How "Bad" is Your TOS?
 

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.:mad:
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:hug:
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.:confused:
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.:grouphug:

Does ANYONE know of someone who had the NTOS surgery and actually made a full recovery? It seems EVERY thread I can find going as far back as 2004 sees people emerge worse unless they had a true cervical rib or something traumatic.

It seems like the overwhelming majority of people are worse off after going under the knife. How depressing and hopeless.

I remember there was one guy who came on the forum once a year to celebrate his recovery following surgery. Maybe there are some successful outcomes and those people go back to living their lives and don't post on the forum. One would think that we would at least get favorable reports. I agree that the anecdotal evidence is depressing. Folks with cervical ribs, vascular problems or car accidents seem to have better outcomes. Those of us with chronic, neurogenic symptoms don't seem to do well with surgery.

When I started this 8 years ago, doctors talked about 1/3 improving, 1/3 staying the same and 1/3 getting worse following surgery. Then about 5 years ago I started hearing success rates of 85% quoted by doctors. I haven't seen research to substantiate that change.

To answer your questions, I have bilateral TOS. I had surgery on my left side, which is my worst side. I am much worse than I was when I had surgery. Luckily, I am right handed so I can use my dominant side.

I was fortunate enough to have worked for my employer long enough to qualify for a disability retirement and I also receive SSDI. I know not everyone is as fortunate.

I certainly understand you are trying your best and dancing as fast as you can. I wish you had more options.

Take care,
Kelly