I joined this site to hopefully get some insight on some of my son's symptoms. He is 23 years old, has a shunt that has been revised over 30 times. Last year he had several and ended up in the hospital for 3 months and had to re-learn how to walk and use his right side. He has just about fully recovered but has one nagging problem left to deal with.

He developed a blood clot in his subclavian and jugular vein due to a venous cath. The docs can't tell if the clot is still their or if there is permanent damage when they look at ultra sound. He has developed collateral veins that have taken over the blood flow that used to go through the other major veins. He has swelling in his shoulder, chest and down his arm and in his hand - all on the right side. His hand is numb and his ring finger and middle finger are very stiff making it hard for him to write, use a fork and knife, or hold certain objects.

The doctors are stumped. I think he has some form of TOS. Is anyone familiar with any of this? His doctors have run out of answers and just scratch their heads. I'd like to know what to do so he doesn't have to deal with this. It seems to be getting worse and they just took him off of Coumadin.

Thanks!

Hi jhamilton,

Welcome. as a fellow TOSer I would have to say it certainly does sound like TOS.

Here is the link to the TOS forum. At the top is a sticky that has tons of useful information including TOS specialists.

http://neurotalk.psychcentral.com/fo...sprune=-1&f=24

I will also copy your post over to the TOS forum so other TOSers can chime in.

Thanks! I'll try the link.

Hi JHamilton and

I see Shelley has given you the TOS link... but...

Please feel free to roam around and join in anywhere....

Hope to see you around the boards!!!

Abbie

Hello jhamilton and Welcome to NeuroTalk. Glad you found us and hope you take a look around and make yourself at home..

Hello and welcome to Neurotalk - you will find many great people here!

If you need anything just ask - I will try and help you if I can.

Thanks and i'm looking forward to seeing you around the forum soon.

Alison

Hi, Jhamilton! Welcome to NeuroTalk!

Feel free to join in anywhere and let us know if we can assist you in any way.

Hi there and welcome to NeuroTalk!

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene

Hope you can find some peace here. I know I have!! Lots of fantastic folks just hanging out...