[sharradog]

hi everyone
I have been reading the forums and honestly feeling a bit depressed about this whole condition, looking for some help and moral support!

My history:
Car accident at 16, I was passenger (seatbelt across r shoulder), and did lots of yoga but always "tight" in the thoracic spine area/shoulder on R.
October 2009 took a job with lots of laptop computer work (I'm a veterinarian so typically had an active job with little desk work)
January 2010 had pain in R. shoulder, very focal, went to PT
PT noticed tight neck, started aggressive traction, nerve glides etc. After on manipulation/treamtent where she added a "dural stretch" I woke up in severe neck pain.
April 2010 - paid out of pocket for MRI of neck - no abnormalities but on pressing they found a small disk at T1-T2.
August 2010 contrast MRI - normal flow but when I looked at the images the artery looked compressed so asked for second opinon - was told that it was "artifact"
August 2010 - Acupuncture - helped a lot but never eliminated the pain
October 2010 - had been improving, had a partial thyroidectomy for a (now we know benign) tumour and due to surgical positioning flared up my symptoms
Feb 2011 - new family doc, discussed case, had spoken with dr in US who suggested dynamic CT so new family doc sent me.
March 2011 - Dynamic CT- 60-70% compression of subclavian in the hands up position
April 2011 - contrast MRI waiting for results

My pain is bad at the moment, but it had been getting better until the thyroidectomy, then a bit better, until just recently started again. I can't seem to figure out what causes the "flare ups." but I have started going again to PT to a PT who is very gentle and does "visceral release" and some "energy" stuff so not sure if that is what is flaring it up, and whether I should expect some pain if she is realigning my nerves or posture or whatever.

My pain is mostly at the back of my skull, into my R shoulder and along the back of my R shoulder, sometimes my left, and my sternum. When really bad I get a pulling/tingling feeling in my sternum across my chest up the front of my neck. It sounds like others on here have much worse symptoms.

I am confused, I have people telling me not to have surgery, it will make it worse, and others saying I need to have a first rib resection. Of course this is all my own research - I did have an EMG which was essentially normal and saw a neurosurgeon who said I wasn't surgical (this was before the CT) and that emboli from arterial TOS is as "rare as hen's teeth". When I asked him about the pain he shrugged his shoulders and told me to take painkillers.

I'm not sure what to do, whether to keep going with PT, consider surgery, or what to do. There does not seem to be anyone in my area (Calgary) who I have found that has a lot of experience with TOS.
Anyone on here from Calgary or Western Canada that has a good doctor/surgeon?
Do I need surgery if my compression is simply positional (when I pull my arm back)?
Should I be asking for lyrica? My friend with MS gave me some but I am worried to try it. I keep just waiting for the pain to get better and wonder if it will. I used to be very active, rock climbing, mountain biking, hiking etc and I'm sad to think my active days are over.
Thanks!
Caroline

[Jomar]

Hello,
This part makes me think it could be a raised top rib/ spasms in the SCM/Scalenes - (When really bad I get a pulling/tingling feeling in my sternum across my chest up the front of my neck. ).

my spasms had pulled the top rib up and they got stuck like that for a couple months before we figured it out. The adv PT guy found that and instantly dropped them down, it was heavenly. I shared that with chiro and now he checks it every time, and now I can usually tell when it is going out..

Have you read about trigger points and myofascial restrictions?

our sticky threads are full of good info of all sorts, near the top of the main TOS forum page. useful sticky post #1 has many links on alternative therapies.

I found an advanced PT and a really good chiro that have helped me a lot.
Chiro uses LLLT, IF stim, ultrasound, Nimmo (similar to manual triggerpoint work), adjustments (hyper mobile), and the upper cervical adjustment too (c1 c2/ atlas axis).
he also adjusts my elbows, shoulder, top rib as needed.

I'll probably think of more but want to get this posted while you are online...oh rats I took to long and missed you..

Did you have any specific injury in the car accident?

If not you could be having mainly myofascial restrictions and Sharon Butlers book (in libraries) or website will give you some good ideas, I used her TOS program, and still do quite often when things start to flare. www.selfcare4rsi.com

another thought on the PT , they don't have to know about TOS specifically, but they should have advanced training and be open to learning how best to do your PT according to how you respond.
The standard cookie cutter PT protocol doesn't really help us at all.

do you get delayed pain?
hyper mobile?

reducing pain levels before implementing any strengthening

Posture, posture , posture.. no head forward and no shoulders hunched, rolled or slumped...

My pulse still gets stopped when arm are up for 30 sec or so, but that is workable.
but not to good for climbing or some bike styles.

my profile page album -check out the Health info pics http://neurotalk.psychcentral.com/album.php?albumid=422

[Jomar]

Oh and none of this is a fast fix, but with time, awareness and good care, it often can be turned around.
I was soo messed up with my RSI/TOS I couldn't hardly wipe my you know what for awhile.

But approx 2.5 yrs later with a lot of self care, DC & PT and a few gadgets at home (EMS stim , far infrared heating pad, tennis balls for TrP work, inflatable exercise ball & foam roll, not to mention the wrist wraps, elbow pads, magnets...).

Some of my recovery time was wasted due to work comp rules & delays, I actually got the most help on my own anyway..
and I didn't know anything about TOS at first - drs & I just thought I kept having various RSI re injuries, due to years of repetitive assembly work and my dumb drive to be the fastest...

I'd guess about a year was wasted, if I knew then what i know now, I could have recovered much faster.
But I still have myofascial restriction symptoms at times and the weather affects how I feel a lot too.

[sharradog]

Thanks for the quick reply. My PT has taken extra courses on visceral release and is very knowledgeable about fascia, she thinks my deep fascia has a lot to do with what is going on. Hard to know when someone really knows what they are talking about.
Your point is interesting about the top rib - I looked at my CT pictures and it is quite evident that the space between my R. Clavicle and top rib is about 20% of the distance of the left side, I thought it would be my clavicle, but raising of the top rib makes sense too. I am trying to do light scalene stretches, but it seems that the more i get "done" the worse I get, maybe trying too hard. My current PT is very gentle so hoping that is helping, this latest flare came soon after my last MRI where I was in the tube with arms up for 10 minutes so that could certainly be the cause.
I have read some of the sticky things that you mentioned but obviously have to go back through.
YOu have given me a bit of hope at least, I'm working hard on posture, although the more I try to put myself into "normal" posture the more it hurts, so I wonder if my nerves are contracted or so used to being in an abnormal position there is some adjustment happening.
I am not sure what you mean by delayed pain, but I don't usually get pain immediately after something, it usually comes on out of the blue, maybe 3 or 4 days or even a week after an event that I might think was the trigger.
Will do your reading, what pain meds have helped (if you can say on this forum). Aleve, ibuprofen do nothng, T3s help about 50% but the gastrointestinal side effects are bad for me.
No specific injury in the car accident except a laceration to my leg, but I was seeing blurred vision right after and blowing blood clots from my nose for a few days so must have had some kind of injury to my head. It was a long time ago (I'm not 16 anymore - 39 this year)
I have considered going to a chiro but never have been to one before usually preferring physio but the trick seems to be finding someone who knows about this condition.
Will start reading the sticky notes on alternative therapy.
Thanks a lot
Caroline

[Jomar]

I got dumped on my head at age 15 from my horse, he bolted into an electric fence when I was riding him. The wire broke loose but came back and coiled around us, so he bucked and I flew off head first.

I think it played a part in my rsi and now TOS.

[Jomar]

Finally getting some nice weather here so had to go out and enjoy it.

Mention the top rib thing and she should be able to do a maneuver to see if it will drop or mobilize it, is another term for it.
And if so , it may pop up again mine did a few times and still does a bit if I do too much that strains the area .

we often get in a hurry and try to stretch or such too much and end up feeling let down by our actions, baby steps will get you farther in the long run. be gentle with your self. just a hint of a stretch is what to aim for.

I haven't used much for pain , medication wise.
Other than at first when I was still trying to keep working, took too many Ibuprofen then , so when I was put off work by dr, I stopped that stuff.
My pain level was only up to a 6/7 and affecting my sleep during the very worst time I took vicodin then mainly so I could sleep at night.
I tend to do more the alternative stuff , I've used homeopathic remedies like arnica, and a few others, magnets, MSM, grape seed extract, Calcium/magnesium, vit c.

I don't have direct nerve pain, but more indirect nerve symptoms and as well as the minor blood flow on/off due to certain arm positions.

you can use the forum search tool to find more on specific terms - there's a search for all of our forums or on the main thread page for TOS there is a search this forum tool.
http://neurotalk.psychcentral.com/fo...to_forumsearch

Sometimes weekends are a little slower with replies , esp when the weather is getting nicer, I'm sure others will post soon.

[sharradog]

Thanks again, I did go for an EMG which was normal and the neuro guy doing it felt that I had mostly myofascial symptoms as opposed to neurological symptoms - but not sure why I get the very dull ache at the base of my skull all the time.
I was also dumped a few times on a horse - not on my head though! Once on my sacrum and once in front of a jump - the horse decided I needed to do that one on my own. I don't think I landed on my head but I definitely did a somersault somehow and landed sitting up. At my age, after being active, I could probably think of a dozen injuries that could have contributed....?!
This forum is a great place, thanks for the help. I know what you mean about the nice weather, we are snow free for the first time since November up here! I was out trying to garden - I know I have to be careful but sometimes it helps to keep my mind off things.
I purchased Sharon Butler's book yesterday so starting today by listening to the audio - husband took the kids out for the day!
Caroline