I have alot of symptoms mentioned here.My problems started back in Dec. 2005 when I started getting this crawling sensation from my neck into my head.I had a spell @ work where I thought I was passing out..got shaky,felt like someone shoved a pole in the back of my neck and was turning it(muscle spasm?) and couldn't breathe....said I was having anxiety attacks.

My job was putting a faceplate on a instrument panel(truck dashboard).I was constantly in an arms out position...pushing this panel onto the IP.
Then I later moved to the paint dept.Now am doing alot of overhead work.Recently diagnosed w/ TOS(right side)...going to PT for about 2 months now.
My question is this...I am having 1st rib mobilization(think that's what it is called).The PT jabs her fingers into my neck/shoulder area then pushes into it and dang it hurts!!!Like burning stabbing pain...My eyes water when she does this.She said it will hurt but it has to be done...anyone else have this done?Also she has started traction(only done once,maybe too early to wig out about?) which doesn't really hurt but I have alot of odd feeling in head afterward...like a day afterward.
We do heat,ultra-sound,hand-bike, neck stretches,ball exercises,band exercises,strated doing bow-flex exercises ends w/ stimulation/heat.

My main complaint is horrible headaches,eye pain,and dizziness.I take tylenol for pain.Should I be on an anti-inflammatory?I have flexirils for muscle aches when needed and they help alot,too....

Thanks for reading sorry if it is rambling...just learning about all this.

Hey, i have been suffering with tos for about a year longer than you. I also came to find it was very much a long and winding road, with regards to getting diagnosis and proper treatment. I must say that your physio is really throwing everything at you - and all at once! I have had 3 round of physio with varying results - one massaged me and used acupuncture, not that beneficial. The second tried to strenghen me - of some use but only for short period of time then exercises became painful. The 3rd (current) is good and is trying to get some movement back in my c & t spine and neck - she is taking it slowly as my back basically hasnt moved properly since 2005! She loosened up a jaw joint which has almost made my headahces vanish (fab!).

Basically everything has become so sensitised and the protective mechanism my body set into place to protect me from pain is making things a hell of a lot worse and she is trying to bring me down slowly from all of that.

Have you tried using heat pads?....i swear by them.....

Yeah I feel like she is getting too aggressive but thought maybe I was being a baby.She does ask me if things are too much and I told her she needed to go slower w/ the rib mobilization and she has...TG!!!That burned and hurt.She has me on my stomach and does these massage techniques from my neck down to my mid back now,too.Which is ok.
I really need help w/ how to work on my posture and it is really bad.Heck I feel worse on the weekends when I'm off work..you would think being away from the job would be better but doesn't seem so.
Do you have a hard time breathing?I feel like any activity causes me to feel winded and often after a meal I feel drowsy and winded,too.
I have migraines and my left ear constantly buzzes,and my right eye is larger than the other one bc I guess my TOS is mostly on my right side as I am right handed...
I do use heat packs and am probably going to buy a heating pad.I also ice it.
Another odd thing is my thoughts get jumbled like I am in a fog....could it be arteries being squeezed and less oxygen to brain??My PT says my TOS is not real bad as some other ppl and I am fixable w/o surgery,she believes.....hope she is right.
Thanks for replying and all the help I get would be very appreciated so any suggestions or replies are welcome...THANK YOU!!!!

[QUOTE=crombie00;539469]Yeah I feel like she is getting too aggressive but thought maybe I was being a baby.She does ask me if things are too much and I told her she needed to go slower w/ the rib mobilization and she has...TG!!!That burned and hurt.She has me on my stomach and does these massage techniques from my neck down to my mid back now,too.Which is ok.
I really need help w/ how to work on my posture and it is really bad.Heck I feel worse on the weekends when I'm off work..you would think being away from the job would be better but doesn't seem so.
Do you have a hard time breathing?I feel like any activity causes me to feel winded and often after a meal I feel drowsy and winded,too.
I have migraines and my left ear constantly buzzes,and my right eye is larger than the other one bc I guess my TOS is mostly on my right side as I am right handed...
I do use heat packs and am probably going to buy a heating pad.I also ice it.
Another odd thing is my thoughts get jumbled like I am in a fog....could it be arteries being squeezed and less oxygen to brain??My PT says my TOS is not real bad as some other ppl and I am fixable w/o surgery,she believes.....hope she is right.
Thanks for replying and all the help I get would be very appreciated so any suggestions or replies are welcome...THANK YOU!!!![

It does seem like she is a little aggressive - does she has experience with tos or other complicated upper limb disorders....i think that good tos physios are hard to come by - took me 4 years to find the right one! She understands that everything in me is now oversensitised and that she needs to tread gently - and that looking at my posture is a must - your physio should be looking at your posture and not just poking around and massaging you!

Well i often find that i am better off moving around (as long as im not doing anything arm intense!) - as a pose to sitting down, as i find often find it very hard to get cosy, even with 20 million cushions and wot not! I think many of the guys on here would possibly say a similar thing too.

I do often get winded easily (maybe from the silliest of things, like a quick jog up the stairs!) I find that sometimes its hard to catch a deep breath, if that makes sense. Due to extra pressures put our lungs from some rib involement perhaps??

My physio had an interesting insight into why my memory is getting so bad and why i am often searching for my words - its all to do with long term pain and how our brains get backed up with pain signals....affects our memory in the long term.....nice!!!


Mirgraines seem to go hand in hand with this condition and again with a good physio, they should be able to do some adjustments to certain joints in your face which may be able to relieve some of these......

ps - electric heat pad is my best friend - have it on low to sleep, or i cant sleep!!

[QUOTE=TraceyW;539601]Never thought about how pain can fog your brain up but it does make sense...Yeah she just tells me to tuck my chin,lower my shoulder, and pull my blades together while I'm doing the band exercises....she has never messed w/ my jaw only my neck,shoulder,back area..
I'm not sure what her specialty is but she does alot of sports injuries and I was referred by the Immediate Care Center that was next door to her business.
The shortness of breath is scary and I have become mildly claustraphobic due to fear of smothering...used to never even think about that stuff before!!It sucks!!
Yeah I too have found sitting to be a no-no esp for long periods...and comfort while doing it is hard to find.
Have you ever used a tennis ball to roll under your shoulder blade...read something about that somewhere....if so does it help any in that area?My clavicle hurts quite a bit at times...not sure what to do about that other than heat...and yes heat does seem to help.I'm going to buy a heating pad and was wondering what is the best?My Mom has a good one that vibrates,as well...not sure what brand it is..I'll have to ask her.
Again thanks so much for all you help...it certainly helps w/ the anxiety and worry about all this!!!You all are wonderful!!!!Glad I found this board!!!

[QUOTE=crombie00;540064]
Before i found this forum i felt very confused about tos and even thought that it may all be in my head - until i heard from others with the same or similar stories and a lot of understanding - even that in itself makes it a little more bearable!

i had a physio who had me lie on my front and lift my shoulders up off the coach and push my shoulder blades together - this used to make my shoulder blade wing out as it was too much of an intensive strengthener - i could tolerate it but didnt know how much good it was actually doing me.....sounds like your physio has a similar approach. Perhaps make some enquiries into a seasoned physio who has experience with tos?

i have just had botox into my scalenes - 2 days ago and the area is a little sore still and symptoms not really changed all that much yet but im looking at waiting a week or two before i see any differences, if any at all! The idea is to relax the muscles that run through the brachial plexus. Who know what will happen!

i hve used a ball for shoulder blade discomfort - it helps temporarily for me - any thing gentle like that is worth a try - remember nothing should ever make you hurt more - no pain, no gain - is not a really saying that works with tos.

i live in the uk so what i buy wouldnt be available in the US - what i have has 3 heat settings and a washable cover - invaluable for me!

Hi crombie,
I had the dizziness, not eye pain but weird vision and watery eyes.
For me it was from the vertebral artery getting pinched from muscle spasms and the spasms also pulling on the vertebra caused some issues.

Does your PT mention hard muscles or spasms? Or even triggerpoints?

The focus should get ride of the triggerpoints and spasmed muscles first.
My PTs and chiro used heat, ultra sound, triggerpoint with a slow stretch massage {Myofascial Release}.
What I've read about triggerpoints is - you cannot release or relax a muscle that has a triggerpoint in it.
The TrP must be released first - I was able to reach and work on some of mine myself and used a tennis ball or whatever size fit the best for in my back.
But sometimes you just need a pro to get the tricky ones.
My chiro really helped when he used NIMMO {a type of TRP/deep massage/stretch}techniques on my scalenes & SCM.
Those are near the major neck artery so not really a place to do yourself.

Many here have had a lot of problems with the bands and hand bikes.
those should not even be tried until the pain and symptoms are gone. IMO. Same with any strengthening.

I got down to a 2 on the pain scale before my PTs even mentioned any strengthening at all.
Most of my sx were from multiple RSI's, work postures and sticky fascia, I only had some minor ulnar sx for a few months.
But when we took care of the neck, shoulders & upper back most of my arm & hand sx went away.

Your PT is doing a rib mob diff that the ones I had.

The one I had they placed the whole hand over the top rib and slowly pressed/pushed downward - but maybe because the severe spasms { like locked up}caused my top ribs to pop up and they got stuck up there causing all sorts of extra sx.

My severe spasms made my whole upper body feel like I had a iron vest on, around my ribs, up my neck, across my back.
At the worst of it I had choking feelings , rapid heart beats, feeling like I couldn't breath completely and of course the rock hard muscles.

To tell the truth my chiro was the best help for me, also he uses many PT type modalities - plus upper cervical adjustment & spinal even adjusted my elbow & wrist when needed.

Do you know if you have hyper mobile or lax joints?
that is another reason to be more cautious with strengthening too soon.

for some easy posture stuff I find the sticky post that explains it.

oh and the hurting on the weekends is delayed pain..
When I was still working I would just get feeling better and then back to work started it all over again- an endless cycle until I couldn't recover on the weekends anymore.

useful sticky thread-
http://neurotalk.psychcentral.com/thread84.html

post #1 has condensed list of many links
#18 has saved threads and video links
#26 pec minor syndrome info
#34 has a spinal chart showing relationship to body part/organs

I have already written to you more specifically, with PMs.

But here I'd like to stress that not all neuro TOS or veinous TOS are the same - at all.

Some work with heat for relief, others ice. And in my case, first few years heat felt better, now, ice is much more helpful, so the illness itself changes with time.

Dr. Annest told me that if pulling on the spine felt "good", then my problems might be more disc related. But if traction did nothing or worse, hurt me, then TOS was more indicated.

The problem with neuro TOS is that it is the GENERAL opinion of docs that you can't see (under any imaging) the damaged nerves. (Veinous you can see the blockage. But neuro TOS is swollen, damaged, malfunctioning nerve systems which then may cause more damage to other near-location nerve systems - that's why I believe sometimes legs can hurt, too.) But the docs don't know, unless they're one of our top docs, and even they differ in opinion.

Dr. Brantigan did not want to operate on me because he said that although he saw neuro TOS, he also felt a swelling / immunological response was happening too, and that it just didn't have a name yet. He explained that there are literally hundreds of neurological disease processes that haven't been identified to the point of being given a name, but nevertheless, people suffer.

I do believe that this year, RSD has been my main fight. I fight this by doing small walking, but not over exertion - and having my home aid use "Aspercreme" and feeling and finding these grape sized muscle knots and rubbing them smooth or just gently rubbing the creme onto the muscles, with a point to try to rub them the "right" way to smooth them out.

With this plan, I seem to have a three- to four days of walking, then a flare up, then after a few days, or more, walking again.

If this doesn't sound very optimistic to you, I'd understand. But for me, this is progress.

Finding a good pain mgt. doctor, specifically an anesthesiologist in my opinion, is the most helpful. Although their offices can really get information screwy and cause problems - (thank God for my primary caregiver and boyfriend who spends hours straightening out their mistakes) - my current med program seems to be great FOR NOW. I take Fentanyl patches, as my baseline. Then I have a very small breakthrough pill that I only use if I am in horrific pain. He doesn't give me much, so I have to always use these things in less amounts than I'd like. I know he's trying to keep me at lower doseages to avoid the usual "getting used to the med" and then the meds no good at all. I also have a sleep med, and one for muscle relaxing - because that is a separate problem. I know my body VERY well and use only the least amount.

Since 04 when I first got pain meds (or whenever, maybe it was 03), I have NEVER been high. Topomax scrambled my brains - but that wasn't a high, that was a weird mania which I'd prefer to never experience again. We got rid of that drug, after the first couple of months really getting some great new movement, so it was depressing to see yet another drug not work.

And these drugs are just dealing with the effects of something being broken in the nervous system - they aren't FIXING the problem, and it's always bothered me that I (0ther than the one surgery) am doing nothing to FIX the nerve problem, other than walking, massage, very occasional traction, etc.

I stay alive because I have two adult daughters who I don't want to further disappoint. They saw supermom attorney / judge, now ugly, bedridden mostly, and often unavailable to talk because I'm in too high of pain. They've lost a lot, and unlike someone just getting cancer and dying (like most of my family) this illness just seems to go sooooo slow...what will kill me? Kidney problems from too many meds? Some complication from autonomic neuropathy? (Thank God the breathing problems and digestion problems have calmed down.)

I definitely notice that the nerve systems seem to attack different parts of my body - for several months it will be headaches and neck aches - several months it will be thighs - now it is feet and ankles and hands and forearms. If I talk to a doc about this, they'll either think I'm crazy or just stare. Doctors have been a huge disappointment in this illness. I have learned that unless they can identify and cure you quickly, then they categorize YOU as crazy and a failure of your own. Not very nice, in my book.

I've read many books now written by doctors who got hard to treat or uncurable ortho problems. They start to sound like us. But they ultimately believe they find a cure for themselves, through good ol' hard work at the gym. But our condition is NOT an orthopedic condition. It is a neuro / vascular condition. Sometimes I have to remind docs of this, but they don't make the connect.

The worst of all docs are the emergency room docs. They are very eager to peg you as drug seeking. But if I'm not seeking drugs, that's hard to force...haha, I can see their disappointment in not being able to write (drug seeking.)

So I sound a little skeptical, down and unhappy with the AMA. I am today. I don't know why a male doctor has to feel that he has "failed me" instead of measuring we got these days of "better days" and we're fighting this together...oh well. I am not blaming the doctor for this illness, nor expecting a miracle from them.

To close - our symptoms can be different from eachother, and be careful that some ancillary symptoms can change over years. But go back to the basics - did this start with:

hand pain
loss of use of arm / hand
headaches
pain disrupting sleep
need for more rest

and no other identifiable disease or ortho reason - then it's neuro TOS. (Also taking a look at any accidents or past med history and current work history / duties.)

Support eachother. Put away personal dislikes or issues and ASSUME that we all love eachother, while still keeping some personal stuff private if you've got a work comp, ins. or social security file going. Once in a blue moon we will have a troll who can try to upset us. But our mods are great in helping in that area. Try to meet at least one other TOSer (or more) in person - it is so helpful for optimism.

Thanks for continuing w/ your replies..I really appreciate that.
This week has been bad for me.I have had achy,flu-like symptoms then it felt like I had a kidney stone or had pulled something in my rib/scapula area(left side) now today it is back to mostly achy feeling in my neck and head area..flu-like.I had to cancel my PT appts.The weather has been rainy...maybe that has something to do w/ it.Plus I am also moving so have had to lift some fairly heavy boxes and felt winded.....
Last night I had one of those nightmares where you feel like you are paralysed and I know it is stress and being ill..
I have just stayed bed-bound today and have taken it easy.....hopefully I will feel better tomorrow....
Thanks again!!!

i took a sick day the first in 3 yrs. symptoms were projectile vomiting, achy muscles, & exhaustion. i blamed it on the "flu" but my dad mentioned that "he saw me going down". my theory is after overdoing it and trying to be "super daughter" i got so exhausted that i tried to prop myself up with coffee. i was at the point of collapse when my body just said "call in sick" and then emptied my stomach. anyway, this worked pretty well and i am back being super daughter again. i really don't think it was the flu even tho the symptoms were the same.