pipdog
08-21-2008, 08:44 AM
I saw my TMJ x-rays yesterday. Both my condyles are deformed with the ends bent forward. Dentist called them my 'shepherd's crooks'.
I had braces as a teenager and it looks like the orthodontist set my bite with my mandible too far back and over the years the compression slowly caused the condyles to bend and then at some point the displacement of one of the discs.
I think the dentist said that the bone of the mandible is of a different type and has regeneration potential and that once the compression is eased off they will straighten out but I was washed over with info from him and my own questions that I forget the exact details. Can anybody relate to what I am talking about?
I've been wearing a repositioning appliance for 5 months now to try and recapture a 'medially displaced non-reducing disc'. I'm told its harder to correct non-surgically than anterior displacement and have been given only a 15% chance of success with the splint therapy.
Responses have been that the clicking/twanging noises stopped about a month into wearing the splint and the quality and location of the pain has changed, its gone more into the TMJ itself, before it was general masseter/temporalis pain so something is happening I'm just not sure if its for the good. Dentist says area is healing after years of microtrauma, I hope he's right but at least something is changing. Also I used to get periods of feeling 'spaced out' and all over achiness, I know this is not a very specific description but whatever these periods were, they have totally stopped since wearing the splint. Maybe it was that 'brain fog' fibromyalgia syndrome that many people on here have described.
They will have me get another MRI after 12 months to see if the disc has been recaptured if not then disc plication surgery in Virginia from a guy who does them all the time and got his training as a field surgeon in Vietnam. I don't know what to think about this detail - is it good or bad?
I met another patient who had it done and she was happy with the outcome but reading the messages on surgery here makes me very wary
I had braces as a teenager and it looks like the orthodontist set my bite with my mandible too far back and over the years the compression slowly caused the condyles to bend and then at some point the displacement of one of the discs.
I think the dentist said that the bone of the mandible is of a different type and has regeneration potential and that once the compression is eased off they will straighten out but I was washed over with info from him and my own questions that I forget the exact details. Can anybody relate to what I am talking about?
I've been wearing a repositioning appliance for 5 months now to try and recapture a 'medially displaced non-reducing disc'. I'm told its harder to correct non-surgically than anterior displacement and have been given only a 15% chance of success with the splint therapy.
Responses have been that the clicking/twanging noises stopped about a month into wearing the splint and the quality and location of the pain has changed, its gone more into the TMJ itself, before it was general masseter/temporalis pain so something is happening I'm just not sure if its for the good. Dentist says area is healing after years of microtrauma, I hope he's right but at least something is changing. Also I used to get periods of feeling 'spaced out' and all over achiness, I know this is not a very specific description but whatever these periods were, they have totally stopped since wearing the splint. Maybe it was that 'brain fog' fibromyalgia syndrome that many people on here have described.
They will have me get another MRI after 12 months to see if the disc has been recaptured if not then disc plication surgery in Virginia from a guy who does them all the time and got his training as a field surgeon in Vietnam. I don't know what to think about this detail - is it good or bad?
I met another patient who had it done and she was happy with the outcome but reading the messages on surgery here makes me very wary
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Thelma-Louise
08-21-2008, 12:30 PM
Gee your dentist seems to give you a lot of detailed info on your case and does a good job in explaining it as well. I am not as technical with all of this I should be - but I do not seem to have any disc or joint issues from what I have been told - but during my research I have read elsewhere that the condyle will change shape while undergoing tmj splint therapy and return to normal shape and positioning over time. One of my condyles was flattened and my tmj dr told me he was not too concerned about it b/c that was easy enough to correct - but I didn't question him further on how that would happen.
The fact that your symptoms are mostly responding in a positive way suggests to me you have made good progress so far - if not excellent (from where I sit I wish I was seeing them same progress with myself)- and while I understand it is only natural to dwell on the possibility you might need surgery one day - I have also read that in some cases not everything concerning the tmj's has to be 100% for one to live a relatively painfree and symptom free life.
Surgery is such a general term and although there are many valid points in terms of it being the final option or used as a last resort - there are so many variables associated with it in terms of what type of "surgery" is done, how extensive the damage was to begin with, the surgeon doing the procedure, your own body's ability to heal itself, etc. Not all surgicall procedures result in making things worse - generally though those are what tend to surface since there is seldom a reason to post success stories since one tends to then move on with their life. Even if success stories were posted more often - it still wouldn't mean your surgery would be as successful b/c again you would be using a different surgeon or your problem could be slightly different. But then again your surgery may be major success - I honestly don't think one can accurately assess or weigh the risks and benefits of any surgery based on other peopels experiences b/c the variables for each are unique and different.
The fact that your symptoms are mostly responding in a positive way suggests to me you have made good progress so far - if not excellent (from where I sit I wish I was seeing them same progress with myself)- and while I understand it is only natural to dwell on the possibility you might need surgery one day - I have also read that in some cases not everything concerning the tmj's has to be 100% for one to live a relatively painfree and symptom free life.
Surgery is such a general term and although there are many valid points in terms of it being the final option or used as a last resort - there are so many variables associated with it in terms of what type of "surgery" is done, how extensive the damage was to begin with, the surgeon doing the procedure, your own body's ability to heal itself, etc. Not all surgicall procedures result in making things worse - generally though those are what tend to surface since there is seldom a reason to post success stories since one tends to then move on with their life. Even if success stories were posted more often - it still wouldn't mean your surgery would be as successful b/c again you would be using a different surgeon or your problem could be slightly different. But then again your surgery may be major success - I honestly don't think one can accurately assess or weigh the risks and benefits of any surgery based on other peopels experiences b/c the variables for each are unique and different.
nynavey
08-21-2008, 01:53 PM
Hello. I've also got a deformed condyle on my right side and my dentist told me the same thing yours did - it can reform to a more normal shape after time. I was concerned when I saw how different it looked on the Xray (kind of flat on top, almost pointed on one side, but perfectly shaped into the 'socket' so it was obvious how it got so misshapen), and he said he has said many x-rays 10 years after therapy that have perfectly round condyles. He believes it will change as long as I continue the treatment for life (meaning always wearing some type of splint at night). He didn't say anything about the type of bone material (I didn't ask either), but I would imagine because that's such a high-movement area with the tension of opposing muscles and the added tension of the other TMJ that it might be more likely to reshape than other less-involved areas of the body. Just my guess.
Your report of improvements after 5 months is a positive thing for me - thank you for sharing that. Now that I'm in this, I want to speak with everyone who's ever had it done, but all I run across in real life are those who had their teeth wired shut for a month and it not working anyway. Not exactly what I want to hear! It sounds like you have a very thorough dentist too.
Your report of improvements after 5 months is a positive thing for me - thank you for sharing that. Now that I'm in this, I want to speak with everyone who's ever had it done, but all I run across in real life are those who had their teeth wired shut for a month and it not working anyway. Not exactly what I want to hear! It sounds like you have a very thorough dentist too.
TiredOTired
08-26-2008, 08:17 PM
I wonder what the dr.'s name is in the states that you were going to be referred to was---do you have that info? The surgeon?
I have a condyl that has slipped out of position entirely. (Actually, maybe both of mine are-one in particular is worse than the other.) It is really quite bad and I can't open my mouth all the way without at least 2 huge pops just to open all the way up. I haven't seen an Xray of them in years but the last one I did was really bad and that was years ago before the worsening of the joint. I can only imagine what they look like now.:(
I have a condyl that has slipped out of position entirely. (Actually, maybe both of mine are-one in particular is worse than the other.) It is really quite bad and I can't open my mouth all the way without at least 2 huge pops just to open all the way up. I haven't seen an Xray of them in years but the last one I did was really bad and that was years ago before the worsening of the joint. I can only imagine what they look like now.:(
nynavey
08-27-2008, 12:41 PM
TiredoTired, not sure which of us you're addressing. I see Dr. Simmons in Nashville, TN, quite a ways from you. I don't know if I can post his information on this forum, but he is easy to find. He's affiliated with Vanderbilt.
Yes, your joints may look worse than before, but today they are probably better than they will be tomorrow. Please forgive if this has been asked already, but are you getting any treatment at present?
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Yes, your joints may look worse than before, but today they are probably better than they will be tomorrow. Please forgive if this has been asked already, but are you getting any treatment at present?
[Do not list search engines. Please read more about this by clicking the "Posting Policy" above. Thanks - Well-come Moderator.]
badhairday
09-04-2008, 06:01 AM
Wow, its great to hear that condoyles can regain their shape. When I wanted to get orthodontic treatment for a minor aesthetic issue, the orthodontist took an xray and showed me that one of my condoyles was deformed. She said this could lead to issues later on in life and I assumed that I would have typical TMJ issues or something major. I am obsessed with my condoyles and it's great to know that any damage that has occurred could potentially be reversed!
gorgee
09-04-2008, 11:35 AM
Pipdog, I have tmjd, rather severe, and my condyles are deformed, my face is also assymetrical, and sliding more to the right. It is noticible to myself and doctors. My left one is ground down to 1/4 of it size and the right one is dislocated. I have been in splint therapy for 5 months, and this morning woke up with a tmj flare up. I am so discouraged, and in pain. I have had tmj for 8 years now, and it always was off and on, and I could treat it with heat/cold, and tylenol and advil and it would go away in a couple of days. Last Sept 4, 2007 I had a major flare up, like no other, and it stayed, and the pain spread throughout my body. I have battled pain since in my face, jaw, teeth, left eye, migraines, neck, shoulders, back, hands, feet, joints, muscles, and bones. I have met with 3 surgeons, 2 who scheduled me for surgery, I was in so much pain, I was ready, but my insurance would not cover the surgery for tmj (I hate the name now), the pain has stayed since last September, but today I have another major flareup (weird, how it is almost 1 year to the date), and am seeing my facial pain doctor tomorrow, and am going to say this splint therapy is not working, what next?
As I read your post, I wanted to tell you that I have been diagnosed with other things along the way as the pain spread through my body. I have been diagnosed with myofascial pain syndrome, fibromyalgia, temporal tendonitis, neuralgia, and of course, depression, and anxiety. My body feels like one big bruise, it was weird how last October the pain spread. I did not understand, and was lost as to how I had pain in my face/jaw, and then it went into my neck and shoulders. My migraines increased and it is weird how my left side is the painful side and I only get migraine pain behind my left eyeball. I hope to have more answers tomorrow as I also see a neuro-opthamalogist.
Are you able to feel your muscle spasms? I often can feel my scalp, and face, it is extremely sore to the touch, and I have learned about muscle spasms in my back and other areas too. Do you ever feel like you are just a mess? I do not know what to say to my husband today, because right now it feels like it is always something.
Does anybody work? I stay at home, and am applying for disability, I have been denied once, but appealed. I am hoping, and praying I get it this time. My family needs this, and I need this to seek more treatment.
You are not alone, and I was hopeful when my doctor told me that discs and condyles can rebuild themselves, but right now I am not so sure.
Good luck,
Kass
As I read your post, I wanted to tell you that I have been diagnosed with other things along the way as the pain spread through my body. I have been diagnosed with myofascial pain syndrome, fibromyalgia, temporal tendonitis, neuralgia, and of course, depression, and anxiety. My body feels like one big bruise, it was weird how last October the pain spread. I did not understand, and was lost as to how I had pain in my face/jaw, and then it went into my neck and shoulders. My migraines increased and it is weird how my left side is the painful side and I only get migraine pain behind my left eyeball. I hope to have more answers tomorrow as I also see a neuro-opthamalogist.
Are you able to feel your muscle spasms? I often can feel my scalp, and face, it is extremely sore to the touch, and I have learned about muscle spasms in my back and other areas too. Do you ever feel like you are just a mess? I do not know what to say to my husband today, because right now it feels like it is always something.
Does anybody work? I stay at home, and am applying for disability, I have been denied once, but appealed. I am hoping, and praying I get it this time. My family needs this, and I need this to seek more treatment.
You are not alone, and I was hopeful when my doctor told me that discs and condyles can rebuild themselves, but right now I am not so sure.
Good luck,
Kass
Braced Face
09-04-2008, 01:13 PM
i to see dr simmons in nashville , he is a great guy spends time with you , an answers questions , i took a realy long time for me to be pain free , an was in braces forever but well worth every dollar, an every hour in an orthodontic appliance , i've been in bonded retainers an a night positioner sleep appliance , since the braces came off in jan08 very happy
pipdog
09-05-2008, 07:13 AM
Bracedface:
Thanks for the positive feedback on your treatment (great username by the way) Think I may be headed down the braces route as well.
Kass: I'm doing PT every week as well, she works on my left side facial muscles and says they are all in a state of hyperactivity. She showed me the trigger points and when she presses them I could almost pass out from the pain but then it eases off and stops the referred pain to behind my eye, where I get the 'eyegraines'. She thinks my pterygoid is the culprit. Also I get twitching in the general area
Thanks for the positive feedback on your treatment (great username by the way) Think I may be headed down the braces route as well.
Kass: I'm doing PT every week as well, she works on my left side facial muscles and says they are all in a state of hyperactivity. She showed me the trigger points and when she presses them I could almost pass out from the pain but then it eases off and stops the referred pain to behind my eye, where I get the 'eyegraines'. She thinks my pterygoid is the culprit. Also I get twitching in the general area
nynavey
09-05-2008, 10:07 AM
BracedFace this is great to hear! Yes, so far Dr. Simmons has been very helpful and informative...just what I like. If a bonded retainer is one of those things that fits behind the front teeth to keep them in place, I will also have one of those once my braces have moved my teeth into the right position (that will forever hold my jaw in correct alignment). How soon did your symptoms start to go away?
TiredOTired
09-05-2008, 03:22 PM
I just wanted to add my experience: I have had multiple splints and also braces. I have gone to the best of the best and spent tens of thousands of dollars on treatments. I still have the problem. I think that in my case (and perhaps others) the temporary relief felt by dental work doesn't last.
I also think that no measure of dental work will fix my condyle that is not in the correct place as it is a surgical repair that is required inside the joint. Just something to think about as I know dentists will not normally send you on to a surgeon until they have spent all of your money with splints and braces. And, yes I am bitter!;)
I also think that no measure of dental work will fix my condyle that is not in the correct place as it is a surgical repair that is required inside the joint. Just something to think about as I know dentists will not normally send you on to a surgeon until they have spent all of your money with splints and braces. And, yes I am bitter!;)
Braced Face
09-06-2008, 07:07 PM
yes the bonded retainers are behind the teeth , i also have upper bonded levy stops , i had a very nasty deep overbite that had to be taken care of also , i took a bit of a year to get total pain free , however i this time frame the splints were reworked , i also required shots into the jaw joints for pain , wich worked very well, this was a very costly treatment as i had dr. simmons an dr.witherow working on me , i spent well over 13.000 for my treatment , every penny an hour in an orthodontic appliance was work it , an boy at times i had a ton of metal an appliances, however not everyone's outcome is a good as mine , from ready on this site some people spend as much or more than i did an get worse , i'm thankfull i had great DRS
TiredOTired
09-08-2008, 07:13 PM
I spent multiples of what you did, went to the best of the best in the Phoenix area (not a small town--more than one tmj specialist and procedure) and they had no business doing any work on me, but should have sent me directly to an oral surgeon instead.
However, they all seem to have a God complex and work on you, & spend your money anyway. Just one person's experience.:(
However, they all seem to have a God complex and work on you, & spend your money anyway. Just one person's experience.:(
nynavey
09-08-2008, 11:37 PM
Braced - there's a Dr. Witherow in Mt. Juliet who does orthodontia...not the same guy is it? What a small world if it is. I hope I have good results. It's disheartening that others haven't, and I realize I'm gambling. But what do I have to lose but a bunch of money? I'd rather have quality of life back if I can get it.
Braced Face
09-09-2008, 08:44 AM
nynavey , how far are you into your splint treatment , an will you be letting dr simmons do your orthodontic work or having it done by another orthodontist