[dianna]

Hi everyone. I am new to this site. I was just diagnosed with TOS by a vascular surgeon. I hope I can get some answers here.

First off, is a vascular surgeon the best dr. to make the diagnosis? This is so complicated. He is the only Dr. who said he is sure I have TOS. The rest say maybe. Sound familiar? Should I get another opinion from a neurosurgeon? My Spine surgeon says I have TOS aspects, but he's not convinced it is TOS

I am an ultrasound technologist, and have been having numbness/tingling 4th and 5th digits for 4 years. After the 1st year, I injured myself at work, which resulted in an anular tear. Nine months of doctor appts and diagnostic studies, spine surgery and lots of pain later, I recovered for about three months. My current list of symptoms include: clavicle soreness and pain, scapula pain, left arm and hand burning sensation, numbness 4th and 5th digits. THings like driving, drying my hair, typing, and doing laundry have become a difficult chore.

I plan on 6 months TOS-targeted physical therapy. Before I decide about surgery can anyone give me advice on the success rate after the surgery? Is it worth it, or do I have as good a chance going with physical therapy?

I look forward to reading your stories. I hope you can help.

Thanks, glad to be here.

[phoebe]

Welcome to our forum. You have definitely come to the right place for lots of information, and people that have all different kinds of TOS and of varying severity. There is a wealth of knowledge here, and nice people too.

Yes, a vascular surgeon is definitely a good person with whom to begin your TOS journey. There are people here that have neurogenic tos and vascular (either arterial or venous). There are some particularly interesting tidbits of information in the Sticky Threads at the top of the main TOS page.

Good luck to you and Welcome again. phoebe

[Jomar]

Hi Dianna,
For starters I'll post our useful sticky thread links- in case you haven't found them yet.
Useful Links -
http://neurotalk.psychcentral.com/showthread.php?t=84
and from post #20 in the useful links= links to our polls-
TOS surgery & results
http://neurotalk.psychcentral.com/sh...5990#post85990
how did you get TOS?
http://neurotalk.psychcentral.com/sh...highlight=poll
TOS Surgery and therapy info
http://neurotalk.psychcentral.com/sh...highlight=poll
Surgical, Injections or Conservative: Unsuccessful only please
http://neurotalk.psychcentral.com/po...ults&pollid=30


Docs & PTs listings-
http://neurotalk.psychcentral.com/showthread.php?t=135

[tshadow]

Hi!

I am sorry you've gotten this diagnosis. When I first looked up TOS, and realized it must be what I have, I cried pretty hard. But that's 4 1/2 years ago, and I grew to accept it, and learn all about it. Here's what I put together regarding TOS. Maybe it will help you.

Anyways, we all do welcome you. I'm in So. CA, and we get together in person once in awhile.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS to rule these out, then you might have missed an obvious tumor, etc., but it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

[Sea Pines 50]

hi, dianna

i heartily welcome you to our little family on the TOS forum here at neurotalk. in answer to your question, yes, i think you will find out rather quickly in fact, that you will get waaaay too much information here about that TOS dx. miles to go before you sleep, poor child.

bottom line? if you read carefully (look at the stickies and watch for links posted to the threads themselves at times also) you will end up with a lot more questions than answers, dianna.

but they will be the right questions to ask the people on your tx team as you carefully put that bunch together (and it DOES take a team). most of the mistakes in the world, get made because the wrong question is being asked.

you're in the medical profession and clearly there's a lot that does not need to be spelled out for you here. but one thing i do want to say to you, and that is that you will need to keep an open mind, because there are many preconceived notions and a great deal of outright prejudice where TOS is concerned. all of it does a great disservice to the suffering patient, in my experience.

that orthopedic surgeon you mention might be one example. not convinced, you say? could that be because TOS is not an orthopedic problem, per se, and s/he simply does not have the direct clinical experience with TOS to confirm or rule out the dx in your case, never having encountered another one like it? or is this person, perhaps, somewhat of a skeptic, or maybe just maybe we're looking at sour grapes! - this dx would mean losing your business, for one thing. TOS is not a profit center for orthopedic surgeons, i think we can all agree on that. it affects a lot of systems in the human body, but the spine isn't one of them (generally correctable by TOS surgery at any rate). so hmmmmm. oh, well! not your job to convince anyone, would be my thing. move on; you have more important things to do.

OK - to be fair, it can be rather hard to distinguish between actual neurogenic TOS sx and "TOS-like" sx caused by, say, cervical ridiculopathy. but there is another distinct possibility here that you should be aware of, i'm afraid, and that is the possibility that this surgeon does not believe that TOS even exists in the first place! don't personally understand that stance, myself - these people generally believe in nerve entrapment disorders like carpal tunnel syndrome, cubital tunnel syndrome and so forth but somehow have themselves convinced that neither nerve nor blood vessel entrapment can take place in the thoracic outlet. go figure, dianna. get back to me on that one! (i'm just kidding.) now, i'm not saying that's the case here, because obviously i don't know - but i have personally encountered these nonbelievers and that "wall of nonbelief" delayed my own TOS dx by i don't even want to tell you how many years (and i don't have the so-called "disputed" form of neurogenic TOS, dianna, i have true neurogenic TOS [!], replete with hand atrophy). so, beware, is all i am saying.

i mean no disrespect to any of your treating physicians, but it's not uncommon for the landscape to change a bit once we get the TOS dx. if it makes sense (the ortho would be off my team, or at the very least benched for the season!). and if it helps, a vascular surgeon is the right type of specialist to make this dx for you. and, personally, i do not see the need for a second opinion at this juncture, dianna. most of the top TOS docs are vascular guys (one chick, at johns hopkins, ya know she's gotta be excellent, right?) maybe it's just me, but i don't think you'd be here if you weren't pretty sure in your heart of hearts that the vascular surgeon is correct. TOS can and does mimic a whole host of other diagnoses. that's part of the monster, all right.

but the dx, once you get it, IF it's accurate...sure explains one heck of a lot. am i right? what diagnostic tests and procedures have you had done thus far? i think you're good for now (unless W/C tries to fight the TOS dx and forces your hand, which is entirely possible...). your sx certainly resonate with me, and i hate to tell you that, for this is not a fun dx to have, nor an easy one to tx. but i do like that the rx is to try PT for 6 months, that sounds absolutely like the right next thing to me...

ah, but therein lies the rub. this is the hard part and also t.h.e. key. v e r y few PT's have the right type of training to know how to work with a TOS patient, dianna. in this country i think it's less than 10%. somewhere i have a list of the questions you're going to want to ask before you sign up with any PT, but for now i can think of one very good one (and it is in tam's post too): do you use the 'edgelow protocol?' it's sort of a trick question, if you will, to let you know if the facility you're dealing with even has a clue who peter edgelow is...(you can google him and find out more or perhaps there's a link attached to his name up in the sticky - he's located in northern CA, up in hayward, sells a TOS kit, a mini-kit, or you can purchase items piecemeal, call medical dynamics in santa rosa, CA @ 1.800.945.0302 to order his stuff if you're interested). there are other TOS PT protocols besides edgelow which are quite good, certainly, and ways to approach this, like hellerwork, feldenkrais, any type of postural or bodywork combined with PT/OT would be good - but the latter must needs be TOS-savvy; can't emphasize that enough. the wrong kind of PT or OT can not only NOT help a TOS'er, it can be extremely DESTRUCTIVE.

we call it "shake and bake," dianna. it should be all about core stabilization for those deep neck flexors, breathing exercises, releasing and rebalancing the dread scalene/subclavius/pec minor muscles at first.... before you move on to strengthening the mid-traps and rhomboids, learning gentle nerve glides, etc. nothing should cause you pain or make you more symptomatic. NOTHING SHOULD CAUSE YOU PAIN OR MAKE YOU MORE SYMPTOMATIC. we typically don't do well with "traditional" devices like weights, therabands, traction, UBM's, rowing machines, etc. exercise great care here (pun intended). ultrasound, TENs unit, moist heatpacks, coldpacks, all good. to tolerance.

what part of the country are you located in? do you have a good PM doc? that might be a good next step for you, i think - and could also be a great way to find the right physical terrorist. oops i mean therapist.

anyway, welcome to you. i look forward to getting to know you better. i'm sure you're aware there's a W/C forum on the neurotalk board for issues related to the legal aspects as they come up.

happy reading!

alison

[Jomar]

That's what I was going to add in my first reply.
Be sure any PT you go to is very advanced and an expert at what they do -and for sure NOT a rookie!

Overall posture comes into play
proper and gentle stretching
if there is pain, spasms or triggerpoints those need to be resolved & released first before any kind of strengthening is even attempted.

This all depends on where your pain levels are on avg too.
Do you get delayed pain? hours or a day after certain activities?

[dianna]

WOW Thanks. I feel so loved! And, not alone! Thank you all for your information.

It is hard for me to type, so, I have to keep things short.

Sea Pines 50....I agree witht the ortho thing, his PA didnt even hold my arms in the correct position to get the absence of flow. And the doc seemed to classify the TOS patients to painters and army people. However, he seemed supportive when I got the diagnosis from the vascular doctor. Thanks, I do feel better about my vascular doc now. I think I would like to get another opinion from a neuro doc.

Tshadow....thank you so much for the testing info! That really helped.

I have had normal EMG/Never Conduction Study, normal CX, MRI shows herniation at c4-c5, not touching the cord yet. Previous surgery appears healed. I had an abnormal vascular study, that said I did not have TOS, but a stenosis. My vascular guy disagreed. That was last year, before surgery so I will ask to repeat it now. The 3D MRA sounds like a blast! We will see.

Oh, I live in Georgia. Anybody got any referrals? PT and docs.

[dianna]

Originally Posted by jo55

That's what I was going to add in my first reply.
Be sure any PT your go to is very advanced and an expert at what they do -and for sure NOT a rookie!

Overall posture comes into play
proper and gentle stretching
if there is pain, spasms or triggerpoints those need to be resolved & released first before any kind of strengthening is even attempted.

This all depends on where your pain levels are on avg too.
Do you get delayed pain? hours or a day after certain activities?

Yes, I get delayed pain! That drives me nuts! And sometimes, it is even the next day. I will use the PT my vascular surgeon recommends.

So, massage first, stretch second, and strenght last?

Thanks.

[beth]

Hi dianna,

Yes, hold off on the strength training til your nerves are calmed down and pain is much lower. Slow and steady is KEY. Which is hard because we've concluded many of us were type A's before TOS came along. But there is no fast recovery from this.

In addition to the PT advice which I totally agree with, I would also urge you to take things VERY easy otherwise. Pace yourself throughout the day. Take breaks when doing things around the house. Let others do the heavy lifting and carrying. Don't overdo things on a good day.

There are a few things that have been found to be helpful - warm baths or showers to start/end the day, add epsom salts to bathwater for achy muscles, BioFreeze or Sombra pain cream helps numb painful spots, keep pillows under your arms when sitting, prop books on pillows when reading, when walking tuck hands in pockets or stick thumb through belt loop to keep arms elevated. Avoid repetitive tasks, arrange kitchen cupboards so most oftenly used items are in easy reach, not overhead, use Corelle not heavy stoneware, try to limit your computer time, or at least take a break every 20 minutes or so to walk around, stretch, gently shake out fingers and arms.
Watch your posture! Shoulders back and relaxed, chin back, head straight over your shoulders.

Be gentle with your body. TOS is not something to take lightly, believe me!

All the best,
beth