We do truely understand...

*** W A R N I N G ! ! ! ! ! LONG POST ! ! ! ! ! ***

I will tell you 7 1/2 years of suffering won't be good for you mentally, physically, emotionally or financially. It's also very hard on your friends, family, work and social life.

Having said that, I will say this: What you're doing now is not working. It will not go away on its own. There's a few more things to try, but they will not get you better quickly. There are no quick fixes for TOS. No medicine specifically for TOS.

I took the Neurontin. It certainly helped my symptoms but it was the hardest drug I've ever taken. The brain fog and the out of consciousness after medicating is scary weight gain too.

You can reschedule your surgery until you're more comfortable and are for sure it's your last resort. If that is your decision, let the surgeon's office know as soon as you decide. I know they will understand. No matter what I would ask my good surgeon about(alternative treatments) he would come back and say "You'll still need me." I had confidence in him too, but I didn't find him until 4 years later. By that time and all I'd been through, I really wasn't trusting anyone. One said this, another said, "Don't do that. Do this." and it was just as scary and risky.

Brachial plexus injections are risky, but I wish I had went for that, as driving is still an issue. I do it without pain now, but I can't go when and where I want. After 10 years of battling the highway/driving, I've worn myself out with wanting to go anywhere. TOS won that battle . I'm doing too good now to risk any ill effects from that injection, bilaterally.

The iced feeling you're describing is very familiar and very real to me. I did find (in 2007 or '08) that if I kept my arms, shoulders and scapulas "fleece warm" I was not in half as much pain. Imagine that. My arms and hands were so numb I really couldn't feel how cold they were when the pain would wake me up in the wee hours of the morning. That was back when it was just me, my dog and God in the darkness of the morning hours.

(BTW, pain would wake me up and I would already be crying, in my sleep

I used a heating pad for years (2 heating pads died). not knowing heat was causing swelling on a microscopic basis. not good in the long term. I discovered Snuggies, blankets (hubby says I look like a 60-yr-old wrapped up in blankets all the time, even in the summertime )

I also have "arm socks." My PT started off with what they use to cast people's arms with. it helped but wasn't heavy/warm enough. Do try a hot shower (blew out my water heater-got a bigger one ) and keeping your upper body wrapped for a day or two to see if you get any relief. I know I look ridicilous in the summertime with sweaters, snuggies and blankets, but that's just the way it is for now. I have manged my wardrobe a little better to suit my needs.

I do highly recommend you look into the LED/infrared light pads. (started using those a little in 2007 & '08) . Then, in Dec 2009 I ended up with 3 of my own.

In some cases W/C will pay for the pads. I wanted to start a business with them, but am too busy with my regular court reporting duties. I can sell them, though, if you want me to try with your W/C carrier.

Here is my upline's webpage. She is a wonderful person in this painwrecked world. I wish I didn't live so far from her.

http://www.healthlightz.com/

She has recently expanded her business into a spa/therapy setting. There's another webpage for that. Smart Skin Solutions, but I couldn't find her page.

It took me a while using those pads, but they have got me back up and canning (My husband and I raise a garden now and can for my household and several others in our family. I'm able to do that this year, and am enjoying it so much.) I got back into it the last two years before that but suffered a lot, and now can do it without pain but only because I found the lights.

PT had me doing a lot of stretches at home that helped too. Always something new to try. Not everything helped. Some things made things worse for a while too. I had 2 therapist, at 2 different facilities over the years. 7+ years is a long time to spend in therapy. Many, many stories to tell about those adventures. My therapist and I have a very good friendship now. She only wanted me to get better and tried many things and she was the one that introduced me to the lights. With TOS, it's challenging and painful to PT your symptoms away. It helped a lot, but still miserable with pain.

Yoga is good too. (that was hard at first. Yoga master was very understanding and would prop my arms for me ) Yoga helped too but wasn't going to get me back to where I am now.

I do not want to see another person suffer as long as I did. It has been unreal and I'm really trying to get past those bad memories. If anything I write or say can save you or anyone else from a day of pain, it's worth it to try to tell you my experiences.

(FYI: rear ended by an ambulance at a red light in 10-2000. Had cervical epidural injections X3 in 2006 - helped my cervical and lumbar back, arms some too. I've also had botox injections into my scalenes -helped but not a lot. lasted about two weeks. Just long enough to let me know I was really in trouble .)

Sorry so long. reading not as hard on TOS and typing. You don't have to get things right in typing... don't make the extra to correct typos. do your best and we'll figure out those little mistakes. I keyboard for a living, but it certainly don't help my symptoms. I won't give it up. I've won that battle!!!! )

I wish there were more success stories to read about. I'm sure they're several success surgeries that we don't get to read about.

Here's a webpage from another NT member who is suffering from TOS. She has started a much needed TOS Society.

This is her profile here at NT:

http://neurotalk.psychcentral.com/member.php?u=234

Here is her TOSS webpage:

http://www.tossociety.org/

You're not alone...