That's sounds pretty good. I hope you will stay on this forum if you heal at a certain level. What % you think you heal since your surgery on your other side? Thank you for the update!!

Alexis

Recovery
 

Dear Alexis, I will always be marked by this condition and will also check back with NeuroTalk in the future. However, I also hope that I will be able to close the TOS chapter somehow in a few months. This was really a traumatic period of my life with impact on my personality, my partnership and so many other things. I would say, that the symtomps are 80% gone by now. Nerve pain is still an issue, even though I did not feel so much nerve pain on my left side pre-Op but I had severe muscle spasms with tremors. The tremors are mostly gone now. Migraines are all gone - I had them at least once a week, sometimes up to 3 days in a row. I know every body is different. But I would like to encourage people to look for a good surgeon, especially if the symptoms are so bad.

Kind regards

Pretty amazing!!


I beleive you are in USA? I am in Canada and i have a great surgeon so i am pretty lucky for that!! Almost positive you gonna heal right on your second side :)

Alexis

Thanks for keeping us updated on your progress. Sounds great so far...
Do you mind sharing the name of your surgeon?

Wishing you continued recovery and improvement....

Surgeon
 

Hello! I live in Europe and had surgery in Switzerland at the private clinic Hirslanden in Aarau, Switzerland. Surgeon: Prof. Stober. He is a hand and vascular surgeon and one of the top specialists for TOS-surgery in Europe. If you have any questions, just ask.

Surgery As an Option - VTOS vs. NTOS
 

So happy you have had such good results with your TOS surgeries! But I do think it is important for people to understand that both the need and the outcome for surgery is very different for those of us with Neurogenic TOS than it is if we have Vascular TOS (as you do).

VTOS responds MUCH better to surgery than NTOS. In fact, only a very small percentage of NTOS'ers are good candidates for surgery in the first place, no matter how bad the symptoms have become.

When a surgeon tells you s/he has a "success rate" of say, 70%, maybe we should be asking whether that represents VTOS and NTOS surgical results COMBINED (which would bring those stats way up). If so, then the % can be very misleading. NTOS is notoriously resistant to treatment, and this especially includes surgical treatment. So many poor outcomes!

Like the lady in SF says, TOS surgery can make you waaaay worse in the long run. Even if the pain and disability are so bad you think it cannot get any worse! It should ultimately be the surgeon's decision - not ours - as to whether surgery is even indicated (it almost always is with VTOS, and almost always is NOT with NTOS), regardless of the amount of muscle spasm, nerve damage, etc. we might have.

You will end up with a lot more scar tissue, regardless, along with all of the problems that that entails, if surgery is undertaken. I for one wish I had not rushed quite so fast to Denver once I finally received my dx of "True" Neurogenic TOS - which happens to be in that 1% category of NTOS where surgery is one of the only options.

Sorry this post is so long. Wish you the best in your recovery!

Great points.

I'm sure the vascular cases are included in the success rates. I was glad to receive the VTOS diagnosis alongside the NTOS. Even though my TOS symptoms are gone, I still wonder if I had learned of TOS sooner if I could have avoided spinal surgery and the chronic pain that has resulted.

"My TOS symptoms are gone". Nospam, As you know my path has been similar to yours. Misdiagnosed spinal surgeries, shoulder surgeries, etc. 10 years of TOS before I saw a doctor who could spell T-O-S.

I am heading back for "adhesion removal" surgery in April. I hope I get the same result as you. Many around me do not understand how I can be going thru this again and cannot believe another surgery is coming. I may not get the result you seem to have obtained but I know my body and I went from "bliss" post first surgery to recurrence as bad or worse than before surgery. Something changed in my body and has things "strangled". It's just a feeling and multiple doctors have concurred. I too was diagnosed NTOS going into surgery but had both VTOS and NTOS. Unfortunately I think I am having both problems again.

I know this is a risk. A big one. I plan to throw the kitchen sink at things this time but I realize it may or may not work out. I don't know what the future holds but I know who holds the future. Like I said it may not work out but I have a peace about it right now.

I feel for everyone on here who is struggling. This condition is extremely difficult and complex. We have to battle and encourage each other.

AMEN!!!! I agree with u 100%!!! After three surgeries, I know what u are talking about. I've said the same things in my writings. But we have to encourage one another, and don't stop postings. I've written it, and told so many others. I've dealt with this now 21yrs, and TOS is very difficult. My two previous surgeries I felt great. Started to play basketball, tennis, etc. Lift weights again. I believe around the 6 month or so my symptoms returned. This was my first two surgeries. Now I'm trying to recover from my third one I had in Dec.

I'm praying for u, but don't get discouraged. May GOD be with u, and see u through it. When it's over, don't try to over do it. One day at a time. Let us know how it turns out.

Romans8,

I wish you the best of luck. I'm in the same boat. Who is doing your surgery?

Good luck,
Kelly