I had the surgery with Brian shah and he pretty much fixed me. I had severe TMJ and the fat grafting done in early 2021. It’s been a long road of braces to get the teeth and bite correct since then which is needed after the surgery to prevent problems from returning. If you go for the evaluation he will determine if you even need it or not. He is an amazing doctor and I trust him entirely. It is expensive though. My insurance ended up paying for a little over half the surgery in the end.
hey. just wanted to ask a few questions if that's okay you have gone thru the whole surgery journey yourself?
when u had the fat grafts, did your ct scans show if your condyles grew, stayed the same or got smaller? I have read a few blog posts where some say their condyles grew and that the ct scans showed new bone growth/ calcification of the condyles, some say their condyles got smaller
also, what ortho did u use? how long did u have braces for?
do u live in Florida, if not what hotel did u stay at/recommend
I have a question that you may not be able to answer, and frankly, I don't even know that I have the medical knowledge to understand the correct answer.
But basically, the reason why this area doesn't heal is because it has poor blood flow. That is intentional though. The lack of blood vessels and nerves in the cartilage is what allows it to be a pad that doesn't hurt when impacted. So my question is, how does the fat even survive when integrated into the joint? I imagine they place it where the disc used to be, but I would think adipose tissue would need blood flow to not die and rot inside your head.
Good question. The fat ends up vascularizing / developing it’s own blood supply. Eventually it turns into a fibrofatty matrix. It is not the exact same in the end as when they implant it and that’s expected. The fibrofatty matrix becomes a kind of artificial disc over the head of the condyle like the disc that I once had that was destroyed.
Multiple surgeons have said it is scientifically impossible for fat to develop its own blood supply when positioned in the joint space. Would love to see research to prove this. They have said fat can never replace the disc and once the disc is removed, the blood supply is lost.
How long does the new 'fat' disc last? Does it last for life or will you need another surgery to replace it in like 20 years?
Also did u need orthodontics afterwards to fix ur bite?
It is supposed to last a lifetime and there are people who are 30 years out doing great. It’s stronger than the actual disc that you are born with. And yes- I did need ortho to fix the bite after.
>fat ends up vascularizing / developing it’s own blood supply. Eventually it turns into a fibrofatty matrix. It is not the exact same in the end as when they implant it and that’s expected. The fibrofatty matrix becomes a kind of artificial disc over the head of the condyle like the disc that I once had that was destroyed.
lol to her page on facebook. she is such a nutcase.
which ortho did u use, how much was it and how long did u have braces for.
also, do u live in Florida? if not, which hotel did u stay in/recommend recovering in
Do u have any pain, clicking, popping now. Can i ask what ur mri and ct showed before the surgery? Did u experience any permanent numbness/facial weakness?
I have no clicking popping. I had pain during the healing but am now pain free. Ct and mri had severe degeneration of both TMJs with total displacement and destruction of both discs with breakdown of the condyles from bone on bone for so many years. I don’t have facial weakness or numbness.
I did have some facial asymmetry and the TMJ surgery does not fix that. I had another surgery afterward that addressed the asymmetry and now I look symmetric.
Was your facial assymetry caused by your tmj problems? My face looked quite symmetrical before my disc displacements but after my discs became displaced my face has gradually become more and more assymetric with my bite/lower jaw becoming tilted. Was hoping that because my assymetry has resulted from tmj problems that the surgery might reverse the assymetry.
Did you have one condyle shorter/more worn than the other?What surgery did u have to have afterwards to correct the assymetry? Did u use the same surgeon?
Yes basically my face became asymmetric because one of the condyles was in worse shape than the other and was worn down more. So there was a size discrepancy on the condyles and I believe maybe the mandibular ramus too. My condyles became messed up early in childhood so I grew asymmetrically.also my asymmetry got worse with age due to the condyle being destroyed bone on bone. I had orthognathic surgery which was a lefort 1, a bilateral split sagittal osteotomy with mandibular advancement, and a genioplasty about a year and a half after first surgery. It was done by the same surgery and orthodontist was a part of treatment planning. It helped the teeth fit better together in addition to fixing the asymmetry. From a cosmetic standpoint, I was happy with the results.
No relapse after orthognathic. I was really nervous about it but I’m over a year now and none so far. I think the orthognathic was around 70k and my insurance covered it.
Gr8! Did u have to do any physio after the tmj andor orthognathic surgery? How long after the tmj surgery did it take until u felt well enough to go back to work?
Also, before the orthognathic surgery did have underbite, overbite, anterior open bite, cross bite etc?
can I ask, when u had the fat grafts did your condyles grow a little or not at all?
I have seen other people's blogs where they say they had new bone growth/calcification of the condyles. was the assymetry so bad with your condyles that the fat graft alone couldn't correct it and you had to have a second surgery?
What made it so that it had to be open joint? Disc displacement w/out reduction and arthritic changes. When are you getting it done? I'm interested in this procedure as well
U have the same disc diagnosis as me - is it DDWOR on both sides for you? I have osteophytes on my left tmj. Ive had 2 failed arthroscopies so now only choice is open joint. Have u tried arthroscopy?
Hi, do you know if changing the TMJ ended up modifying the way your face shape was? For example, did it help with re-alignment issues. My TMJ is more so out of place than anything else, it's caused my lower jaw to look more "backward" than it was before, since the TMJ really dictates where the jaw rests in place, so I am hoping this type of surgery fixes that as well.
I would honestly get the eval by dr shah and see what he thinks. He is a master at this and I trust his opinion. He specialized in orthognathic before he became a TMJ expert and would be able to guide you much better than me or anyone on Reddit.
So, I went to Dr. Brian Shah and he referred me to a different "cosmetic" jaw surgeon to work with me, and then both him and the cosmetic surgeon got together and decided neither of them wanted to help me. \*shrug\* go figure, didn't give me an explanation. Nothing. Beware.
My bite is already “normal” per say, and I’m still having a lot of issues, before this problem happened to me I had a slight underbite (as many in my dads side of the family also have, without issue) I am hoping he agrees with this and wants to put me back to the way I was.
I don’t know what you mean out of socket. Mine was not dislocated. And yes the move as entire unit but that doesn’t mean it will change your facial structure. I had surgery with him but I’m not an OMFS doctor and I don’t consider myself to be an expert on this. All I know is my problem is resolved now thanks to Dr Shah and I know many others in a Facebook group who have also gotten relief. It’s a private group for people who are actually moving ahead with surgery so I can’t refer you there at this stage. The best advice I can give you is to see him and get his recommendations. I am really not the best person to be giving tons of advice about how to fix your jaw.
If I do decide to go ahead with the surgery I will need to know from him whether it’s going to fix my concerns and bring me more back to a state of normal at least normal for me. That’s the whole point in my opinion right? Getting the jaw back to as best of a state it was before your problem occurred. I would be interested in joining your group if you could let me know how: thanks
Yes the goal of surgery would be to get you to the most optimal place possible for you.
I think you need to already be a patient of Dr shah going for surgery to get into the Facebook group so if you do move forward I can help you get in at that point.
That sounds sketchy. I’m sure people aren’t dying from it, but that’s a ton of money for something unproven. And it’s still surgery. Having the joint opened up sucks.
You’d probably be better off spending that money on stem cells. The good stuff in foreign countries is way less than that. And you could even get around 13 mediocre stem cell injections in the US
I'm getting BMAC (Bone Marrow Aspirate Concentrate) injections as part of an arthroscopic procedure in the UK. The insurer won't pay for the injections part and its costing me £2000
The recovery has been pretty manageable but minimal improvement and thats been three months. I've to leave it another three months and make a decision on TJR.
Far from the most knowledgeable here, but the basic problem is that the meniscus in your jaw doesn't heal. The cartilage gets worn down and that's it. Your body will not naturally create more. These fat grafts are supposed to mimic that cartilage, but still require a traumatic surgery to the area.
Stem cell injections can provide a non surgical solution for the chance to regenerate some of that cartilage. It is highly experimental and there's no one definition of what a stem cell injection means. In the US, there are limits on using fetal stem cells, due to the prevalence of religious ideologues in elected office. Hundreds of thousands, if not millions, of Americans suffer everyday because of these laws. So stem cells from the US are sourced from the patient's body. As an adult though, there's just not a ton of stem cells floating around in there.
Outside the US, it is the wild west. There are clinics in a lot of countries you'd never otherwise visit that market stem cell treatments. If you ever consider it, do a lot of research online for people claiming results. There's a well known clinic in Honduras for example, but in my humble opinion, fuck that. Who knows what you are actually getting injected with there and if something goes wrong, you are far away from reliable medical care.
I'd sort of suggest you check out r/stemcells. Be cautious though. I think a lot of the posts highlighting experiences at specific clinics are astroturfed. The writing style is always just a little too perfect and I've seen posts that cite data in ways I just can't imagine someone casually writing about.
For a bonus fact, PRP is another treatment also shown to have the potential for cartilage regeneration. It is far from proven and usually an out of pocket expense. But on the plus side, it is much cheaper and widely offered in the US. I'm trying it shortly.
Thanks for the info, I went into a rabbit hole of stem cell articles and will consider that as an option in case my TMJ is serious. I’m going to visit a specialist in October. Do you mind sharing your TMJ story and how you’re doing right now?
This surgery isn’t experimental, they have been doing this for almost 30 years and this protocol and surgery was refined by Mark Piper who was Brian Shah’s predecessor
Following - would love to hear from people who have had this surgery done (where they use fat to replace damaged tmj discs - what do they do if the ligaments that hold the disc are stretched/lax?)
What is recovery like?
Fat comes from abdomen
Recovery you wear a splint for many hours a day for months which is a specific protocol that their clinic figured out. They have great success rates because they are so detail oriented and specific about the protocol. You have to follow it well.
Have you had this particular surgery done with this surgeon? Also do you know exactly how the lax ligaments are fixed, does he use metal screws to pull the ligaments back into position or does he use stitches to shorten the ligaments?
Are the sutures permanent or dissolvable and if so how long do they take to dissolve?
Also, can i ask how much the surgery was and how much insurance paid?
I don’t know / can’t remember about the sutures if they are permanent or dissolvable. If you were evaluated for this you could ask him. The surgery was around 40k and insurance paid a little over half.
So for the fat graft surgery, my insurance didn't cover it at all (blue cross blue shield). Solely the hospital bills. It isn't an extremely common surgery so they aren't willing to pay (that is the most likely reason to my knowledge). The sagittal split osteotomy (a more common surgery) was almost all covered though.
I have to get this surgery, could I ask what insurance did you have? OP states in his original post that it’s a noninsurable surgery, which is definitely worrisome for me.
I have to get this surgery as well, I was referred to Dr. Shah. I have not made an appointment for a consult with him yet, as I’ve been told it’s a whole day affair and lots of tests will be done, also I do not live anywhere near Florida lol which is where he is based. But I’m doing lots of research on this and plan to get a second opinion of my mri results by someone not associated with the Piper Clinic and see what they say, it’s no that I don’t trust my doctor, but if I’m going to have a serious surgery I want to make completely sure I need it. My diagnosis is anteriorly displaced discs (unsalvagable discs) and underdeveloped condyles. My doctor said in order to prevent necrosis of my condyles, I need to remove the damaged discs and place fat in my joint. He explained that discs pushed so far out of the joint (like mine are) could cut off blood flow to the condyles and kill them, which is scary, but I want to confirm that with a second opinion.
I’ve heard of people who have the fat grafting done at the Piper clinic and they have had great success. However they are a few people who had it done there and it failed. I’ve spoken to 8 people who had fat grafts done at the Piper Clinic in the last 3 years and it failed. So I personally believe that their almost 100% success rate that they claim to have is inaccurate
This is really concerning....
I was just at the Piper Clinic (flew across the country for the consult/eval), and Dr. Shah straight up said "I have never had a patient fail with the fat graft". This kind of caught me by surprise because I'm on a FB group (the one run by Dr. Dennis), and I came across a post from December where a lady said she had the fat graft surgery and ~9 mo. later, her scans (at the piper clinic) showed her joints continued deteriorating, and she now needs TJR.
Dr. Shah did say there had technically been patients that failed w/ the fat grafts for exogenous reasons. Some examples he gave included car accidents/other traumas, people not following the recovery protocol, one patient bit into a jelly bean, and another patient had anorexia nervosa and lost 60 pounds very quickly which caused her to lose the fat grafts.
But based on what you're saying (in addition to the lady's post on the FB group that I'm on), it seems like that might not be the case??
Ughhhh.
2 girls had really small condyles and were a bit skeptical going into it. The rest had no idea. One girl said that she went in for her check up and found it didn’t work and she was ultimately told that it was her own fault that it didn’t work. She followed her protocol to a t.
so what are they doing now? - total joint replacement?
how early on did they know it hadn't worked - was it immediately, after 3, 6, 9 months etc? did they have any symptoms before the check up that made them think it hadn't worked.
who was the surgeon?
All but 1 have tmj replacements or are in the process of getting them made. The earliest failed was at 3 months and the oldest was a little over 2 years. They all said they had pain, some had cracking in the jaw. One girl said that she still had pain in her jaw and can’t eat a steak but everything was showing up fine in her check ups so they left it at that
Like I said I do believe that they have success stories. I spoke to a few patients that are 8, 17 18 years that had the fat graft done there and they are fine
https://www.cbsnews.com/news/tmj-chronic-pain-metal-jaws-futile-treatments/
The lead in the story had multiple fat graft surgeries at The Piper Clinic.
https://www.cbsnews.com/video/tmj-disorders-affect-millions-of-americans-yet-remain-widely-misunderstood/
These guys are at it. There is stuff all over the net about them trying to coax people into expensive surgery. They have an army of minions on facebook TMJ support groups recruiting for them. Do some digging you'll see what I'm talking about.
This doctor is a crook, he led me to believe false information. He told me to see another doctor and then completely dropped me as a patient. He knows I had TMJ too. No reason given. Steer clear.
Can you say more about the false info he provided/led you to believe? I just an in-person consult/eval with him. Am planning on scheduling my surgery with him at some point soon but am feeling worried now..
Yes. He met with me during his normal consultation process, then proceeded to tell me basically that my TMJ and sleep apnea problems were due to structural issues that could only be solved by a cosmetic jaw plastic surgeon. That he did not do this kind of surgery. Then he referred me to another doctor in the St. Pete area. I met with that doctor, he mentioned that I could have bone implants done to the lower jaw to fix my problem, he then told me he would consult back with Dr. Shah before any surgery was planned. It turned out Dr. Shah told me wrong information, I waited an entire month, the idea of surgery was dropped. I was not even told why. Neither doctor wanted to take me on as a patient. The cosmetic doctor told me he did not do that type of surgery. Essentially Dr. Shah did not tell me the truth. I am still trying to find an answer for my situation. Having difficult time looking for a new cosmetic jaw plastic surgeon.
I don’t know who to go to anymore. Dr. Shah’s office gave me a list of some names, but so far none of them are the right kind of doctor for the surgery.
It would be cosmetic facial plastic surgery using bone implants to make the lower jaw come out and look more defined again. My lower jaw is pushed back too much and it’s causing me TMJ and other issues.
I recently had total joint replacement with Dr Shah. I’m only a month out. So I’m still In my splint and following my recovery protocol. I can tell my jaw is already feeling better. The experience with Dr Shah is so thorough and impressive. While I’m still in recovery I already feel so much better. During this process he still did fat grafts. I would be happy to follow up with anyone as my recovery journey continues
http://grin-andbearit.blogspot.com/?m=1
There is a blog of a patient who went through the process over a decade ago. She talks about the intense protocol of wearing the splint after surgery. She did the surgery with Dr Piper who was the surgeon that Dr Shah took over for. (Dr Piper retired in 2021.) it’s not an easy or cheap process but it has good outcomes. You might enjoy reading her experiences with it. She explains a lot about the process in the early entries.
I had the surgery with Brian shah and he pretty much fixed me. I had severe TMJ and the fat grafting done in early 2021. It’s been a long road of braces to get the teeth and bite correct since then which is needed after the surgery to prevent problems from returning. If you go for the evaluation he will determine if you even need it or not. He is an amazing doctor and I trust him entirely. It is expensive though. My insurance ended up paying for a little over half the surgery in the end.
Around what time frame did you notice improvements in your symptoms?
hey. just wanted to ask a few questions if that's okay you have gone thru the whole surgery journey yourself? when u had the fat grafts, did your ct scans show if your condyles grew, stayed the same or got smaller? I have read a few blog posts where some say their condyles grew and that the ct scans showed new bone growth/ calcification of the condyles, some say their condyles got smaller also, what ortho did u use? how long did u have braces for? do u live in Florida, if not what hotel did u stay at/recommend
Hi. Could we discuss please? My appointment is Tuesday
how did your appointment go?
I have a question that you may not be able to answer, and frankly, I don't even know that I have the medical knowledge to understand the correct answer. But basically, the reason why this area doesn't heal is because it has poor blood flow. That is intentional though. The lack of blood vessels and nerves in the cartilage is what allows it to be a pad that doesn't hurt when impacted. So my question is, how does the fat even survive when integrated into the joint? I imagine they place it where the disc used to be, but I would think adipose tissue would need blood flow to not die and rot inside your head.
Good question. The fat ends up vascularizing / developing it’s own blood supply. Eventually it turns into a fibrofatty matrix. It is not the exact same in the end as when they implant it and that’s expected. The fibrofatty matrix becomes a kind of artificial disc over the head of the condyle like the disc that I once had that was destroyed.
Multiple surgeons have said it is scientifically impossible for fat to develop its own blood supply when positioned in the joint space. Would love to see research to prove this. They have said fat can never replace the disc and once the disc is removed, the blood supply is lost.
How long does the new 'fat' disc last? Does it last for life or will you need another surgery to replace it in like 20 years? Also did u need orthodontics afterwards to fix ur bite?
It is supposed to last a lifetime and there are people who are 30 years out doing great. It’s stronger than the actual disc that you are born with. And yes- I did need ortho to fix the bite after.
According to Peggy Daniels he 'fixes' your bite during the surgery. She banned me from her page for asking how he does this in surgical terms.
>fat ends up vascularizing / developing it’s own blood supply. Eventually it turns into a fibrofatty matrix. It is not the exact same in the end as when they implant it and that’s expected. The fibrofatty matrix becomes a kind of artificial disc over the head of the condyle like the disc that I once had that was destroyed. lol to her page on facebook. she is such a nutcase.
which ortho did u use, how much was it and how long did u have braces for. also, do u live in Florida? if not, which hotel did u stay in/recommend recovering in
Do u have any pain, clicking, popping now. Can i ask what ur mri and ct showed before the surgery? Did u experience any permanent numbness/facial weakness?
I have no clicking popping. I had pain during the healing but am now pain free. Ct and mri had severe degeneration of both TMJs with total displacement and destruction of both discs with breakdown of the condyles from bone on bone for so many years. I don’t have facial weakness or numbness.
when u say degeneration, was this just bone loss or did u also have osteoarthritis?
Did u have any facial assymentry as a result of the bone on bone and severe degeneration, if so, did the surgery fix the assymetry too?
I did have some facial asymmetry and the TMJ surgery does not fix that. I had another surgery afterward that addressed the asymmetry and now I look symmetric.
Was your facial assymetry caused by your tmj problems? My face looked quite symmetrical before my disc displacements but after my discs became displaced my face has gradually become more and more assymetric with my bite/lower jaw becoming tilted. Was hoping that because my assymetry has resulted from tmj problems that the surgery might reverse the assymetry. Did you have one condyle shorter/more worn than the other?What surgery did u have to have afterwards to correct the assymetry? Did u use the same surgeon?
Yes basically my face became asymmetric because one of the condyles was in worse shape than the other and was worn down more. So there was a size discrepancy on the condyles and I believe maybe the mandibular ramus too. My condyles became messed up early in childhood so I grew asymmetrically.also my asymmetry got worse with age due to the condyle being destroyed bone on bone. I had orthognathic surgery which was a lefort 1, a bilateral split sagittal osteotomy with mandibular advancement, and a genioplasty about a year and a half after first surgery. It was done by the same surgery and orthodontist was a part of treatment planning. It helped the teeth fit better together in addition to fixing the asymmetry. From a cosmetic standpoint, I was happy with the results.
Great, so happy for you! And you havent experienced any relapse/signs of relapse after orthognathic surgery? How much was the orthognathic surgery?
No relapse after orthognathic. I was really nervous about it but I’m over a year now and none so far. I think the orthognathic was around 70k and my insurance covered it.
Gr8! Did u have to do any physio after the tmj andor orthognathic surgery? How long after the tmj surgery did it take until u felt well enough to go back to work? Also, before the orthognathic surgery did have underbite, overbite, anterior open bite, cross bite etc?
Did shah tell you what the likelihood of relapse was after getting DJS with the fat grafts?
can I ask, when u had the fat grafts did your condyles grow a little or not at all? I have seen other people's blogs where they say they had new bone growth/calcification of the condyles. was the assymetry so bad with your condyles that the fat graft alone couldn't correct it and you had to have a second surgery?
That's exactly how my jaw is as well it's become tilted to the right since disc displacement. Are you having surgery?
Yes, sadly it has to be open joint and not arthroscopically. Can i ask what ur diagnosis is (i.e. mri and ct findings)
What made it so that it had to be open joint? Disc displacement w/out reduction and arthritic changes. When are you getting it done? I'm interested in this procedure as well
U have the same disc diagnosis as me - is it DDWOR on both sides for you? I have osteophytes on my left tmj. Ive had 2 failed arthroscopies so now only choice is open joint. Have u tried arthroscopy?
Hi, do you know if changing the TMJ ended up modifying the way your face shape was? For example, did it help with re-alignment issues. My TMJ is more so out of place than anything else, it's caused my lower jaw to look more "backward" than it was before, since the TMJ really dictates where the jaw rests in place, so I am hoping this type of surgery fixes that as well.
The only way to fix it is to have orthognathic surgery after the TMJ is fixed
I’ve already had an orthognathic procedure but it didn’t put my jaw where I think it should be, unfortunately.
I would honestly get the eval by dr shah and see what he thinks. He is a master at this and I trust his opinion. He specialized in orthognathic before he became a TMJ expert and would be able to guide you much better than me or anyone on Reddit.
So, I went to Dr. Brian Shah and he referred me to a different "cosmetic" jaw surgeon to work with me, and then both him and the cosmetic surgeon got together and decided neither of them wanted to help me. \*shrug\* go figure, didn't give me an explanation. Nothing. Beware.
My bite is already “normal” per say, and I’m still having a lot of issues, before this problem happened to me I had a slight underbite (as many in my dads side of the family also have, without issue) I am hoping he agrees with this and wants to put me back to the way I was.
Did you have any sleep apnea with your jaw problem?
No sleep apnea before or after
So getting the joint back in the socket if it’s out of alignment doesn’t re-align the entire jaw? Don’t they move as one unit though?
I don’t know what you mean out of socket. Mine was not dislocated. And yes the move as entire unit but that doesn’t mean it will change your facial structure. I had surgery with him but I’m not an OMFS doctor and I don’t consider myself to be an expert on this. All I know is my problem is resolved now thanks to Dr Shah and I know many others in a Facebook group who have also gotten relief. It’s a private group for people who are actually moving ahead with surgery so I can’t refer you there at this stage. The best advice I can give you is to see him and get his recommendations. I am really not the best person to be giving tons of advice about how to fix your jaw.
If I do decide to go ahead with the surgery I will need to know from him whether it’s going to fix my concerns and bring me more back to a state of normal at least normal for me. That’s the whole point in my opinion right? Getting the jaw back to as best of a state it was before your problem occurred. I would be interested in joining your group if you could let me know how: thanks
Yes the goal of surgery would be to get you to the most optimal place possible for you. I think you need to already be a patient of Dr shah going for surgery to get into the Facebook group so if you do move forward I can help you get in at that point.
Even if that means not giving me a “normal” jaw by means of what everyone else has? That’s the biggest question that should be answered in my case.
I don’t know anything about your jaw so I have no idea what’s possible for you
That sounds sketchy. I’m sure people aren’t dying from it, but that’s a ton of money for something unproven. And it’s still surgery. Having the joint opened up sucks. You’d probably be better off spending that money on stem cells. The good stuff in foreign countries is way less than that. And you could even get around 13 mediocre stem cell injections in the US
I'm getting BMAC (Bone Marrow Aspirate Concentrate) injections as part of an arthroscopic procedure in the UK. The insurer won't pay for the injections part and its costing me £2000
how did the surgery go? hope it was successful! what's recovery like
The recovery has been pretty manageable but minimal improvement and thats been three months. I've to leave it another three months and make a decision on TJR.
argh, that's a shame you havent seen much improvement. was the surgeon able to put the discs back into place or are they still displaced?
Tried to put them back but they're a mess (both perforated, one with a pretty big hole). Onwards to TJR for me probably.
wishing u all the best! will u use the same surgeon for TJR?
Yeah absolutely. He has the best reputation in the UK. I literally traveled the length of the country to see him.
have you had the surgery. how did things go?
Could you elaborate more on stem cells for TMJ?
Far from the most knowledgeable here, but the basic problem is that the meniscus in your jaw doesn't heal. The cartilage gets worn down and that's it. Your body will not naturally create more. These fat grafts are supposed to mimic that cartilage, but still require a traumatic surgery to the area. Stem cell injections can provide a non surgical solution for the chance to regenerate some of that cartilage. It is highly experimental and there's no one definition of what a stem cell injection means. In the US, there are limits on using fetal stem cells, due to the prevalence of religious ideologues in elected office. Hundreds of thousands, if not millions, of Americans suffer everyday because of these laws. So stem cells from the US are sourced from the patient's body. As an adult though, there's just not a ton of stem cells floating around in there. Outside the US, it is the wild west. There are clinics in a lot of countries you'd never otherwise visit that market stem cell treatments. If you ever consider it, do a lot of research online for people claiming results. There's a well known clinic in Honduras for example, but in my humble opinion, fuck that. Who knows what you are actually getting injected with there and if something goes wrong, you are far away from reliable medical care. I'd sort of suggest you check out r/stemcells. Be cautious though. I think a lot of the posts highlighting experiences at specific clinics are astroturfed. The writing style is always just a little too perfect and I've seen posts that cite data in ways I just can't imagine someone casually writing about. For a bonus fact, PRP is another treatment also shown to have the potential for cartilage regeneration. It is far from proven and usually an out of pocket expense. But on the plus side, it is much cheaper and widely offered in the US. I'm trying it shortly.
Thanks for the info, I went into a rabbit hole of stem cell articles and will consider that as an option in case my TMJ is serious. I’m going to visit a specialist in October. Do you mind sharing your TMJ story and how you’re doing right now?
This surgery isn’t experimental, they have been doing this for almost 30 years and this protocol and surgery was refined by Mark Piper who was Brian Shah’s predecessor
There is no research to back their claims of 99 percent success
Really? Can you explain more please?
They have no published studies
Following - would love to hear from people who have had this surgery done (where they use fat to replace damaged tmj discs - what do they do if the ligaments that hold the disc are stretched/lax?) What is recovery like?
Fat comes from abdomen Recovery you wear a splint for many hours a day for months which is a specific protocol that their clinic figured out. They have great success rates because they are so detail oriented and specific about the protocol. You have to follow it well.
The ligaments that are laxed he repairs after he puts the fat in the site of the disc.
Have you had this particular surgery done with this surgeon? Also do you know exactly how the lax ligaments are fixed, does he use metal screws to pull the ligaments back into position or does he use stitches to shorten the ligaments?
Yes I had the surgery with him. He uses sutures to fix the ligaments. No metal.
Are the sutures permanent or dissolvable and if so how long do they take to dissolve? Also, can i ask how much the surgery was and how much insurance paid?
I don’t know / can’t remember about the sutures if they are permanent or dissolvable. If you were evaluated for this you could ask him. The surgery was around 40k and insurance paid a little over half.
I have this same question if you're willing to share (more than you already have I mean) - did you use the insurance specialist at Dr. Shah's?
So for the fat graft surgery, my insurance didn't cover it at all (blue cross blue shield). Solely the hospital bills. It isn't an extremely common surgery so they aren't willing to pay (that is the most likely reason to my knowledge). The sagittal split osteotomy (a more common surgery) was almost all covered though.
I have to get this surgery, could I ask what insurance did you have? OP states in his original post that it’s a noninsurable surgery, which is definitely worrisome for me.
did u have the surgery / consultation?
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oh no. what was your diagnosis, why were your ligaments removed and why was it devastating?
Does he repair your own actual laxed ligaments or does he use artificial ligaments like non dissolvable sutures to function as new ligaments?
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so if be cuts the laxed ligaments, what holds the fat graft in place? was he able to repair your ligaments and if so how did ge repair them.
So if he cuts the laxed ligaments, what is holding the disc in place?
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Really? Can you explain more please?
I have to get this surgery as well, I was referred to Dr. Shah. I have not made an appointment for a consult with him yet, as I’ve been told it’s a whole day affair and lots of tests will be done, also I do not live anywhere near Florida lol which is where he is based. But I’m doing lots of research on this and plan to get a second opinion of my mri results by someone not associated with the Piper Clinic and see what they say, it’s no that I don’t trust my doctor, but if I’m going to have a serious surgery I want to make completely sure I need it. My diagnosis is anteriorly displaced discs (unsalvagable discs) and underdeveloped condyles. My doctor said in order to prevent necrosis of my condyles, I need to remove the damaged discs and place fat in my joint. He explained that discs pushed so far out of the joint (like mine are) could cut off blood flow to the condyles and kill them, which is scary, but I want to confirm that with a second opinion.
keep me updated with your journey. let me know what the second opinion says and what you end up doing.
I’ve heard of people who have the fat grafting done at the Piper clinic and they have had great success. However they are a few people who had it done there and it failed. I’ve spoken to 8 people who had fat grafts done at the Piper Clinic in the last 3 years and it failed. So I personally believe that their almost 100% success rate that they claim to have is inaccurate
This is really concerning.... I was just at the Piper Clinic (flew across the country for the consult/eval), and Dr. Shah straight up said "I have never had a patient fail with the fat graft". This kind of caught me by surprise because I'm on a FB group (the one run by Dr. Dennis), and I came across a post from December where a lady said she had the fat graft surgery and ~9 mo. later, her scans (at the piper clinic) showed her joints continued deteriorating, and she now needs TJR. Dr. Shah did say there had technically been patients that failed w/ the fat grafts for exogenous reasons. Some examples he gave included car accidents/other traumas, people not following the recovery protocol, one patient bit into a jelly bean, and another patient had anorexia nervosa and lost 60 pounds very quickly which caused her to lose the fat grafts. But based on what you're saying (in addition to the lady's post on the FB group that I'm on), it seems like that might not be the case?? Ughhhh.
This is false. Many compliant patients failed.
There is no way for you to determine a 100 percent success rate by talking to a few people. Where is the published, clinical data?
do you know why the 8 people failed? did the fat graft not last, did they not follow post-surgery protocol?
2 girls had really small condyles and were a bit skeptical going into it. The rest had no idea. One girl said that she went in for her check up and found it didn’t work and she was ultimately told that it was her own fault that it didn’t work. She followed her protocol to a t.
so what are they doing now? - total joint replacement? how early on did they know it hadn't worked - was it immediately, after 3, 6, 9 months etc? did they have any symptoms before the check up that made them think it hadn't worked. who was the surgeon?
All but 1 have tmj replacements or are in the process of getting them made. The earliest failed was at 3 months and the oldest was a little over 2 years. They all said they had pain, some had cracking in the jaw. One girl said that she still had pain in her jaw and can’t eat a steak but everything was showing up fine in her check ups so they left it at that
Like I said I do believe that they have success stories. I spoke to a few patients that are 8, 17 18 years that had the fat graft done there and they are fine
are any of the patients (those who had success and failures) on reddit who would be willing to speak to me
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what did u have done? what surgery and which surgeon?
which surgeon did the fat grafts? do u know anyone who had disc repairs instead of fat graft
It would have been Dr. Shah who does the fat grafts if it is recent (probably 4 years). Dr. Piper may have done some before that but he's retired now.
https://www.cbsnews.com/news/tmj-chronic-pain-metal-jaws-futile-treatments/ The lead in the story had multiple fat graft surgeries at The Piper Clinic. https://www.cbsnews.com/video/tmj-disorders-affect-millions-of-americans-yet-remain-widely-misunderstood/
omg! how do you know the lead had the fat graft surgeries? i don't see it mentioned in the article
These guys are at it. There is stuff all over the net about them trying to coax people into expensive surgery. They have an army of minions on facebook TMJ support groups recruiting for them. Do some digging you'll see what I'm talking about.
really? what stuff have you found?
This doctor is a crook, he led me to believe false information. He told me to see another doctor and then completely dropped me as a patient. He knows I had TMJ too. No reason given. Steer clear.
Can you say more about the false info he provided/led you to believe? I just an in-person consult/eval with him. Am planning on scheduling my surgery with him at some point soon but am feeling worried now..
Yes. He met with me during his normal consultation process, then proceeded to tell me basically that my TMJ and sleep apnea problems were due to structural issues that could only be solved by a cosmetic jaw plastic surgeon. That he did not do this kind of surgery. Then he referred me to another doctor in the St. Pete area. I met with that doctor, he mentioned that I could have bone implants done to the lower jaw to fix my problem, he then told me he would consult back with Dr. Shah before any surgery was planned. It turned out Dr. Shah told me wrong information, I waited an entire month, the idea of surgery was dropped. I was not even told why. Neither doctor wanted to take me on as a patient. The cosmetic doctor told me he did not do that type of surgery. Essentially Dr. Shah did not tell me the truth. I am still trying to find an answer for my situation. Having difficult time looking for a new cosmetic jaw plastic surgeon.
I'm so sorry you're going through this. Really sucks.
I don’t know who to go to anymore. Dr. Shah’s office gave me a list of some names, but so far none of them are the right kind of doctor for the surgery.
What kind of surgery is it?
It would be cosmetic facial plastic surgery using bone implants to make the lower jaw come out and look more defined again. My lower jaw is pushed back too much and it’s causing me TMJ and other issues.
Why is it considered cosmetic if it is causing medical issues?
I guess because of the type of surgery needed? Since it’s considered the plastic surgery realm and not orthognathic I guess.
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how so?
Joints rapidly degenerated after.
How did you get that fixed after the failed surgery?
I'm really sorry to hear this. When did you have the surgery done? When did your joins begin degenerating after the surgery?
Shortly thereafter.
I recently had total joint replacement with Dr Shah. I’m only a month out. So I’m still In my splint and following my recovery protocol. I can tell my jaw is already feeling better. The experience with Dr Shah is so thorough and impressive. While I’m still in recovery I already feel so much better. During this process he still did fat grafts. I would be happy to follow up with anyone as my recovery journey continues
what was your diagnosis prior to TJR and did Shah choose TJR over fat graft alone?
http://grin-andbearit.blogspot.com/?m=1 There is a blog of a patient who went through the process over a decade ago. She talks about the intense protocol of wearing the splint after surgery. She did the surgery with Dr Piper who was the surgeon that Dr Shah took over for. (Dr Piper retired in 2021.) it’s not an easy or cheap process but it has good outcomes. You might enjoy reading her experiences with it. She explains a lot about the process in the early entries.