Cymy Sue

Michelle,
I'm sorry I missed this post. I did read about your visit with the surgeon.
Sadly, some of his statements are similiar to some I've hard before. Many of them just have to have that little bit of arrogance when a surgery they have done has not worked well. I'm afraid I never sensed any compassion from them either, but did always seem to be made to feel like it was somehow my fault that the procedure had not worked.

I've never heard "causalgia" used in reference to problems that can develope after (TM Joint) surgery. I looked it up and still am unclear as to this reference about your condition. It seems Causalgia is a term that can be used when there is pain when there shouldn't be. Maybe some Doctors use it when they don't really know what is causing the pain or how else to describe the remaining pain from a procedure.
I don't believe causalgia is a nerve disorder, but the result of injuring tissue and nerves which does occur during surgery. These should heal with time.
I've never heard his theory of a blood vessel connecting to or growing to a nerve. I guess anything of this nature is possible. I'm not clear on exactly what adhesions are either. I have been told that I a lot of scarring, but it's where they have made the incisions more than once.
With a discectomy, they "Hope" scar tissue will form where the disc have been removed and form a pad between the bones. Apparently, this did happen with mine, but I don't believe I had any over growth of scar tissue in or around the joint or I wouldn't be able to function now.
I don't understand exactly how in one case scarring can be contained to one small area as was intended and with other cases it seems scarring occurs in areas it shouldn't and causes problems.
I guess our bodies respond differently and my personal opinion is that the skill of the Surgeon has a lot to do with the problems that occur after these procedures.

I know this probably doesn't help you very much, but we're all told so many different things in regard to "Our" problems after surgery and there's so little information available if we have problems. I've researched for years to try and determine why, what & how and do not find anything published about the "After Surgery" complications. I would have been totally in the dark about my initial pain and problems if I had relied on my last Surgeon for information. A Pain Specialist determined why I was in so much pain and explained what was going on. 5 years later, the Surgeon was still no help and my Dentist told me that muscle problems were causing the continuation of the majority of the pain and problems.

Possibly your Neurologist would be of more help than the Surgeon and could either confirm or dismiss this theory your Surgeon has suggested.
I'm don't know if another procedure so soon would be helpful. If his theory is wrong, another invasion into the joint, even an arthrocentisis, could cause more trauma and pain.

I've been where you are, not knowing what to do and knowing I had to do something. Finding out what is causing the pain is what needs to be done before you consent to any more procedures. I know that's what you've been trying to do, but from my experience, you may not get a straight answer from your Surgeon.
I have in the past, gone to other Surgeons for their opinion. Not because I wanted another surgery, but to get a different perspective on my condition. Sometimes, I did get more information, sometimes not. I also consulted with neurologists to get their opinions. I went back once to my first Surgeon, who no longer did TM joint surgeries and ask his opinion. I got to the point where finding out what had been done, what kind of damage I could possibly have to keep me from getting better, became my only objective. I decided before I let anyone else cut again, I was going to know it would help.
Most of the advice I got was to treat the symtoms and pain and give it some more time. Many times the body will heal with enough time.
I'm glad I did wait. I waited until I was not considered a good candidate for any other type of surgery and a few months later, found out a splint was all I needed to get well.
I know our conditions are very different and this wouldn't be the case for everyone. I just don't believe to keep going into the joint is the only answer and eventually, it may not be an option for you.

I would see what the neurologist has to say. Sometimes they can be a little strange, but they do usually understand and can determine why we are having pain. Maybe with more information and another opinion, a decision on what to do will be more obvious.

I know the pain can be overwhelming. I know it seems it will never be better.
I got through it by always believing it would get better. I did have days that I thought I couldn't do it anymore, but I wouldn't allow myself to stay in that place. I would manage to find hope and determination. I would put things into perspective and start all over again. I had great faith that I would overcome the worst of it and manage to have a life again.

Years ago, when very few people knew "what" it was and even Doctors thought these surgeries always work and didn't understand why we didn't recover on schedule, it was hard. As the years went by and TMJD and damage from the surgeries was understood a little better by more people and other Doctors, there was a little more compassion and support.
It is still terribly misunderstood and that makes it so much harder.

When I felt that the physical pain was getting to me mentally, manifesting as anxiety, fear, hopelessness, etc., I did something (anything) to get the negative emotions stopped.
Keeping a positive outlook is hard when you're in terrible pain that seems to never end. The only way to get through it, is to be positive, hopeful and know that this will not last forever.
The worst physical pain I have ever suffered was when I would stumble into a negative "zone" and dwell on never getting out of pain or ever being better.
I found I could deal with the pain much better if I kept my mind, myself, who I am, in a positive "zone". You are in terrible pain right now, but that's not who you are. You are so much more. Try to keep in mind everything that is positive about "You". Keep your mind occupied with hope, belief, the knowledge that this is a bad period in your life, but there will be an end to it. Do everything you can to stay in a mental state of mind that "you" will find the answers and someone will "know" how to help you, you just haven't reached that point, yet.

This is not some philosophical mumbo-jumbo. This is how to survive.
The mind is a miraculous healer. Keep your thoughts positive and hopeful and it will respond. It does not have the ability to just stop the pain. It does have the ability to keep you from giving up. It has the ability to keep you determined to find the answers you need to get well. It has the ability to give you the strength you need to handle the pain until you find the solution.

Cymy Sue