I have to say, that sounds like a compelling argument for the surgery. Scar tissue risk aside, I think the bigger risk is doing nothing in your case. Is he suggesting resection -and- scalenectomy? Or?

I understand about the percentages. Id be very skeptical too. I'd probably account for doctor optimism and figure more like 75% chance. But that's still decent for prognosis, especially given he's looking at your specific case. How much will insurance cover ?

The asthma and risk of a collapsed lung is scary too. I can imagine why he's being proactive on that.

a few old threads about some of the CA surgeons. Did a forum search and came up w/ these. there's many more also - just do a search of the Drs name.

http://neurotalk.psychcentral.com/sh...light=Gelabert

http://neurotalk.psychcentral.com/sh...light=Gelabert

http://neurotalk.psychcentral.com/sh...light=Gelabert

BigMama -

Given the degree of compression, the doctor is right to advise you to do surgery as soon as possible. I know 3 or 4 people who've developed a blood clot, ended up in the hospital until the clot dissolved, then they had the surgery to open up the area. All of them were able to return to work and suffer no lasting problems. People with vascular TOS tend to fare better from surgery.

I was dx with vascular TOS a couple of years ago on my left side with a 75% compression of the artery and vein. They said surgery wasn't immediate in my future but was likely at some point. I was getting significant swelling at that point. Since then, I have progressed to developing NTOS on that side and am beginning to contemplate surgery.

I have had TOS surgery on my right side in 2004 and, in my view, made a complete recovery, the nerves all show re-growth on subsequent EMGs. It was a one-time injury that caused TOS to develop but I was pre-disposed to TOS due to an underlying bony abnormality. Because of the underlying bony abnormality, my surgery took twice as long as expected and they did puncture my lung in the surgery (one of the possible complications). Despite all this, I'm glad I did the surgery. Your asthma will probably complicate the picture but they are aware of the situation and will take good care of you.

Considering surgery is a scary decision to make. I know what I went through before I opted for surgery.

Jo*, thank you so much for the links. I'm so new to this that I don't really understand a lot of the forum features. So a big thanks.

343 -- he is doing the resection and scalenectomy at the same time. Then I go back after healing to have an angioplasty, depending on how much the artery recovers on its own. I definitely think you're right to include doctor optimism in the outcome percentages. I'm sure you're closer to accurate. Thank you for helping with perspective

Sheri -- oh my gosh. THANK YOU. I have not had ONE SINGLE PERSON be able to give me any post-surgical hope (except doc, of course.). He swears I have THE best possible chance, and I'm so glad to hear you had success!! I'm hoping and praying that you have the same good results on the other side if/when you decide to go there. Doc IS making a big deal out of the clotting issue, and while scary, it's nice to hear he's probably not exaggerating.

Two more questions for you guys (like I said, once I'm through this, it will be my turn to help.)

Gelabert is concerned about the level of pain meds I take now and being able to control pain after surgery. Did anyone stop pain meds going into surgery? I've done it since yesterday and cannot even move my left arm. Am typing with my right hand only, on my phone. It's awful, and my husband thinks unnecessary. I'm in an ungodly amount of pain now and it sucks.

No. 2, how unstable is your neck after the scalenectomy? I ride motocross and doc says after about 6 months and with good neck support, I'll be able to work AND ride again. Both sound crazy at the moment -- though I know baseball pitchers get to go back to their jobs after surgery...and I've always been overly optimistic and goal-oriented.

THANK YOU again for all of the advice. I truly cannot believe how lucky I was to find this. You guys are lucky to have had each other for all of these years.




I have had TOS surgery on my right side in 2004 and, in my view, made a complete recovery, the nerves all show re-growth on subsequent EMGs. It was a one-time injury that caused TOS to develop but I was pre-disposed to TOS due to an underlying bony abnormality. Because of the underlying bony abnormality, my surgery took twice as long as expected and they did puncture my lung in the surgery (one of the possible complications). Despite all this, I'm glad I did the surgery. Your asthma will probably complicate the picture but they are aware of the situation and will take good care of you.

Considering surgery is a scary decision to make. I know what I went through before I opted for surgery.[/QUOTE]

eek just the thought of typing messages on a phone is scary to me... I need a big keyboard LOL..

Typing a lot on small things like that does close down the area that we need to keep open as best we can... IMO

hope you can access a bigger keyboard some of the time...

It's not a fact I like to suggest. But as Sheri mentioned, Vascular surgeries fare much better than NTOS, unfortunately for me. *I am NTOS.

Might be a good question to ask what the worst possible chance would look like. How do they make that distinction.

What are you taking now?

Riding dirt bikes just seems like a recipe for disaster in my opinion. Especially with the load on the neck. I have wondered how the neck can support itself. I mean, does all the load just transfer to the SCM or?

Jo, holding my iPhone with my right hand and typing with my right thumb is all I can do. That's the only way I can sit upright and keep my motion to a minimum. There's no way I can sit at a desk with my left arm out because it's dead asleep in less than 30 seconds, and trying to hunt-and-peck with just my right hand causes way more body movement than what I can do with my phone. Sounds crazy, I know, but I'm actually kinda grateful for it.

343, I wish I could figure out how to respond to particulars as you do, but I can't figure that out on my phone...sorry!

First off, I'm so sorry you've got NTOS. I have learned that your struggle is much more difficult with many more unanswered questions than mine is. I wish you luck and pray that somehow some decision will become clear for you.

My understanding of his comments re best possible outcome I would guess stem from the ATOS dx alone, but that is a good question, and one I will ask (if for no other reason than to report back!)

I currently take 20-mg Oxycontin ER tid. However I only took one yesterday and one today, and am in agony. I was so determined not to change my life that it seems docs just kept throwing meds at me so I could cope. I've done okay (i.e., been able to live with the pain ness and deal with residual pain) up until the last few months. I've taken a dramatic turn for the worse, and it's been rapid and drastic. That part also scares me.

And as far as my dirt bike, well, that's just a recipie for disaster even when you're HEALTHY and get on one. But I've ridden my whole life, ride with my husband and my kids, and it's a HUGE part of our lives. I haven't been on my bike for six months, and before that my riding had been slowly tapering off due to pain. My brain obviously tells me it's not a viable option after surgery, but I refuse to believe it until I'm there and see it. After all, if you can't live the life you love -- or at least give it your best shot -- what's the point? I refuse to be "done" because of this.

I've now just got to figure out how to get through "this." The mental is by far what's taking a toll on me more than the physical, for now at least.

And, yes, my next biggest question for him is exactly how I'm not supposed to be a bobble-head with half of my neck muscles gone...


Riding dirt bikes just seems like a recipe for disaster in my opinion. Especially with the load on the neck. I have wondered how the neck can support itself. I mean, does all the load just transfer to the SCM or?[/QUOTE]

Have a look at Siri for the iPhone and/or Dragon Dictation. It's free for the iPhone in the app store. http://itunes.apple.com/us/app/drago...341446764?mt=8 - really handy. Talk and dictates for you. A real help.

That must suck coming from a world where you probably typed a million words a minute. I make my living on my computer too as a designer. Worried - as it's not only my job it's my hobby.

Thanks. I think there are pros and cons to each. I guess in theory, I don't have to go to bed with a fear of embolism or stroke. But the pain sucks, and it's weird sensory stuff that will drive one mad.

Yeah, I think it would seem that vascular alone is good. And you only have it on the one side? I'd feel pretty good about your odds if I were you. Any surgery is scary, no doubt. But if you had to have a scenario to do it...

I have had doctors try to give me pain medicine. It's something I've shied away from up until now. Might I ask how you were able to cope with it, and or side effects? Did you feel drugged or did your family report you as "not yourself." I don't want to be a zombie.

I hear you there. TOS has really had me look at my life a lot differently. Unfortunately I am self employed as a freelancer so there is no disability or early retirement option for me. I'm only 33. If I can't work I'm totally screwed. I have a new wife and the constant doctors' visits and tests are adding up quick. We're not prepared if I become disabled. The stress has made it very hard, and when someone does a google search on TOS surgery, the outcomes see so favorable. But then you talk to REAL people and see their actual results. It's scary to know how to proceed, especially bilaterally. Even if I dodged a bullet and got lucky once, a 30% favorable outcome, twice? I'm not sure I could count on TWO successful operations, let alone one.

One thing that comes to mind about surgery outcomes..now vs in the past.

In general I think TOS surgery, techniques, skills & knowledge have vastly improved over the years.

AND many more patients with TOS are getting better information from the internet.
The information sharing online helps every new TOS pt to make better choices and find better treatment providers.

In 2004 when I found a TOS forum and joined it, there were quite a few stories of TOS surgeries done by inexperienced surgeons.
Just because the person didn't know anything about TOS or have access to good info. They just believed what the doctors told them.
There was not a lot info online back then, and not everyone had internet in the home then. Many used dial up.....

But I think with all the info about TOS (or other unusual conditions) getting posted, and more people using the internet- knowledge is spreading, and the news of good doctors, surgeons & other therapies/selfcare is easier to find.


Good idea on the Dragon suggestion..

and
Dragon for computers -
every so often it goes on sale for 39.00 or so ??.

I believe Vista & Win 7 as well as Macs have a voice recognition program included in the operating system, you just have to set it up & have a good quality microphone.

Rx'd meds prior to surgery -

There are ways to work around this as I know many in the past were on pain meds going into surgery & there was no problems with compatibility or interactions from the post op meds.