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Really hurting today!

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Old 09-29-2003, 02:54 PM   #1
Join Date: Aug 2003
Posts: 77
cally22 HB User
Thumbs down Really hurting today!

Hi, I know it has been a really long time since I have posted , but I have been so busy, and I think that it is catching up with me. but that is not why I am posting, today has to have been one of the worst days I have had in a while. All I could do for a while was hold the side of my face and kind of rock back and forth. I just wanted to cry, but I didn't because I don't like for people especially my family to see me that way.Sometimes I get so frusterated with things, it just doesn't seem fair tohave to go throught this all the time for so long. I know no one ever said life was fair, but i'm young, and i want a chanc e to experience the things that all young people can, that I can't because of my tmj. The things that for four years i've sat out from, because I was in too much pain or was unable to do. I'm sorry if I'm going on and on, but I'm just hurting a lot and sometimes i get this way. Thanks for listening whoever reads this cally22.

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Old 09-29-2003, 03:25 PM   #2
Senior Veteran
Join Date: Aug 2003
Location: usa
Posts: 581
Ouch-ear-pain HB User

Hi Cally,
I am probably in the same category as you are. Are you in your teen years? I have TMJ as well and sometimes it is hard and I mean hard for me to even go to school because it hurts so bad or it fatigues me. I can totally understand what you are going through and lucky for me I have an appt. with specialist so I will let you know how that goes! Take Care!~! Ear*

Old 09-29-2003, 03:56 PM   #3
Senior Veteran
Join Date: Jul 2003
Location: ontario, canada
Posts: 646
saaraah HB User

i know how you feel.. im 22, and have had TMJD for 3-4 years where it's dramatically affected my life on a daily basis.

before that, i had frequent [3x a week] migraines and headaches, so i know what you mean about feeling like you're watching your life pass you by. a lot of my memories from childhood are clouded by pain and headaches, which is sad.

i hope that things get better.. because the thought of living like this for the rest of my life is really more than i can bare. i dont want to have this life..

anyway, take care.. i hope that you find a treatment that works. im getting a repositional splint in 2 days, so im hoping that it'll help me... im trying not to get my hopes up, tho.

good luck.

- saaraah.

Old 09-30-2003, 03:52 AM   #4
Cymy Sue
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Join Date: Oct 2002
Location: Alabama
Posts: 1,021
Cymy Sue HB User


With "Surgically Removed Disc", you are living in a condition that very few people have experienced.

It is becoming a more common procedure, now that the "Surgical Community" has figured out, they can not repair all deteriorated disc and in trying, sometimes offer only a couple of years of relief or make your condition worse.

The pain from this procedure "was" different from anything else I had ever experienced.

I believe you said it had been about a year. I was told that it takes a 1 1/2 to 2 years for enough scar tissue to form to pad the joint. In taking out the disc, there are a lot of nerves involved that get irritated. It takes a while for them to calm down. A while being, a year or so.

I don't recall if you are or have been in any type of "Pain Care" or "Management". I took Baclofen for nerve pain for 1 1/2 years. Neurotin is supposed to be better, but I couldn't deal with the side effects.
I could function very well with the Baclofen and it does help. After 1 1/2 years, I got off all medication for regular pain and nerve pain and managed, but I was still in pain.

About a year later, I had some nerve regeneration and had to go back on a low dose pain medication. I don't need it now.

I read the other day that people whose disc have been removed or people who are living with dislocated disc, (that are not causing a lot of pain) have developed scarring in place of the disc. The article called the scarring "Pseudo-disc". This does pad between the bones, but does not function as normal disc would.

I was told that in most cases, when the joint has been altered by surgery the body sees this as an injury or abnormal. (This applies to any abnormality of the joint or disc in many cases of TMJD with or without surgical intervention) The muscles will begin to tightened and clench around the "injured area" to protect this area and also to compensate for the abnormal movement or function of the joint. In many surgical cases, once you have healed from the surgery, the muscles have altered their position and sometimes their original function and they don't go back to normalcy on their on.

There needs to be some type of intervention to get these mucsles to let go, go back to where they are supposed to be and resume their normal function.
In their clenched, enlarged and abnormal repositioning to protect the injured area, they also cause extreme pain. In their spasmed condition, they will compress or press on nerves and cause all kinds of pain and "weird" symtoms that we hear others ask about.

It (me) took nearly 5 years after my discectomy to understand what was going on and causing so much pain, a continuation of TMJD symtoms and new symtoms such as Tinnitus , eye problems, etc. Symtoms or problems I had never had before. It was muscular.

I did have a lot of bone, muscle and nerve damage going back 16 years. It seems that over the years, my body had adjusted to most of this damage and the majority of all of my pain and problems was due to the muscles compensating, repositioning and changing after each of these surgeries.

In my case, due to the length of time and number of surgeries, it was fairly obvious. The muscles on the left side of my face had enlarged to compensate due to a dislocated condyle from 16 years ago. The muscles on the right had shortened and pulled or drawn my face to the right. This will not happen to you. The surgeries I had 16 years ago left me in a mess.

I'm telling you this to let you know how much the muscles can change and the problems and pain this causes.

If you do not have anyone who is helping you with this aspect of the after affects of surgery on the TM joints, please find someone who understands this and knows what to do. Don't live in pain because a Surgeon has taken your disc out and left you to "Learn to live with it."

Everyone is different and you may be having other problems. You need to find out.

You may be experiencing severe muscular problems and this can be helped.

Don't live in pain because the Professionals you've seen don't know what to do, or give you drugs that dull the pain, but do not get to the cause.

Please take this as Concern and very Caring Advice.
You sound like me, a year ago.
When I took my Life back into my own hands and started looking for answers beyond what I had been told about my condition for many years, I found someone who had an idea of something that would help and not cause further problems.

It worked. A splint designed to relax the muscles and support my joints worked very quickly for me. This may not be the answer for you, but someone has the answer.

Take Care,
Cymy Sue

[This message has been edited by Cymy Sue (edited 09-30-2003).]

Old 10-04-2003, 04:39 AM   #5
Join Date: Aug 2003
Posts: 77
cally22 HB User

Dear cmy sue, thank you for your advice it is aalwys very helpful, and supportive, but i am at the point where I really don't know where to turn. I realize things aren't getting better, and my oral surgeon isn't doing anything for me. (I have went to pain management, and they overloaded me with painkillers, so i opted out of that) ( I decide that I would rather live with pain and be able to function in the daily world than be something that even i myself could not recognize . I mean I am sorry but I am still in high school and I felt really uncomfortable being on so many strong medications that were so, well...

Thank you once again fo your suggestions, I really know I need to do something, but just dont know what or how, who,etc. cally22.

Old 10-04-2003, 04:45 AM   #6
Join Date: Aug 2003
Posts: 77
cally22 HB User

Dear ouch-ear-pain, thank you for your reply it is nice to hear that I am not the only one here that is having a really hard time , and I'm not the only one still in school. I guess one of the hardest things for me in dealing with tmj is the lack of support from my peers, and other adults. So many times I wished that there was someone who understood what I was going through. Going to highschool with tmj, is tough that is for sure!!!!!!!!!!!!! Thank you for you're support, because on days like the day I wrote and here lately it has been really tough. Cally22.

Old 10-04-2003, 06:34 AM   #7
Cymy Sue
Senior Veteran
Join Date: Oct 2002
Location: Alabama
Posts: 1,021
Cymy Sue HB User


I'm terribly sorry if my post to you sounded like I was advocating using medication for the pain you're suffering now. That was not my intention.

The post was intended to suggest that a year after your surgery, your problems could be muscular and medications or drugs usually will not help.

It took me a very long time to realize how many symtoms and how much pain the muscles can cause after a surgery like this and it took physical help for me to get better. First, Massage Therapy and then a Splint.

I'm truly sorry if my post was not clear.

Take Care,
Cymy Sue

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