need help please - TMJ Disorder -TemporoMandibular Joint Message Board

ellenk · 07-19-2007, 09:19 PM

I am new to this site but from what I have read, I feel that I may be able to get support/help/ guidance, etc. I have been fighting TMJ for 5 years which seems short compared to some of the threads that I have read. My problems began when I had a "bad surgery". My jaws locked but I was in no pain. After what I thought was a lot of research, I had a surgeon unlock my jaws. I woke up in pain and have not been pain free since. To make a long story longer, I am now a patient of Dr. Gremillion in Gainesville and feel comfortable with him. I have had 1 surgery with Dr. Dolwick 4 years ago to remove both disc. I have tried various meds, botox and pressure point injections. None have worked and I am on a down hill course. Dr. Dolwick now recommends a total joint replacement on both sides and I do not know what to do. I am scared. I have 2 young children and a wonderful husband, I hate what I have put them through because of the pain. I have not eaten a solid food in over 2 months and the pain meds do not work. Guidance from someone who has been down this path would be greatly appreciated. I am scared to go through this surgery because it seems so extreme at the same time, I have no quality of life. I dont have a friend that I can chat with, I have lost patience with most of my friends and I hate dumping it all on my husband. I am lost and could use advice. Thank you in advance for any help. Ellen

lorratt · 07-20-2007, 05:36 PM

Ellen,

So sorry that you are having to go through all of this. I have had TMJ for about 15 years now, so I understand completely how you are feeling.
Was the surgery to remove your disc's your first surgery because if so it was a bit drastic. i've had lots of surgery including a failed partial and then failed complete replacement so I really do understand how you are feeling with living in pain and not eating meals and loosing patience with friends and family, it's tough but somehow we always find the strength to continue, your children will amaze you with how resilient they are to all of this, my daughter is 13 now but has lived with this for so long that she just accepts that mum is in pain and that she can't do what a lot of other mum's do.
I'm going to have another replacement with a Concepts custom made pure Titanium joint any time now because it's what's best for me, yes i will still have pain but not to the extent that it is now so for me the risk is worth it.
It's a difficult decision to make but at the end of the day you have to weigh up what is going to be best for you and your family. can you live in this pain for ever or is it worth going ahead with the replacements, so that you can get your life back and start having fun again and eating proper meals. a friend of mine had her disc removed a while ago and she is now starting the process to have Replacements as her life is just a shell of what it was and she wants to have fun with her 4 year old again.
Get a second opinion, or even a third or forth do some research and reach the decision that is best for you.
I hope that you reach the decision that is best for you and your family to get you out of the pain that you are in.
take care,
lorraine

ellenk · 07-21-2007, 08:03 AM

Lorraine,
Thank you so much for taking the time to reply. 15 years, wow. My heart feels for you. Do you mind if I ask why you have to have the joint replacement done for a second time? What happenend with the first?

ellenk · 07-21-2007, 08:07 AM

Lorraine,
Sorry I hit the wrong key before I finished. I just wanted to answer your question regarding my first surgery. I had locked for some reason. I had no pain but could not open. I did what I thought was a great deal of research and found the best person in our area. He did authoscopic (sp?) to open the joint. When I woke up I had pain and have had it since. When he opened the joint he made mince meat of my discs and that is why I had to have them removed.

Thank you again for taking the time to write. I truly appreciate it. Just to know that you are not alone makes the process better! Sometimes I think that no one gets it, not even the drs.

I wish you all the best with your surgery ~when will you have it.
Ellen

lorratt · 07-21-2007, 03:06 PM

Ellen,

The replacement joint had to be removed as I had a severe infection that would not clear under any circumstances it did'nt matter what antibiotics they tried it would not go, so it had to be remove as i was becoming quite unwell with liver and kidney failure, and with removing the joints they could stop the antibiotics and allowed my organs to recover.
Anyway further down the line my consultant attended a conference in the US and it was suggested to send me for allergy tests which I had an it turned out that i was allergic to all the metals used in replacement joints so no matter what joint I had replaced the outcome would have been the same, anyway I'm not allergic to Titanium so my new joint is made from pure titanium and I'm going to have surgery any time now, just got to wait for a date that is convinient to my Surgeon and myself.
Lorraine