Originally Posted by BLNTOS

This response is to the thread "how bad is my TOS"

I have NTOS that was misdiagnosed dating back to 2006. After seeing countless specialists and one failed surgery under the misdiagnosis of nerve entrapment in the forearm, the true diagnosis of NTOS was made in 2010....yet this was after years worth of damage already done, failed PT and surgery under misdiagnosis. Repetitive strain injury/work related. I've been told I will be disabled, that it's too late for pt and surgery will be my only option...however...conflicting MD opinions report surgery would make me worse. This is how I was from 2006 to 2010 and what I'm battling my way out of now - My pain can go well over a 10 ( worst case - burning, numb, like I have clamps on my arms, pins/needles, and unable to move them away from my side or up/lift etc ) Sleeping doesn't really happen, both arms go numb, at times I sleep on ice just to get relief. When Pt started for my true diagnosis (FeldinKris pt) after almost 2 years I can now move my arms a bit more and keep my pain at a 7 or 8 on R, 5 or 6 on L.

I refuse pain killers/sleeping pills as I want a treatment cure not a mask for pain and living in a daze. One MD told me his tx plan was neuro meds and that'd be the best he could do for me. I started out working through this prior to my true diagnosis, my pt's told me I would not get better if I didn't take time off work for tx. Even with time off from work for tx, the best I've seen in pt tx has been intense Feldenkrais for going on almost 2 yrs now of weekly tx... my pain can now fluctuate from 7,8,9,, and I'm thankful if it gets down to a 5 on my dominant right side. I still use my L for main daily living things which has increased my symptoms in L, yet I'm thankful it can stay at a 5. I'm R. dominate, I've take 2 hours to type this for you as I'm not able to type without pain... and daily living tasks are slow, never pain free, driving doesn't happen much nor does lifting, or normal things.

Best advice - don't allow yourself to think that you 'need' to continue working during your treatment period - if you do - you need to realize you're progressing yourself into increase pain. With neurogenic TOS your nervous system needs to get to a relaxing state, you should only be starting to work again when you're a very low/pain free level. If you don't want to live like this for the rest of your life, take this seriously because you have a better chance now at getting past this then you will if you continue to work and make yourself worse. If I could go back, I would have quit my job. I'd gladly live on a lesser income while getting treatment to have a chance at full recovery so I could have a better chance at living pain free like I was before. This has been a nightmare - yes the kind that has had me wishing I were dead at times - yet not to be doom and gloom as my mind doesn't believe that way - I believe in God and hope for the best and seek to focus on the positives.

For the first several years of this, prior to my true diagnosis I had NO pain free days from 2009 to late 2010... now...thanks to on going over 2 yrs worth of Feldinkris there may be a few hours in a day during the week that I can get down to a 5 and breath long enough to feel thankful I'm not at a 10 constantly like I once was.

My Best Advice
-Focus on deep breathing - Google the 4,7,8 and train yourself to do it a several times a day.
-Stop working or find another job changing the strain on your body ( ergo evals by themselves are garbage - you have to remember - just changing a desk situation/computer or work environment will not change the way you have slowly trained your body into poor postural positions because of the pain and you need to 're-learn' body positions as you change your body structure ) And if you're not in a desk job - you still need to find a job that's not repeating the same movements that led you to TOS
-Focus on stretching and posture
-Sleep with pillows under arms for support
-Don't take pills - pain killers or otherwise - the doctors will try and get you to as a way to make their job easier - find a doctor that won't push that on you. I would say that if your sleep gets very bad, periodic sleeping pills that are not addictive will help. If you're unable to relax in sleep your nervous system will not learn to reset itself to a restful state.
-Try Water Therapy - I haven't yet - yet due to the weight free methods of exercise and retraining movement I've read this may help.
-Research top TOS docs in your area... get more than 3 opinions. I've seen over 17 doctors.... it wasn't until my last few that I found two that wouldn't push meds and actually told me I did the right thing by not taking meds. -Deal with the pain cognitively - pray - take a bath - do anything else... just know you won't know if you're truly getting better if you're on those things when you're in treatment.
-Don't let anyone tell you it's in your head - it's not - this is the MD excuse for "I don't know" and "I don't want to tell you that I don't know"
-You must change the way you eat, stay away from surgar and white flout/carbs as much as possible - the reason as part NTOS involves the lymphatic system and the cellular system needs to be free of 'gunk' as my pt puts it. Drink lots of water.
-ICE has become my best friend at increase levels of burning pain
-Do your best to not stop living - keep walking, doing things through the pain, just modify to the best of your ability. But we must learn how/what to modify in daily living/work etc.


The reality is the medical community still does not know enough about TOS, treatment or success/failure rates of surgeries for all kinds of TOS... especially neurogenic TOS. More recently those who have an extra rib - surgeons have found that even resection of the extra rib may not be necessary - I don't have an extra rib and had one surgeon tell me he'd remove part of rib anyway to prevent scar tissue from attaching to it - while another told me, it's not necessary when the surgery is done correctly - nice? Also, the top TOS surgeon ( major Metro ) in my area has advised me that he has just recently ( over the past 5 years ) stopped taking out the extra rib - as he found the result in surgeries was such that it wasn't necessary. The failure can come in when scar tissue reattaches or wasn't completely removed during the scalene ectomey surgery.
-Have your doc do a scalene block / cordisone injection into the scalene for the best diagnostic of NTOS.
-Don't bother with botox injections - not a cure, just a way to decrease pain for a time and come with their own set back
-if all of your nerve tests/studies come back neg - it doesn't mean you don't have TOS - it just means you're not at your worst possible state yet

My pt has told me, removing the scalene's will cause more physical deficits/pain/physical issues in the neck/shoulder area - that will cause an entirely new problem making it even worse. She bases this off of treating patients with TOS who have had their ribs removed.

There is no 'win-win'... Find another job before it gets worse... trust me you won't want to live like this. Do your best to find a MD you can trust and a surgeon who can show you research - and his work - talk to their patients and find out what the true outcomes are if you're told you need surgery.

Try PT Feldinkris - for more than the average recommended time frame - NTOS that persists has longer treatment periods - upwards of over 1 year...more typically 2, 3 and if you're blessed...maybe even 4 years to have a somewhat normal life back.