RobynRose
03-25-2003, 10:10 AM
Hi Elaine,
I just looked through some of your posts on the archives, and thought you might be able to relate to my prior post regarding hypermobile tmj joints. It seems you may have also had this dysfunction...and a more atypical case. The other thing I noticed is that you underwent a spinal fusion!! This really hit home as I've lived with chronic spine problems (instability - herniated torn disc at L5S1) now for 9 years (I'm 39). I have been sceduled 2x for spine fusion -both times circumstances forced me to cxl the surgeries (long stories!!). In any case, I think there is a definite link between my spine issues and now this tmj problem. It's spooking me -- and I am not sure the doctors understand this "flavor" of dysfunction (usually it's too little range of motion-- but for some -- too much causes the problems..right?).
If you would be so kind as to comment on some of what I've touched on - I'd be so appreciative. I can see you have been through a tremendous amount with regard to this --- I completely and totallly feel for all you've encountered. Thanks in advance... Be well - Robyn
I just looked through some of your posts on the archives, and thought you might be able to relate to my prior post regarding hypermobile tmj joints. It seems you may have also had this dysfunction...and a more atypical case. The other thing I noticed is that you underwent a spinal fusion!! This really hit home as I've lived with chronic spine problems (instability - herniated torn disc at L5S1) now for 9 years (I'm 39). I have been sceduled 2x for spine fusion -both times circumstances forced me to cxl the surgeries (long stories!!). In any case, I think there is a definite link between my spine issues and now this tmj problem. It's spooking me -- and I am not sure the doctors understand this "flavor" of dysfunction (usually it's too little range of motion-- but for some -- too much causes the problems..right?).
If you would be so kind as to comment on some of what I've touched on - I'd be so appreciative. I can see you have been through a tremendous amount with regard to this --- I completely and totallly feel for all you've encountered. Thanks in advance... Be well - Robyn
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Elaine
04-02-2003, 11:49 PM
Robyn,
Sorry for not answering sooner. Forgot about this post than ran across it again. My back and TMJ problems are connected, both caused from a car wreck that I am lucky to have lived through. I suffered for 15 years with a torn L5/S1 before agreeing to spine surgery. It got to the point of electric shock type pain, that I was down on my knees to get out of bed. Three months ago, I had L4/L5 fusion for the same reason. So far, I have no low back pain but my right leg still gives me problems with the sciatic nerve. I am DEFINITELY not sorry I had the two fusions. I only wish all the TMJ surgeries had given me a small portion of relief, that my back surgeries did. I have herniated discs in my thoracic that give me grief but the low back is much better and I am not getting electrocuted anymore!!! I tried the neurontin a long time ago but I am going to give it another try. Hoping it will help the headaches and leg pain at the same time.
What type of back pain do you have and what caused it? Back surgery is hell but it was worth it for me.
Take care,
Elaine
Sorry for not answering sooner. Forgot about this post than ran across it again. My back and TMJ problems are connected, both caused from a car wreck that I am lucky to have lived through. I suffered for 15 years with a torn L5/S1 before agreeing to spine surgery. It got to the point of electric shock type pain, that I was down on my knees to get out of bed. Three months ago, I had L4/L5 fusion for the same reason. So far, I have no low back pain but my right leg still gives me problems with the sciatic nerve. I am DEFINITELY not sorry I had the two fusions. I only wish all the TMJ surgeries had given me a small portion of relief, that my back surgeries did. I have herniated discs in my thoracic that give me grief but the low back is much better and I am not getting electrocuted anymore!!! I tried the neurontin a long time ago but I am going to give it another try. Hoping it will help the headaches and leg pain at the same time.
What type of back pain do you have and what caused it? Back surgery is hell but it was worth it for me.
Take care,
Elaine
RobynRose
04-03-2003, 11:34 PM
Hi Elaine,
Thanks for responding to my original post. Wow... it was a car wreck that caused both the TMJ and the spine problems for you. You have been through so much. My spine problems came on after I took a good fall across a moving treadmill at the gym (someone left it running while going to the ladies room, and I walked across it unknowing :( ) In any case - I have an L5S1 herniated disc with a large annular tear. On top of that - I have an instabilty - L5 slips over S1 6mm (spondy). I think it's the instablity that makes me most miserable. I can feel the spine move and catch - and then the pain sets in. All my ligaments are "floppy" though - and I think that's why the TMJ is now reallyl kicking in. To me it all seems like the same disease??!!
I'm so glad the back surgeries appear to be good outcomes for you. Amazing that spines seem better understood than jaws?!! I had heard so many fusion horror stories - I was terrified of that surgery - and yet - the jaw stories here are even more dreadful.
I have my first appointment with a TMJ dentist next week. He's an endodontist so I don't think he's pro-surgery. Likely he will be more splint oriented. I can feel that there is something knocked loose in there (jaw).. likely the disc thats dislocated - right?
If you (or anyone else here) have any advice for my appointment Tuesday - I'd be interested. Right now I'm in pain 24/7 with both spine and jaw. I'm trying not to open the mouth too much or too wide (it still opens but snap crack pops - and ouches!!).
Hope the Neurontin is helpful for you as well. Keep in touch! Robyn
ps: When your spine fusions were complete - and successful - did you feel your jaw stayed more stable as well?
Thanks for responding to my original post. Wow... it was a car wreck that caused both the TMJ and the spine problems for you. You have been through so much. My spine problems came on after I took a good fall across a moving treadmill at the gym (someone left it running while going to the ladies room, and I walked across it unknowing :( ) In any case - I have an L5S1 herniated disc with a large annular tear. On top of that - I have an instabilty - L5 slips over S1 6mm (spondy). I think it's the instablity that makes me most miserable. I can feel the spine move and catch - and then the pain sets in. All my ligaments are "floppy" though - and I think that's why the TMJ is now reallyl kicking in. To me it all seems like the same disease??!!
I'm so glad the back surgeries appear to be good outcomes for you. Amazing that spines seem better understood than jaws?!! I had heard so many fusion horror stories - I was terrified of that surgery - and yet - the jaw stories here are even more dreadful.
I have my first appointment with a TMJ dentist next week. He's an endodontist so I don't think he's pro-surgery. Likely he will be more splint oriented. I can feel that there is something knocked loose in there (jaw).. likely the disc thats dislocated - right?
If you (or anyone else here) have any advice for my appointment Tuesday - I'd be interested. Right now I'm in pain 24/7 with both spine and jaw. I'm trying not to open the mouth too much or too wide (it still opens but snap crack pops - and ouches!!).
Hope the Neurontin is helpful for you as well. Keep in touch! Robyn
ps: When your spine fusions were complete - and successful - did you feel your jaw stayed more stable as well?
mark g
04-05-2003, 09:39 PM
Hi, I also live in Long Island - and I have had a TMJ problem for some years, and back pain (C2, etc.) from injuries (falls). My chiropractor is able to help with the TMJ pain by means of massage (glove within the mouth). There are several sets of muscles that articulate the jaw - the ptygergoid (that originates above the upper second molar, where the neural plexus for the joint is; indeed, an alternative to massage is pressure on this neural point; the massater (superficial and deep are separate muscles, both originate inside the angle of the jaw, that is, the corner - if the muscle feels like a peanut or a walnut - that's a cramp!); and, the temporalis (that's above the ears on the scalp.) There are also some muscles underneath the jaw and others running down the neck (front and back) that are involved. These are the second most powerful muscles in the body (next to the thigh); they're incredibly short, and when they cramp up - sometimes several of them, or they take turns, it hurts a lot; refers pain to the ear (where the joint is); and one can get dizzy, fatigued, depressed, and miserable - it's extremely painful (and one can get sleep deprived). I have been a patient at the New York Chiropractic College Clinic in Levittown, and I am a patient with an excellent chiropractoric practice in New York, Sinnet Chiropractic. What I have discovered recently, however, is that the spasm from the TMJ helps "splint" my upper back problem (vertebra that rotated because of at least one nasty ski fall, hitting ice, causing several interspinous muscle groups around it (particularly, several below it) to go into spasm. Because the pain is interfering with my stamina and ability to work - and is a real drag - I am in the process of getting some medical opinions (I have an appointment with the headache clinic (director) at Beth Israel Hospital in New York (a neurologist), and I am going to consult TMJ specialist at either New York Eye and Ear Hospital or NYU Dental or both (in New York). Surgery, medicine and devices don't always work and have substantial risks (although sometimes it may be better than the alternatives). (Also, I have lower back problems from several falls, which rotated my pelvis; Eric Shapiro, MD, a physiatrist in Bayshore, realigned my pelvis and prescribed PT.) (I live in Roslyn, and, hopefully, the webmaster can supply you my email address, Elaine from Long Island, if you like.) I've been living with this for many years - since I've been in school - but it's not easy.... Mark
mark g
04-05-2003, 09:47 PM
Hi RobynRose,
I realized when my reply was posted (I was traipsing through a Google search on TMJ before I discovered your message on the BB; and, as I had some experience with local doctors, etc., I thought I'd reply) that Elaine is from Montana, and that you're from LI, and that I should have addressed that message to you...But that's what TMJ will do... Good luck! Yours, Mark
I realized when my reply was posted (I was traipsing through a Google search on TMJ before I discovered your message on the BB; and, as I had some experience with local doctors, etc., I thought I'd reply) that Elaine is from Montana, and that you're from LI, and that I should have addressed that message to you...But that's what TMJ will do... Good luck! Yours, Mark
RobynRose
04-06-2003, 10:15 AM
in
RobynRose
04-07-2003, 12:20 AM
Hi Mark...nice to see a fellow-Long Islander here!! I can see you've been through a great deal with your tmj and spine issues. Seems there may be a link between instability in the spine...and in the tmj. I do know of those muscles and have even done intra-oral self massage in an effort to relieve my pain and "clunking".
The massage helps -but very temporarily. I've been pretty miserable since the fall...actually had a rough year following a myelogram (was going to have the fusion but never got there). The doctors presumed I had a spinal leak as I had horrendous headaches and facial pressure - cervical pain as well. I'm wondering now if the myelo didn't trigger the whole tmj thing in a big way.
Anyway.. wanted to ask you if you've ever tried a splint of any kind. I used the NTI device for some time without much benefit at all. Just recently, a chiro gave me a Splint called E-Z Splint - by Splintek.
I was less than excited to try it. Sure enough.. I can detect definite improvement - very distinct. I've only used it nightly for the past 3 days or so, but the jaw is less painful..the neck feels calmer..shoulderblades aren't throbbing etc. It was explained that this spling brings the jaw forward some, allowing the muscles to relax, and the disc to find it's place. I am still suffering - but last few days have been an amazing improvement. I still clunk and click, but not constantly...and I don't feel that urge to open my mouth and pop the joint constantly.
Anyway...really just wanted to check back in with you and say hi. Let me know if you've ever used the Splintek product...or another Spllint device.
Robyn from Westhampton
The massage helps -but very temporarily. I've been pretty miserable since the fall...actually had a rough year following a myelogram (was going to have the fusion but never got there). The doctors presumed I had a spinal leak as I had horrendous headaches and facial pressure - cervical pain as well. I'm wondering now if the myelo didn't trigger the whole tmj thing in a big way.
Anyway.. wanted to ask you if you've ever tried a splint of any kind. I used the NTI device for some time without much benefit at all. Just recently, a chiro gave me a Splint called E-Z Splint - by Splintek.
I was less than excited to try it. Sure enough.. I can detect definite improvement - very distinct. I've only used it nightly for the past 3 days or so, but the jaw is less painful..the neck feels calmer..shoulderblades aren't throbbing etc. It was explained that this spling brings the jaw forward some, allowing the muscles to relax, and the disc to find it's place. I am still suffering - but last few days have been an amazing improvement. I still clunk and click, but not constantly...and I don't feel that urge to open my mouth and pop the joint constantly.
Anyway...really just wanted to check back in with you and say hi. Let me know if you've ever used the Splintek product...or another Spllint device.
Robyn from Westhampton
mark g
04-07-2003, 01:28 AM
Hi RobynRose,
I have never used a splint (once I had a nightguard made at the county hospital's clinic), but I am glad that the splint seems to be working for you....
I just posted a message to "fibrine" on how to do self-massage. (I was diagnosed with TMJ about 30 years ago, and I'm 44 now.) (Several ski falls left me with a vertebral problem at T2 (thoracic), which when it spasms to guard it, tends to put pressure on C2 (cervical), which of course involves the trigeminal nerve of which the TMJ is just a branch. I've also done a number on my pelvis and hip, and my ankle - limping around on a bad ankle doesn't help the alignment of the pelvis, but it got rotated by a bad fall last year.) Although there is a chiropractic technique - theory - correlating the upper neck with the lower pelvis for alignment problems, in my experience, although a misalignment in one will contribute to misalignment of the other - I think they are separate and distinct problems, even though, like a tidal wave, they interrelate. I will check out the splint option, based on your positive experience.... A few years ago, I was out in your area a lot (not in the tourist season...I had clients out on the East End). (The physiatrist (rehabilitation doctor) I saw, Eric Shapiro, MD, on Montauk Highway in West Islip, is really good (he's also a friend of the family), he knows a lot about backs, but TMJ is a separate field.)
Yours, Mark
I have never used a splint (once I had a nightguard made at the county hospital's clinic), but I am glad that the splint seems to be working for you....
I just posted a message to "fibrine" on how to do self-massage. (I was diagnosed with TMJ about 30 years ago, and I'm 44 now.) (Several ski falls left me with a vertebral problem at T2 (thoracic), which when it spasms to guard it, tends to put pressure on C2 (cervical), which of course involves the trigeminal nerve of which the TMJ is just a branch. I've also done a number on my pelvis and hip, and my ankle - limping around on a bad ankle doesn't help the alignment of the pelvis, but it got rotated by a bad fall last year.) Although there is a chiropractic technique - theory - correlating the upper neck with the lower pelvis for alignment problems, in my experience, although a misalignment in one will contribute to misalignment of the other - I think they are separate and distinct problems, even though, like a tidal wave, they interrelate. I will check out the splint option, based on your positive experience.... A few years ago, I was out in your area a lot (not in the tourist season...I had clients out on the East End). (The physiatrist (rehabilitation doctor) I saw, Eric Shapiro, MD, on Montauk Highway in West Islip, is really good (he's also a friend of the family), he knows a lot about backs, but TMJ is a separate field.)
Yours, Mark
RobynRose
04-07-2003, 11:03 AM
Hi Mark,
It's a funny coincidence, but my physiatrist is also Dr. Shapiro (Roberta). She's in NYC - on 61st street. I don't think she has a brother in the same field - and I know she is single??!! :) Thanks for letting me know about your Doctor Shapiro... I've been seeing Roberta now for about 6 years. She's a wonderful physical medicine doc as well... very strong in her knowledge of myofacial trigger pont work (is actually a contributing author of Travell and Simmons text on the subject). Also a very caring physician.
It's often hard for me to get into the city though...so I appreciate your letting me know about your doc - who is much closer to home. Does he work with injection into trigger points, or mostly mannual technique??
It's interesting that you also have the pelvic problems with inbalances. I know for me this a huge piece of my condition... I can feel the lumbar vertebrae move and get stuck (facets). I feel clunking and cracking constatantly - and now this is widespread, moving up to my thoracic, neck, shoulder and tmj. I've been told my ligaments are very loose everywhere (hypermobility syndrome)...so I rely on muscle to hold things in place. I suppose muscle can only do so much! I have been working diligently to strenghen though - Pilates Reformer training. It's helped a lot...but still a long way to go.
In any case..today I woke with my lumbar "locked" -- and I feel it pulling on the tmj big time. I feel a distinct connection -but perhaps it's just the myofacial "pull" - and the fact that I"m so loose. It's really made my life pretty miserable. I'm 39 and have 2 young children - have been fighting this chronic pain battle for 9 years now... also took a few good falls right prior to the onset of pain - so maybe this was the trigger for me - similar to your injuries.
I was disappointed that my Splintek splint didn't "protect" me last night...but I woke with it out of my mouth -so perhaps this is the problem.
I have an appointment with a TMJ specialist tomorrow ( a Dr. Bruce Brown in Port Jefferson - and considered postponing...due to my last 3 days of new-found relief with my splint - but now I'm reconsidering. It's $250 for the initial consult... and I worry that I may get myself into a treatment plan that can somehow make me worse (based on some of the testiments I've read here). What do you think?
Nice to meet you Mark.
Best to you, Robyn
[Personal contact information like email addresses is not permitted on healthboards. Thanks for your cooperation - Well-come Moderator.]
[This message has been edited by Well-come (edited 04-07-2003).]
It's a funny coincidence, but my physiatrist is also Dr. Shapiro (Roberta). She's in NYC - on 61st street. I don't think she has a brother in the same field - and I know she is single??!! :) Thanks for letting me know about your Doctor Shapiro... I've been seeing Roberta now for about 6 years. She's a wonderful physical medicine doc as well... very strong in her knowledge of myofacial trigger pont work (is actually a contributing author of Travell and Simmons text on the subject). Also a very caring physician.
It's often hard for me to get into the city though...so I appreciate your letting me know about your doc - who is much closer to home. Does he work with injection into trigger points, or mostly mannual technique??
It's interesting that you also have the pelvic problems with inbalances. I know for me this a huge piece of my condition... I can feel the lumbar vertebrae move and get stuck (facets). I feel clunking and cracking constatantly - and now this is widespread, moving up to my thoracic, neck, shoulder and tmj. I've been told my ligaments are very loose everywhere (hypermobility syndrome)...so I rely on muscle to hold things in place. I suppose muscle can only do so much! I have been working diligently to strenghen though - Pilates Reformer training. It's helped a lot...but still a long way to go.
In any case..today I woke with my lumbar "locked" -- and I feel it pulling on the tmj big time. I feel a distinct connection -but perhaps it's just the myofacial "pull" - and the fact that I"m so loose. It's really made my life pretty miserable. I'm 39 and have 2 young children - have been fighting this chronic pain battle for 9 years now... also took a few good falls right prior to the onset of pain - so maybe this was the trigger for me - similar to your injuries.
I was disappointed that my Splintek splint didn't "protect" me last night...but I woke with it out of my mouth -so perhaps this is the problem.
I have an appointment with a TMJ specialist tomorrow ( a Dr. Bruce Brown in Port Jefferson - and considered postponing...due to my last 3 days of new-found relief with my splint - but now I'm reconsidering. It's $250 for the initial consult... and I worry that I may get myself into a treatment plan that can somehow make me worse (based on some of the testiments I've read here). What do you think?
Nice to meet you Mark.
Best to you, Robyn
[Personal contact information like email addresses is not permitted on healthboards. Thanks for your cooperation - Well-come Moderator.]
[This message has been edited by Well-come (edited 04-07-2003).]
mark g
04-18-2003, 05:13 PM
Eric Shapiro, MD, physiatrist, worked on my pelvis, not on my TMJ... (Sorry, I wasn't feeling well and I didn't get to my mail until today. He has a rehab center in his office.)