I have not posted in a few months, but wanted to give an update on my post-surgery progress, as most with a positive outcome cease to post...and I want to put a spot of hope out there.

I suffered with TOS for 6 years before diagnosis, then went on for over another year waiting for the right time for surgery (military moves and lack of immediate family nearby meant I had to time it right). I ended up seeing Dr. Jason Lee at Stanford University and did the Edgelow protocol before deciding to go ahead with surgery. Had surgery Jan 10, 2012. Post surgery I had a lymphatic leak that put me in the hospital for a week with a chest tube, and that set me back a bit.

I began physical therapy at the end of January and felt so very down. Years of nerve damage left my scapula muscles severely atrophied, and as a result I had shoulder impingement. My scapula muscles were no longer strong enough to pull my upper arm down when I raised my arms. I couldn't reach behind my back anymore, and even after a month of therapy it was like one step forward, two steps back. After two months of attempting to resolve the shoulder problems in therapy, I had my local doc go ahead and give me a cortisone shot to the shoulder; and a week after that I finally started progressing. I was able to do more strengthening exercises, and that has been key in getting those scaps strong and stable. My shoulders are still not perfect (ie, I would hurt myself if I tried to swing a tennis racket) but I have no pain performing daily activities, and would be very okay if this was the best I ever got.

The most wonderful part of all this is....I have zero pain or numbness in my arm anymore! I drove 2,000 miles a few weeks ago without any pain...a feat that would have not been possible before surgery...heck I couldn't drive 40 miles before surgery without being in tears! This was not an easy recovery, however. Nerve regeneration and healing is SLOW. Until about the three month out mark, I had pain in my arm and shoulder that would seem to be in different areas each day. I had to take neurontin for the pain, and I was fearful that the surgery was a failure. But my surgeon assured me that an accurate outcome could not be ascertained until at least the three month mark...possibly longer with my complications. He was right, and when I turned that corner, it was amazing.

I can now look back and get a good sense of just how much pain I was in all those years. TOS pain literally takes over your life, and the slow progression can make it difficult to see just how much. Being out the other side now, it's painfully apparent how bad I was. I know there is a chance for scarring and a return of symptoms in the future. I heal really well and have had other surgeries from which I healed with minimal scarring...the amount of scarring can be genetic. Also, my physical therapist worked hard to keep the area mobile and help break up scar tissue as we went along. If you choose surgery, a commitment to therapy for the long hall is critical.

Anyhow, I just wanted to throw out my positive outcome for those that come looking for the surgical experiences of others. I'm over the moon happy that I had the surgery, and will not hesitate to have surgery on the other side when the time comes, as I have TOS on the right as well *sigh* (41 years old, rib resection/scalenectomy).

Hi holly,

Thanks for posting this.It does get a little scary seeing all the post surgery posts.I am still doing pt,just starting to look into surgery. I have seen 2 doctors so far and dont have a good feeling about doing it.

Did you have arterial/venous symptoms too or just neurogenic? Does your Dr do Ribresecton and scalenectomy together?and did you ever consider having scalenectomy only? I'm in Ca but have never heard of your dr. What made you choose him and Did you see other dr's in Ca? Sorry for all the questions, but thanks in advance!

Holly, this is wonderful news! I'm at 10 weeks today and feel terrific. I like your description of "over the moon happy". I told my husband that I don't think I've ever used the word "luxuriate" in my life, but I find myself stopping at various points during the day to just luxuriate in the absence of pain. I had chronic TOS pain for over 30 years. My doctors kept sending me to PT, which only made matters worse.

jkl626, I think the anti-surgery folks are pretty vocal here, which makes it difficult for those of us who have successful surgeries to post. That, and I suppose there's no reason to hang around once things are better. *edit*

I wish you well and hope you continue to feel wonderful!

I'm really pleased to hear you've had such great success.

I had surgery in SF more than 7 years ago and it was not successful. Unfortunately, even on this site where we often find more understanding from each other than we do from the wider world, it's difficult to put ourselves in each other's shoes.

People have good outcomes and bad and often there is no rational explanation. Most people here are motivated, well informed and eager to get back to some semblance of their old lives. If we can give each other the benefit of the doubt, then we can be a supportive community -- something I think we all want.

Thanks for coming back to let us share in the good news.

Take care,
Kelly

It is so great to read of good results happening for members.

Sometimes surgery is needed and when it & recovery goes well, that is awesome.

Thanks for the update Holly.
I am so glad to hear you are doing well and love hearing successful TOS surgery stories. Can't wait til the medical community figures out TOS so that everyone benefits from surgery.

Please check in from time to time to let us know how you are doing.
Thanks

You put it much better than I did, TOStrojan!

Holly,

Many thanks for your post. It is encouraging to hear positive surgery outcomes. I am especially thankful as I was just prescribed Neurontin for nerve pain post surgery on my right side, and the discomfort from my nerves has been a great challenge recently. I sincerely hope that my surgery outcomes are as positive as yours have been.

I am 11.5 weeks post surgery for my left side and 1.5 weeks post surgery for my right. I am 26 years old, and the cause of my TOS is speculated but not for certain. My left side recovery was much different to my right thus far. My left side experienced great pain that was deep in my chest and shoulder, and I had very limited mobility for awhile. However, my right side, I have little pain, it is much greater discomfort that is constant and nagging due to the nerves and my mobility is much greater. I know there are many more weeks to travel down this road to recovery.

I spoke to my surgeon this afternoon on the phone...he said the only thing that is predictable about these sorts of surgeries is that they are unpredictable. Apparently only 5% of his patients experience allodynia (hypersensitivity to stimuli that are not usually painful). I feel drained from this experience, as I had complications while in the hospital that required a second surgery. I thought that would be my complications out of the way, but I guess not.

Anyhow, thank you for your note. It really helps to know there is a light at the end of this tunnel, and I hope you continue to have a pain-free lifestyle!

So great to hear a positive report and some good news from a fellow TOSer!
We need all the encouragement we can get

Hi I just looked at your blog.Looks like lots of good info.I signed up on the facebook page and to get e-mail updates. Didnt see anywhere to post though. I am a redhead Tos'er too! Have you seen this article that Redheads feel more pain and need more anasthesia than other people.

http://io9.com/5890463/redheads-expe...ium=socialflow