Hi all,

I have been reading the tos stuff for several years now. I was diagnosed with bi-lateral tos about 10 years ago, after 3 failed neck surgeries. I went to therapy etc., and then was advised to have surgery on both sides. Due to the failure of the neck surgeries, I have been certain that more surgery wasn't for me. Well, after over 20 years of suffering the chronic pain in neck, shoulders, elbows, wrists, hands etc., and having been in pain management for a few years (which I also stopped about 3 yrs ago) because the tons of meds interfered with my daily life so much. I was taking soma, morphine sulfate 220 mgs/day,restoril for sleep, lortab for breakthrough pain and several other things. Anyway, I have learned alot about our shared disease from all of you over the years. I am now in constant pain again, after a reprieve of about 2 years (that is the pain was bearable most of the time).

Anyway, I continue to hope and pray that something will be found for all of us who suffer from this "awful thing" which by the way, as you all probably know, very few people understand.

Hi Sharon,

Welcome,

Sorry to have to say welcome and to hear of your pain. I hope something is available to help you with the pain. I look forward to getting into the pain clinic here in Calgary.....can you go back and get help from them?

I hope something is there for you. Hope we can learn from all of your knowledge. Welcome and please share all of your info and docs with us so we can gain your accumulated good and bad......

Take care and happy to have you join and share with us!!

love and hugs,
Victoria

Welcome Sharon, sorry about all the problems, surgery and pain you have been having. We all know it is not fun. Many people on this site have great medical insite. I don't. I am here for the support and comfort knowing I can say how I feel and know that others are or have experienced the same thing. Best of luck and once again, welcome. Linda

Hi Sharon,

I am sorry that you are suffering so much pain. I am happy that you joined us.

I look forward to getting to know and share with you.

Welcome Sharon! Glad you decided to join us, but so sorry you are suffering. It's a hard life for us - but we are survivors.

Anne

sorry we had to meet you like this, but glad you've found us. too many of us come here having had unnecessary surgeries... i guess i'm glad i never was able to find a surgeon willing to operate on my neck (i'm like you, that was my worst sx, for years and years - oh, what am i saying, it still is!)

to me, one of the worst things about TOS is that it can mimic so many other disorders that it leads a lot of otherwise competent docs down the wrong path for a very long time. meanwhile, we suffer - or are not believed when we try to report the amount of pain we're in! it sucks, it sucks, it just plain sucks.

what part of the country are you located in? if you are near a major university with a teaching hospital attached to it, perhaps there is a pain clinic there you would be willing to give another go. because in my experience, the good ones offer a whole heck of a lot more than just meds. (actually, it's hard to GET meds from the ones i've been to!)

but seriously, the right kind of PT (you need someone trained to work with a TOS'er, very important), a pain psychologist, maybe a support group in addition to regular follow up visits after an initial evaluation by a competent PM doc now that you have a confirmed dx of TOS (i am assuming it has been confirmed by a TOS specialist? is that correct?) just might be worth another shot, to try and get some quality of life back.

many here have had TOS surgery and if you stick around you will be reading about that. not the answer for everybody, of course, and unless your case is vascular or has reached a certain stage and/or is a certain type of neuro TOS it may not be something for you to contemplate. or not just yet, at any rate... but having said that, many of us do find that a consult with a top TOS doc (usually a vascular surgeon) can be very informative. it can lead you to other specialists in your area and other modalities to try, for example. they're not ALL eager to cut on you, contrary to popular belief! nor should they be... only if it's going to truly decompress the neurovascular structures and allow your poor body to start healing.

there is a lot of information in the stickys up top, as i'm sure you know, and within the threads and posts themselves you will find support and gain the benefit of others' experience with TOS. each one of us is different, of course, and much of what is here you will need to take with that proverbial grain of salt... but we mean well!

i hope you join us. the search bar (including the advanced search function) will help you to call up older topics and poster threads, respectively, if you're interested - by key word or by name. they're located in the upper righthand portion of your screen. more than you ever wanted to know about thoracic whatlet? syndrome (that's what i call it! since no one ever knows what we're talking about anyway, right?)

pull up a seat. sounds like you've earned it.

and welcome home.

alison
"Be Brave"

To all of my TOS family. Today I can barely type. I have very bad tremors some days,and they usually seem related to the amount of pain I'm in. I have had muscle wasting for several years now and often my hands tremble and I cannot do any kind of intricate procedures with them, i.e.putting some earrings on etc. I love all the information that is available to us through this wonderful site, and look forward to useing it more..........: