[Missa]

Okay, so I've looked into Dr's in my area who specialize in TOS and have found a Vascular group in my area.

My question to all of you:

Should I go ahead and make an appt. with them even though my Dr. has not referred me yet? As I said before, I am seeing a pain management specialist on Thursday for the first time and just wondered if they will do the same procedures that the vascular group will in diagnosing TOS? Therefore, will making the appt be pointless?

Also, if I'm not even sure it is TOS, should I make the appt anyway?

[momzpeachy]

Hi Missa

I have been dealing with this TOS for a year now and having surgery on Monday the 14th. I went through so many Doctor's and so many tests (that were unnecessary). I found a vascular surgeon on my own and so glad I did. He did an exam and no doubt agreed with the TOS diagnosis but then referred me to a PT who can determine if surgery was necessary. It was determined. I am too far gone for any help but the surgeon did refer me to a pain management Doctor...well he told me I needed one. I have been going through this without the appropriate management, care and MEDS! Actually...NO MEDS! I searched on my own and found a pain doctor near me who I luckilly got an emergency appt due to my surgery being scheduled. She was shocked to hear I was never referred to her or any other pain doc. She could've done so many tests/procedures. If you have a good pain doc...they should be able to perform tests that would diagnose the TOS. Also, they can find what works and what doesn't work. My pain doc said "I am a classic TOS patient" and have a "severe case which no doubt requires surgery". She said she wishes she could've seen me 6 months ago and been in charge...maybe then surgery could've been avoided.

I am allergic to almost everything but she is helping to find meds that work. Honestly, I would start with the pain doc and see what he/she has to say. Also..try to get the TOS diagnosis before seeing a vascular doctor. Most Vascular groups are surgeons and they won't do testing. They just do surgery. They will most likely refer you to a PT and/or pain doc. The pain doc can rule everything out and get you the proper diagnosis. Mine told me that TOS is actually overdiagnosed in many patients. They have many tests that can acurately diagnose you. I would try there first and see what they say.

Good Luck!

Momz

[astern]

Missa, you can call the Vascular Dr's office and ask them if you need a referral or not. Sometimes it's not necessary but it all depends on the Dr's office OR your Insurance. Can't hurt to call and ask!

[Missa]

Thanks a bunch momzpeachy! I will skip making the appt. with the vascular group as of right now. Hopefully my appt. tomorrow with pain management goes well! (as in, they start taking some steps to figure this thing out!)

Good luck with your surgery! I'm sorry to hear that you are now too far gone and surgery is the only option. I hope it goes well!

And hopefully, if it is TOS that I have, I hope and pray they catch it quick enough!!

[Missa]

Astern, luckily, with my insurance, I don't need referrals to see anyone. How great is that?! But as I said above, as of right now I am going to stick with the pain management and see how they can help me. Thanks!!

[Bi-Coastal]

I can only speak to my experience, and don't know how universal this type of testing is. But this is it.

My Thoracic/Cardiovascular Surgeon, performed:

1. vascular testing, supervised my PT, sent me for X-rays and MRI.. and referred me to:

2. A Rheumatologist (blood tests) and soft-tissue evaluation.

3. A Pain physician who performed EMG, SSEP and any other neurological testing. Also began anti-depressants as he could see that freight train coming at me. (Thank God)

4. An Anesthesiologist for nerve blocks.

It is true that even physicians who specialize in TOS, are often hesitant to catogorically diagnose TOS until the appropriate test results are completed, in each area. The exception might be in the case of cervical ribs, for example.

Each physician concluded I was a strong 'surgical candidate'. However, I cannot stress strongly enough, EACH ONE of them made clear to me that in my case, being a surgical candidate does not mean surgery will be helpful and it could possibly result in many more, less controllable, serious issues. Also, if scar tissue is a problem, surgery could set you up for a lifetime of repeated risky proceedures.

Be certain to have multiple opinions, usually insurance requires this anyway.

I was sent to a team of Neurologists at Johns-Hopkins by an attorney. They performed repeat and additional 'controversial' testing on me..NOT fun and potentially dangerous. But they have their studies to publish you know..got to make names for themselves.

They, in their innate arrogance, were the ONLY 'specialists' who recommended multiple major surgeries, but of course could not predict if any of that would help me in the least.

Every single other specialist strongly advised me against surgery.

The pain physician should be able to refer you to others based on their examination and testing. Either way, you will eventually want to be seen by vascular specialists to rule in/out that potential aspect of TOS.

It sounds as though you will be fine waiting such a short time to be seen by the Pain Doc first.

Warmly,
Anne

[JAMY]

Just wanted to sat to momzpeachy that I hear what you are going through...I was given nothing for pain prior to my surgery despite the repeated recommendation from EVERY specialist I saw that I needed to have my pain managed medically. I am nearly 10 months post-op and NOW just getting to see a pain management doc...

[tshadow]

Originally Posted by Missa

Okay, so I've looked into Dr's in my area who specialize in TOS and have found a Vascular group in my area.

My question to all of you:

Should I go ahead and make an appt. with them even though my Dr. has not referred me yet? As I said before, I am seeing a pain management specialist on Thursday for the first time and just wondered if they will do the same procedures that the vascular group will in diagnosing TOS? Therefore, will making the appt be pointless?

Also, if I'm not even sure it is TOS, should I make the appt anyway?

We have here a list of doctors who are there because one of us, or some of us, have seen him/her and they KNOW TOS. Most doctors, no matter what specialty, know TOS, and even less know neurogenic TOS. A few docs know to look for vascular TOS, and docs who say they know TOS, after they give me the usual med-school description, (which sounds more like ortho shoulder problems), clearly reflect to me that they DON'T know TOS. So finding a knowledgeable doctor is a BIG problem for us.

I do NOT think TOS is OVER-diagnosed. My proof is that during my first year and half of being sick, I went to an ortho hand specialist as my primary doc. As I used to wait in my cubicle, to see the doctor, I'd hear him talking to other women (they just happened to all be women) who were telling him the SAME symptoms I was having, and he was saying, "uh, gee, I just don't know." And they'd ask him intelligent questions, about why PT was hurting them, or why after carpal tunnel did they have worse symptoms, and symptoms of loss of use of hand, headaches, fatigue...and he was as dumb as a ROCK about it all...now I can see that they had TOS like I did, and that it was from our jobs at long hours of computing...(I'd hear them talking about their problems with their computer use at the job.) So no, I don't think TOS is OVER diagnosed at all, and in fact, I bet there are more people stuck with TOS who are being pushed around by doctors, or disbelieved, or called "drug seeking", when in fact, they have developed neuro TOS and are suffering.

I will post my usual post here about what you need to have tested, and why.

Testing is VERY important, because IF you have some OTHER EASIER reason for your symptoms, TOS is the LAST thing you want to have.

I personally think the vascular doctors in Denver, Annest, Brantigan, Sanders, and Ahn in LA, and Togut in Penn., are your BEST ways to get a diagnosis for sure. These docs do NOT do unnecessary surgery. In fact, Brantigan refused to do surgery for me, because he felt the RSD and possible rheumy disease would impede any recovery. Annest DID do surgery on me, because he and I agreed that even 10% improvement was worth it for me, and because I was willing to risk the surgery with rampant RSD. And surgery did take away all headaches for about a year, and same for RSD, although both are now back, and my TOS is progressing...I did have a "brain swelling" feeling that is just now starting to come back - but that's now been two years of a break.

So surgery was worth it for me.

[tshadow]

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.