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Post by shevy on Apr 11, 2016 22:04:49 GMT
I have had issues with my TMJ/TMD for 33 years. I've had 5 surgeries in the era of "more surgeries are better!" And finally stopped when all it did was create new issues each time.
My GP would not change my pain plan set up by a pain clinic 15 years ago. Instead I did physical therapy, acupuncture and myofacial release. Still no lessening of the pain.
So I went to a new THJ/TMD doctor who took a new CT scan.
I grow bone in the joint space in my jaw. The disk and ball/head of the condoyle is long gone. A sylastic block was put in long ago to hold the space open and it disappeared over time into my body. I've had the joint space cleared out twice and my own tissue put in to hold the joint space open. But I'm back to the right side being bone on bone from the end of the condoyle where the ball was and the skull. The left side has grown so much bone that it's changed the shape of my face.
So I'm setting up for surgery again. But no one seems interested in figuring out why the bone grows so that it can be stopped and I can avoid surgeries every 5-10 years.
Who do I see for the bone growth? orthopedist? Someone else?
Anyone have any current and active support groups online about TMJ/TMD? The ones I'm finding are old and not very used. |
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Post by padresfan619 on Apr 11, 2016 22:18:42 GMT
An orthodontist. I have TMJ and had to have a device put in my mouth for a couple of years to force the bottom part of my jaw forward to relieve the pain. The device has been out for 10 years but the muscle memory still keeps my jaw forward.
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Post by shevy on Apr 11, 2016 22:23:00 GMT
I am seeing a TMJ dental specialist and an oral surgeon. But neither seem to care about why the bone grows or if there is a way to stop it.
I've had 5 surgeries on my jaw and it's frankly so messed up that I live in chronic pain daily.
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Post by laureljean on Apr 11, 2016 23:04:01 GMT
I wonder if a cranio-facial surgeon could help you.
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scrapaddie
Drama Llama
Posts: 5,090 
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Post by scrapaddie on Apr 11, 2016 23:06:39 GMT
I have had issues with my TMJ/TMD for 33 years. I've had 5 surgeries in the era of "more surgeries are better!" And finally stopped when all it did was create new issues each time.
My GP would not change my pain plan set up by a pain clinic 15 years ago. Instead I did physical therapy, acupuncture and myofacial release. Still no lessening of the pain.
So I went to a new THJ/TMD doctor who took a new CT scan.
I grow bone in the joint space in my jaw. The disk and ball/head of the condoyle is long gone. A sylastic block was put in long ago to hold the space open and it disappeared over time into my body. I've had the joint space cleared out twice and my own tissue put in to hold the joint space open. But I'm back to the right side being bone on bone from the end of the condoyle where the ball was and the skull. The left side has grown so much bone that it's changed the shape of my face.
So I'm setting up for surgery again. But no one seems interested in figuring out why the bone grows so that it can be stopped and I can avoid surgeries every 5-10 years.
Who do I see for the bone growth? orthopedist? Someone else?
Anyone have any current and active support groups online about TMJ/TMD? The ones I'm finding are old and not very used. I don't know who does it, but my friend recently had an 18 hour surgery involving three teams of surgeons to correct bone overgrowth |
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,763
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Post by scrapngranny on Apr 11, 2016 23:17:38 GMT
When you ask these doctors who want to do more surgery why the bone keeps growing back, what is their answer?
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Post by hop2 on Apr 12, 2016 0:31:41 GMT
Perhaps a bone Doctor? My neice has a disease where she grows bone spurs where she has minor injuries. At times it has inhibited her joint movement.
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Post by shevy on Apr 12, 2016 20:49:36 GMT
When you ask these doctors who want to do more surgery why the bone keeps growing back, what is their answer? They're not interested in why. They just want to take it out so I have more freedom of movement and hopefully less pain. |
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Post by annabella on Apr 12, 2016 20:55:33 GMT
I think you should send emails to specialists at schools around the country and ask for their opinion. I'm reading a book called The Patient's Playbook: How to Save Your Life and the Lives of Those You Love by Leslie D. Michelson and it says doctors get random requests like this all the time and are happy to help. And ask them for a referral. And if necessary fly to another state to seek treatment.
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