Hi I am a 35 year old woman in Portland Oregon. I was in a MVA in 2005 hit on drivers side door, when I was hit I held on to the steering wheel with my right arm and took the impact, whiplash.

Since then I have had a lot of shoulder pain. My doctor at the time checked to see if I had a torn rotator cuff which I did not and basically stopped dealing with me after a few months. A year later I went back, the pain left was all in my shoulder and I also told her at this time my ear was plugged almost all the time (yep my ear has been plugged most of the last 5 years!). Well I have been living with all this since then. It comes and goes in severity but is never gone. I got a new doctor a couple years ago, she is GREAT!

Anyway, my "arm" has been giving me a lot of trouble lately. The pain has returned to an intolerable level. I wake up in the night and literally have to pick my arm up and move it because it is completely numb. Often I happily go to bed and then remember "oh, yeah, my arm is going to go to sleep all night." I wake up and my hand is swollen, not a ton but it's tight when I squeeze it and it's noticeably more puffy. At times my neck gets stiff to where I can hardly move it comfortably and I have shooting pains down my shoulder blade, though this isn't too often. My shoulder blade sometimes feels like it's sticking out just ever so slightly. Laying on my back I always have to adjust for this annoyance. My hands can go numb at any time if they are raised at all and again when I am sleeping. Doing things like helping my 3 year old twins get dressed makes my arms soooo tired. I often have to drop them down a few times to complete a task like this. Typing makes my arms tired and gives me a pinching feeling in my shoulder. My fine motor skills in my right hand have declined. I spend half my morning dropping things, feeling like I have to think about how to hold a pen, stuff like that that just isn't "normal." The strength in my right hand is noticeably weaker, though both arms get tired and go numb and tingle. I have a loss of range of motion in my shoulder and when I tilt my head from side to side, it's very limited too and I can feel my muscles pulls down from my jaw! I am constantly doing stretches to stretch out my chest because it just feel bunched up. I literally joke with people saying...if I could just cut a couple muscles I swear I'd feel better. Maybe it's not a joke! Let me also say, I feel strong, I feel happy, I feel like I can do anything I want, but certain movements remind me my arms weigh a thousand pounds, my hands can't "think" on how to move right. Everyday it happens and each time I "feel" like it's an isolated incident, but it's not. And everyday, all day I have pain in my shoulder, around my neck and lower-back of the head headaches. Much of this I have learned to live with as no diagnosis, what can I do. But things are worsening. My hand not working right kind of freaks me out a little bit lately. This hand thing is new btw, the last 6 months, it's constant and only getting worse actually.

So when I have gone to doctors about this they say it's all unrelated (ear, neck, shoulder...), but I have known in my gut it is. I can FEEL it's all related. So when all these symptoms, progressed to the point where I couldn't ignore it a few months ago, I went to my great new doctor. MRI for shoulder showed tendonitis. She ordered an EMG test to check for carpel tunnel, negative. But the EMG did come back abnormal, nerve damage to my C7 nerve and tricep weakness. neurologist and my doc figured I had a C7 cervical herniated disc, this could make sense but would mean shoulder was a separate issue, again, I just couldn't get on board with this. Cervical MRI shows I am right. My neck has lost it's c curve (spastic muscles to blame likely) but it's not my neck. So now after she talked to a neurosurgeon regarding my cervical MRI he has suggested TOS and an MRI to check, if not further testing for MS. I have done my research on both and for the first time every single symptom rings absolutely true...TOS! I can't pinch my pinky and thumb together as one website stated is a diagnostic test. I lose the pulse in my right arm with certain neck movements another test. All of it. I feel relieved after all these years to be moving towards an answer. I still haven't had it confirmed but this makes so much sense!

So I am not asking anyone to confirm this, again, I don't even feel like I need it. For me at this point it would be like being 9 months pregnant and needing an ultrasound to confirm it! I KNOW this is it.

...But what does it mean? What are the different types (i am sure the various mri's i have had would have shown an extra rib! so i don't think that's it). What does it mean to have TOS, all the explanations for it are so difficult to understand.

Other questions: I also wake up now that it has gotten so bad, and my legs will sometimes be asleep, or my hip feels out of place and it's hard to walk for a bit in the morning. For as long as this has been going on my right big toe has also been numb more often than not. Can this lead to issues with your lower body? Or maybe I just have really bad circulation. Also there have been a few times that my heart has felt very fluttery for about 20 seconds. It doesn't hurt but I feel like I could pass out, and it doesn't feel like anxiety or heart palpitations, it feels very different. I'll totally agree it could one of those things but I have had both of those in the past and it's just not the same. I have to sit down and wait for it to pass, like a butterfly in my chest, not irregular thumping. Makes me nervous. I know this is a vascular thing this TOS so I am just wondering if anyone experiences anything like this, if it could be related. It's happened a few times and it's been when I was on a walk.

Sorry this is so lengthy! Six years of waiting to figure out what the heck has been wrong with me!

Any words, really, any, are appreciated: similarities, stories, advice, treatments...

Go with your gut! I can't tell you how many times Doctors told me my neck, head, arms and shoulders can not be related. Did they ever pick up an anatomy book?

Find a highly skilled PT ASAP. A bonus would be if they are familiar with and have treated TOS. If they hand you therabands or give you strengthening exercises, run for the door. I have found myofascial work to be of great benefit, but your body may respond to another form of therapy. You also need to get any emergency vascular issues ruled out. Yours sound more positional related.

People have gotten a lot of help by propping their arms up at night with pillows. This may help some of your blood flow and numbing problems. Lifting is the one move I try to avoid as it seems to strain every muscle involved. I can move bags of groceries and things of similar weight, but a child would be tough. It's probably close to impossible to avoid lifting your children, but if you can explain to them "mommy is hurt", they may cut you a few breaks.

Meditation and relaxation techniques are helpful as well. It may be a hard to get time to yourself with twin 3 year olds, but if they nap or go to school, use this time for yourself, not to clean the house, do laundry, etc.

Even though it's been 5 years, I don't think it's ever to late to heal. Good luck!

Hello,
Busy morning for me , here's some threads to look thru for more info -
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread84.html

There's been many threads lately on various self helps and therapies on the main TOS thread list page-
http://neurotalk.psychcentral.com/fo...=24&order=desc

Thanks so much for the info!

My only cause for concern right now is being dx. My doctor is ordering the MRI but based on all I have read, doctors do not readily recognize this, even know about it, and even may deny it exists. My doctor is great but I am fearful if this MRI comes back normal she will just figure it's another thing to rule out. I am afraid even with an MRI they may say it is normal, or may not show up based on my positioning. I am sure based on what I have read I do some vascular compression but that is dependent on my position. Is it worth discussing with my doctor prior to make sure that my MRI is done is a way that will really look for TOS? Or do you feel that radiologists and doctors are more aware these days and there is a good standard procedure.

Lastly what kind of doctor/specialist deals with TOS? And if my MRI comes back normal but I want to pursue this, who do you see for all the physical tests to rule this in or out?

If you haven't had a recent MRI or xrays of the c spine it's a good thing even if just to rule out any other causes or anomalies of the bones or ligaments, some even do the T spine or upper T spine along with c spine.

somewhere I read a MRI is only as good as the tech reading the results... sooo...??
and what about a arms up vs arms down at sides??

I'm just guessing you have adhesions and "scar"' tissue in those old injured areas.
Generally most MDs, really don't study this stuff, but maybe you can get a good referral to an advanced PT person/place.
Hopefully a highly skilled & knowledgeable PT that will do some hands on work to loosen those adhesion & any possibly trigger points...

Might be a plus if you can locate some really good PT places then ask dr for the referral to one of them..
NO ROOKIE PTs allowed!! they usually just don't have the in depth knowledge or skills to treat TOS issues for the long run.

I went into some PT places and chatted w/ staff -when they weren't busy of course- but got some good info as well as what Drs might be best for what my issues were. *the dr info was after the fact for me.. but is a good thing to ask about.
I wish I thought of that in the beginning of my injury - the PT places probably do know who might be the best dr to try...


Also posture , posture posture....

but since you can relate back to the whiplash, there has to be some soft tissue problems happening , esp if the upcoming MRI shows nothing obvious going on.

Osteopath and/or physiatrist are my usual suggestions for starters, then maybe a neuro and or vascular if more in depth testing is needed.

But it is really amazing to me how much trouble & symptoms that sticky tissues, adhesions & trigger points can cause for us.

You might tactfully ask your dr about those things or if she knows of someone that does deal with these sort of issues.

MD or PT should do some of those positional/pulse arm tests - just good to have it verified - although a small % of normals have pulse loss also.

I don't have a formal dx by any MD, close to it but 2 PTs and DC agree it is TOS.
I responded to some really good PT and chiropractic as well as self care things I did at home - and started to see good improvements , although it took a couple years.. So I didn't need to focus on a dx anymore.

Sometimes looking for a dx, wastes time that can be spent working to fix the issues...
but basic tests to rule out any obvious causes or concerns is always a good thing...but usually soft tissue stuff won't show up on those kind of tests... that's where the knowledge of a expert PT comes into play, or a DC that has studied these things.

Broke collarbone in massive car accident (as well as other things).
Collarbone didn't heal on its own. Before concluding we'd waited long enough, that arm swelled up and turned BLUE. Like bluejeans blue.
Put collarbone back together with a plate and 8 screws. Arm turned pink again.
Few months later, started noticing transient blueness again. Quickly & easily clearing by moving it.
Month or two later, tried doorway stretch, arm goes numb in less than a minute.
Off to the doctors I go. This was now 13 months ago. Beginning of my trip into the twilight zone.
Blood pressure starts spiking for no good reason.
MRA shows blockage when arm is straight up (yes, talk to doc, have them do it in usual arm at side position, and then straight up over your head). Both artery and vein, very clearly blocked right under collarbone.

But local vascular surgeon says he DOESN'T BELIEVE the MRA, nor the testing showing my pulse disappears when arm is up or back. Sends me to anyone else.
Cardiologist says blood pressure spikes are from blockage when I move my arm the wrong way, causing feedback kicking the rest of my system into overdrive.
Neurologist says, it's definitely not neurological, it's vascular.
Physiatrist says, you need a better vascular dr, go to Yale.

Yale vascular doctor reviews records before my appointment, says I need to see the thoracic surgeon, not him. change appointment.
Thoracic guy says yup, vascular problem, take out rib and scalenes. I say what about scar tissue, I'm KNOWN, PROVEN to make massive keloids inside and out. Yale says wouldn't touch that, just take out rib & scalenes to make lots of room.
Panic at thought. Also, if it's scar tissue causing problem (I can feel I am bound up in shoulder area), doesn't it need fixing also?

blood pressure acting up again. more pills.

Go to Columbia/Presbyterian. Thoracic surgeon says yup, problem. Take out rib, scalenes, scar tissue, rebuild collarbone, install kitchen sink. WAIT! What's wrong with my collarbone, was it fixed wrong? No, we just do that, have a collarbone specialist.
Panic, now sounds like too much going to be done.

Find out about Mass General. Go there. Sounds hopeful. Until I find out about mistakes. And Dr. dumps me. (see post on kyounie's cervical rib thread).
Despair. Almost a year lost.

meanwhile, heart rate now spiking. back to cardiologist. more pills.
meanwhile, previous eye problem reappears (less than 1% have a recurrence). Then it gets worse. Ophthalmologist decides it's vertebral-basilar insufficiency/subclavian steal due to intermittent blockage in shoulder.
dizziness, eye, hearing, balance, all go kaput at times. oh goody. And I lsoe 4 months waiting for Mass. G., only to get dumped, while all this develops.

Go to NYU Langone Vascular Dept. Dr reviews my huge pile of tests & scans, & me. Says it IS scar tissue around artery and vein, as shown in CT scan done in Boston, as well as much other evidence. Says surgery would NOT be recommended, even tho he is a surgeon. Rib & collarbone spacing is fine. Scalenes are not the problem. Scar tissue from damage from accident is.

Says intensive PT with skilled, knowledgeable therapist (not just anyone) is the solution, get scar tissue to loosen up. Is what I have been telling them ALL since the accident, since before this problem got so bad. I can FEEL the scar tissue binding in there.

Finally get name and appointment with a really good PT (have been through so many in the last year and a half who did nothing but "cookbook" routines).

But she reads all my reports & doctor letters. Sees the vertebral-basilar insufficiency stuff. Now she is SCARED of that, of triggering something bad, so she won't touch my shoulder until she talks to a doctor who can give her more info!!!! (Is working on my back, knees, hips, etc that have all been waiting while this whole TOS mess has been happening.) Local doctor didn't manage to call her back yet (a week+ since I gave her the reports), told her probably better to call NYU doctor. Will find out this week if she's been able to get a hold of anyone.

So, I'm STILL waiting for something to happen with this shoulder.

Oh yeah, none of the MRI/MRA's and none but one of the CT scans could show the scar tissue because of the interference of the metal plate on my collarbone. Have been told normally they might, but only if there's enough to show up easily. An ultrasound tech said US wouldn't be able to show what was going on with the bloodvessels/scar tissue because the scar tissue would block the view. HELLO???? We're LOOKING for scar tissue.....so wouldn't having it block further view tell us something????

Quite frankly I think I'd have gotten just as good treatment from reading tea leaves and casting bones and maybe a ouija board. And now I hear the doctors have labelled me a "difficult" patient....

Thanks JoMar, I appreciate that info. I originally wanted an MRI of my shoulder (from the great doc that recently gave me one) because I just envisioned scar tissue.

I have felt for a long time I have had "muscle issues" and it would be no surprise to me if this is just a massive muscle issue, gone out of control, and untreated for too long, until, yes, they are all just too sticky, too rigid. It makes me so mad that much of our body IS muscle but doctors seem to brush over muscle issues as cases of depression (no one has told me that yet, but I think I have just lived with this for so long afraid I would end up labeled as having psychological problems!) My insurance does not pay for PT or massage therapy, so I will be doing lots of in home care for myself most likely. Oh, and I did have a cervical MRI because they thought is was a C7 disc herniation, showed no curve in my neck but no disc herniation either. That's been ruled out which is how TOS came up. And just to be on the safe side I am having blood work done tomorrow. Should be clear, so far it always has been : )

But with some knowledge hopefully I can help lessen this pain and at least not let my symptoms progress even more than they have over the last five years! As I stated an EMG already came back that I had nerve damage and atrophy of my tricep muscle, I really don't want further damage. As far as an official dx, I don't necessarily need that as long I can get the right tx, which my insurance has to pay for, no money for out of pocket costs. That is really my only concern and of course not having to continue to rule things out for several more months rather than start tx. But I have looked up stretches and have already started them.

I can tell you I will continue doing all the things I normally do, TOS or not! I have way too much to live for and way too much to do to focus on this holding me back. I just am excited to have something I can focus on trying to heal. It's hard to heal and think positively when you don't know what the heck is wrong with you in the first place. I will be back when I get word on any tests! I can join the ranks of statistical information for this forum ; ) But the lesson is don't ignore symptoms because they only get worse. I have learned just because one doctor treats you like an idiot it doesn't mean the next one will. If I had continued to pursue this five years ago I probably wouldn't have those darn abnormal EMG results. Right now I am just visualizing a glorious day in the future where I realize what it is like to not be in pain on some level or another! I have no idea what that feels like, but I sure want to : )

If you are into vitamins & supplements - I can suggest a few that might be of help.
A good multi
VitC
Cal/mag blend
MSM
Grape seed extract

If you are interested in homeopathic remedies
arnica montana = is good for muscle pain/soreness
the rest would need to be looked per your symptoms
some of the online sites suggest what is good for each problem but that can be looked at later if you are interested in that approach.

Just don't get too carried away with stretches and adding too many things at first, go slow and easy - start with the basic poses and stretches and if anything flares back off till it calms down.

Sharon Butlers RSI book -or her website articles - explain much about best to see long term pluses. resolving sticky fascia issues is her main focus.
www.selfcare4rsi.com

I'm sorry you've had so many problems, but I appreciate your post as it was epic, awesome and darkly hilarious!