Hi, I have this TOS for about 3 years ,I had the TOS surgery in Jan of this year and I am still having problems.
I still get numbness in hand and arm and I am getting this swelling in neck on right side above the collarbone which I think causes the numbness now which I have been told by my surgeon that this is something else and not related to my TOS.
Anyone with some ideas ,on this ,it is at this point very disappointing after all the physio and the surgery I have had.
Anyone who can help out ,I greatly appreciate it.
I am still doing physio at home on my own which helps.

Sorry about your situation, but I read your post and it angers me. Hate to be a pain in the butt, but your surgeon NEEDS to be accountable. To many cut and run and then place the blame elsewhere. Many times on the patient. Be your own advocate and demand the care you deserve.

Is the swelling similar to the what is posted about on this link? there's a photo of the area.
http://neurotalk.psychcentral.com/thread152560.html



My best suggestion is to find or get a referral to an expert physical therapist - one that can do a full evaluation of where you are at right now. Either they can help you or suggest if a different doctors opinion may be needed.

did you have mostly neuro or vascular TOS.

Which surgery did you have ?
resection only, resection & scalenes...??

Did dr tell you the avg recovery time frame? - usually months and then a few more months to get "normal" if it goes well. many do have some residual sx that stay around.
Also was possible scar tissue or adhesion growth or regrowth mentioned?

Has anything improved since the surgery?
Pain level before vs now?
symptoms before vs now?

[SIZE="4"]I agree with anne. Thats crap your surgeon is telling you, its not related to your tos, it most defeneltly is related. Unfortunatly post op care is not something may surgeons are very good at. Dont believe what you have been told, and be persistant with the SOB. You deserve that in the least. Whatever you do, dont take the blame on yourself. If you dont feel your getting anywhere with that specialist you may want to see another, and even possibly a lawyer.
Hope you dont think Im going over the top, just hate seeing people dumped by those that are supposted to be providing their care.
Hang in there.
Cheers,
Jay

I have the same thing in my neck on the left where I had the surgery this september. It feels like a rock and when I apply pressure to it, the tingling increases down arm and hand and shooting pain to shoulder.

Hello here is an update and a question also.I spent most of 2011 in numbness and pain . I started private manual physical therapy in summer 2011 and finished up to November it did help alot but 65$ for half hour sessions gets expensive, so my limit for private physical therapy insurance ran out .
Anyways I went back to see my surgeon in late November 2011,I had in my mind that I was fed up with pain and numbness and was not going to leave his office until he was going to help me .Even if I had to be dragged out by police!

First thing he told me was I can't do anything else for you i fixed the TOS he said ,you have other problems , I'll refer all your info back to your family physician. I told him I couldn't go on with the numbness and i needed help with it.
He then asked me , "did I give you nerve damage pills after surgery?"
I told him no and he told me we could try Lyrica ,but it will make you into a zombie, so lets forget about that.
I said no lets try it, how much worse can I get, he started me out on 25 mg 3 times a day for 2 weeks then 50mg 3 times a day for a month.
I seen him early Jan 2012 and he put me up to 100mg 3 times a day ,he didn't want to, again saying it was too much because of side effects. I told him the side effects are minimal compared to numbness and pain.
So far the pills have helped alot , but the past 2 weeks the numbness has come back .I am wondering and I say this with embarassment, I had been to see my other doctor for other reasons.
She gave me some viagra to try because I was having a few problems there, but since I have taken those 2 pills of viagra , the numbness and pain have come back, could it be the viagra irritating my system or maybe something physical I was doing or is it just a coincidence?
I am starting back my manual physical therapy tomorrow.
Any help or comments appreciated.
I've stopped the viagra anyways the past week but numbness is still around.

Anyone ? Thks

I can't comment on the Viagra other than a women's version would be nice.

I will say that your surgeon is still an idiot. 300mg of Lyrica is the starting "therapeutic" dose of Lyrica. I've gotten the Lyrica spiel from countless Docs and it's all the same. Other than adding about 4 lbs per 100mg to my body and giving my short term memory a little test, it doesn't make me a zombie. Granted, everyone will have their own experience.

Keep up with your manual therapy! Maybe a man can weigh-in on the Viagra question. My only guess is it's moving all your blood to one region.

ditto!!!!!! At the moment I'm trying very gentle neck stretching exercises and self massage with Bio oil, near the scar tissue and SCM area to help with lymph drainage and tightness. Of course consultants don't like it when they suggest their theory to you such as hand issues being solely down to carpal tunnel and then you suggest back at them whether or not it could be referred pain from the shoulders/neck region etc.

For a natural alternative give raw root ginger a try. It can be placed in hot water and made into a tea, which is very warming, its a good anti-inflammatory and excellent for boosting your circulation. In ALL areas...