Debilitating Pain for 11 years, may have TOS???
 

I'm new to this forum, just found it tonite while browsing for more information on TOS....
LONG story short, I've had pain in my neck and behind my right shoulder blade since my daughter was 4 months. I've been to 12 different doctors during 11 years, including places such as the Mayo Clinic, I've done physical therapy, have had lidocaine injections, MRI's, x-rays, you name it.
I finally gave up about 5 years ago, and just live with the pain. It is chronic, never goes away, makes me very tired and sometimes irritable (which is so not my person).
I happened upon TOS on the internet a couple of weeks ago. My right hand (same side as my neck and upper shoulder pain) has started getting cold. As a matter of fact, as I am now typing, its cold as ice. About 5 years ago, my right forearm started to become weak, and it seemed as though my fine motor skills were becoming affected. Sometimes when I'm writing I have a hard time ....very hard to explain, almost like a cramp, and my hand cant do what my brain is telling it to (right hand as well). Went to the doctor 5 years ago (I'd already been going for shoulder pain for 6 years at this point) and they found nothing.
But, as I'm researching reasons for my right hand becoming cold, I found TOS. Sounds exactly like all of these problems I've been having all these years. I didnt call the doctor because Ive recently switched insurances, and the insurance company told me they'd cover nothing to do with my prior backpain until after a year, as its considered pre-exsisting even though I was never diagnosed with anything....
HOWEVER, I had an appt with a local plastic surgeon today, completely unrelated to my neck, shoulder pain. He began to read my chart and saw that I have this numbness and tingling in my right arm, and we began to discuss this. Within 3 minutes, he told me it sounds like I have TOS (which I never mentioned to him I was just recently reading about) and he'd like to see me back. I guess he does surgeries related to this complication. He asked me if I have a cervical rib, which I've been told that I do. He said this tends to complicate this sort of thing.
SO, this was just today.....I'm happy and scared at the same time. I cant imagine waking up feeling less pain (or none at all-is that possible) so I really hope to find some relief.
Curious if my symptoms sound anything like what other people experience?? I'd love to hear other peoples stories!!!!!!!

Peaswink -

The cervical rib will definitely pre-dispose you to TOS. Something else (lifting a 4 month old) probably triggered the onset. Your description of the cramping sounds familiar to me although, in my case, I just couldn't grip anything. At first, it was a sharp pain as I tried to grab something - I remember reaching to pull lasagna out of the oven, experienced a bad shot of pain and dropped the lasagna on the floor. It was for a family gathering and we had to order pizza . . . By the time I went for surgery (20 months post MVA that triggered TOS), I had lost the use of the hand/arm. I couldn't grip a pen, fork, knife, etc.

For me, surgery was a huge relief. Surgery doesn't work for everyone but it may help relieve some symptoms. Definitely seek a 2nd opinion and inquire about the surgical outcomes before going that route.

It's good that you found a doctor who recognized the symptoms.

From what I have read, surgery tends to be more successful for those with a cervical rib than those of us without one....as in, if the cervical rib is the main offender in causing compression in the TO, taking it out can open up a lot of room

I had surgery in Denver, by Dr. Annest.

I got 10% relief, but I'd do it again as 10% is better than nothing.

I have a nurse 4 days a week, bed ridden 90% of day, as I also now have RSD, diabetes and other neuropathies to all feet, hands, etc. - although it started with right hand only...

You must get good pain relief, and need a pain management doctor who believes in and knows about TOS.

Hello & Welcome peaswink,

Somehow i missed seeing your post until now.

As finz mentioned, and from past posters history- it seems that the extra cervie rib surgery usually has the more favorable outcomes.

You do need to be sure you find the best surgeon you can.
They may suggest some PT first, just to see it it can help, before the surgery step.

Feel free to read thru some of the other posts or use the forum search link to find specific topics.
http://neurotalk.psychcentral.com/forum24.html

the forum search is to the right in the colored bar above the main TOS thread list- Forum Tools Search this Forum