New and desperate for help
 

Hello everyone. I'm new to the site and I'm really looking forward to maybe finding some support if nothing else. I'm a young, otherwise healthy mom living with thoracic outlet after a work injury two years ago. It has been a very long exhausting road and I am incredibly frustrated with the little bit of information my doctors can give me. It took eleven months to get a correct diagnosis and I have heard everything from 'its just a pulled muscle' to 'its all in your head'. I have had several x-rays, CAT scans, MRI's, EMG's, and SSEP's, as well as numerous vascular studies on top of a VERY painful myelogram. I have had one nerve block in the c5/c6 space to no avail, and several trigger-point injections in my right shoulder that did not help either. My symptoms have worsened dramatically over the last two years, and I fear living the rest of my life with this condition. My TOS is strictly right-sided and a cervical rib has been ruled out. Currently I have sever pain that radiates down my scapula and around my rib-cage; there is sub-clavicular pain as well as chest-wall pain similar to the feeling of angina. I have right-sided arm pain that seems to start at my armpit and follows the underside of my arm, through my elbow, into my wrist and fingers, primarily my fourth and fifth digits. I have increased sensitivity to cold and experience tingling, numbness, and swelling with any abduction of the arm greater than 30 degrees. To complicate matters, I am expecting my second child in three months, and with the increasing size of my abdomen putting pressure on the brachial plexus, my symptoms seem to be more difficut to control and none of my doctors have ever treated such an advanced stage of this condition in a pregnant patient, so they have been unable to tell me what I might expect in the next few months.

Hello and Welcome - Ruperts_mom23
I see you have found our TOS forum already so I'll see you there.

Welcome, Ruperts_mom23! So glad you found us. I know this is a scary time for you. I hope you find some answers.
Hugs,

Hi Rupert's Mom...
 

It's very nice to meet you, but I'm so sorry for the reason that brought you to us. I can hear the fear and desperation in your words. I know what it's like to be scared and in severe pain, and not know what to expect for the future. I've been ill five years and still haven't received a diagnosis yet. But a person can learn to live with these things, even if life's not quite as good as it was before. I hope and pray that you'll feel better, and find all the answers that you're looking for. And I really hope that someone here can give you better advice than me, since I'm not familiar with your condition.

Sending you best wishes and prayers...

Idealist

Hi RM

:welcome_sign: to NT. I am a fellow TOSer. I see you have met Jo and Idealist, two of my fave peeps.

Come over and visit the TOS forum. We have lots of information and tons of knowledge that might be able to make things easier for you.

:hug: I know TOS can be a bear to handle.

New Also
 

Hello Ruperts_mom23, just read your posting and looked up TOS in this site:
http://www.tos-syndrome.com/newpage2.htm
You seem like a very intelligent woman so please don't give up as positive treatment can surface at any time.. Have faith and here's wishing you the very best..

welcome to NeuroTalk Rupert_mom and Lou

Rupert_mom, I have copied your introductory post over to our TOS forum for you

here is the link to it there so you can check for replies
http://neurotalk.psychcentral.com/sh...ad.php?t=22058

Hi (((Ruperts Mom))). Welcome and it's nice to meet you even under these circumstances. I see that you found the TOS forum and I hope you find folks there to share with.

:grouphug:

Welcome from me too.

I visit TOS board too. Trying to understand this too. Because i'm having issues not sure if pretaining to this or other things.

Donna