Hi, all. Very relieved to have found this forum. Have read many of your stories and can relate to many of them, but definitely empathize with them all.

I am 36 yo. I've been a court reporter for 17 years. Three years ago I started developing left arm/neck pain and progressive weakness. I notice I was frequently dropping things, and I found thinks like stirring dinner and drying my hair progressively painful to the point of almost impossible. My left hand goes to sleep every night and anytime I hold it up, even to read a book.

I've seen my GP, a neurosurgeon, a pain specialist, four PTs, a chiropractor, and now a physiatrist. I've had negative cervical spine MRIs, shoulder arthrogram, and two negative EMGs. I finally had an MRA of my left subclavian artery, and it showed I have greater than 95% stenosis in about a three-centimeter section. They don't "think" I have a cervical rib, but the study apparently wasn't conclusive on that.

Doc has referred me to Hugh Gelabert at UCLA. (I live in Boise, Idaho.) Dr. Gelabert has said I need two surgeries; first the rib resection and scalenectomy, then I'll have to come back after recovery to have my artery ballooned/stented.

I've got six kids and own my own business. I've not done any actual court reporting for two months because with any activity, my hand falls asleep and swells and gets cold.

I'm very nervous about the surgeries, and wondered if anyone here has had both and/or knows Dr. Gelabert. My doc here helped me find him, as I have much family in that area to help post-op. Not sure how long I'll need to stay before I can fly home, how bad the recovery really is, and would love to hear from anyone regarding their ecperiences.

Thanks in advance -- I knew within about five minutes that I'd found the right place for help!!

If you HAVE to have surgery, I think you're in good hands. I hear good things about him. Sending you support, I know it's scary stuff. Do you have neuro stuff going on as well. Sucks with the surgery you trade one set of problems for another with scar tissue and pain. Feel for you... I'm in the same boat.

Thank you! From my understanding, no one is really giving me surgery options. My subclavian vein is fine, my brachial plexus seems fine from MRI, although they did say the cervical rib needed a better look. I had a scalene block yesterday that did absolutely no good. So I don't think I have neuro issues, and no one seems to know where the compression is coming from. I'm in good shape and have always been physically active (despite my user name, which is a nickname from my kids...I'm 5'8"/140.

Do you have ATOS too and are contemplating surgery? I wish someone would give me some alternatives as I definitely am to the point of desperation.

Thanks again. I'd love to hear your story as well. I guess I should go to the intros, huh?

If you have a true cervical rib, your surgical outcome prognosis seems (from research) to be much better. I have bilateral NTOS and am hoping no vascular involvement. I go to a vascular specialist next week for another opinion. Looking to avoid surgery if at all possible, but I suppose the vascular specialist's opinion will tell me if that is realistic.

With a 95% stenosis, I would imagine (just guessing) that is serious. What are your vascular specialists suggesting as options or courses of action?

So what are the symptoms of NTOS versus ATOS? I would assume you've got more nerve compression issues rather than the arterial compression I have?

Gelabert has told me Boxtox is not a good option because I didn't get relief from the scalene block. The only other option he gave me is to try MORE PT with some of the people he works closely with. But then in the next breath he says with the degree of compression I have, I really should have the surgery ASAP, i.e., next week. The risk is clotting/aneurysm, from my understanding.

I guess it's just all come so fast after so many years of symptoms and doctors and guesswork that while I'm relieved to finally have a definitive diagnosis, I'm scared to death of what my post-surgery life will be like.

Hello,
I can tell you that some from California went to Denver for TOS surgery and most were able to fly back home within the week after or so. ( from what I recall, many years ago)

Would you have lots of help after you go home?
what ages are your kids?

Most have described recovery as a week or 3 of feeling like being hit by a big truck.
Good pain meds are a big help during this time.

It is always good to get a second opinion from another TOS doc if possible, just for peace of mind.
To see if another surgeon would do something different or has another approach.

But sometimes you just have to go with things fairly quickly.


court reporter for 17 years.
ohhh,
just thinking about the postures of that job makes me think forward head/forward shoulders
Things might be far to compressed and changed over all those years, to get them back by PT alone, esp with the vascular system so involved.
You might get lucky and find a super special treatment person, it does happen.

DOCTORS & PTs List and saved PT info threads -
http://neurotalk.psychcentral.com/thread135.html

Did he put you on an anticoagulant then until you get your surgery?

Have you had any problem being lightheaded, dizzy or spacey?