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Old 05-16-2003, 03:10 AM   #1
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Cymy Sue HB User
Post Cheryl, Kata, Carey, Sandra..........

Hi Cheryl,

Thanks for asking about me. I'm still a member of the "TMJD Club."

I've been reading most of the posts, but have had trouble posting replies. My absence.........
We use a satellite server. It's the fastest service we can get, where we live, but with bad weather we lose service. We've been having severe storms across the Southeast nearly every day. Not as bad in Al. as other states, but according to where the weather systems are, my signal has been off & on daily.

I also have a lower back problem. I have 4 lumbar disc they say are severely compressed and occasionally, I do something stupid and have a flare-up. They tell me that surgery (which I'm terrified of anyway) would be very risky and this can be controlled with Lumbar Epidurals. (I've been getting those things almost every 6 months for the last 2 1/2 years.) I hurt my back (again) about 5 weeks ago, had my 1st Epidural 10 days ago and hope, one will be all I have to have. My computer time has been limited because sitting causes the worst pain.
(We also got a new computer this week and we're half-way set back up. Hopefully, my husband will finish today. Healthboards is one of the few things I can get to.)

My splint is still working great. I had some muscles spasms when the back-pain was the worst, but everything has settled back down. Also, even though the Prednisone Epidurals are wonderful for the type of injury I have, It makes me feel awful for a few days. Better days ahead I hope.....


Kata,
The joint damage and disc deterioration I have/had, has been theorized as a birth injury. It was a long process. I never had synthetic or metal implants. I had reconstructive surgery (jaws breaks) and then cartilage replacements. I had those removed 6 years ago. I have no disc now, very small condyles and no condylar heads. Over the years, the muscles had compensated, scar has formed a cushion where the disc were and I'm in a splint to support my joints and let the muscles reposition. I am doing pretty well for the first time in many years.
Elaine could answer your questions better than me.
She has a similiar history as you, (bad implant, bone damage, no disc, etc.) I believe she has discussed with a Doctor the possible outcome of removing her implant, with the condylar/bone damage she has and also no disc. I do wish you the best.


Carey,
I tried to get back to you, but have had numerous problems over the last few weeks.
The pain post-op, was a little worse at first. Not a lot. It takes a while for scar to form, and it does cause a different type of pain. I continued to take the same amount of medication and they added baclofen to help with the nerve pain. The nerves in my case had been damaged previously and this caused some further irritation. The swelling was not as bad as having the disc replacements. As I mentioned before, I was not put in a splint to support the joints, so my recovery was long and after the scar formed, I continued to have terrible muscle problems. The muscle problems have in the last 4 months settled down to a tolerable level. I'm not sure what to tell you other than make sure a splint & PT is included in your follow-up care. I believe most of my problems would be a distant memory if this protocol had been followed 6 years ago. This is not an easy surgery, but with deteriorated disc, it's the first step to getting better.


Sandra,
I'm in a "Splint" designed for people who have no disc, surgically damaged joints, Osteo or Rheumatoid Arthritic joints. It's made to support the joint and passively reposition the muscles.
My Dentist bases his designs on the Pankey Inst., Extended TMJD Splint Therapy Treatment Curriculum.

Splints Therapy is individualized and there are really no standard names as you see with other Splint types and designs.
The kind I have is a Posterior Passive Muscle Repositional. (I think) The name describes it's purpose. Regardless, it's working and it started working almost immediately. My face had been drawn with a right sided deviation for over 15 yrs. I had all the TMJD symtoms from muscle problems. I had an opening of 15-19mm. In 4 months, my face straightened out, no deviation. Muscles on the right elongated, My opening increased to 32mm. All symtoms are becoming tolerable, even my roaring Tinnitis is now starting to go away.

I know there are many good DR/Dentists out there who understand TMJD and design splints. After 26 years of splints, braces, damaging surgeries, etc. This is the first therapy that has acutally made a difference. I believe a more individualized approach to everyone's condition is the better way to go.

There are many Dentists all over the country who have attended the Pankey Inst. The Inst. will provide a list of Dentists in each state, who have completed their courses. These are not week-end seminars. My Dentist has been going there for over 10 years for continuing education. This type of therapy, like most, probably won't work for everyone. It is working for me and I was quite a mess.


Cymy Sue



[This message has been edited by Cymy Sue (edited 05-17-2003).]

 
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Old 05-16-2003, 10:30 AM   #2
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Cymy Sue,

Thank you so much for your response regarding the type of splint you are wearing...the repositioning type for your particular need. I am glad you mention about the Panky Inst...information to keep in mind.

I now have a new dentist, which I will see in June about my condition and about my current splint. As you have already read the other posts...I have been thinking of trying to get off my splint which I have worn for the past 10 years with some good results. But as I have mentioned before, I want to be on something else besides the splint... maybe the NTI...it might or might not work. But it's worth a try. I want something to wear for the rest of my life, if I have it, without doing any other damage to my muscle or joint in the long term. I don't know if the NTI is safer than splints for long term, but I am going to find out one way or other.

Thanks alot, and I am glad the splint you are wearing has helped you quite abit.

I wish you all the best in health and peace.

I will keep you posted on any updates on my situation.

Sandi
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Sandra

 
Old 05-16-2003, 02:49 PM   #3
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Cymy Sue,

I'm sorry to hear that you're been having trouble with your back for a while now. Unfortunately, there are no guarantees on back surgeries, hoping for the best would not make my mind at ease, either. With the compression that you have, are you having bad nerve pain with it?

I'm glad that your splint is still helping you, we'll all eventually have pain free lives, including you. Better days do lie ahead, sometimes it's hard to believe that when we're having a bad day. I really hope this epidural works for you, you're in my prayers. Also-I'm still going to check into the "pankey" dentists, I just need alittle more time, I think that I need to take a time management class! haha Have a good night, Cymy Sue.
Cheryl

[This message has been edited by CherylLynn24 (edited 10-30-2003).]

 
Old 05-16-2003, 04:51 PM   #4
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Dear Cymy Sue,

Thank you so much for your speedy reply. My doctor thinks the implant was injured from the car accident and is causing all my pain and it has to come out. They are trying to schedule surgery for tuesday. X-rays and cat scan show it all to be in right place, but doctor said if the screws from the top are coming out that will not show on the films. If you touch in front of my left ear you can feel something bony.......ewhhhhhh and ouchhhhh and it radiates pain so that tell him something happened to it. I wasnt in pain like this prior to the accident and it just gets worse everyday.

When I say pain I mean my head hurts, ear, jaw, cheek entire face. Is this what everyone else feels? Bad pain. I just hope that the pain stops.

The doctor said I may do fine without the implant. He said I may deviate to one side when opened all the way. I have no disc or condyle (that is what was replaced with the implant). I havent been able to open much in a while. Besides there are haircuts to cover that up (have to think like that) a haircut doesnt cover the pain.

Pain goes all over the head and at times impossible to get comfortable. Sometimes I sleep with an ice pack.

How can I reach Elaine? Does she post here?

Regarding your back, my husband gets the epidoral steroid (three) every six months. He does fairly well on them. Two doctors wanted to reconstruct his spine - many problems from a accident, but he will not have that type of surgery. With every set he gets better relief. I do have a friend who does not get any relief from them and stopped after the first 2. It took my husband the first 3 then then next set but he did notice a difference.
Feel better and
thank you so much for your feed back


[This message has been edited by kata (edited 05-16-2003).]

 
Old 05-17-2003, 02:01 AM   #5
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Kata & Cheryl,

Kata, I understand the hair thing. I let mine grow long in 92 after the first arthroplasty to hide the scars. Also, the left side of my face is a little larger (Jaw-Line) because the condyle dropped down & healed lower than the right from a surgery in 88. The deviation to the right became much more noticeable as time went on. It seemed with long hair, this was not so obvious. The deviation is almost gone now, but i will always have the scars and the larger left jaw. I guess I'll always were it long.
I see that Elaine did reply to your post. She's an expert with the problems you're talking about. (I'm glad your husband has gotten some relief with the epidurals.)

Cheryl, it does sound like your husband has a very serious problem with his back. I hope he finds help soon. Back & leg pain has been as bad or worse (at times) than TMJD and the surgeries just as risky and uncertain. I'm sorry to hear he is having such a terrible time.

I started out getting 3 injections every 6 months in Jan. 01. I never had back pain from them. Steroids do work havoc on my central nervous system for a few days. Flushed face, irritable, can't sleep.
The injections have always helped. I got 3 almost every 6 months until last May. I got 2 last May, didn't need the 3rd until last Aug. Since Aug.02, I had not had any pain.
Originally, my problem was not an injury. The 4 disc had become compressed over a period of many years, from lifting "stuff" that was too heavy for me. They told me that when the disc are compressed or thin & small, they can easily slide from any unusual movement and compress nerve roots. The injury came a little over 2 years ago from using a Torso Track. I ended up with a tear in one and one herniated. The first 3 series of epidurals & Pt healed the tear and the herniation seemed to get better.
This time, I twisted around to get something out of the back seat, while driving. They said I torqued my spine and not to do this again. They told me that since I had not had any pain since Aug., I probably just caused them to slide again and they think the epidurals will work and it's a good sign that I went so long this time without pain.
Cheryl, to answer your question: I don't have a lot of back pain. Some to start with and then it is all pretty much nerve pain or neuropathy down both legs.
They tell me this is due to the disc sliding on to the nerve roots and I must have one going one way and one going another. They say both legs hurting is not the norm. Anyway, I am happy the Epidurals have worked. The Doctors think if I can be careful and stop doing stuff that causes the sliding , I can keep this problem under control.

My prayers for everyone who is in pain for any reason,
Cymy Sue

[This message has been edited by Cymy Sue (edited 05-20-2003).]

[This message has been edited by Cymy Sue (edited 05-20-2003).]

 
Old 05-17-2003, 04:34 PM   #6
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Cymy Sue
That is funny about the hair thing. For years I did the same thing (had a problem from the age of 8 fell off a bike and fractured my skull and cheek bone right side and for years deviated to one side but no pain, an altercation and was hit in the face in 1985 which made me have surgery which helped the problem - lower jaw) No bad pain for years.

But what is funny is that I have recently realized that shoulder length or shorter with angled and layers into the face hide the jaw better (swelling), at least I think it does. Besides with my headaches there is no way I can wear my hair up. Hard enought to wash it some days. I cant believe someone else is doing the same thing - guess its a woman thing.

Glad your tmj is better. Your story does give me hope. I know you didnt have the christensen implant but you did have the muscle and screws,etc, and now with them out your have improved. That gives me hope.
Question for you - do you know what made it worse for you, was it the screws? Can you tell me a little about what happened with the surgery to remove the screws etc. I am missing a disk and condyle on the left side.

Has anyone experienced what I call a wind storm in your ear? Feels like a storm is blowing threw and it hurts to talk or hear.

I do hope your back gets better. My hubby used to get mad at the weight he would put on, but the shots did help him and that was important. A few times his legs would buckle from the nerve and pain, not a good thing. They are done under floroscopy in the OR ambulatory. As long as they help keep it up. What is the point of what we look like anymore - cant believe I am saying this. Getting rid of pain is the most important thing - then when we feel better we can work on the other things. The day after injections he is very sore, but within 3-4 days he starts to get relief.

Good luck



[This message has been edited by kata (edited 05-17-2003).]

 
Old 05-17-2003, 10:53 PM   #7
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User
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Cymy Sue,

That's very promising that you've gone since last August without any pain. It sounds as if the epidurals have worked wonders for you.

Take care of yourself Cymy Sue, and Be Careful!!!! I've got my fingers crossed that you find some relief soon.

Cheryl

[This message has been edited by CherylLynn24 (edited 10-30-2003).]

 
Old 05-20-2003, 01:50 AM   #8
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Cymy Sue HB User
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Kata,

You must have seen one of my posts about the Sagittal Splits (jaw breaks) I had about 15 years ago. They used screws (Rigid Fixation) to hold the bones together after the breaks until they heal. (There was no metal or other type of implant used with this surgery.) Normally, the screws would stay in, if the surgery is a success.

Due to bad disc (which we were not aware of at the time) my left condyle pulled loose and dropped down about an inch. I've read this is not uncommon with this type of surgery. The screws were not in long enough to cause a problem and I have only heard of a few cases where they caused problems (with this surgery) and have to be removed.

I had to have the surgery again and they used stainless steel wire loops to hold the bones together until they healed. The theory was/is, the wire gives the muscles a little room to move or spasm without pulling the bones out of place. They also wired my mouth together, hoping this would keep the condyle from moving. It dropped down again, not as much, but it healed in that position and remains so.

I have 6 stainless steel loops, 3 on each side, that have been in 15 years and have never caused a problem, but again they were used to hold bone to bone.

I'm sure this does not help you with your condition, but this was my experience with screws. (Very different surgeries.)

Cymy Sue

 
Old 05-20-2003, 08:43 PM   #9
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Hi Cymy Sue,

Thanks for getting back to me. sorry to hear about your back, hopefully you will get some relief from the epidural.

my discectomy surgery is only 2 weeks away, i am now starting to get a little anxious. about 8 weeks, always before any type of surgery i have (in total i've had 11) my hair starts to fall out in big clumps. i put it down to anxiety and i am supprised that i still have hair left on my head going by the rate i am losing it at the moment!!! i have very fair blonde hair, so it probably wont be that noticable.
Thanks for the info on what to expect post op. for the past 4 years i too have been taking baclofen aswell as deralin, doxepin, clonazepam, tramal, and toradol, just to name a few, that's why i am asleep by 7:30pm every nite,but hopefully after surgery i am able to cut down on my meds.

hope the back and jaw are feeling better soon.

Take care,
Carey

 
Old 05-21-2003, 09:53 AM   #10
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Cymy Sue
Thanks for that info.
I think I understand the condyle sits against the disc, but it is not the condyle alone that is responsible for the jaw open/closing. It is the ligaments and muscles, etc.

How did you know that your condyle has dropped down? Is it both sides?

My doctor and another oral surgeon said that there are people who are walking around and dont even know they have no condyle or it has also dropped down. It sounds weird, but doenst mean it is a painful condition. Sometimes the rubbing of the condyle into the bone (no disc) is worse, and with the condyle not hitting (space) can be more confortable.

As long as the pain is tolerable or even better, dont have any, that would be just fine with me.


Thanks

 
Old 05-22-2003, 09:48 AM   #11
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Kata,

It was very obvious after the first surgery, even with the swelling, that the left condyle (only) had slipped. X-rays confirmed it. After the second surgery, the Surgeon checked with X-rays to see where it was. Again, not in the correct position, but not as bad as the first time. I could not undergo another surgery to try and put it back.

It has caused a lot of muscle problems and pain. The muscles have tried to compensate and caused problems on the right side. I guess a rough analogy would be, one leg shorter than the other. Everything kind of shifts to make things work. Also, my disc were pretty well shot by then, so they didn't absorb any of the movement.

I'm sure there are other people with this condition and your Doctors are right. I think this happening to me during an attempt to re-structure and line-up has been the reason for continuing problems. I healed in a mess.

Cymy Sue

 
Old 05-22-2003, 01:51 PM   #12
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cyme sue,

Thanks for your reply.

I am just glad that you are doing better. That is what is important.

Yes, one leg shorter than another - but if it works who cares, right.


 
Old 05-23-2003, 08:56 AM   #13
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Dear Cyme Sue,

You wrote "caused muscle problems and pain" but you are now doing better, which is wonderful. Do you think it was the splint that made the difference or just time for the right and left side to compesate for each other.

Are you careful with what you eat still?

thanks

 
Old 05-23-2003, 12:45 PM   #14
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Kata,

I was still in such a mess last Sept., I was trying to get a Surgeon to do "Total Joint Replacements". I was told I had too much scar tissue, nerve damage, fragile bones, muscle involvement, etc. from previous surgeries to be a candidate for any type of synthetic implants.

I was told that staying medicated the rest of my life was my only option.

Time has allowed scar to form in the joints and the bone deterioration has pretty well stopped. So it seems, I was suffering mostly from muscle problems, which caused many symtoms including nerve pain.

The splint has done what it was designed to do. The muscles have repositioned & relaxed. My face does not draw very much anymore and all symtoms have improved incredibly. I don't know if you seen a previous post about my progress, but my opening went from 19mm to 32mm in 4 months. It had been 19 & much less for years.
That tells you how much the muscles have relaxed.

I am careful with what I eat. I don't eat anything that would stress the joints. I don't crunch ice or chew gum, or eat anything that requires a lot of intense chewing. I do eat most anything I want now, (very carefully.)

Cymy Sue

 
Old 05-24-2003, 06:03 PM   #15
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Dear cyme Sue,

I am so glad that you are doing better. Wow, great improvement on your opening. They say time is a great healer, and you are proof of that. It is great to hear from someone who is improving, very encouraging.

I am sorry for what the doctor said to you. How you must have felt hearing you would have to take medication all the time. Well, you sure proved him wrong! I am very lucky to have a wonderful doctor. He is kind and caring and very educated in the field.

I am glad that my pain is letting up. The last week I have gone from 6 percocet a day to 2. I have been on an antibiotic because I got a cold. I know that I had done something that is why I had a flare up.

I hope that everyone on the board is feeling better today.



[This message has been edited by kata (edited 05-24-2003).]

 
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