Post thoracic outlet surgery

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I am 6 months post TOS surgery on the left and four months on the right. Also had a pec minor tenotomy both sides. Between first and second surgery things went okay until resistance band therapy started. it went downhill from there. Pain across chests, sides of each breasts extremely painful to touch, pins and needles pain across chest. Upper back burns , outside elbows burn, inside palms have pins and needles pain with loss of sensation. Basically anytime I use or move my chest, arms, hands,the burning pain, pins and needles pain, upper arm, forearm burning gets worse. The surgeon released me but I didn't know this even though I have mentioned the ongoing pain. I don't think it's cardiac related even though left chest pain is worse than right, won't take any more of the nerve pain drugs after years of having been prescribed them (misdiagnosis) and just forget words, simple words, I don't want the side effects and they never touched nerve pain before. Pain meds cause digestive system to shut down so not much of an option there. I just don't get why no one can explain the chest/breast pain. MRI and emgs aren't going to show any adhesions post op so I don't know wheee to go, who to ask or what kind of tests will help them find out where this isn't coming from. If I sleep sitting up it's not as bad, I can't grab a hairbrush or a coffee cup without making it worse. This was supposed to improve my life not make it horrible. I thought the transacillary incisons I have scar tissue since it's between both chest upper back and upper limb pain but no one will do anything to see if that's the problem. Has anyone has similar problems due to either surgeries?

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  • Posted

    This is the same as me. Had left side done then four months right side. But swelling refused to go down for weeks. And now over a year and can't keep grip of anything and if I move my arms above waist hight I am in pain across chest and arms go numb. It's worst than before op. Getting no help with hospital. Have to take morphine on really bad days. Can't work. So life is hell at the moment. So good luck.

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    • Posted

      Thanks for your reply Wendy. Did you also have the pec minor tenotomy? Prior to TOS I had been misdiagnosed for years; had carpal tunnel, cubital tunnel, Guyans canal release and flexor tendon lengthening. This was in January of this year and for some reason the hand surgeon made such tight stitched they had to dig and dig in the inside of my hand causing Complex Regional Pain Syndrome. So when I had the TOS and tenotomy, the thoracic vascular surgeon also did a Sympathectomy so I had the incisions above clavicle and transacillary just under each arm. I could at least touch my skin but now I have skin pain and burning even going into my legs. The surgeon released me even though I still have pain, itching (nerves in my upper chest) and all down my arms. Everyone keeps telling me it takes a while for nerves and blood flow to regenerate but it's very hard to wear clothes,grab a hairbrush or sit with my upper back against a surface. I would think maybe adhesions could've causing this and now the neurologist suggested ketamine infusions. The pain management doctor said something about a block but if the Symoathectomy was done how will a block help? All my symptoms lead back to TOS and the pec minor tendon. I read and researched but the surgeon released me but I don't think this is going to get better. I am almost 60 and had this for over 30 years and it took me this long to find out what was wrong but I don't want to continue to take any nerve medicine or pain medicine. Has anything else helped you?  I appreciate knowing I am not alone in this but I feel bad you have gone through the pain this long. I am hesitant about ketamine infusions but for Complex Regional Pain Syndrome ( that's what they are calling it now) it may help. I am scared to go have a mammogram because I don't have pain medicine and it's going to hurt really bad having that test done but it worries me not having it done.  I have tried CBD oil, frankencense under the tongue ( both nasty tasting) Epsom salt baths, and sleep in a chair. I can't lay on either side or it seems I "squash" the brachial plexus as I wake up with really sharp pins and needles so grabbing something just makes it even worse. i am not crazy about all these chemicals. Did they use a film or hydraulic acid over your brachial plexus after they removed all the adhesions and fibrous scarring?  I hate the cold but I can't wear sleeves and wear my shirt inside out so the seams don't irritate my skin. Crazy but good thing I don't leave the house. 

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    • Posted

      Hi. You are really going threw it! I cannot even have bed sheets on me! Everything seems to be to heavy on me. The only thing I do is water bottles around me. And really bad days morphine. Having bloods tests on Wednesday to see if it arthritis and fibromyalgia. I to find it had to go out. Shopping a nightmare. Because reaching for items bring on heart attack symptoms. Them dropping items. I don't think consultants quite understand the hells it is. I don't go out at night time due to being to tired. And waiting for appointments takes months and have been waste of time. I went to doctors last week. I did a letter took with me which explained what I was going threw. Because I can't stop crying then don't get my point threw. Thyroid trouble for 30 years. Carpel tunnel done few years ago. And cancer 17 years ago. Since TOS op c5/6 in neck collasped and they are putting neck down to all my symptoms . So it's a battle all the way.

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  • Posted

    My friend has the same symptoms. Burning nerve pain and sometimes his arm just shoots out to the side. He does not feel any improvement at all.  He had surgery on February 1 of this year so he’s only two weeks post op. How are you doing now?
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    • Posted

      Morning. My op for both sides was done over 2 years ago. And I still in pain. Loose feeling in both arms and get alot of burning. But they have just finished some more tests and have said I have got osteoarthritis with fibromyalgia. Plus 5/6 disc in neck collapsed .but I still say after my op there is a trapped nerve.

      Your friend should go back and ask about possibly of trapped nerves. But it is early days yet. Hopefully it will settle down.

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