Morning,
I understand your nervousness! It is a tricky surgery and there is a true right to be best informed before making the decision. I live in Tucson AZ, where are you located?
I have had symptoms for nearly three years- started small and I blew it off because there just wan't time for me to look into it. I thought it was because of moving, pulled something while walking my German Shepherds, etc. I went to a mico surgeon specializing in ulnar nerve entrapment (#1 surgeon in the S-west) and although I do infact have a 100% subluxed (dislocated) ulnar nerve in my left elbow and 60% in my right elbow, it wasn't the cause of all of my symptoms. Now, I'm in a slightly different boat than you- I am younger, just turned 26. I have been going to DRs for a few years and I felt that no one took me seriously because outwardly, I am a very healthy 20 something! In fact, my symptoms progressed so severely this past winter, that I went to see the #1 rated vascular surgeon at the best teaching hospital in the area. He turned me away saying it was impossible for me to have a valid vascular condition/compression. Maybe my arm/hand was turning red and swelling because of an allergic reaction to my lotion!!! Yeah, really.
So I went back to Sq one and researched again! Found an amazing and overly qualified vascular surgeon that specializes in althletes with this condition! He was my guy! Spent time with me, was very thorough and I was scheduled for surgery within weeks. I have ATOS on both sides, though my left side was urgent. I was at risk of either developing a clot, or risking severe damage to the artery itself due to the severe compression. Any movement above 90 degrees compressed my artery 100%. Not a drop of blood was moving in or out.

I had the surgery on 12 April (thru left armpit,) and I have posted in the thread titled 1st rib post op experiences. I had a left first rib removal and a scalenectomy. They removed about half of my scalene mucsles inorder to make room. Please read, it was very informative for me prior to surgery and I hope you will find our recovery stories helpfull as well. I am now nearly two months out from the surgery and I am doing really well. I had great health to start with, sounds like you as well. I didn't go to PT, the Dr said that because of my health/condition that it wasn't necessary. Everyone is different though. I would say that the first few days home were difficult, but I managed just fine after day two with only advil throughout the day- WHICH- let me say, the Vicodin actually hindered me and kept me on the couch/bed more than I needed out of just dizziness and sleepiness. Switch to Advil or so when you can and you will find that you may be mobile faster and able to rebound quicker. By the following week (7 days post op) I was doing great. Had nearly all of my mobility back, could sit at my desk and do my work just fine. Could I lift weights? No. Could I walk my dogs with that hand? No. Did I need help with laundry, dishes, etc? Yes of course.

Be aware, everyone is different. Everyone's healing will vary. I think I might be lucky, or I think I was very informed and carefull prior and after my surgery. If there is anything I can do to help you, or if you have specific questions, I'm happy to help. BTW- my right side will need surgery as well. It is ME and MY decision on when I have the right side done, not the Drs. I could easily have it completed now, but my husband and I are thinking about starting a family. We will make a decision soon on whether or not to have a baby soon, or to have the surgery first. The right side is getting worse though, or at least it seems that way. In reality, because my left side was really THAT bad, now that it is fixed, I am able to see/feel just how bad my right side is also.

Two months out (almost) all I have issues with is possibly over-doing it with my left shoulder which still will swell under the left collar bone and at the incision site. Don't be like me- don't sleep on your shoulder after surgery. I guess I'm stubborn in my sleep. lol. Thats all I have issues with! It's been great in comparison to what I've read.

All the best,
Jocelyn

Jocelyn,

Thanks for the reply.

I did sift through your thread. That's great you're doing so well.

I've spent about 18 months getting jerked around by incompetant doctors while my symptoms have slowly increased. I spent the first few months with orthos who thought I had rotator cuff/labrum issues. Nope. Then neurosurgeons, neurologists (who should be ashamed of themselves for not at least thinking outside the box that TOS could be a possibility), and even physiatrists. If it wasn't for my ulnar nerve blowing up around thanksgiving, I don't think TOS would have even been on the radar (and, I would have had unnecessary shoulder surgery as well...unreal).

Anyways, reading through your thread about your experience and others, it seems like if all goes well, most are well on their way to recovery after a couple months. Maybe three at most. That's great to hear.

What I'm not seeing is results six, twelve, two years out. So for example, if you've been an athelete, can you go back to being an athelete? I'm curious about the end state. I can deal with three months of pain and discomfort. I just want to know if I can live my life the way I want (without being foolish of course).

Also, my symptoms are not as harsh as others. I have occassional scapular burning and my elbow flares up. Additionally, these symptoms have diminished quite a bit since I started stretching my scalenes. I'm not sure if this puts me in a better position for surgery or what. Or maybe, I'm just at the beginning stages of TOS and because of the condition of the subclavian artery and the presence of a bruit, maybe it's only a matter of time before serious compression hits and I'm at risk for the more severe symptoms.

Oh, and I have bilateral ATOS as well. The right side is much more significant than the left.

Thanks.

KY

I had surgery 20 years ago and I really never recovered from it. I haven't been able to work, or do much of anything since then. I think one of my problems is I just worked too long before I ever got diagnosed and had the surgery. About 12 years. There was no Internet back then, so I had no clue what was wrong with me. When I had the surgery I had never even heard of TOS, so I had no idea how tramatic these surgeries can be.

I don't know if you've checked out my joint mobility post, but I have improved considerably from doing Intu-flow and Sharon butler's program. My advice would be give the Intu-flow a try, it's on youtube, so it wouldn't cost you anything if it doesn't work out.

Coop,

What was it about your particular situation that contributed to the poor results? Was it the time elapsed between original symptoms and diagnosis that made the situation too far gone? Could it be that procedures and results have improved since then? Or do you have a unique set of abnormalities?

I'm really curious what factors set apart those with great vs. good vs not so good results.

Thanks.

KY

I really don't know for sure, but my thinking is that I worked so long in pain before I ever had the surgery, that it probably caused a lot of scar tissue, adhesion's, and possibly nerve damage. I only had the scalene's removed because the surgeon didn't feel that the top rib was causing a problem. He seemed confident that the surgery was a success and that I would get better, but it never happened. I'm not sure what the success rate for these surgeries is, but I've heard alot of stories from others that were worse after surgery.

To get more long term results a search of member's user names that had surgeries might be a good idea, they may not be posting any more or reading here but you could send a PM and ask about an update on long term results.

FYI-
There are some that will have adhesions /scar tissue come back or regrow in the surgical areas or nearby locations. This may occur at any time but usually from past postings in the 6 + months or longer time frame.
Some bodies just happen to create more of this than others, and no telling who might have this issue.

I'm sure surgical knowledge, imaging & technique have improved over the years, but it is still a roll of the dice, on how anyone will recover & how well they will recover.

Hank Blalock a baseball player (former TX Ranger player} had TOS surgery, supposedly he recovered well but his ball playing career never recovered to the high that it had been. Lots of minor injuries plagued him, w/hands/arms /shoulders - I think it was residual chronic TOS.
He never posted here, but I checked on his bio once a year out of curiosity to see how he was doing.

One of the Hanson singers had TOS surgery I think.

yep -
http://neurotalk.psychcentral.com/thread146961.html

How does it feel after the scalenes are removed? is your range of motion the same?

Were you in alot of pain after surgery? How long did it take before you could return to work and ect?

Do you think the surgery made your worse ? Did it make your better at all ?

Hi hellothere, the positive thing about the surgery is my hand used to swell really bad and turn purple, now it does swell a little sometimes, but not nearly as bad. So it did help with that.

The bad part is the pain in my neck and shoulders is much worse. On the surgical side most of the pain is in the upper back and scapula area. It's been that way for 20 years now and I haven't been able to work since. It has improved in the last year with a good stretching program, but there is still some pain there.

As far as range of motion, the arm on the surgical side goes overhead a little bit easier. On the nonsurgical side, I can feel more pulling in my neck when I reach overhead. Also, my neck is still pretty tight and it's painful to turn my head very much, especially towards the surgery side.



The surgery was pretty rough and painful afterwards. I never really fully recovered from it.

I'm hoping more people respond to this thread. It would be interesting to see how others are doing, good or bad.

Jomar, I'm impressed that you are able to do so much. It gives me more motivation.

In 03 when my many RSI sx ( hands, wrist, elbow, shoulders, neck, upperback..) all decided to merge together I was pretty messed up for awhile. No extreme pain or pain meds but a lot of weird sx and discomfort. My hands quit working for awhile - I could still do large motions but small detail use, repetitious, or strength was out. I mean kinda scary when you can barely turn your arm/hand/ wrist to wipe....

Just saying this so you know it can get bad, but you can recover.

I'm a 55 yr old lady now & mostly out of shape
But....
I can again drive my tractor, rototill, do all kinds of remodel/construction/painting, yard & gardening, carry hay bales & other heavy stuff.
For the heavy lifting now my low back gets affected after a full day, but it usually resolves after a day or 2.
My handwriting still is messy but who cares about that LOL.
My shoulder is still a bit messed up, might be due to a separate old injury - I can't throw a ball overhand or hit a tennis ball overhand, but I can live with that.

What sports or activities are you considering for the future?

Jo Mar,

I want to stay fit and strong. This would include resistance training without a doubt.

I also live by the ocean. Prior to the onset of TOS, it would be common for me to drag my kayak down to the river and then "sprint" for 1:15 out to the ocean and then to the beach to meet up with the family.

We're talking pretty vigorous physical activity.

It would be interesting to know what the likes of a Hank Blaylock is up to these days. While he certainly can't play baseball at a professional level anymore I wonder if he's still engaged in athletic activities. I'd guess it would be very difficult for someone at his level to just drop vigorous physical activity. And from what I remember about Hank, he was jacked.

I'm not saying I'm Hank Blaylock, but I'm just not meant to be one of those people who grows old, gets fat, and just slumps away. If I have to settle for considerably less, that will be difficult.

And god knows this attitude works against me.

KY