NTOS sugery postive outcome?
 

I am a 27 year old male with bilateral core NTOS from bad posture and weight training diagnosed from Gilerbet at UCLA. Has anyone has a first rib resection with good results. I just saw him and he said that he has had no nerve injuries and 30% of the time the patient gets 100 % relief and 90% of the time they get good results. I Have bilateral arm and LEG pain lol. please share your story.

You can do a search for NTOS surgery.
http://neurotalk.psychcentral.com/search.php
Most post op for NTOS that have posted here have had mixed /poor outcomes with surgery. The nerve gets very angry and some develop internal scar tissue that can become a problem later on..

Questions..
How long have you had symptoms?
How long for the leg pain? Are you hips & shoulders uneven? If so find a really good chiro first..Any head injuries/whiplash ever? check out - www.upcspine.com
Have you had some expert PT , worked on posture & addressed any possible misalignments (expert chiro)?
PT/DC won't fix things overnight , unless there might be some major misalignment causing trouble..
If there's any chance you can seek out some expert healing PT/DC that is my suggestion..
Most of us suggest avoiding surgery if you can..

I'm sure many do ok with surgery, but they don't post here much at all.
Some pro athletes can go back to the sport, but if you read the team injury reports they often don't last long at it..
When it does go bad post op, not a lot of options left other than meds..

What Jo*mar said. All these percentages need to be qualified with a grain of salt.

You are in the PT capital of the US. Try the Edgelow protocol to control your flares and work from there..

Hi,
What are your symptoms in legs? I have bilateral ntos and leg issues .I get cold feets , twitching and some odd sensations in my feet.


Regards
Ramdas

If your cervical/lumbar MRI screen was ok, then its most likely your arched lower back causing issues. Try a relax position everyday, feet propped up on pillows so arch in back reduces.

If you bulked up neck muscles with the weight training , those can crowd & pinch nerves too. Especially if the neck/shoulder/head posture makes for a smaller area also..

It can be a space problem , all the nerves & the bloom flow need to go thru quite a small area, things happen and it gets too closed off.

Success stories do not go onto forums and post. It is the sad truth. Most people who browse on this site are still looking for answers and are still in pain to some degree.

This is true but it is also true that Physician's success rates are absolute garbage. They will consider it a success if nothing goes wrong during the surgery. They will not take into account what happens after the surgery. I was written off by the doctor who did my TOS surgery and I am pretty sure they lumped me into the "success" category. So far it has been the exact opposite of success and I was way better off before the surgery. Different people scar at different rates. They will tell you that they use this polysorb surgiwrap around your nerves during the surgery to prevent scarring. They used this on me and my post op MRI still shows scarring on the nerve roots, trunks, and cords of the brachial plexus. MRIs normally don't even pick up scar tissue on the scan unless there is a significant amount meaning the polysorb surgiwrap was ineffective in my case.

Are you eligible to have the scar tissue removed? Would you ever do that? Or is it just not worth the risk?

They don't want to open me back up seeing as how the first operation went. If they go in again and take more scar tissue out, the body will just react like it did the first time and plant down even more scar tissue causing more problems. There is a reason only a handful of doctors perform this surgery regularly throughout the country. They used to do this operation a whole lot more several years ago but most physicians stopped doing it altogether because of all the complications. It is a very tricky surgery that takes more than 5 hours to complete.

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.

It's not always bad!
 

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" :eek: 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.

i'm probably a horrible candidate for surgery but my first rib moves around too much

my complaints are pinching, 24/7 paresthesias, and fatigue in both arms, no more ..fireworks, shooting pains etc. i used to get them but not anymore. i would never consider surgery if i were that flared up because im terrified of CRPS. getting any type of surgery when you're nerves are on fire just seems like a bad idea and it sounds like a lot of people do. it's risky.

i'm curious, can you get tos surgery without clipping ANY muscles? my scalenes do NOT spasm. my pec minor is hypertrophied from holding my shoulders up but that's it. i'd never clip my pec minor because then my arm would fall off my body :)

I just had my first rib removed at UCLA dr gelabert. surgery wasn't bad not even that painful I'm a male with a high pain tolerance. my symptoms are still there on the left side. my shoulder feels lighter and maybe its in the right place now idk, but I still have the ****ing pin and needles. I guess it takes time for the nerve to heal ive had this thing for 5 years now..... i have full mobility and str... just no relief in pain and that y i got the surgery in the first place... **** it at least i tried

ohh yea that is 2 weeks post op lol i had my surgery 8/25/16. I'm going back to work 2 weeks after my surgery its better if I'm moving around and talking to people than sitting on my *** at home doing nothing with no circulation.

Did you ever get relief from the nerve pain? I had surgery two months ago and I still am suffering and worrying it did not fix it. I hope you are feeling better.

No relief from pain 3 weeks post op

Hi, I have leg pain too. I get random zips of electrical currents zipping through my legs in random places. Pre-op, I had a square (literally a square shape) on the back side of my left scalp that would "fall asleep" all tingling and everything, but in just this one little spot, it was soooo weird. The scalp thing has gone away, but the leg spasms/twitches are still present.

I would try getting treated with botox injections of the anterior scalene and possibly the middle scalene and pec minor if appropriate along with 6 months of PT before considering surgery. Dr. Donahue is a fantastic surgeron, Dr. Pearl has a very good reputation. If you are going to have surgery, you should go to one of the top specialists, really.