[heybro]

I have had TOS for 8 years and just in the past year have finally narrowed it down to actually being TOS. I have been going to PT for about a year now and the therapist wants to take a break and come back to it later.

I was improving with therapy but now that I won't be going any more, combined with the fact that I am worse again after stretching my limits just a little......I am really scared again.

I can get along in life OK. There are many activities I cannot do and I have had to change my career but I get generally get along OK.

I wonder if I should try surgery so I can be 100 percent OK and maybe change my job to a computer job again and to also be able to do things like reach above my head without my blood going low in my hands. haha. The simple things in life!

I understand I will most likely try more non surgery things (edgelow?) and more PT? in the next year or just simply trying to heal or breathing, etc.

I am very curious if surgery EVER works for anyone? Scar tissue always comes back?

Some people regret surgery?

The doctors are no help in the decision of course and really, only scare me away from it so far. (i've been able to talk more about a car purchase with a dealership than a surgery with a doctor) !!!!!

[Iris]

I would try edgelow first. If you read on even mass gen site, they state that most people do not need surgery. Have you seen one of the top docs recommended by list members?

Originally Posted by heybro

I have had TOS for 8 years and just in the past year have finally narrowed it down to actually being TOS. I have been going to PT for about a year now and the therapist wants to take a break and come back to it later.

I was improving with therapy but now that I won't be going any more, combined with the fact that I am worse again after stretching my limits just a little......I am really scared again.

I can get along in life OK. There are many activities I cannot do and I have had to change my career but I get generally get along OK.

I wonder if I should try surgery so I can be 100 percent OK and maybe change my job to a computer job again and to also be able to do things like reach above my head without my blood going low in my hands. haha. The simple things in life!

I understand I will most likely try more non surgery things (edgelow?) and more PT? in the next year or just simply trying to heal or breathing, etc.

I am very curious if surgery EVER works for anyone? Scar tissue always comes back?

Some people regret surgery?

The doctors are no help in the decision of course and really, only scare me away from it so far. (i've been able to talk more about a car purchase with a dealership than a surgery with a doctor) !!!!!

[LiveLoveandTrust]

If you're getting along okay, it's really not the time for surgery yet if you have NTOS. If you have a vascular form of TOS, you may want to think more seriously about getting the surgery. People with venous or arterial TOS tend to do better after surgery and have things like clotting, pulmonary embolism, stroke, and gangrene to worry about. If it is NTOS and you're getting along okay then usually more PT and whatnot is what is advised especially if you're seeing some progress there.
I had all three types of TOS, my symptoms were mostly neurogenic. I just had surgery a week and a half ago and I feel pretty darn good. I can tell that even if the surgery didn't help 100%, it certainly helped quite a bit. Yesterday I felt better without the post surgical pain medications than I did before surgery. So yes, sometimes, in the hands of a good surgeon who knows what they are doing, surgery is successful. It's nothing to jump into lightly though!

[jkl626]

I am at a similar pt. Heybro.I sent you a pm but it was awhile ago. I am going to order the edgelow too though and try some new things. Did your pt give you home exercises to do? Mine help me alot and I am religious about doing them every day. I cant believe your pt wants you to take a year break especially when youve had such good results. Mine wants to dismiss me too soon, he says he dismmises people when they are at 80% and then it takes alot longer to get better than that so then you are on your own. He says though that I can always come back. Their version of better is different than ours. Thats when its time to find some new therapy-massage, acupunture,injections?

Its true it seems like there are not very many success stories here and it also discourages me from wanting the surgery, but sometimes I feel desperate. In my case I have decided if i am not able to go back to work and make it work then I will look into surgery again.

[Mr.Hope]

After 14 years of progressively less activity and increased pain I was advised by three surgeons over a two year period to quit my job and stop using my arms or I was going to lose them. They insisted that the surgery was simply too risky and recommended against continuing to modify my lifestyle - down to modifying basic daily routines ie electric toothbrush.
I persisted and found a surgeon in BC (I'm Canadian) who specialized in lung transplants and TOS surgery (Dr. Bill Nelems). My initial appointment was April 2011 and he was dumbfounded and even a bit angry that the other surgeons would leave me in the condition that I was in. He performed dual first rib and cervical rib resections (really just fibrous masses in my case) as well as dual sympathectomies - due to the level of damage to the sympathetic nerves.
It has been just over a year and the healing process has not been easy but was an absolute cakewalk compared with the state I was in before the surgery. He did the right side on a Wednesday and the left side on a Friday and I woke up jubilant after the right side as there was immediate relief and obvious blood flow and sensation to my right arm.
Now, I am not saying go jump into surgery as I was getting close to being in enough continual pain to want my arms removed - or worse - just to escape the torture. I am glad that I did not push the local surgeons here in Ontario either - if they think it is too risky they are probably right - it just needs to be clarified that it is too risky because they do not have the experience or confidence to do the surgery themselves. Dr. Nelems saved my life and made the entire process low stress and seemingly simple.
The medical journals on the web are the best place to get CURRENT information on the appropriate testing for TOS. MRI's, Catscans, xrays etc. all have limited ability without the practical application of physical testing by a skilled surgeon. In my case Dr. Nelems said it was so painfully obvious, apologies for choice of words, that he could not believe that I had to seek him out myself and fight the system to get the surgery completed.
Persist!

[nospam]

Once I figured out that raising my arms exacerbated my symptoms and some of the symptoms had become vascular, I started seeing vascular TOS specialists to determine the severity. The vascular issues and loss of strength pushed me to surgery.

Learning the extent of your vascular involvement is important when considering surgery. Unless you are experiencing a loss of strength or severe radiating ulnar pain, surgery is not a necessity (but could still potentially offer relief). Neurontin or Lyrica can provide some decent relief to the neuropathy. Adding Cymbalta or Pamelor to the cocktail can offer even better relief. They really just dull the neuropathy vs completely covering it up like narcotics. Do whatever you can to keep your elbows by your side while you sleep.