Hello, all.

I have been suffering from TOS (and possibly Pectoralis Minor Syndrome) for about 3 years now. I am all too familiar with the doctor shuffle, the frustration, the chronic pain, the mental stress, etc.
I have been out of work since January - when my doctor finally acknowledged that the 8+ hours per day sitting at a desk, using a computer, needed to stop. Worker's compensation has actually been mostly helpful. Although finding something new that works within the restrictions I've been given is proving near impossible.
Over the last few years, I have tried physical therapy (multiple times), acupuncture, massage, nerve pain medications (currently on Gabapentin)....
Nothing has caused any improvement in my symptoms.
I have finally been referred to surgery as my last resort.

On one hand, I am terrified of having the recommended surgery. On the other hand (the very cold, weak, numb one), I just want my old life back.

I am at the point where I would do anything not to continue suffering as I have over the last 3 years. But the thought of surgery terrifies me.

I would love to hear from others who have TOS, who got to the point of having surgery, what you decided and why, and how you are doing now. Or I just need to hear from others with TOS. Because nobody else really seems to understand just how devastating this condition can be to all aspects of one's life.

Thanks for listening.
-Melanie

Hello & welcome Melanie ,

I'll go ahead and place a copy of your post on our Thoracic outlet syndrome forum for you.
I hope we can help you find the answers & info you are looking for.

here's the link to your post on the TOS forum -
http://neurotalk.psychcentral.com/sh...522#post683522

Welcome to NT

I do understand... 7 and 1/2 years of hell. I run the gambit on things. You can check out my profile if you have the upright time.

I also had a bad neck and back to contend with, along with TOS...

It is very frustrating and painful. I so much didn't need that in my life. I did not come out of it a better person because of it, either. I could have done with the whole thing. but, didn't get a choice.

I've had PT for 7 yrs, injections, trigger point injections and therapies, balls, Theracane, Lidoderm Patches, meds, Kinesio Tape, heat/ice, electrical stimulation, aqua therapy, yoga, relaxation and breathing techniques, and other things that I'm trying really hard to forget about

I did get some benefit from most things.

My latest help came from LED and infrared light therapy pads. Love them. It's taken over a year treating with them, but I am much better. I ended up with three. Not 100 % but better than I thought I could be. I'll share more info if you're interested.

I was offered surgery, bilateral scalenectomy with first rib resections. do one one year and give my body time to heal and then the other side. It was a scary offer, but one that was certainly an option. I never did have surgery and now I do not need it. It has been a long, hard battle and the fight's not over. I'm afraid this is a long-term condition.

We do understand what you're going through. We've been there. Let us know what you're having problems with and we'll try to give you suggestions to help you along till you get on a better path to recovery. First one that pops into my head is a hairdryer stand.

I pray you find some peace in your day and somehow manage to get some rest.

See ya around...

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. Looks like Alfee has given you a place to start.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

I had a 1st Rib Ressection on my right side and it did not help at all and it is a MAJOR surgery and it sucked bad!!!!!

Also I would love to talk to you about anything and everything that you and I are going thru so please feel free to write me!!!!!!!!!

Hi Eric Remillered

Welcome to NT

We understand TOS pain and what goes along with that diagnosis.

Here is our TOS Forum

http://neurotalk.psychcentral.com/forum24.html

Take your time and look around. There's a lot of info.

Let us knowif you need anything.

Hi, and welcome to NT! This is such a great place with many friendly, helpful, and caring people.

We're so glad you found us!

Eric I placed a copy of your post on the TOS forum also.

Hi Melanie-
Your post stood out to me because I used to be an office type poised at my computer 8 hours a day. I have had two workers comp cases since 2001 and both were found to be at least partially due to my posture at the computer. I also ended up with some thoracic outlet syndrome, but it does not seem to be very bad at this point. In my case, the diagnoses ended up as Neuralgic Amyotrophy (aka Parsonage Turner Syndrome).

I have had numbness and tingling in my hands, severe weakness, loss of dexterity, the list goes on. One thing seeming different about my case and yours is that I lost use of my thumb and right index fingers and also have winging of the scapulas on both sides. I think the winging is what stressed my shoulder leading to TOS. I was interested to learn about Pectoralis Minor Syndrome since it does seem to be related to office work. I think minus the winging and hand issues I have, that diagnosis may have been a pretty close match for my issues.

Good luck with Workers Comp. I have spent 7 of the last 10 years working on my two claims. Do not let them wear you down. They are counting on you giving up.

I did physical therapy and acupuncture too. PT helped get my arm back to pretty normal range of motion, and also to rebuild strength around scapulas. Weakness is ongoing for me.

I assume your PT gave you exercises for TOS? Did they help?