Hello Everyone, I was diagnosed with TOS about 5-6years ago. I underwent so many tests, a year of physical therapy, and am now about to have surgery. I have been hitting the web for the last year and am not finding out hardly anything, this site has been a great help. I want to detail what is going on and hope someone has some feedback for me.

I have been told that the problem is that when my arms (both) are at a 90 degree angle or certain other positions the artery that feeds each arm is pinched off. I have gotten used to the numbness and not being able to do certain things, but now it is affecting my daily life, so surgery seems like the next step.

The doctor here in South Dakota has performed this operation many times and assures me there will be no complications except that my pec or chest area will be numb, also that it might not fix it, but it wont make anything worse.

I have decided to do only one arm for now, my left as I am right handed. My worry it that there will be problems, and since I work in IT I need my hands and arms, and as vain as it sounds I cant find out anything about that scar, I was told it would be above my collar bone, and not too large.

Can anyone talk to me about this, the worst thing in my medical past is a couple broken bones, this freaking me out.

hi, and welcome. Sorry to meet you under these circumstances.

my question would be, are you having a first rib resection with scalenectomy or just a scalenectomy? Also, is your scalenectomy partial or complete? These are all veriations on a similar surgery, but may affect your outcome.

if your scar is going to be at the collar bone, you will be having a supraclavicular approach. So anything you read about an transaxillary approach is for a similar surgery with a different apporach, coming in from under the armpit.

I had a transaxillary approach 1st rib resections on both sides over the past 4 months and am happy to report i am doing well.

please fill us in on more details and we will be happy to answer your questions to the best of our ability!

again, welcome

Johanna

Does Dr say what he believes is possibly pinching the artery in your case? anything specific?
extra cervical rib, scalenes, ligaments, or large bands, etc.

There are special MRIs {3D?} that can be done to get more specific details
info- http://rsirescue.com/articles/collins.htm

What is your avg daily pain level?

Oh what were the broken bones you had or where? collarbone?

Have you found our useful sticky thread- tons of medical links and info-
http://neurotalk.psychcentral.com/showthread.php?t=84
also we have a Drs & PT listing -
http://neurotalk.psychcentral.com/showthread.php?t=135

To be honest I am not sure of what is all going to happen, I know that I do not have an extra rib, they figured that out a few years ago. I know that the doctor has said he can only tell me so much. and will have a better idea when he gets in there and sees what is going on.

I believe he is going to remove some of a rib and muscle tissue.

As far as pain, honestly it int much at all, my main problem is numbness, tingling, loss of function. Its not that it doesnt "hurt" its just kind of a different feeling, mornings there is some pain.

Thank you for talking with me about this.

I have Vascular, Arterial AND Neurological TOS
Caused by cummulative trama using the compooper, working 15 hour days/7 days a week at times for a year on an unergonomic workstation.
SURGERY PERFORMED ON ME IN 2003 bilateral costaclavicular decompression, ulnar nerve & scalenectomy resection.
NO rib removal.
And yes the incision sites r about 2" long above the clavical in the crease of my neck.
The circulation is better.
Am I glad I did the surgery?
Heck ya man.
Am I better or perfect?
It is ALL dependant on the severity of your condition & how you as an individual reacts and recovers.

Your surgeon may or may not know how important recovery and PT, hynotherapy, psychotherapy, etc... is
Whatever helps YOU.
Use every means available to YOU.
ITS soooo very important to keep your circulation flowing.
As I still use every tool available to me to reduce the pain, swelling, etc...
Cardio is vital for chronic pain patients with circulatory conditions.

As for returning to IT work.
Like I said its independant.
Personally, I can no longer perform my HR and budget career.
Doesnt mean YOU wont go back
Just listen to YOUR body
Take breaks, do YOUR exercises and use heat or cold packs whatever works for YOU.
Peter Edgelow's protocol saved me and years later Ithey are a part of my life.

We r here on the forum sharing our challenges, disabilities & frustrations.
We suffer from reactive life changes.
We r also heer to try and share with others our experiences and knowledge
And becasue only WE do WE understand what a day in the life is for US.
Tell us type A personality's we CANNOT do something and we freak and we also live & work through the pain.
Its unacceptable for us to do nothing as we are doers fighting and challenging each and every doc and turn in our lives.

O NO...this sounds pathetic doesnt it?
Ok now, remember what I said.
We here are the patients who cannot get enough help
Think about ALL the other patients NOT here who are just fine and dandy.

YOU WILL HAVE AN INCREDIBLE SUCCESSFUL SURGERY!!

Risks- besides the general risks associated with any surgery-

There is a risk of excess scar tissue developing in the area after these surgeries. Which can further impinge on the structures over time.
Some patients develop this and some do not. I don't think there is any way to predict this - unless you had other surgeries and developed excess scar tissue then.

Reading on the forum here you may notice that some have RSD with their TOS - some have it before surgery and some got it after a surgery {any surgery or even a minor injury can set off RSD- no specific cause or reason proved yet}

I feel these are things to be aware of and I wouldn't feel right if I didn't mention it.

We usually suggest getting at least one other surgical opinion and getting the best and most experienced surgeon that you can find.

I 2nd jo55's suggestion of getting a 2nd opinion. Even if you cannot travel to one of the experts you could at least send all of your myriad of test results to an expert and see if you can get a review of your tests. But it is best of course if you could travel to see an expert TOS surgeon.

And Olecyn's statement that she had vascular & arterial compression and DID NOT need her rib removed is worth investigating. If there is a way to achieve success w/o removing the rib it is well worth finding out if this may be an effective solution for those of us with arterial and/or vascular compression!

Hi,

Sorry you are having vascular problems. I had vascular TOS too and got immediate relief after having surgery with Doctor Brantigan in Denver. He's one of the top vascular docs in the nation. You can read his many patient testimonials many from young people dealing with TOS and how he's helped them. Some are bikers and ball players.

In my opinion he's the best to see for vascular surgery TOS.

I think his site is : www.drbrantigan.com

His office can help you get there and with insurance. Often he gets insurance compaines to go out of network with him because he has such a high success rate and rated one of the top vascular docs.

I wish you better days.

no rib removal = 55% success rate, somewaht less traumatic surgery

rib removal = 70% success rate, slightly more traumatic surgery

roughly speaking, assuming a competant surgeon, and quoting my neurologist, here, who is a TOS expert, and NOT a surgeon...just sees a lot of people pre and post op.

good luck, and yes, second opinion= good idea!!! for any major medical procedure, as long as it comes from a competant TOS doc.

Thank you Jokat for your info. I know that you did a tremendous amount of research to determine your own surgical choices and we are benefiting by your investigations. But I am confused as I was told, especially by Dr Sanders, that the surgery w. rib removal is a MUCH bigger surgery and that it involves MUCH more drastic recovery. I thought that it was the reason to try to avoid rib removal if a smaller surgery would be successful. But if it's only slightly more traumatic than I guess there is not much reason to try to avoid it. hmmm.