Our stories are sounding more and more familiar. I too was misdiagnosed and my hemotologist keep saying how puzzled he was by my clot in my upper arm. He presented my case to every doctor he came in contact with trying to get the real reason for the clot. He finally got into contact with my vascular surgeon and I got the real diagnosis.
Since you have had more than one opinion, what are they telling you on recovery from the surgery? I am in my mid-thirties, very active, and have two young children to keep up with. I have read that post-op is horrible and that I should plan on being down and out for atleast two weeks and no driving for 2 months.
I am trying to get another opinion just don't know where to look for vascular doctors in my area. My doctor now said that he would have to refer me out for surgery as this is not his specialty.
Thanks for responding.
Quote:
Originally Posted by Mcmanisport
Wow- if your Dr is giving you the option of rib removal and vein patch vs go off blood thinners and see if a new clot forms- I personally would do the rib removal and vein patch, based almost completely on the fact that there is extensive damage to your vein. From what I understand, if you dont get the rib removal, the vein will continue to get even more damaged. BUT keep in mind I'm not a Dr, I'm just another patient suffering with Pagett Schroetter just like you 
Please, if I were you, I'd go get a 2nd and 3rd opinion from Drs. that deal with Thorasic Outlet and Pagett Schroetter on a regular basis.
When my clot was discovered, the ER doc was totally baffled- said he never saw or heard of a DVT in the upper extremity. Put me on Lovenox and Coumadin and told me to go to a hematologist. Now that months have gone by with misdiagnosis, and I finally have my correct diagnosis of Paget Schroetter (thanks to the venogram that should have been ordered months ago) I too wonder how much damage has been done to the vein and if its even reparable. I have had one opinion so far and have two more set up. They are all with vascular surgeons that specialize in TOS and PS.
Also, my vascular Dr said to me there is no reason I should be on blood thinners at this point because the clot is due to occlusion from the rib, not thick blood. I decided myself to just keep taking them anyway- to be on the safe side (if that even makes sense)  at this point I dont even know anymore. |