I had another appointment with Dr. Donahue yesterday and I'm doing great. I find a lot of my visits are spent asking about some of the things I read on this board, and Dr. Donahue is great at addressing the loads of misinformation being passed around.

Scar tissue and adhesions are not preventable. Our bodies are programmed to heal themselves and they do so by producing scar tissue. Some people are predisposed to making more scar tissue than others (those that produce keloids, for example), but there's no way to stop it. He said he has never had to reoperate on someone who developed so much scar tissue that it hurt the positive effects of surgery. Doing too much after surgery is worrisome because you could overstretch nerves or otherwise damage them, but scar tissue does NOT cause problems. I will continue to do gentle range of motion stretches as I heal over the course of the next year or so.

The idea that you can simply pick a surgeon and ask him/her to operate on you is also sort of horrifying to me. Anyone who gives you a sales pitch, or is ready to operate on you regardless of whether or not they think surgery will actually help, is someone you should run away from. Dr. Donahue will not operate unless he is quite sure that surgery will benefit a patient. There are no guarantees, of course, but his vast experience has given him a pretty good idea of who will and will not be a good candidate for surgery. Also, there are lots of things that can't be seen on various imaging techniques. Apparently it takes getting into that area surgically to actually see certain problems.

A doctor's credentials actually DO matter. You want a surgeon who has a high success rate and who does a lot of these surgeries.

Another thing that I find worrisome is that for the over 30 years I suffered from TOS, a lot of my pain was the result of nerve impingement from my c-spine over the damaged rib. My scapula hurting was the result of nerve pain elsewhere, as were many other symptoms. I had a doctor at MIT give me shots in my scapula and neck because that's where the pain was. It was NOT where the pain was coming from and was a horrible idea.

Ok, off my ergonomic soap box for now! Sending good thoughts for less or no pain to all of you.

you are right scarring in the natural thing a body does, but there is a few ways of minimizing the effects of scarring. One way it to use a medical material to wrap around the nerve so that the scar tissue cannot attach to the nerve. I have read about it on multiple TOS websites and have been talking to a Doctor in California who uses this method and uses a mri process that supposely shows the exact pinch point of the nerve.

From his website here:
*edit*

I guess just because you read about it on various websites does not make it true. Plus, isn't Dr. Filler the sales pitch guy? Scar tissue does not ruin a nerve, overstretching it does.

Basically I mention possible scar tissue/adhesion because in the past so many jumped into surgery with any surgeon that suggested it ,and no understanding of possible risks and thinking " dr X says I need surgery - that all will be 100% fixed.".
And sometimes it did fix it and sometimes it didn't and a few times it was a total failure.
Or they were OK for a few months and for what ever reason sx came back..

I do think there are many more qualified surgeons that can expertly handle TOS surgeries than there was back in 04 when I started learning about it.

Jo*mar, I don't quite understand your answer. Are you saying that because a poster said surgery wasn't successful that the reason had to be that scar tissue was to blame? I'm sorry I'm fuzzy on that and may just be reading incorrectly!

I had failed surgery in January 2005. Eight months after the surgery my surgeon ordered an MRI with a radiologist who specializes in TOS and he said I had scar tissue building up on my brachial plexus. Both the radiologist and the vascular surgeon explained that the scar tissue was the reason for the continued pain. Several doctors have since told me that scar tissue on the brachial plexus equals chronic pain.

My surgeon did use a wrap in an attempt to prevent scarring but it didn't work in my case.

Kelly

I tend to think that the scar tissue was not removed properly to begin with. There's no way that so much scar tissue could've built up in such a short period of time.

I know of a few from long ago, that did have overgrowth of "scar" tissue/adhesions , internally - not surface scarring, that was a problem for them and caused ongoing pain & sx returning.
I believe a couple did have redos and wraps, but their body just happened to produce much more than the usual amount of scar tissue.
It can build up quickly in some people.

Some of the surgical failures just happen, no rhyme or reason.

I think 2 others were in auto accidents during the recovery time, so that set them back & messed them up quite a bit too. So be careful and make sure you have a safe driver taking you to appts & outings..


I'm sure every dr & surgeon has their own opinion about it. As we do too.

Just something to be aware of post op and long term, and again it may not be an issue for you, so not worth stressing about.

I would like to put forward a word of caution about this scar tissue issue that has been raised. The diversity of the people who share the support of this forum makes it very clear that no one person is the same.

Different surgeries achieve different outcomes depending on the individual and yes, scar tissue does grow depending on the type of surgery and the location. Knees for example is one area. Who else know someone who needed post op clean ups to their knee/leg surgeries?? Its a common outcome in the military.

I would warn against the generalisation that scar tissue does not cause problems, it does, and it gets removed regularly because of it. Remember that it is tougher than surrounding flesh and it doesn't yield, so even a small amount can cause grief.

Everyone, this is a quality forum, lets refrain from applying general sweeping statements from any source without focussing exactly on the audience intended, because it could unintentionally look like a put down of everyone else's opinion and experiences.

Limoges, mine caused issues after five months. My tumour was the size of an orange, so theres a lot of dissecting and playing around with things while they are in there!