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Old 04-19-2003, 02:34 AM   #1
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Carey HB User
Red face HELP!! TMJ DISC REMOVAL: TOO YOUNG


I had my tmj arthroscopy on thursday and the surgeon was meant to scrape away the scar tissue and adhesions to hopefully reduce my pain and may increase my opening. but what he found once he was in there with the camera was that my disc is totally cactus and irrepairable. his words were " this is the worst he has ever seen in his entire life". he said my disc was so damaged and there is no way that reattaching the disc would benefit because it is in such a severe state.

the next step he said is the total removal of my tmj disc. he explained that he could pull some muscle down to aid as a cushion, but studies show that there is no difference between having something in its place and having the disc removed totally.

I really don't know what to do. i am so scared. i am scared of bone rubbing on bone and the degeneration of my joint over time. i am only 23 years old. i probrably wouldnt be so anxious if i was older, but it comes down to quality of life and for the past 3 years i have not had a life, with being off my face on all my pain meds.

I am hoping for some advice from anyone. thanks for listening.

Take care,
Carey

 
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Old 04-19-2003, 04:48 AM   #2
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Carey,

I know it sounds awful and is scary, but I had my disc removed almost 6 years ago. I had several surgeries prior to this, including disc replacement in 92 with auricular cartilage. The replacements lasted about 2 years and I suffered 3 more years with deteriorating disc trying to avoid the inevitable. I had the replacements out in 97.

You are being told the same thing I was, that trying to replace with grafts or muscle flaps, usually result in further problems.

The deteriorating disc (for many years in my case) was the cause of a lot of the pain and was instrumental in damaging the bone. Once the diseased tissue is out, scar tissue is supposed to form between the joints and the bone deterioration should stop. It takes a while for this to happen, but scar tissue does not have nerves, so the pain does decrease. If everything goes as it should, the bone or joint damage does not increase, it should stop (with the proper follow up care) In theory, your body will slowly rid itself of any damaged or necrotic bone and eventually you will have bone that gets blood supply, oxygen and nutrition. (Necrotic bone does not and this also causes pain.)

Everyone is different and responds to this surgery differently. I didn't want to have it either, but it was my only option.

I think there are some other Members living without
disc and maybe they will respond with their experience.

I was 45 when I had this done, and the biggest problem I had was, the Surgeon did not follow Protocol and prescribe a Splint immediately to take the "load" off of the joint during healing. He does not believe they serve any purpose. He is mistaken.

The recovery was not easy, but not as bad as the other surgeries. I did form scar tissue in the joints and the pain got better. I maintained a limited range of motion and pretty good function, compared to a lot of people who have taken other routes. My opening was about 10-15 mm. (It had been that way for years) I saw a PT for a while and then a Massage Therapist who is trained to treat TMJD patients and my opening increased to about 19 mm. I still had bad muscle problems, but they had been bad for many years and from the previous surgeries, as well as nerve damage. I don't believe this surgery caused any further nerve damage or would have caused the muscle problems to get worse, if he had provided the proper follow up care.
(The joints need support to heal after this surgery)

I was recently made aware that the
appropriate "Splint" could take the load off the joints, let the muscles relax and lengthen and help with a lot of the damage, pain and other problems.

I have had the Splint 4 months. All of my symtoms are better, including the nerve related pain. My opening has increased from 19 to almost 32mm. My body did form the scar tissue between the joints and I have not had any further joint deterioration. My body is ridding itself of the necrotic bone.

My Surgeon had told me that the joint deterioration was a very slow process, almost undetectable from one year to the next.

With my last films from the Surgeon, my Dentist believes the deterioration has stopped and I am healing. Had the Surgeon stuck a "Splint" in my mouth as he should have 6 years ago, I believe by now, I would be in good shape.

This of course, is my opinion. A lot of people might think that I am putting a lot of trust in this Dentist.
He has extended his education and knowledge in treating badly deteriorated (arthritic) and surgically damaged joints. He does not proclaim himself to be a TMJD Specialist. He treats everyone individually according to their condition.

My condition has improved more in the last 4 months than it did in the previous 5 years. My face looks normal again. My opening is better than it has been in many years. Many problems and symtoms are going away.
The muscles have relaxed as was intended and I am in less pain than I have been in years. The nerve pain is almost gone. With this "Splint Therapy" I am finally recuperating from a surgery that I had 6 years ago.

This has not been easy, but you can live without disc.
I didn't have any alternatives. My facial bones are small and fragile and would not have held up with any type of metal implants.

I don't give any advice on this surgery, just my experience.

My advice is, whatever you decide to do, make sure the Surgeon knows what he is doing and what kind of follow-up care is provided to aid in healing. (Medical Protocol says a splint is required to support the joints after disc removal) Maybe get another opinion and see if both provide the same information on expected results and follow up care.

I am terribly sorry that you are facing this decision.
I hope others will respond with their experience to help you see all sides.

One last note, I had a lot of irreversible damage from previous botched surgeries, when I had the disc removed. My Dentist says the Disc Removal was all that was truly neccesary. I am now getting my life back with his help.

Cymy Sue

 
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Old 04-20-2003, 07:00 PM   #3
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Cymy Sue,

Gee what a nightmare. it sounds like you have been thru hell. over the past few days i have had a good think about my options, well option there isn't that many to choose from! and i think that removing my disc would be the best thing to do in my case. for the past 3 years i have only had an opening of 5mm and if i dont' have this surgery then it will just stay the same. hopefully after this surgery i am able to cut down on my meds,be in less pain and have a better opening and hey, maybe i will get my life back to some sort of state as it was 4 years ago.

As for opinions from surgeons, i have seen every surgeon in my state who my pain specialist says are of good quality and with good experience in my case of surgery, and they washed their hands off me because they say that they dont do this type of surgery.my pain specialist filled me in and said that that is a load of bull in telling me they are not good enough for this surgery. his words were"they do them all the time (surgery)".

the surgeon i have now is excellent i do trust him and think that i would be in good hands if i were to go ahead with disc removal. the hard part is not knowing how things will turn out down the track.

Does anyone know if joint replacements are likely to occur after having the disc removed, and if so how long after has this taken place?
I know everyone responds differently to surgeries, but i am wanting to find out as much info as possible.
Thanks for listening.

Thank you for replying Cymy Sue,
Take care,
Carey

 
Old 04-21-2003, 08:31 AM   #4
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bump

 
Old 04-22-2003, 09:43 PM   #5
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Cymy Sue,

i read one of your posts and you said something in relation to orthogan....? surgery. can you tell me what type of surgery that is and is it different from oral and maxillofacial surgery? this may be a stupid question but can you elaberate? thanks

Take care,
Carey

 
Old 04-22-2003, 10:11 PM   #6
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Carey,

Don't mean to butt in just and FYI-
Orthogantic surgery is more related to the placement of the teeth and jaws. It is usually performed by an Oral and Maxifacial surgeon. That is part of what I had done on 3/27. It may be helpful for you to find out the exact name of the surgery they have in mind, so that you may do more research on it.

Autumn

 
Old 04-23-2003, 06:34 AM   #7
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Hi Carey,

The surgery I had was called a Bilateral Sagittal Split, (in 1988). You can search this term and there is a lot of information.

This surgery involves splitting (breaking) the jaw bone and either extending or reducing it.

The first one I had was to extend my lower jaw 5 mm's on one side, 6 on the other and a chin implant (Genioplasty) due to condylar head bone loss and the bones were put back together with screws (Rigid Fixation).
One problem with the Rigid Fixation technique is Condylar Dislocation. This happened to my left condyle. It looked like it dropped down about an inch and I had to have the procedure done again 3 months later, jaws split, screws removed, condyle pushed back into position and Wires used to secure the bones. I was also wired shut for 6 weeks. They thought this would prevent the condyle from moving until I healed.
The condyle dropped down again, (not as much) and remains in this position.
Everything that could go wrong with these procedures, did, and I still suffer damage caused by these surgeries.

I had them done shortly before MRI's were used for diagnosing TMJD conditions.

At that time, these procedures were being used to correct occlusion, which many, in the Medical Profession thought was the main cause of TMJ related problems. (They were done if Orthodontics did not work)

After having several MRI's, Tomograms and other tests that had become available, it was apparent that I did not need this procedure and having 2, had accelerated disc and joint deterioration.

I virtually had no disc and no definable condylar head on either side.

Indepth descriptions of these procedures are now available and most of the damage that can occur is listed. This information was not available 15 years ago.

These procedures are done by Oral Surgeons or Oral-Maxo. Surgeons.

Cymy Sue



[This message has been edited by Cymy Sue (edited 10-01-2003).]

 
Old 04-23-2003, 06:57 PM   #8
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Cymy Sue and Autumn,

Thanks for the info. i had never heard of that surgery before, probably because my jaw alignment and teeth are all ok. the only problem is the disc. it is damaged beyond repair and is anteriorly displaced and needs to be removed. the surgery is called a discectomy or meniscectomy (not sure on the exact spelling). my condyles seem to be fine but i see my surgeon today to find out more.

Cymy Sue, gees you certainly have been thru the wars! sounds like you have had your fair share of surgeries. how are you holding up at the moment?

Take care,
Carey

[This message has been edited by Carey (edited 04-23-2003).]

 
Old 04-23-2003, 09:49 PM   #9
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Hi Carey,

I am 23 years old too, and it is so scary to live like this and have knowone (our age) to understand us. I just barly had my MRI a few days ago so I am not sure what I am in for yet, but I can tell you, I have been in extreme pain for years, so I can relalte to your pain.

I know my MRI is probably going to be bad because I didnt have the insurance to help me years ago when the problem first started! I notice the longer I waited the worse my pain got, just sitting here hurts

I have been sufferring for over 6 years and it has been the worst 6 years of my life! I want my life back and I know you do too. When your this age you want to be out with your friends having fun, not home crying and begging for the pain to stop! People can say they understand BUT THEY DONT! they have to experence it for themself to actually understand how bad we suffer, to them it go though one ear & out the other!

My problem was I have been suffering so long and none of the doctors could figure out what the heck was wrong with me, so I had to do the researech myself and found out I had TMJ. I have gone to tons of doctors and dentisit and knowone has been able to help me, I just found a MD I am hopeful about and I have another asppoitmnet with another tmj dentist I havent seen at the end of april so I am hoping he can help!

I know how you can just feel so helpless, so alone and I think for us being so young it's harder, there days I just cry and cry because the pain is so bad. I just want you to know I understand how hard it is being young and having chronic pain!

I havent gotten that far in to the surgery process yet, and pray I dont have to, I just wanted to let you know I understand you and your pain and for us being so young it feels like at times our lifes are over! Knowone not our friends/family "really" understand what we go though everyday of every minute. Only the people on this board have help me though the toughest times. Sue has been a big help to me too

I do wish you the best sweetie, I want the quality of life too, we deservie it my main problem is the doctors I have been seen believe young people dont need it!

Dont forget we are all hear for you

take care & hugs to you....

Starr

 
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Old 04-24-2003, 04:05 AM   #10
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Carey,

I wish you the best today. I know from your previous post, you have a hard decision to make.

I had my disc out at 45, almost 6 years ago, after several surgeries that had caused irreversible damage to nerves, bones and muscle. My condyles were very worn and small and one permanently dislocated. All the bones in my face are thin and fragile now. This is not a bodywide condition. I have very strong bones elsewhere and very good teeth.

My opinion, based on research of following surgical vs. non-surgical patient histories over the last 20 years is, if discectomy had been an option many years ago, that is the only surgery I should have had. I believe if this had been done, when I was younger, without all of the surgical damage and trauma, I would have suffered much less and most likely done very well with it.

My Dentist, who is a wealth of information on current treatment, surgeries, failures, successes and a person who is constantly educating himself in regard to TMJD conditions confirms this. He says the discectomy was the only surgery that was neccesary. He is not in favor of a lot of the surgeries that have been done, but does say that destroyed or deteriorated disc, usually have to come out. He says in his experience, along with others he consults with, are seeing people who have this procedure (like me) with the proper follow-up care, get better. I did not have the proper follow-up care for the last 2 surgeries spanning 10 years.

I'm not sure how I felt about all of this information several months ago. After doing some research myself along these lines and approaching 5 months of "Splint Therapy" designed especially for my condition and based on Splints used for other people with diseased and damaged joints, I believe he's right.

I could not advise anyone on making this decision.
It most likely, like all other procedures, is not right for everyone. I can tell you, if I could go back, it would be the only surgery I would have.

I believe I posted before, if you do have this done, make sure the Surgeon knows that a "Splint" is required to stabilize and support the joints during healing and possibly longer. This is not my Dentist's opinion. This is the proper follow-up care per Medical Protocol on TMJ Discectomy.

As I said on another post, I am now recuperating (almost miraculously) from a surgery 6 years ago. It's amazing how quickly the "Appropriate Treatment" can make a difference in your life.

I am seeing my Dentist today for a cleaning and to report my progress. I haven't checked in since a few weeks after I started the Splint Therapy. I think he is going to be "AMAZED" at my progress. He has not seen me open my mouth over 19 to 24 mm in over 20 years. The Associate who does the cleaning for TMJD patients, (and has done mine for many years with my teeth almost clenched) will probably faint.

I think I'm doing good, (for me). I'll let you know what he thinks.

You will be in my thoughts today,

Cymy Sue

 
Old 04-26-2003, 09:16 PM   #11
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Hi Starr and Cymy Sue,

First of all Starr, i am glad there is someone out there my age experiencing tmj and going thru hell!!! it is so frustrating and like you said in your post not even your family truly understands what kind of pain we go thru, even though they do understand (if that makes sense and you know what i mean).

i went and saw my surgeon a couple of days ago and i do need my disc removed. it has a huge purferation ( a big hole) in it and it is just too damaged beyond salvation. i see him next week again to talk things thru about the surgery etc. this will be my 5th tmj surgery.
i have made the decision of having it removed because if i whey my options up i have 2 choices. 1. stay how i am and leave the disc in, be in severe pain, take my usual 12 tablets day and night for my pain, be asleep by 7:00pm every night because my meds knock me out, and of course a social life! gee i think i have forgotten what it is like to go out with my friends and have a good time. i hardly get to see my friends anyway because they work full time, i work shift work on the week ends, and when i can see them it has to be during the day. so that is pretty much how my life has been for the past 4 years.

or

2. have my disc removed, hopefully i won't be in too much pain, therefore reducing my meds, have an opening of more than 5mm, and hopefully get my life back on track. this option certainly out wheys option no.1

.............

Cymy Sue,

good news on your recovery that's fantastic. if only they did follow up care correctly those *******s (excuse my language). thanks for stressing to me regarding post op care and rehab. i will certainly be asking my surgeon a lot of questions next week.
i really trust my surgeon. he is not pushy and he says i can go and get other opinions if i like and he won't be offended. but based on my arthroscope photos (i too have copies) he said other surgeons will most definately recommend the same procedure. i'm putting my life in his hands because i have seen every other surgeon in the state and they are no good so i will be sticking with this one.

Cymy Sue,
Keep up with the good revovery and keep me posted.

Starr,
Chin up sweetie, good luck with your MRI and let me know how you get on.


p.s: just wondering how do you get all the little smilie faces on your posts?
Take care,
Carey

[This message has been edited by Carey (edited 04-27-2003).]

 
Old 04-29-2003, 03:46 AM   #12
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Cymy Sue,

You mentioned in your previous post about having had your teeth cleaned when you barely had any opening. was this done by your ordinary dentist or a tmj specialist. i am curious b/c for the past 3 years i have been brushing my teeth with a kid's tooth brush b/c i cannot clean the inside of my teeth, and with a 5mm opening for so long you can only imagine the build up of plaque on the inside of my teeth!!!

How were they able to clean your teeth with such limited opening?

Take care,
Carey

 
Old 04-29-2003, 04:51 AM   #13
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Hi Carey,

My Dentist had an associate for years, who knew how to clean your teeth with very "limited opening ability." She used smaller instruments and a lot of patience. I'm sure the cleaning is not as complete as normal people get, but it was better than nothing. She's gone now (retired) but he always has someone trained to work with TMJD patients and those who can not open very wide. His entire office staff has always been very understanding of the problems we face.

You might check around your area and see if any of the Dentist employs someone who has experience with TMJD patients.

Take Care,

Cymy Sue

 
Old 04-29-2003, 07:54 AM   #14
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Carey,

I am living without a disc in place in my right side. My jaw was dislocated forward and the disc was stuck out in front. I was lucky enough to get my bite back at least to a point where I can eat now, but the disc will not be recaptured without surgery. So far nothing drastic with this. I do have some pain, but it is so much better than it was that i know i can live like this forever if it doesn't get worse. My doc told me that he suspects there are many people walking around without discs who simply don't know it. Only an MRI would tell you.

Good luck with your decision.

Carole
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Old 04-29-2003, 06:40 PM   #15
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Cymy Sue,

thanks, my pain specialist is a tmj specialist and deals with problems of the jaw/pain, etc. and he is also a dentist. i dont know why i never thought of him sooner!

............

Hi Carole,

how long have you been living without your disc? post op how was the pain? also, when you open and close your jaw do you hear/feel cracking or a crunching sound as if bone on bone is rubbing?

Take care,
Carey

 
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