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!