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Old 05-11-2008, 10:24 AM   #1
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Have Had Joint Replacement Need Major Help

My daughter is 28 years old. She has now had nine jaw surgeries including the installation of TMJ Concepts implants over a year ago. Her most recent problem is that she has heterotopic ossification ocurring around the implant on her left side. Most recently the surgeon removed the ossification and recommended a low dose of radiation to prevent the bone from growing, which we did. This was two months ago and the bone is once again growing and she is now in worse pain than prior to the most recent surgery. We live in Ohio. We traveled to Pittsburgh to have the implants done and it now appears we may be heading to Dallas to meet with a Dr. who, I believe, wraps the implants in fat which acts as a barrier against any bone growth. As I mentioned we have had nine surgeries, over 3 years and the medical bills are just around $500,000. No one is able to give us a guarantee and my daughter continues to suffer. She is in constant pain. We believe we have found the best doctors in the country, but we are also desperate. We are interested in any and all thoughts.

 
Old 05-18-2008, 01:27 PM   #2
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Re: Have Had Joint Replacement Need Major Help

Hi HTMC,
I'm sorry to hear about your daughter's pain. I can relate as I am in a very similar position.
A little about me and what I've done: I'm 26 years old and had TMJ Concepts total joint replacements in 2006. I flew out of state to have the surgery performed by a doctor who is considered 'top' in the field. When I had the surgery, both joints were completely fused shut (bilateral bony ankylosis).
I have a major history of forming heterotopic bone...after each surgery I have had (about the same amount as your daughter), I would fuse shut. On top of this I had extreme pain.
I really saw no other options, as I'm sure your daughter understands as well. Her surgeons may not have told her though, that joint replacements are just not meant to relieve pain. The best thing we can hope for is an increase in our function. This is really hard to swallow at any age, but being young and having our whole lives ahead of us, I think it's particularly hard for us and others to understand. So many surgeries are automatically successful after they are completed that it's hard to believe after 9 surgeries someone wouldn't be better, you know?

Anyway, the best relief I have found so far is a pain management specialist. This is a doctor who obviously focuses on treating pain. My particular physician is a neurologist and psychiatrist, and does a good job treating the nerve pain I have from repeated incisions/surgeries, the bone pain from what I assume is heterotopic bone growth, and the muscular pain. He specializes in treating patients with chronic regional pain syndrom/RSD so he's really great at managing medications and figuring out what works best. This isn't to say that I'm pain free... I'm far from it. I am reminded constantly that I have jaw problems/implants and don't expect to wake up one morning miraculously feeling better. I guess my hope is that over the years new technology will develop and those of us with bone growth or severe degeneration will have some answers.

Unfortunately, that's really all I know. Research isn't really happening because there aren't many of us who need these implants (although I do see the surgical case numbers skyrocketing if things keep going as they are - so many conservative patients are being led into surgery without being told the risks). There is also no money.

As far as wrapping the joint in fat, does the surgeon say how long this will last? Unfortunately, many people have had fat grafts put in only to fuse or grow bone right through them. This happened to me with grafts. Once someone grows bone they are usually at risk to keep growing it, and nothing stops them...

I wish I could give you more encouraging news. Like I said, the best thing for me has been to find a good pain specialist and also work at trying to accept the situation I'm in. It's really difficult, because I want to be "normal," doing the same things my peers are doing... but everything in my life is different. My priorities have totally changed - I wouldn't think about drinking or really even going out late at night. I have had trouble keeping a steady job and any work that I do has to be really flexible... on top of that my insurance hasn't really covered any of my surgeries, so I have had to pay a lot out of pocket as well.

If you have any questions, comments, or anything I would be more than happy to answer. Also I really applaud you for taking an active role in your daughter's life. My father, as hard as this may be to understand for me, seems to think I'm lazy and want to be this way.

Hang in there!
Sincerely,
M
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Old 05-18-2008, 05:33 PM   #3
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Re: Have Had Joint Replacement Need Major Help

Hi M,

Thanks so much for responding to my post. Unfortunately you and my daughter belong to what appears to be a very small club. Her life, like yours has become very disruptive. The last thing I think she is, is lazy and wants to be this way. Even though I do not know you, from the way your letter is written I am sure you are not either.

I am interested in knowing more about the treatment you are receiving for pain management. Over the weekend I spent a lot of time researching this problem, and have concluded that our goal is to try and find a non-surgical solution. Based on what I have read, I believe it is too soon to have surgery (her last surgery was two months ago) and I have also found, like you, that the fat graphts will only last for a limited amount of time.

I noticed from your post that you live in California. A good resource are the people at TMJ Concepts. I have called there several times and have spoken with one of their engineers. In many respects they are a clearinghouse for information since they remain in contact with the doctors who are using the product.

You may want to take a look at a couple of the abstracts I found as I was prepping for our trip to Dallas on Wednesday. I do not have all of the links, but if you search the titles of these articles I think you will be able to find them.

[removed]

My daughter also believes she will never be 100%. Her constant goal is to try and get to 80%. She has not worked the majority of this year. Fortunately she has decent insurance and has been able to collect disability.

My thoughts our with you and hopefully we can share information that will be beneficial to all.

Thanks again for your post.

HTMC

[Do not mention internet search engines, copy & paste information from websites, or post websites with advertising. Please read more about this and other details, by clicking the "Posting Policy" above. Thanks - Well-come Moderator.]

Last edited by Well-come; 05-19-2008 at 09:26 PM.

 
Old 05-18-2008, 11:05 PM   #4
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Re: Have Had Joint Replacement Need Major Help

Hi there,
Yep, we definitely do belong to a small club. My surgeon before I had the total joint replacements was absolutely amazing, but unfortunately he just didn't do the specialized surgery that I needed eventually.. he used to tell me that less than 5% of TMJ disorder patients need surgery (at least with his patients.. I bet the number is bigger than that in general), and of that 5%, much less than 1% end up going on to surgeries that your daughter and I have had. We would joke that I was in the .00005% of patients with these problems. I have talked with probably thousands of TMJ disorder patients over the years and have only met one besides your daughter that even remotely seemed the same as me.
Thank you for your compliments. I think part of my Dad's feelings are pure frustration, out of spending so much money, out of not seeing me doing the things I should be, and out of knowing that I'm in pain. Some people no matter how much you educate them about the disease just aren't equipped to handle something like this... so I know he is doing the best *he* can do.. and I appreciate that.. it just gets really frustrating at times.
Pain management has been pretty simple for me, I am on various medications for pain (long acting opiates), nerve pain (Neurontin and Klonipin), sleep (Klonipin), depression (Lexapro), and muscle spasms (Soma). Mostly the trick is in finding someone who is skilled at titrating the medications up and down, and adding/tweaking things when need be. You have to find a doctor who is comfortable treating chronic intractable pain long term... and most importantly, your daughter has to feel like she can trust the doctor and talk with him/her about her concerns. I have built a great relationship with my doctor over the years. I have also been on various studies for non-cancer chronic pain which are usually a good thing because I get state of the art treatment/medications before they are approved by the FDA. My advice is to ask around... do you have a favorite pharmacist who has helped out and knows your daughter's situation? He or she probably knows of a doctor in the area like this. You might ask your daughter's surgeon... the reason I got referred to my pain specialist is because he was literally right down the road from my surgeon and they knew each other from treating the same patients. Basically what I've found is that the good doctors know other good doctors... so ask the docs who have taken an interest in really trying to improve your daughter's life.

Wow, her last surgery was 2 months ago? Well, if it was the total joint replacements, then she isn't even done with the swelling yet - it was MONTHS before my swelling went down... this could mean good things, that she might still have some pain relief ahead of her.. you never know. It's definitely too early to consider another surgery.... but yet, I understand your position. Severe pain makes people desperate. I doubt I would have total joint replacements if it weren't for the pain.... it makes me cringe to say that, because I pretty much KNEW going into it that it might be a long shot... but I had to do it anyway.

Yes, the people at TMJ Concepts are absolutely fantastic. I have talked with a number of people there including the president of the company and they have all been incredibly helpful and sympathetic to what I've gone through. My favorite thing about them is that they do not endorse the total joint replacements for just anyone - they will actually encourage people to NOT have them.

I have seen the studies you mentioned... I was going to have radiation before my total joint replacements but I was considered not a candidate because I have had salivary gland stones, and there is a chance of those with radiation. Of all things!!! LOL! The stones always seemed rather benign to me, but who knows.. When I said there was no research, I guess I meant in comparison to other problems... most disorders that are this disabling have been researched a lot more. Since there is little funding in the TMJ world, and because the patients are complicated, there is little incentive for physicians to go into treating/researching TMJ disorder.

I really believe that pain management could help your daughter get closer to her goals. It has really helped me, and while I don't work right now, I have off and on (although not full time & it must be flexible). I find that as with many chronic pain problems, this flares, and some times are worse than others.

Anyway, I better get to bed before I fall asleep here. I will write again soon. Hope you're having a good night.
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Old 05-19-2008, 03:49 AM   #5
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Re: Have Had Joint Replacement Need Major Help

Good Morning,

Thanks for the pain management information. I will pass it along to our doctor here as well as share the information when we travel to Dallas later this week.

My daughter had her jaw joint replacements in 2007 at the University of Pittsburgh Medical Center. One side was done in Februrary of that year and the other side was done in May. The most recent surgery, which was two months ago, was done to clean out some of the bone that had grown and was inhibiting the joint on her left side. She was in quite a bit of pain and they decided the best course of action was to clean out the bone. This surgery was followed by five low doses of radiation, which was to prevent the bone from growing. Here we are two months after the radiation and her pain has returned and the scans show that the bone is growing.

My understanding is that the Dr. in Dallas has had a lot of success with the fat grafts, however, as I mentioned in yesterday's post, our goal is to find a non-surgical solution. Like your experience I am aware that the fat grafts may not be a long term solution and I think it would be best if we could avoid additional surgery.

In addition to traveling to Dallas we are also looking into hooking up with an internist who has some focus on bone issues. We are fourtunate to have The Ohio State University Medical Center in town and have been able to hook up with a resource who is helping us find the best doc. Our goal here is to have a quarterback leading the conversations with the specialists. We also want to look into the possibility that some other condition might be causing the jaw problems. Just trying to cover all of the bases.

Our TMJ problem started about three years ago. How about you?

 
Old 05-19-2008, 08:21 AM   #6
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Re: Have Had Joint Replacement Need Major Help

I have written this post several times and my browser keeps crashing. I guess that's what I get for using the new beta Firefox... anyway, I would love to talk with your daughter if she is up for it.

Hopefully we can connect. Talk with you soon!
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Last edited by h20plusdirt; 05-19-2008 at 11:28 AM.

 
Old 05-31-2008, 10:35 AM   #7
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Re: Have Had Joint Replacement Need Major Help

I'm going Monday to a phsycian at UPMC Montefoire. Now I'm afraid after reading your thread. Do you think they are the best in Pittsburgh? I'm in so much pain and can hardly open my mouth to eat. I feel so bad for your daughter. I certainly know what she is going through though.

 
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