anything irreversible (major surgery, etc) until I know as much as possible about my condition and my medical options. The pain is manageable (as long as I don't want to actually chew, haha), and as one doctor put it, "no one [he knows of] has ever died of an open bite."

Two days ago, one oral surgeon mentioned that recent research has found estrogen receptors or something in the condyles, and they think since conditions like this most frequently affect young women, there might be a hormonal component. Has anyone with this condition found someone with a strong interest in hormones that might be able to look further into this condition? Maybe some kind of endocrinologist who also knows about weird joint conditions? Again, who helped you sort through hormone therapy?

Thanks!
Carrie

On a potentially unrelated note, I also have had interstitial cystitis - like symptoms, or feelings of a UTI, sometimes without evidence of an infection. It seems weird to have two things like this at the same time. I am also tired a lot, and was unable to take vitamin supplements when a lot of the condylar resorption was probably taking place in the last two years because vitamins triggered my interstitial cystitis like symptoms . . . I am hoping the magic of google searches might put me in touch with other people who have had similar experiences.

[cvn]

This is the study they're maybe referring to: Oral contraceptive pill use and abnormal menstrual cycles in women with severe condylar resorption: a case for low serum 17beta-estradiol as a major factor in progressive condylar resorption done by Dr Arnett and Dr Gunson in Santa Barbara. It's the only one I'm familiar with, in any case. I can pull it off pubmed for you if you don't have access. They pull all of their patients off hormonal birth control due to the ethinylestradiol suppressing production of estradiol - the problem comes in that ethinylestradiol does not have the bone repairing properties of estradiol that appear to be necessary for bone repair in the condyles and so the damaged bone lyses instead. I've been off hormonal birth control for 2.5 years now and they've had me on estradiol and progesterone therapy because multiple blood tests showed I now had insufficient natural production of estradiol. Being on the pill was likely a large contributor to my relapses, and I haven't relapsed after this latest surgery (hooray!), but it is pretty weird being on hrt at 30.

High five for being a vet. I'm currently slogging through school in a second career bid - it seemed like a good idea at the time and probably will again eventually, I hope. Until then though, uuuuuuuuuuuuugh.

Good luck!