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TOS questions

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Old 11-23-2007, 04:13 PM   #1
Join Date: Nov 2007
Location: oxford, AL, USA
Posts: 6
ccshere HB User
TOS questions

I wasn't sure where to put this post. I had already posted the same on the RSD thread. They had alot of good information.

Iwas diagnosed and had thoracic outlet syndrome surgery done on my neck over a year ago, to cut the muscle away from the artery in my neck which was constricting the artery in my neck, supposedly causing the neck,shoulder,arm, hand,finger pain, and also numbness in my fingers. A year has went by and I do not see any improvement in the pain or numbness, it may be even worse. After the surgery, I was numb around the incision area on my this day I am still numb in that area. The pain is bad and I can't sit up for long periods of time. I went back to the surgeon that did the surgery and tried to explain to him these things, and he just brushed me off saying that I probably have arthritis in my shoulder now? That doesn't explain the constant numbness in my chest area I've had since my surgery! He seemed to not want to listen to what I had to say, instead gave me two precriptions for pain for arthritis, no xrays or tests to determine this. My neurologist that I had seen prior to seeing the surgeon told me, after holding my arm up, that he thinks I still have TOS, a year after my TOS surgery. I mentioned this to the surgeon and he scoffed the idea, told me he disagreed with the Neuro about me not having a pulse in my left arm still. As stated in an earlier post, I can check myself and know that I do NOT have a normal pulse in my left arm, it is very faint, at best, when holding my arm up. I do intend on getting a second opionion next week. Anyone suffering from TOS please reply, as I want to know if the pain and numbness ever goes away, or am I bound to this? Also, I'm concerned that maybe some nerves or muscles may have been damaged from the surgery since I still have numbness around the incision area.

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Old 11-23-2007, 05:56 PM   #2
Tight Socks
Join Date: May 2004
Location: Tacoma, WA
Posts: 68
Tight Socks HB User
Re: TOS questions

Hi. I had the same symptoms as you but it was my right arm, so I had the operation years ago and it relieved the pain immediately and it never returned, thank God. The heart surgeon had me listen with a stethescope to my upper chest to the sound of the blood pooling there in that area because it was not getting through. My only advice is to get hold of a stethescope and listen for yourself. It sounded like Niagra falls actually, at least to me, a lay person. My family doctor first suspected toc when he noticed that my arms showed two different blood pressures. I was so happy to finally have a doctor figure out what might be causing my lifetime of pain whenever I had to hold my right arm in a certain raised position, such as when slow dancing, sitting in a dentist's or beautician's chair etc. I not only had pain but also numbness and my hand actually began to curl up and was becoming almost useless. I'll tell you, that was scary! I never experienced any pain around the incision but it's only about 2-3 inches long and it healed with no problems at all. Now if I could just rid myself of this horrible peripheral neuropathy, I could die a happy woman.

Old 11-24-2007, 11:15 AM   #3
Join Date: Nov 2007
Location: oxford, AL, USA
Posts: 6
ccshere HB User
Red face Re: TOS questions

Thanks for replying. That was the whole purpose of getting the TOS surgery, so that the blood flow would be good after cutting the muscle around the artery, thus eliminating the pain and numbness from my neck all the way into my fingers. My incision was about 5 inches long, rather large and has constant numbness right below incision, sometimes stinging pain in that area, like when youve been to the dentist and your lip is still numb from the shot a dentist gives you. It's a weird feeling that I thought would go away, but after over a year, its still there, along with every thing else. Last night didn't help matters, I fell 10ft off some steps that lead to a basement, hit my head on a dresser, dont think there is anywhere on my body that doesnt hurt now, my neck, rib, head, leg, back, didnt go to er but thinking now I should have. I am one big PAIN

Old 12-03-2007, 09:19 AM   #4
Join Date: Dec 2007
Location: center harbor nh us
Posts: 1
anita777 HB User
Unhappy Re: TOS questions

Dear Newbie,

I also was diagnosed with TOS about 6 years ago. Aboout 3 yrs after the removel of a blood clot in the subclavial vein I opted not to have the first rib
resection which is the name of the surgery you suggested. Three years after I had tremendous pain in my arm and my index finger went numb. They did
the surgery and also told me it went neorogenic and they also had to decomp
ress all the nerves in my brachial plexus. I have had tremendous pain since worse then when I went in and now I can't feel any of my shoulder or hane or forarm. With a lot of pain just to the touch of the skin. I will be going back to see the surgeon, I dont know why they have caused so much damage as it is but I feel hopeless and I feel it will never go away now and they did perminite nerve damge.

Old 12-03-2007, 01:53 PM   #5
Join Date: Nov 2007
Location: oxford, AL, USA
Posts: 6
ccshere HB User
Re: TOS questions

I agree with you, I think I have permanent nerve and/or muscle damage from the TOS surgery, and the surgeon just doesnt want to admit that yes, i DO.

Old 12-21-2007, 09:08 AM   #6
Junior Member
Join Date: Jul 2003
Location: webster,tx
Posts: 46
payton HB User
Re: TOS questions

have any of you heard of elevations in blood pressure in chronic TOS due to the compression of the vagal nerve. incase you are not pruvy to the vagal nerve situation - it is a cranial nerve that passes through the medial scalenes and anterior scalenes (which are major components of TOS) on its way to innervating the diaphragm, heart, GI, and other anatomical structure. it plays a major role in heart rate and BP. well i have had severe TOS for the last couple of years and about a year ago my BP has gotten pretty high at times, just curious.
-Thanks ahead of time

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