so basically I have had my symptoms for 5 years on both sides. Ive seen some of the best PTs in OC. I have done rolfing, acupuncture, ART multiple times, neuromuscular therapy, PT, Chiro, really the only thing that worked for me was working on my posture. I don't think the leg pain is related to TOS it goes down the front on my leg into my calves pins and needles. MIRs where fine and the EMGs didn't pick up anything. Dr gelabert kinda lied and said he would do surgery one side and the other side would fix its self. I told him there is no way that the other side could recover by its self because its been so long. I don't have any weakness just neuropathic pain down both arms and pain in the front of my neck.

so does anyone have leg pain and arm pain from NTOS?

I think some people around here do. not me.

Im curious to know if you will go through with the surgery?

I think you're on the right track with posture. Surgery can help for some but not others. NTOS has the worst surgical success rates for the 3 versions of TOS. I can only speak for myself as I had surgery for NTOS 3 years ago and it has made things worse. I've been to a ton of therapists and the only ones that are helpful focus more on manual therapy and posture. I am taking 2-4 months off to see a TOS specialist in Pennsylvania - Suparna Damany. I have spoke to someone on this forum who had failed TOS surgery and recovered after 3-4 months of physical therapy with her.

Here's a link on a college football player with bilateral TOS who decided on conservative measures. The first 2 physical therapy interventions failed. He went out of state to the third at the Postural Restoration Institute and recovered after only 6 weeks.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2953353/

Yes! My son is 2 years post op Dr Donahue, n/tos. It was a very long recovery with some backward movement during the recovery process - a few months surgery recovery and a year-plus TOS recovery after surgery (not a quick fix by any means). But it was a success and my son has his life back, is able to do things that TOS stole from him. No more daily pain, numbness, weakness, etc. Flares are few and far between and when they do occur, they are less intense and resolve faster. I wish the same for all of you who are suffering this terrible condition. My advice is if you are looking to surgery, choose your surgeon very, very carefully - and talk to his/her other patients.

This is actually so nice to hear once in a while.

I had both first ribs taken out, and I have had good results. The surgery is hard, don't get me wrong on that, but within a year or so of the first one, and then within 6 months of the second one, I would say my symptoms were pretty much gone and I felt great. I have posted on here once before in March of last year, and rather than retype, I am going to just copy and paste that below. Feel free to email me if you have more questions though.


(Written 6 months post-op)
"Hey,

I am happy to go into more detail about my experiences if you want, but I just wanted to say that I had my 1st rib removed on the left side in December of 2012 and on the right side in August of 2014, and I have no troubling, lingering side effects.

I am able to do CrossFit workouts and Olympic Lifting 5-6 days a week, and I was not active at all - like ZERO active points - before my first surgery in 2012, so it's not strictly a result of my fitness level pre-surgery. The actual surgery is tough for a little bit, but after my second one, I was walking 2+ miles a day (VERY SLOWLY) while I was still in the hospital - the nurses kept laughing at me dragging my IV pole back and forth in the halls. I was back at CrossFit (lifting amazingly light weights) by 6 weeks or so, and now, six months later, I can do pull-ups and push-ups and lift more weight than I ever had before surgery.

I certainly understand that some people have far less positive experiences than I have had, but I can remember feeling really overwhelmed and stressed because everything I read online seemed so negative. I hope it brings you some comfort to know that not every experience is bad - I am super happy I had it done. I even have some neat scars to show off now.

Elizabeth, 29, Texas
(Left 1st rib resection, December 2012 - age 27; Right 1st rib resection August 2014, age 29)"

Here's a timeline of my diagnosis/progress:
(At this point I had a pretty lazy lifestyle, did not workout and was out of shape, but my functionality was not really limited)
May 2012 - Blood clot identified in left subclavian vein. Warfarin prescribed.
June 2012 - Angio, Cath delivered TPA and Heparin to break up clot.
December 2012 - Removal of Left First Rib
May 2013 - Off of Warfarin

April 2014 - Began CrossFit (That will be important later ... )
July 2014 - Swelling and Edema associated with overhead lifting
August 2014 - Removal of Right First Rib; begin Xarelto
October 2014 - Back at CrossFit (with embarrassingly small pink weights that I had to buy for myself since the gym had no 2 or 5 pound dumbbells)
November 2014 - Off of Xarelto
Feb 2015 - CrossFit Open - Scaled Workouts
Feb 2016 - CrossFit Open - RX Workouts

Those with mainly VTOS issues will often recover from surgery better & faster than those with NTOS.

Often the saying with NTOS is "the nerve gets very angry" and stays angry ...
The flip side with VTOS is when the compression is removed veins/arteries can recover much quicker.

Of course it also depends on Drs skill & personal recovery times & luck...

my posture is perfect now, and like I said ive seen the best therapist in OC. ive had this condition for 5 years now since I was 23 years old. I was part of Kaiser for awhile and they had no clue what to do with me. I recently had to up my medication because I cant take the pain much more. I have a VERY VERY high pain tolerance (being a x bodybuilder) and I am still working fulltime with my condition but I don't think its healthy. I'm going back to UCLA june 22 2016 for another consultation with gelerbet t tell him to take this **** out of me. I really don't care any more if the surgery fails I'm already almost maxed out on medication and pain. **** if it fails ill just end up where I am at right now and take more medication like whats the point lol. I think the problem with these forms we don't hear about all the good outcomes because people that were cured just say **** it and go on with there life's, but people who are still in pain go online to find a cure and linger on for years. I will keep you guys updated.

I hope you get fixed up and can lift again dude. Best of luck, I understand your frustration completely.