[sassycasady]

Hello all, My name is Carla and I have recently been diagnosed with TOS. My hardest part about this is dealing with the pain and trying to get my Dr. to listen to me and hear the pain I have. It is so frustrating, the Dr. only gives pain meds if you have surgery, but I'm not bad enough to need surgery.So what do I do? I don't know where else to turn,no one understands when I try to explain it,they just say "Get a new Dr. or just ask him for pain Meds" if they only knew how hard it is to get your Dr. to listen to you let alone understand you.I'm sick&tired of not sleeping due to pain,driving in pain, doing my daily things with the pain. I hope someone out there can help me figure out how to get my Dr. to listen to me, and stop sending me for MRI's or EMGs.I have been off work since the 28th of Sept.

[astern]

Hi Carla, welcome to the Forum. I'm sorry this is happening to you.

So your Dr has sent you for tests (EMG's etc.) what were the results of the tests? Odds are this Dr has no clue on how to treat TOS - is he the one who diagnossed you? If you still have pain and PT has not helped (caution: most PT can make it worse!!) he should be referring you to a Dr who can adequately treat your pain and get you the right PT to help get you back to some level of functioning.

Do you have the extra ribs? Was there an accident/injury to cause this? We will need some more details to guide you. I'm sure others will have LOADS of helpful info for you. Do search this forum - you will learn a lot.

Anne

[Bi-Coastal]

Hi Carla,

I have the same questions Astern has. You NEED those tests and possibly many more to not only diagnose TOS, but what kind of TOS and why.

Is this Doc a specialist or your general practicioner? How were you diagnosed? There is too much information missing in your post to really understand what you need.

Most physicians do not like to prescribe RX for pain because there are lots of people out there who just want the drugs. However, if you have been diagnosed, then you will need to be seeing more than one specialist and certainly will need a pain specialist to evaluate you for both pain issues and depression.

It is a frustrating and time-consuming process under the best of circumstances. TOS mimics so many other potential problems, which must be ruled out.

If you have an initial diagnosis of TOS, then there is going to be a series of specialists who will have to weigh in. Is your Doc not referring you to anyone? If not, YOU will have to take the bull by the horns and use our list of specialists to find someone in your area for advice.

I hope you can offer some more information, as many here will want to help you out. In the meantime, Tamara, DiMarie and several others, have posted extensive and in-depth information on the mechanics of TOS, the standard testing program, and several web-sites with lots of diagrams and so forth to help you understand what is going on.

Often the most important issue is to find a specialist who understands what is going on with you and can guide you toward treatment and pain control.

PT (specialized for TOS), is usually the first course unless you have cervical ribs. This is a long, slow proceedure. Try not to be too frustrated.

It took me 11 months and 8 doctors before I heard the word TOS and my complaints began to be taken seriously. Even then, the Docs are cautious and many tests were required before I was aggressively treated for pain.

Do let us know more.

Warmly,
Anne

[Jomar]

Here's our useful sticky thread link-
http://neurotalk.psychcentral.com/thread84.html
it has tons of links, saved posts, articles, testing info - great for a crash course in TOS.

and our Drs & PT list thread -
http://neurotalk.psychcentral.com/thread135.html

[KLS2007]

I'm sorry to hear that Carla....I'm in exactly the same situation about the pain meds. My doctor just doesn't seem to understand that I am in a lot of pain & won't prescribe me anything for pain other than Elavil. If you finally get your doctor to listen be sure to tell me how you did it!!!!

[finz]

Carla and KLS,

Some docs just don't get it. I know that I had trouble being assertive trying to get some relief. It's kind of a catch 22 though.....being too direct and asking for meds can be seen as a drug seeking behavior. I was more comfortable taking someone with me to "demand something be done" It took my husband saying "the only way she can be out of bed is to be in a high backed chair with an ice pack on to control the pain and our family can't function like this any longer" to get some results.....which was a referral to another doc, then another, then another until we finally found someone who gets it. Of course, frequently changing docs is another drug seeking behavior, but it's also the behavior of someone who is still in pain !

Hang in there, but don't rest (as if you could ) until you find a doctor who wants to help.

[tshadow]

Originally Posted by sassycasady

Hello all, My name is Carla and I have recently been diagnosed with TOS.

My hardest part about this is dealing with the pain and trying to get my Dr. to listen to me and hear the pain I have. It is so frustrating, the Dr. only gives pain meds if you have surgery, but I'm not bad enough to need surgery.So what do I do? .

What you need is for your doctor to have a talk and understand that pain management is important for chronic pain cases so that we do not go bonkers and go off and run down the street naked, screaming, with a gun!!!hahaha.....

Seriously, it is the pain management doc's sole job to choose your meds and help you with them. That's all. And you can find these docs rather easily once you know they exist. Ask by word of mouth - say "I HAVE A CHRONIC, SEVERE PAIN CONDITION." That should do it. Most pain mgts. must be a proper referral from your primary doc, and be preauthorized by insurance. These processes are important if you are doing work comp. ALso, of great importance, to each new doc you should make and copy a complete set of your meds regarding this illness and give each new doc a FULL set so that they can have your history and their med reports will be IRON CLAD!!!

Here's also what I used to write about TOS just in caseyou haven't already read it.

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 who 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 stop using the computer and at any cost, PLEASE get voice software. Dragon naturally speaking is what I use. Just the pose at the computer, called “the gargoyle” pose, can trigger neurogenic TOS symptoms to flare.

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, because if you look at how you spend your time, this is where / what you probably do the most if you are working full-time, 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. And do NOT take anyone’s advice on this, ONLY an experienced, good, work comp attorney and the consult should absolutely cost nothing – FREE. No matter what, please get to an attorney to know your rights, and also, to know what you are RESPONSIBLE for also! There are time-sensitive forms, etc. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

[flippnout]

T shadow you are so helpful thanks and have a good new year......