what doc can I see to move forward???
 

:confused: I have seen a neuro doc who said nothing is wrong with me. My symptoms come and go though and were not there when he tested me. Now they are worse and I really want someone who knows what I have to look at me. My chiro and PT have both said it is TOS. My arms and shoulders hurt like heck if I work over my head. I have rib pain and arm pain and numbness. It feels like there is a rubber band connecting my neck and chest muscle that just pulls every which way and snaps. I used to have shaking fits where my body would shake for 10 minutes too. At times I feel like my pulse stops and blood is not flowing correctly.

What kind of doctor can help????????? Is there a thoracic specialist?

Thanks so much.

add on:
 

Also: From time to time it causes pains in my head. Cold pains usually. I had an mri and every other test under the sun.

The PT and chiro are the only ones who have helped and diagnosed me.

Muscle relaxers and hot baths help the most for some strange reason?

Some expert PT & Chiro were the main ones to dx/help me also.

Sometimes a DO may be of help, a phsyiatrist {sp?}{rehab dr}
or even just a more knowledgeable MD /Neuro, a bodyworker {Feldenkrais or Alexander types}

But unless you use a TOS pro you have to do a lot of searching and asking questions to find a good Dr.

Did you find our drs list sticky?
http://neurotalk.psychcentral.com/showthread.php?t=135

Where do you live? Maybe someone hear knows of a doc in your area. you might find a different neurologist who can diax and treat your TOS. Not all neurologists know about this condition. What about a physiatrist? Check other lists to see if there is anyone in your area. Try tellmeaboutTOS.com or others you may find on the stickies on top of the posts.

This brings up a question I am having. I have seen a local surgeon who does diax TOS but there aren't any other TOS drs I've found in my area. (No, the surgeon doesn't have anyone he can refer me to; I've asked.) No doctors on this good list or on anything else I've seen. I am looking for suggestions on how to find someone to help me with meds and follow up care. I also need a PT and possibly a Physiatrist. Not to mention that I am in a hurry. any ideas??

Hi thunder
 

Hi,

I posted in your introduce yourself thread and put a bit about this...glad you made your own thread!!

Welcome!

As for thoracic yes Vascular surgeons are usually the consults....so try for one. there is a post on the top of the forum with docs in each state so try to find one close to you and see what you come up with.

a good neurologist would have ordered an emg to see if you are having nerve issues....sounds both muscular, vascular and nerological......just my two cents.

oh tos`ers---- are you asking why thoracic outlet
if this is your question it is due to the area that is usually compressing the vessels and nerves causing the syndrome. The area is also know as the brachial plexus. It is the area just under your clavicle -collar bone and up to your neck is the origin and it goes under the clavicle
Check out the attachement.

Hope some of this helps.
Victoria

thanks all
 

I live in albuquerque and there are no doctors here from that list. Maybe I will go to denver or phoenix. I'm just tired of living with it. I had the nerve tests done by the neuro doc. One were he listened to my muscles and one where he shocked me and tested the current. I am also thinking of trying another physical therapist. Just frustrating that no one can show me a xray etc... and say "this is what is causing this." But I'm sure most are in the same boat.

Thanks for your help :)

unless you have some bony anomalies or a extra cervical rib - nothing in regards to TOS will show on xray and usually not on a standard MRI either.
- but it is good to get those pictures, to be sure the extra rib or a cervical spine injury isn't a culprit.

thank you both
 

Gibbrn, I saw that the muscle relaxers and hot baths help you a lot too. Why do you think this is? Do the docs know yet? How long have you been like that?

Thanks for the advise. Going back to doctor wednesday to see if he can refer me to someone.

Fun Tests!
 

Thunder92 Fun tests huh! As many, I have more tests than I can count! EMG and mylogram are the BEST!! I don't think they do mylograms anymore. Maybe they realized just plain old painful!

I hope you find a doctor in your area who can help you. I have been VERY lucky but I live on the east coast so can't help with any referral. Just keep posting here and let everyone know how you are doing. Everyone does care.

Linda

hi thunder
 

Please try going to a vascular surgeon that specializes in TOS. It will save you alot of time and money in the long run.
You need a definite diagnosis.
I live in Ohio and had to fly to Denver twice. Drained my IRA to do this but oh well.:eek:

TOS= muscles spasm of scalenes and many surrounding muscles....you likely have some amount of dystonia as well.

When the nerve is compromised, the muscles tense up to form a protective sheath around the nerve...hence: muscle spasm.

that is why muscle relaxers and hot baths help.

There are also several good doctors here in LA, if that is easier travel than denver.

You can get the Sharon Butler book on TOS, it is a good starting point for exercises that may help your TOS if not progressed too far.

Good luck,
Johanna

I should have posted the useful sticky links for you also-
http://neurotalk.psychcentral.com/showthread.php?t=84

all sorts of great links there, TOS sites, therapies, alternative health, bodywork - plus some of our Polls and saved articles.

I have a Far infrared heating pad on my recliner most of the time- so in the evenings while relaxing I can just turn it on to ease the tight upper back muscles, or if my lower back is bothering me I just slide it down for that area.

Supposedly far infrared heat penetrates deeper into the tissues than regular heating pads and has greater benefit for cell function too.
{links about it in the useful sticky}

thunder, why not go to sorehand (see it in stickies) and do a search for NM. see if a PT or neuro or massage person or anyone comes up with a good referral in your area. You might also want to think about ordering self help PT programs. 2 that I would recommend are Sharon Butler's TOS program that you can order online (see stickies) and Peter Edgelow's program. His comes with a video tape so that you can watch him teach you the exercises. Sharon's pgm is different from her book and has a progression of exercises that will take you through a long process. The book is good too but the the exercise program is current and very specific to TOS.


Still, I am having a hard time finding anyone local to manage my TOS and wonder if that is your case too. Although I can travel to Denver to see a surgeon I would like to have some doctor in my home town to act as my case manager, write scripts, find me a PT... Maybe a neurologist or a physiatrist. I am just out of ideas how to find someone here. I saw a local surgeon here and although he does TOS surgery he has no names for PTs, neuros, etc. If anyone can think of ANY suggestions please let me know!:confused:

heating pad's importance
 

well mine died yesterday :eek:and had to go out with dh and get a new one....:p It is so nice and it is always in my chair too Jo.....I had a laugh when reading your post......

I really can't live without it...first thing I do in am ( I do one other thing first.p o t t y ) but then b'fst is taken on the heating pad!!!!

and Epsom salts in the bath are great as they remove lactic acid from your muscles and it is great for your skin and if your tub is deep enough...it will help you float if you put enough in....I use about a cup or 2 and add some lavender essential oil about 30 drops and maybe some patchouli as it is good for eczema.....sorry tangent......but I do love a good bath and practically live in my half hour shower and LOVE the massage head for my back and neck so I sit to shave my legs and let the massage do it;s work...and while I clean the tub too......lol.....

k enough now I guess.

love and hugs,
Victoria:hug:

Far infrared heating pad-sounds great but it is so expensive I cannot afford it. :(

OK, I went to a vascular thoracis doctor yesterday
 

This is the guy I should have seen a long time ago. He did all kinds of tests and had me put arms over head and tested pulse etc.... He said 1 of my arteries is being pressed on somewhere affecting my left arm. Probably muscular related since muscle relaxers and heat help. Most likely in my neck since the ultrasound on my shoulder/thoracic area showed nothing. So tired of tests showing nothing! At least he confirmed a little bit for me. Just recommended some exercises and said maybe one day it will show it self off more. Funny because I felt horrible in the waiting room and had trouble breathing. I felt fine during the tests. But most of the tests are kinda of stretches. When I stretch out it does feel a little better at times. Anyway, he had me make a fist and put his fingers on the 2 veins going into my palm. Then let go of 1 and the blood returned to my hand. Then did the other vein which showed irregular since the blood didn't return to my hand. Meaning an artery or vein is being pushed on somewhere. Wish I knew where or how to fix it. I'm assume at the same place a nerve is in there. When I stretch over an exercise ball it feels like something is kinked up in my back and in my arm. Like plucking a guitar string and I get numb. Ok, Enough about me :)

Anyway, thought I would update.

He didn't suggest any kind of PT or anything?? GGR:( {my opinion}

Have you found Sharon Butlers RSI book in the library??
or check her website
www.selfcare4rsi.com
she explains about how tissues can become sticky and impinge on blood flow and/or nerves - some of her simple stretches may really be what you can use to make some improvements.
Her key word is "gentle" stretches baby steps - just a hint of a stretch is all you need to do but many times a day and gradually you will see positives.

It's something simple to do at home and only the cost of her book ,or a library card or her website program {29.95??}
she posts occasionally on the sore hand listserver and her older posts are in the archives there.
You can also do a forum search here on her name- we have some good threads/posts about her program/stretches.

well, if there IS no good PT, it won't help anyhow...but feldenkrais, hellerwork, and myofascial release massage are good choices.

sometimes you can find feldenkrais practitioners who are alos PT's, and you can get it covered with insurance,
check out www.feldenkrais.com i think...

PT etc...
 

I already go to pt and I did buy Bulters book. Honestly lately dare I say it, it has been better (knock on wood). I've been really stretching, including a hurting low back and neck. Sitting in the hottub a lot and bought a cheap little heating pad that is great.

He did recommend another couple stretches also.

He was a good doctor I can tell you. That is a compliment coming from me :)

We should add him to the stickies.

Doctor Ready in Albuquerque NM.

Testing That I Did
 

Sometimes people are lucky and get a diagnosis right away, and sometimes it takes maybe 10 or more docs to get one. The problem is that TOS is rare, and we may be the FIRST case a doctor has ever seen. That is why it is BEST to go straight to one of the top docs we all have gotten together and already seen, especially, especially for surgery.

Here's what I used to post all of the time:

I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet 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 as a whole. 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 to rule out MS or other copycat conditions.

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.

These are not the only tests either, btw.