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Old 05-22-2009, 10:27 AM   #1
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3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Well Ive had TMJ disorder for 12 years now. The first few were the hardest when no one believed there was anything was wrong with me.
I started actual treatment over 7 years ago and have had three surgeries on the joints since then. For the last 2 years I have been a patient of Patrick Grossmans in London who is a very knowledgeable practitioner. Sadly he hasnt been able to reduce the awful headaches I am having.
The joint seems to have significantly degenerated and after the last MRI scan they were said to be at Wilkes stage 4 (Doctors write up is below.)
Both joints become exhausted when I eat or laugh, and the left side is uncomfortable all the time now.
Im beginning to think that splint therapy may not be the answer to my problems, but it is galling as I did have a period of about a year when everything was very good.
So the purpose of this post is to see if anyone has any ideas as to what I can do next Can I just take the splint out?
I am leaving London shortly and Dr Grossman has advised I see Brendan Stack does anyone know this chap and can they offer a review.
Id also be grateful if someone could shed a little more light on Wilkes stage 4 and just how bad or good that is.

Thanks for any responses The MRI report is below (starting with the conclusion)


MRI: Bilateral Temporomandibular Joint

CONCLUSION
These appearances would be consistent with bilateral anteriorly displaced non reducing articular discs. Surgical changes are noted on the left. There is evidence of bilateral synovitis and condyle and eminence degenerative change. The appearances would be consistent with Wilkes stage 4 joints bilaterally.

RIGHT SIDE CLOSED
The articular disc is poorly demonstrated but anteriorly displaced lying with its posterior aspect in the 9 oclock position in relation to the condyle. The condyle is centrally but superiorly positioned within the gleniod fossa with narrowing of the joint space. The condyle demonstrates flattening with some surface irregularity and anterior osteophyte formation. The eminence demonstrates flattening with inferior beaking. High signal is noted to surround the head of the condyle. There is no joint effusion noted.

RIGHT SIDE IS CLOSED WITH SPLINT IN SITU
The condyle is more anteriorly positioned within the glenoid fossa with slight widening of the joint space but the disc still remains anteriorly displaced

RIGHT SIDE OPEN
The condyle translates to a point in line with the most inferior point of the articular eminence. The disc is not recaptured and lies bunched up anterior to the condyle with an abnormal configuration.

RIGHT SIDE CORONAL CLOSED
On these images no disc material is seen to cover the condyle.

LEFT SIDE CLOSED
The articular disc is poorly demonstrated but appears to lie anterior to the condyle with its posterior aspect in the 9 oclock position. The disc has lost its normal configuration. The condyle is superiorly positioned within the glenoid fossa with narrowing of the joint space. Note is made of flattening with osteophyte formation. Metal artefact from the previous surgery makes it difficult to evaluate the lateral aspect of the condyle.

LEFT SIDE CLOSED WITH SPLINT IN SITU
On these images the condyle is more anteriorly positioned within the glenoid fossa but the disc is still not recaptured. There is minimal widening of the joint space compared to the images without the splint in situ. High signal is noted to surround the head of the condyle. There is no evidence of any joint effusion. The eminence demonstrates inferior beaking with some articular surface irregularity.

LEFT SIDE OPEN
The condyle translates to a point in line with the most inferior point of the articular eminence. The disc is not recaptured and lies bunched up anterior to the condyle.

LEFT SIDE CORONAL CLOSED
On these images no disc material is seen to cover the condyle. Note is made of surgical artefact lateral to the condyle. Soft tissue covering the condyle almost certainly represents thickened retrodiscal material.

LEFT SIDE CORONAL OPEN
Once again no disc material is seen to cover the condyle. No further abnormalities of note.

Thanks for getting this far. If you guys have any comments on this Id very much like to hear them.

 
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Old 05-22-2009, 08:59 PM   #2
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

I'm not good with the technical aspects of test results - so I will leave that to those members here who are - but just wanted to suggest to you to do an Advanced Search on Dr Stack on this forum as there have been some previous posts regarding him. I know my dentist has often referred to or mentioned him and his website is pretty impressive and that he does have a lot of experience in treating tmj.

 
Old 05-22-2009, 10:05 PM   #3
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Hi,
from the book "From TMJ to Smile Design" by Dr. Dawson I understand that the Stage IV is with very little or no chance that the disk will go back in place. What it says is that the occlusal corrections might be needed, on the other hand he warns of any irreversible permanent occlusal changes.

The main focus, as it is throughout the whole book, is to make sure that the jaw can go easily to the CR or ACR (centric relation or adapted centric relation).
He says that a splint might be helpful, but again it should allow the jaw to go to CR or ACR.
According to Dawson there are V stages of TMJ intracapsular disorders.
The "good" thing is that when the disk is totally gone there is no pain (according to the book) and the jaw bones are just sliding against each other.

What are your symptoms currently? Can you load the jaw, I mean can you bite hard on smth or they hurt when you press against food?

 
Old 05-23-2009, 02:08 AM   #4
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Thanks for replying guys - i'll do some more research on Dr Stack.

StillHope - My symptoms have now mushroomed - so i'm stuck with headaches every day. The morning is usually okay - but when it gets to the afternoon it's very unpleasant. It's a little like a pressure headache, but also something worse. It's very difficult to explain as it's just a feeling of wrongness in the head that is actually worse than the headache.
Also the left hand side of the face spasms under the eye (this was fine 3 weeks ago), but since my last adjustment it has been very bad - it also has an impact in social settings as the face is moving all over the place.

The left joint is constantly hurting now, so the encouraging thing is that the problem is localised and i know where all this bother is coming from.
Eating isn't really a problem and my mouth opening is about 48mm. I do therabyte three times a day and have done so for the last 2 years (god i hate that device.)

So it's not great, but i'm going to go back to Patrick Grossman next week (4th time in 3 weeks) and have another adjustment.
The thing that worries me is that i'm leaving England soon to go to Mexico City - so i'm not aware of any practitioners there. I'm also getting a little wary of TMJ specialists now, as i've been to a few and as nice as they've been they really have achieved very little.
But if anyone knows of anyone in Mexico City please do let me know.

I've had all the relevant brain, head, and neck scans so i don't think the problems there - just this damn TM joint.

Thanks for any more info or advice.

 
Old 05-23-2009, 08:37 AM   #5
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

May I ask what you feel was the cause of your tmj at the beginning? dental work, injury, or just came on by itself, ginding of teeth etc?

It is good you can eat and have a wide opening. I would love to be able to give you advice but I have yet to find an answer, but everyones case is different.

 
Old 05-23-2009, 02:27 PM   #6
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

luvtocamp - i've often wondered this myself. It started when i was doing a lot of weights. I was also studying very hard at the time. But I feel it probably happened during weight training. I also did martial arts for 8 years - so was bashed all over the place.
It could also have been something that happened when i was a child - basically i was fooling around with the loft ladder - accidentally flipped the release button and it flew down and cracked my skull (it was one of the old fashioned heavy ones.)

So there really are quite a few things to choose from. It started when i was 20 and i'm now 32. It's not been an easy ride - but it's encouraging and a relief to find communities like this online to share experiences and support eachother. Hopefully oneday soon TMJ disorder will be something that is easily curable.

 
Old 05-23-2009, 03:18 PM   #7
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Staffjam- sounds like you've had a very active physical life and maybe a few injuries. I think you right about maybe head trauma, I think alot of of have had it but not so bad to cause problems.

I probably had head trauma from a few falls and an abusive first husband, but not until a new upper denture did I start having problems and then 3 years of tmj treatment to hold the jaw back, and then forward, just made it worst.

I have been having cranial ostoepath for the last couple years with no relief, you may try that, so in a couple weeks I'm having NCR where they stick the balloons thing up the nose to expand and loosen the headbones as my head is tight and crammed and head pressure in the R. side. I am hoping this helps and will post on my results.

I'm 54 and have been dealing with it for almost 4 years and new dentures, bite adjustments , splints, PT, osteopaths, nothing helps, actually has made it worst, and I know my head is torqued, tight and jammed up.

I wonder now listening to your story if maybe some cranial might help you if you haven't tried that route. I often wonder why so many on this board don't get better and alot of people get worst with splint therapy, and people who have worn braces also seem to have more tmj problems. Problem is most dentists don't know about the head bones relationship to bite.

Last edited by luvtocamp; 05-23-2009 at 03:30 PM.

 
Old 05-23-2009, 05:25 PM   #8
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

I have had TMJ pain on and off all my life. Used a mouth splint many times. Recently have had prolotherapy injections with great relief. But I don't know if you have anyone specialized in this where you live. Even though you have had a lot of surgery, there are many cases of joint surgeries where prolotherapy has been able to help (knees, backs, other joints) after the surgeries. Just google in Prolotherapy and it will lead to to a website where you can find doctors who are specialized in prolo and neural therapy. There is a book called "Prolo Your Pain Away" by Dr. Ross Hauser. He is the "father" of prolotherapy in the U.S.

 
Old 05-23-2009, 07:06 PM   #9
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Angelica1- how many shots did you have. I have heard prolo is a good therapy for tmj too if you have the clicking and that.

Can you tell us what kind of symptoms you were having and how the prolo helped?
thanks.

Last edited by luvtocamp; 05-23-2009 at 07:41 PM.

 
Old 05-23-2009, 09:51 PM   #10
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Hi Staffjam,
when you say adjustments do you mean the bite adjustments? Is it on your splints or on the teeth/crowns or what?
Where are your headaches?

No, I don't think TMJ will be easily curable in any near and even not near future!

Pain on the left side does not mean that the left joint is with the problem. It's often in reverse. My left disk is likely stuck but I always have pain on the right.
What helps me the most is to relax the jaw , all surrounding muscles and keep a good posture.

The problem is that the teeth force the jaw to bite in "their bite" and move along "their path". If this is not the proper position for the jaw then the struggle between the teeth, muscles and the jaw begins.

I hope you'll find a dentist who can figure out what is your proper bite and help you.

 
Old 05-24-2009, 02:28 AM   #11
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Prolotherapy is good for TMJ; it doesn't matter if you have clicking or not. I had pain on the left especially referred to the ear and maxillary sinus area. I had grating noise and sometimes my jaw would lock up in the dentist's office during procedures. I had three injections, about a month apart. You should be able to find a good prolotherapist in Mexico City if that's where you live. Mine is actually a naturopath here in Arizona. The injections can be a week apart or longer. There is also a good prolo MD in the Los Angeles area.

 
Old 05-24-2009, 02:41 AM   #12
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Luvtocamp Yes Ive seen loads of Cranial Osteopaths, Craniosacral therapists, Acupuncture, Chiropracters, Physios, Bowen therapists (I think over the last 10 yrs Ive been single handedly supporting the alternative therapy community in London.)

Angelica1 Im going to look up prolotherapy as soon as Ive finished typing this to be honest Im willing to give anything a try.

StillHope yes its bite adjustments to the splint Im wearing. Ive been through all the braces and having the teeth moved sadly when they did all the dental work it got bad again and so I started from afresh with the splint. (this was not with Patrick Grossman its only recently I have been seeing him and he inherited quite a bad case.)
Thanks for your encouragement Ill probably go and see Dr Stack, who seems to have a very good reputation on this forum and on the net as a whole.

 
Old 05-24-2009, 02:16 PM   #13
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Angelica1- thanks for the info on your prolo. I have Dr. Hauser's book and I do believe in it. Glad your feeling better


Staffjam- so you've been through alot of alternative therapies too then. I think they are all good, but none have left a lasting effect on me.
I am hoping the neurocranial restructuing helps, I believe so much in the cranial bone stuff but the osteopaths can't expand the headbones by working on the outside of the head. I do think you should check on prolotherapy, I just reread Dr. Hausers stuff on it, in his book he has around 3 pages about it, he believes in treating the neck along with the joints. I had one treatment on my neck of prolo right before I saw the cranial osteopath and she told me to save my money and let her help my neck, well that was 1.5 years ago and I think I would of been further ahead sticking with the prolo. The shots hurt a little but it goes fast, and my neck was sore and tight for a couple days. I would not hesitate doing it again and I may after my neurocranial restructuring.

I of course know of no one in Mexico, but it would be good to find someone close to where your going to live, as with the bite adjustments and that it would mean alot of traveling which in itself can be stressful and expensive.

I hope someone might have some suggestions on who to see in Mexico.

Last edited by luvtocamp; 05-24-2009 at 02:38 PM.

 
Old 05-24-2009, 03:47 PM   #14
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Luvtocamp - Neurocranial restructuring sounds very interesting as my last Osteopath said my head was pretty messed up. Id be very interested in hearing how it works out for you good luck.
Ive just done some searching on prolotherapy and it sounds a little too good to be true Ill investigate it a little more, but after all the things Ive tried Im very sceptical on a lot of these alternative therapies.

Yeah I hope that someone can recommend a good practitioner in Mexico City there must be someone in the largest city in the world

 
Old 05-24-2009, 06:28 PM   #15
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Re: 3 surgeries, 7 years of treatment and now joint is getting worse Wilkes stage 4

Yea kinda figured your head was messed up since it got bad again after the dental work and the braces, plus the injuries you've had. Prolo probably wouldn't help either if the head is compressed and jammed.

Everyone tries to talk me out of the NCR, but its the only thing that makes sense to me , and I've done alot of research and I have so much head pressure on the right, and I know my head is torqued. I've been talking of having it done for the last year and a half so its not a rash decision .I wished I had a doctor who does more NCR closer to me, but the one I'm going to has been trained by Dr. Howell in 2003, but most people are not willing to do this .

OH I didn't know Mexico City was the largest city in the world, thanks for that tidbit.

 
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