Curious for those with primarily NTOS - on a scale of 1-10 how bad does your pain get? A 1 being a mild, barely noticeable discomfort and a 10 being pain so bad you need fentanyl patches and you contemplate suicide.

All seriousness too, what are you absolutely NOT able to do. I realize there is discomfort but does anyone have symptoms so bad they are utterly and truly disabled? Or is it just pain while doing activities?

Anyone have true muscle wasting or atrophy?

I have had some pretty bad days where I'm in great discomfort but something tells me I "ain't seen nothing yet." I have avoided drugs and pain killers (for now) and hope to stay that way if possible. Not a pill seeker though it seems like doctors like to offer them constantly.

I have to keep working so quitting is not an option. Have to find a way to persevere but growing more discouraged as my pain increases slowly each day. Have been doing everything to improve posture and stretches but can't seem to make a dent in the symptoms with any consistency.

Yeah I agree. What is it with doctors throwing pills at you? They love to do that even though they haven't even bothered to througherly investigate symptoms.
I just seem to **** them off because I am so adamant that I wish to keep trying to be medication free. I go no stronger than ibuprofen and even that is only when I'm about to lose the plot.
I feel as though they just want to drug me up to shut me up!
My discomfort is triggered by over exertion, just general everyday activities like washing up, cleaning, reaching for stuff,walking and even just being upright all day puts a strain on my neck muscles etc...... it doesn't take too much nowadays to drain me. One thing that I do NOT do now is heavy lifting. I'd honestly say at times I can rate pain 1 but then all of a sudden it will creep in from nowhere to a 5 and if I continue to ignore the signs than bang its a 10 and I'd just want to lie down to rest my neck/shoulders and try to stop everything going into spasms which results in headaches.
I struggle most during the night..... sleep is not too good for me as I often wake up from dead hands which have to be shaken out or my neck gets caught up in an awkward position and to top it all pulsatile tinnitus which I can hear 24/7 since I had my first rib excision op ( A/VTOS) on my right side.
The quietness of night is now no longer restful...... whoosh, whoosh, whoosh I get as I'm trying to sleep. I've began saying the Om Mani Padme Hum mantra to the rhymic pulse that I hear, just to keep focused on something else.... my version of counting sheep I guess.
Its a frustrating health issue as sometimes I feel absolutely fine, great even but then I return to activities and in it creeps again and I can't even contemplate getting up the next morning. My body just doesn't seem to get refreshed after a nights sleep and I often feel worse for trying to rest.
I do mourn the loss of my painfree life but I am desperately trying hard to adjust and come to terms with living with limitations. This even includes going to see a councellor tomorrow to discuss CBT. I can't allow the changes in my body also change my mind.
I tell others to keep strong and that is exactly what I have to do too.
I going to ask the councellor if she can find me a pain management group or relevant contacts that may be helpful like Meditation or yoga classes. Unfortunately my doctors are quite dismissive and I now find it very disheartening going to them.
Take care
SD38

are you doing any back strengthening excersizes?

Have experimented with strengthening yes, not sure what flares me and what doesn't. Seems I have a delayed reaction and I won't know what causes what. Anyone have constant pain at >5 or 6? Or is the consensus that the pain is more intermittent ?

ughh I remember those days, weeks, months well about about 2 yrs actually ..of feeling almost OK then as soon as I did a little something extra , back came the pain/symptoms...

good old delayed pain....takes time to figure that one out....

I stopped taking IB when I finally was written off work and got started on PT, when it could actually do me some good, instead of working & going to PT and back to work.. Just couldn't get ahead of anything that way...
Workers comp & their "rules" I probably could have recovered much better & faster if the rules didn't clog up the works...

But then again I only started looking online for more info when my recovery got stalled, we/MDs were still thinking some kind, or a mix of RSI problems, not TOS as I didn't even know about it til later. Found the info myself as no MD or PT said anything about it, they were still focused on my elbows, hands & arms only and didn't tie it to my previous shoulder/upper back injuries..

my pain level didn't go over a 5-6 at the worst time - that's what I consider interfering w/ sleep levels.
Not long after that was when I found the chiro that helped me so much with alignment, TrPs & the severe spasms. And I had found sites & forums with so much info.

I will add that the first MD I went to for my injury was my primary, she also did general blood work and put me on Lipitor due to high cholesterol levels (240) - this may have played a part in some of my symptoms.
Although I didn't feel the "flu like" effects that usually used as a description, so I really don't know for sure.

I had also read on natural websites about statins and problems from them about the same time I found the good chiro - I went off the Lipitor.
So who knows it may have been a part of it or not.

I am on daily medication and still have constant pain in the 5-10 range. I take opioids daily though the amount varies depending upon my pain levels.

I think I could do most things once -- though I agree about not lifting heavy things. If I cook, use the computer, write, drive, clean the house (anything that involves repetitive arms movements) my pain and headache will spike. So I limit all of those activities and have weeks at a time when I don't do them or use my arms only minimally.

I'm really sorry to hear that your symptoms are increasing. I know the middle of the worst recession in 70 years isn't a good time to ask, but is another line of work an option? It would be the worst of all worlds if you stuck with computers only to have to stop working completely if your symptoms get too bad. That's what happened to me.

Good luck,
Kelly

That's rough. So sorry Kelly. I believe you said you were made worse after surgery - is that right? Did you have both sides done, or just the one? If you don't mind my asking - how do you afford to live or how do you take care of yourself? Quitting for me is not an option right now, unless I want to lose my home, my marriage, etc. Wish there was a way I could keep symptoms at bay - it's not for lack of trying.

I think that is the worse of things..... the coming to terms of living with limitations. I not quite there yet and having abit of a mental battle with myself accepting it. Hope CBT helps to get me in a more positive place.
Best wishes to you all.

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.

Hi there,
like you I have a REAL issue with both my hands going numb ( seriously dead and floppy like with total loss of sensation) at night.
I see that you use ICE for relief, do you use this also during the night????
Out of all my symptoms this is the one that bothers me the most!!!!!!
Its bad enough dealing with aches etc during the day but the hands going to sleep stopping you going to sleep is awful.
I Like reading your attitude about being med free.... I'm desperately working to stay this way too. Obviously at times there is no getting away from them but on the whole I truely believe its a slippery road to go down. I think it can end up messing with your pain receptors where the body gets to the stage where it can no longer tolerate any pain levels.
Deep breathing and ways to distract are what I'm working hard at..... just hope it contines to work.
Interesting post, thanks.
From SD38 - V/ATOS and now some return of NTOS post op!!!!!