Glad to find this site!
 

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, I am sorry to hear about your son, it is a terrible burden the worry and fret of our kids and prayers for their health. It is not fair for children to suffer.
It is a very lucky and beautiful thing that the body created the colaterials. Magnificent when you think about it! But, your concern over clots is real, but also I would wonder about the scar matter or adhisions that may have also entangled the area. There are some very top excellant doctors, only a few that could exam your son and make a decision to the effects. The doctors that treat TOS are so familar with the structures, how the subclavian may have an anomolie or been moved during his surgeries or scar matter to pass un naturally through the scalense muscles in the neck. There is a animated picture of some types of TOS I like to post and will look for it.
cardio docs do that, neuro docs that, but TOS specialist see the entire picture. Is there a doctor near you in the llist? Have you had dopplar test?

With my TOS I get blood flow to the arm, but it seems blocked to flow back out. The difference between vascular and neurogenic TOS is differing and treatments differ. But the pain and symptoms vast.
Everyones TOS is different, no cookie cutter diagnx or treatments, everyones body is NOT exact, that is why tos hit so many in a different manner, injury, accidents, repetatives use, vascular, injections, etc.

The brainstorming takes place here, but real help will point to a top doc.
Hoping you find support and leads here,
dianne

Welcome to the site jhamilton!
:welcome_sign:
It sounds like it could be scar tissue causing TOS symptoms? but as Di said, seeing a top notch TOS Dr. is your best bet. Check the stickie at the top of the threads to see if one is in your area.

His symptoms you describe, the swelling, the ring and pinkie fingers... could be.

You're a GOOD MOM!
:hug:

Welcome !

Your in the right place !

Dolfinz