hi, jane,

i'm so sorry you're having such a hard time right now. i think part of what's going on with you, if you don't mind me being so bold, is that maybe you are coming to the terms with the sad realization that you may not be able to return to the profession you trained so long for, worked so hard at for so many years...and were i'm sure, so very good at!

TOS takes so much from us, on so many levels. what i hear in between the lines of your posts is pure grief. you are a W/C case, if i'm not mistaken, and this is a work-related injury for you. keep very careful records. are you seeing a pain psychologist to help you through this? i think that might be very helpful for you, jane. just something to think about. and there is absolutely no shame or stigma attached to it, i want you to hear that loud and clear. now, it would probably need to be "approved" or whatever by your primary W/C doc, i would think, but maybe the referral would be better coming from your PM doc or even your PT (that PT sounds like someone that's willing to work with you, do research on your behalf and that is awesome, jane!). i hope this doesn't offend you in any way, it applies to a lot of us. TOS'ers tend to be workaholics - take away our ability to function in the workplace and you've got some very unhappy type A personalities on your hands, people! think about it.

the EMG/NCV isn't likely to show much in the way of TOS, i'm afraid. most of us come back "normal" on those studies, with 2 major exceptions. if there has been EXTENSIVE damage and you're a very advanced case, a regular EMG/NCV might show some abnormalities. or, if they are using the evoked potential technology to test all the way up across the brachial plexus to the C-8 and T-1 spinal nerves to look specifically for TOS, then that might show something. the so-called SSEP test.

dimarie sometimes posts about this and is much more knowledgable than i about the reasons why. but in a nutshell, i think that TOS affects the smaller sensory nerves first, and it's the larger motor nerves that get tested in these clunky basic electrodx studies. so unless you are having the SSEP done, don't expect to get a TOS-specific result. what they ARE useful for, however, is ruling other stuff out or in in your case, like carpal tunnel syndrome or cubital tunnel syndrome, or even setting the stage for dread "double-" or even "triple-crush" stuff. i have that. we are all vulnerable to it, once the ulnar nerve is damaged at the BP level. if you take a look at dr. fried's site at http://nervepain.com there might be more info there for you, or PM dimarie or perhaps she'll take the bait and chime in on this thread (mommy? are you reading this? come home, all is forgiven!)

anyway, keep taking good care of yourself, hair....oops i mean jane !

this, too, shall pass.

alison

p.s. the MRI of the neck won't show much either... it's no big deal. search tshadow's thread on testing for TOS - she goes into a lot of detail about some of the hoops they have us jump through (not to say your docs will order each of the tests listed, by any means!). it's all a process of ruling out other stuff, mostly. some day hopefully there will be an AFFIRMATIVE diagnostic test for TOS, but we're not there yet except in the rare case of C-ribs or something like that; even then it can be touch and go. the dx is fraught with controversy. W/C will fight it to the bitter end. just keep doing what you're doing - you take care of YOU and let your lawyer worry about the legalities.

Hi Jane, Hi to everyone !!!!
Jane, I to have had ALOT of problems with Arterial TOS. I have been fighting to stay alive financially for 3 years now. My neck is a big problem and I too have the throat thing. MRA'S seem to be one of better test with dye to see the compressions. I had 4 EMG tests(neg. results on all ) and 8 MRI"S since 04(neg. except the neck) until I learned here on the forum about MRA'S and MRV'S. I suggested it to my doc in Boston and it showed Subclavian compressions in the neck and at the Brachial Plexus. Along with DDD (Degenaritve disk disease )

Unfortunately my doc is non-surgical and can't do more. I went to see a Thoracic Surgeon yesterday and he said that I do have TOS but wants a venology (?) and a new MRA. I have tried for disability and got denied at the ALJ level. Now I am filing a new claim !!(after 3 years of fighting). The reason I want to say all this is because WE all have been there and it downright **** s to have fight for everything. I know and feel what you feel. This is THE BEST PLACE to be tho so, Keep on fighting , finding new Dr's, keeping a pain diary is also helpful too !

As far as your dealing with the pain posting is good because these people here can help I think better than some of the Dr's I have gone to see ! I always get new info here ! Take care of yourself and again HI EVERYONE !!

Dolfinz

You guys are great, I will bring up this stuff with pt tomorrow, and I will read some more links this evening. What is one to do.Honestly, I feel like giving up but really how can you? You guys aren't going to belive this one?LOL you probably will.Remember Christmas time wc cut me off my lyrica, well these are some meds the pm doctor put me on after being in the wc pain clinic. Well I am in appeals right now, because they cut me off the first of March. I went to the pharmacey today and not 1 of my 4 meds is being covered???I am ok for now but if its not straightened out soon???I went for my IME 3 wks ago and while waiting for the gabapentine approval, IME doctor said he would look after getting it approved, and he did, no problem last month. I then went to the pharmacey today and there is nothing being covered????? By the way I didn't cash that cheque yet!!! I am so mad right now and at the same time I would like to cry.If I have to go and stand in front of wc building I think I will. I am fet up. A big sign board...
Thanks so much for being there, to all. You really don't know how much your support and friendship means to me, hopefully I can get some proper medical care soon....

Alison you do a good job, with the nerves, and Dr Frieds site...
I am battleing a bit with this bronchitis and fever so I have to take a break, but the info is good for all.

jane if you can search gypsymom2go had information on how she filled meds while waiting for the w/c. When De had that situation she had secondary coverage that paid....then the w/c had to pay back.

If you still do not get your meds covered PM, I will research for information for you later.
Di

Hi

I don't post much but sometimes I just have a few things to add. I've read your posts and replys here and for the life of me I can't remember if you've had surgery for TOS or not? In one post you mentioned "surgeries" so I am not sure.
I just wanted to say that I too had lots of pain before my rib resection, which caused my blood pressure to go sky high, emergency room visits and everything. The first time the doc there said I just was not being given enough meds to control the pain. I was seeing my PC physician every few weeks for toradol shots, plus 2 loritabs a day. So the ER doc gave me a script for Demoral...needless to say I held onto that like it was gold-only for high high pain.
Well I've gotten way off track now, but I wanted to add that there was a very knowledgeable PT guy I had that was able to bring my ribs down. It helped a lot. Not very many PTs know how. I have had so much PT I could almost treat myself now. But nothing compares to the decrease in pain I had following my rib resection. Now that only goes for AFTER the intense pain from surgery let up.
It's been 4 years now with this and no life still so I can empathize with the way you're feeling. You lose so much and your life changes immensly. Just know there are people out there that are praying for you and hope you get the help you need soon. Feel Better...

Sandy

This may have already been mentioned (I didn't go back and read the whole thread) but if you have any doctors who are really understanding of your pain and situation, have you asked any of them if they could keep you supplied with samples? Or at least, anough to help you until you get approval? I know that alot of doctors do this for patients. I see alot of elderly people come into my PCP's office picking up samples and from the looks of the sacks they're given, it's quite a bit of medicine. I would guess that they can't afford some or all of the meds they need to be on. Surely there are other drs. who would be willing to help their patients out like this.

Hello; I have never had tos surgery, still in limbo. My surgery was last year bi-lateral carpal tunnel release.

.
"It's been 4 years now with this and no life still so I can empathize with the way you're feeling. "You lose so much and your life changes immensly. Just know there are people out there that are praying for you and hope you get the help you need soon. Feel Better..."

Thankyou, it's been the worst 3 yrs of my life. My condition has gotten alot worse. My problem has been that I didn't accept this disability.Although, I'm starring at it face to face now. I've always pushed myself which caused major flares but my pain is different now much worse, just bending over to get my newspaper in the driveway yesterday was immediate, thought I'd have to go to the emerg.Pain was a level 9. Thankyou for the prayers, and kind words. I wish the same for you . I will be able to get my meds refilled, and I will but I think wc should be responsible, and I will start calling tomorrow am. There must be an explanation??

Just wanted to let you all know, wc is approving my precriptions. Just got the call today. Am I glad of that!!!

What is MR Angiography?

"Magnetic resonance imaging (MRI) is a method of producing extremely detailed pictures of body tissues and organs without the need for x-rays. The electromagnetic energy that is released when exposing a patient to radiofrequency waves in a strong magnetic field is measured and analyzed by a computer, which forms two- or three-dimensional images that may be viewed on a TV monitor. MR angiography (MRA) is an MRI study of the blood vessels. It utilizes MRI technology to detect, diagnose and aid the treatment of heart disorders, stroke, and blood vessel diseases. MRA provides detailed images of blood vessels without using any contrast material, although a special form of contrast material is often given to make the MRI images even clearer. The procedure is painless, and the magnetic field is not known to cause tissue damage of any kind."