[vthomas]

So I officially confirmed my diagnosis of TOS today at PT. I had a grip strength of 28 in my left hand and 50 in my right which are apparently low. I have also lost the ability to hold my fingers together or apart completely, the same goes for holding my wrist in place as well. I had no idea on those since I can still move them, apparently it is a neuro problem not muscular. I also have significant loss of range of motion everywhere including my neck where I was around 30 degrees at all angles. All of the maneuvers for TOS were positive with numbness and pain.
My question for y'all is I am predisposed to clotting due to a prothrombin mutation P20210A if you want to look it up or have heard of it. My therapist said not to worry about it. But I am also exhibiting some of the vascular TOS symptoms cold hands (my hands were NEVER cold before this) and blanching. As well as some slight swelling I think. I am worried I might have a clot or could be throwing small clots on and off and I don't want to get one in my lungs or something. I don't know how to tell my doctor, like look you might not be worried but I kind of want to make sure that there isn't a clot and that I don't have the vascular TOS. Do you guys think it is important to distinguish the two or will the treatment be PT either way?
Also I would like to vent about how much PT sucked the first day!! Thanks
That is all....
Tory

[chroma]

You're worried about telling that to your GP? I can understand. But if you tell it to a "vascular specialist" or "vascular surgeon" they'll understand what you're asking. Given that you have a clotting mutation and TOS, I think you should see one soon to get more information.

Keep in mind that surgeons aren't just for surgery. They are also for consultations in their area of expertise. I didn't really know that before all this TOS stuff.

Good luck.

[OzKira]

Originally Posted by vthomas

So I officially confirmed my diagnosis of TOS today at PT. I had a grip strength of 28 in my left hand and 50 in my right which are apparently low. I have also lost the ability to hold my fingers together or apart completely, the same goes for holding my wrist in place as well. I had no idea on those since I can still move them, apparently it is a neuro problem not muscular. I also have significant loss of range of motion everywhere including my neck where I was around 30 degrees at all angles. All of the maneuvers for TOS were positive with numbness and pain.
My question for y'all is I am predisposed to clotting due to a prothrombin mutation P20210A if you want to look it up or have heard of it. My therapist said not to worry about it. But I am also exhibiting some of the vascular TOS symptoms cold hands (my hands were NEVER cold before this) and blanching. As well as some slight swelling I think. I am worried I might have a clot or could be throwing small clots on and off and I don't want to get one in my lungs or something. I don't know how to tell my doctor, like look you might not be worried but I kind of want to make sure that there isn't a clot and that I don't have the vascular TOS. Do you guys think it is important to distinguish the two or will the treatment be PT either way?
Also I would like to vent about how much PT sucked the first day!! Thanks
That is all....
Tory

I have FVL (Factor v Leiden) which is a genetic blood clotting disorder as well as V/A/NTOS. Just prior to dx with TOS I had 2 clots a year apart which now we know travelled from my subclavian vein and lodged in my lung. Having a clotting disorder as well as TOS is not a good thing. What tests have you had to say you dont have VTOS? Based on your symptoms they sure sound like VTOS to me. I cannot have pt or chiro in case I have a clot which can move with treatment. This happened after my 1st clot and I ended up in hospital for 2 weeks with a PE. I would talk to your Dr and see a vascular specialist just to be sure. I hope it wasn't a pt that told you that you haven't got VTOS

I have heard of P20210A as it is genetic and similar to mine. Do you have one or two mutations? If you have one your chances of clotting are 4/8 from memory but if you have 2 genes affected it's higher again. Your more than welcome to pm me if you want to ask more about my experience.