Hey Fern, I get little electrical pulses in my thumbs down where the knuckle is at the front, I also notice at the same time that my vein is pumped and showing a fair bit. Also get stabbing pain in front of hand area half way between knuckles and wrist, like someone is driving something in can be quite painful. Apart from having artery, veins and nerves affected by TOS, I have C6 disc prolapse and C7 nerve compression.

Hope you feel better soon and get the answers from the Dr you are seeing, because we get very little help or understanding down under.

Ozzys

thanks everyone for your thoughts. I do have an affected c-spine but I think these symptoms are primarily TOS. Many of my pains are one's some of you have listed here--like Ozzy;s stabbing hand pain, astern's electrical vibration pains, jo's vibrating, buzzing... and more. This makes me think it might be a good idea for us to list some of these weird TOS pains somewhere in our stickies.

You have suggested seeing a doctor about these and I am still on a quest to find a doctor. I tried a new dr rec. by the nurse of a local TOS surgeon but this doc is an orthopedics dr who said his approach to TOS is to treat it aggressively with strengthening and stretching--that is unless the patient has the type that doesn't respond well to this. (of course that's me and many others here). He said that because my primarily neurogenic TOS now has developed a compressed vein and arteries that I shouldn't bother trying to find a neurologist to treat me. (huh, what would Dr Jordan or Newkirk say about that?). I'm going to try a pain doctor next and after that a physiatrist. Ihave to say that I'm getting tired of all this and only hope I find a treating doctor before my meds run out.

Keep up the search for a good one fern, best of luck.

I will start a thread for odd and unusual sx and we can add them there.

I had my neurology appt today. Parkinsons was ruled out . Dr says this is likely nerve damage causing my shaking hands and muscle spasms causing the larger extremities/head to quake and zap. Guess it's time to get back on a regular regemin of flexaril.

Hard to believe that at a Level 1 Trauma Hospital, I can't get an evoked potential EMG at c8 root ... "we can't do that here". So much for finding out if I am improved, the same or worse off.

Astern, I'm glad your appt was productive and grateful that you don't have Parkinsons. Yes, I think these symptoms are part of TOS. And I know that Dr Newkirk described itching and other electrical sensations as being part of TOS.

I had an appt today with a top neurologist (head of dept) at the Univ of MN, one I had to schedule far in advance. What another disappointment! He "cancelled" my appt after speaking with me and said that he'd refer me to a pain clinic instead. I asked to be referred to either a pain clinic or Physical Med doctor (physiatrist) who knows about and treats TOS but he wasn't aware of any. This is what the TOP neurologist said-1) TOS is usually caused by surgery. 2)95% of TOS cases are vascular and that's why neurologists don't treat TOS 3)after googling PubMed in fropnt of me to learn about TOS he said that TOS is not necessarily proven disease. I cant tell you how frustrated I am. I won't go to his referred pain clinic as the only reason he referred me there is because it's closest to my home. So I still don't have anyone to prescribe my meds for me. Luckily I haven't run out yet. I do have an appt w/a pain doctor at another clinic who may be willing to treat TOS. I feel as though I have landed on Mars and am looking for treatment for humans on a non-human populated planet.

I do still have the electrical symptoms and am glad to see everyone else posting theirs. It makes me realize that it is part of this TOS condition. So thank you all!

fern, just out of curiosity, how old a guy is the neurologist you saw? The one I saw was very young (30?) and said she'd never seen a case of TOS but remembers about it from Med school.

Makes it hard to get help when instruction on TOS is 'spotty'.

Anne

fern- what a jack in the butt. You should start sending him papers from Dr Jordan who is VERY much a neurologist and VERY in touch with TOS.

I will be keeping my fingers crossed for you, at least at a pain clinic they shoudl be able to help you treat your pain even if they don't understand TOS....

How the heck did this guy get to be the head of the department? He can't get all of his information from a Google search, even we know that!

I wonder what the surgeons at the U of M that perform thoracic outlet surgery would think if they knew that the head of the neurology department thought THEY were the ones that cause TOS! Sigh, ignorance is blindingly stupid.

Take care,
Melissa