I was diagnosed with TOS four months ago. A blood clot formed in my right vein which is how the whole diagnosis was found. I am now seven months since the blood clot was found. I had a surgery in April to try and "blast" out the clot. Now that the clot is gone there is significant damage to my vein. My doctor had me in PT to work on opening the space between my collar bone and first rib but this has not happened. My doctor is now giving me the option of first rib removal and vein patch or come off my blood thining meds and see if another blood clot forms. I haven't seen much on your site about this or the internet for that matter. Does anyone have any advice or guidence as to where I could look for information? I read several posts on here about post surgery and am not too optimistic about spending so much time down and out. Thanks.

Sorry about what you are going through.

So were you diagnosed with Pagett Schroetter disease, aka effort thrombosis? If there was damage to your vein, do you know was it damage from "blasting" out the clot or damage from compression from your rib?

Did your Dr order you to have a venogram done yet? What type of Dr are you seeing for this? (ex. hematologist, vascular surgeon, general practitioner?)

I was diagnosed with Pagett Schrotter. The damage to my vein is due to the clot. Had to have the vein ballooned up to even get the tiny cathater to fit through. My doctor, a vascular surgeon, said that the clot was very old and that my veins walls are very damaged and thickened because of the clot being there so long. I have had a venogram and am not allowed to move my arm straight out to the side or anywhere above my shoulder because I have no blood flow to my arm at that point.

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.

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.

Yeah I don't understand your Dr.'s point. Even if the compression is triggering the clot, wouldn't the anticoagulant prevent the clot from forming?

Plus my understanding is that "blood thinners" don't actually "thin" the blood. They just prevent clotting.

Is my understanding of all of this all wrong?

My doctor is wanting me to come off the blood thinners. I agree with him on this point. I am young and very active. Being on the blood thinners the rest of my life does not sound like a good option to me. The actual flow that is getting to my arm currently is about the thickness of a hair, so more than likely if I come off the thinners a clot would form. Have you had the surgery before? What was your outcome? I have no pain or any other symptoms except for the blood clot. Lots of people on here have said that their pain got worse after their surgery. I don't want to have new symptoms after surgery that were not present before.

Sorry, I have not had the surgery. I'm a newbie in this. I see my first vascular surgeon next Wed after having tried some conservative routes.

I hope that things go well with your doctor next Wednesday! I am new to this as well and just looking for advice from others going through what I am going through.

This is the link someone gave me on my thread its like maybe three posts down. It has a list of Drs. grouped by states. Some of the links are outdated or missing a letter as I found out when some mail was returned to me with incorrect addresses lol. But it has some great Drs on it.

http://neurotalk.psychcentral.com/thread159707.html

I have had one vascular surgeon who was referred to me via my general practitioner- she had heard he was very good (but very far away) in Minnesota who specializes in cases like ours give me his opinion. I mailed him my test results and CDs from the initial ultrasound and the venogram. He said surgery would take 2 hours. Said I needed rib resection, scalene release and vein repair. Told me to stop taking my coumandin (which I do still take)
Our conversation was cut short and I didn't get any more details, yet.

I contacted another Dr. in Denver, whom I heard only positive things about on here. He was only too happy to offer advise and opinion to me. Very nice and personable man. If he wasn't so far away I would have gladly seen him in person. He gave me his opinion today (as much as he could without seeing me in person with only diagnostic test results, the paper documents, not the actual CDs) and no exam. He said the vein is shut but has discovered new pathways for the blood to go which almost makes up for the clot being there. I have never heard of this before, but what do I know. He said that is why I can see my veins more prominent on the right side of my chest and my upper right arm. He said I could live the rest of my life like this just fine. IF the vein decides to recannelize or reopen, then at that point I become the perfect candidate for another clot, and that's when something such as surgery should be done. He suggested another venogram in 2 months. He also said if my discomfort from TOS is very bad then that could warrant surgery and at that point they would repair my vein also- since they are already in there. My discomfort is not quite at that level yet, especially knowing now how uncomfortable recovery may be. So yes I have two very different opinions now, though both done strictly over the phone.

Sooooo, I heard about this other great Dr. in Baltimore at Johns Hopkins. Contacted her she was kind and helpful, put me through to her secretary only to find out neither the Dr or the hospital takes my insurance. Bummer.

After that, what I did was I entered my insurance name on google. Came up on their website. Looked under PROVIDER SEARCH. it asked me to put in what type I entered VASCULAR. I put in within 50 miles. Gave me a list of like 50 Drs. I just went through each one. Googled each name. Some names took me to their direct website which told a little about each dr and some sites listed their interests or specialty. There were a few that had "thorasic outlet syndrome or Pagett Schroetter" those Drs I called on. Out of about 50 there were 4 or so that specifically stated these interests. Those are the ones I called and first question I asked the receptionist is do they see many cases like mine and does the Dr know a lot about TOS and Pagett Schroetter. The three that said yes I made appointments with. I have one Nov. 3, one Nov 8, and one Nov 14. I will bring my CDs and paperwork and I'll tell them I'm there for 2nd opinions, and I wont tell them what the previous opinions are, so as not to sway them either way. It took me all afternoon to do this and I was ready for a glass of wine when I was done. lol

Yes from what I've read on here the post op doesnt sound fun. I have a little one too and am active in my 30s. I am looking to avoid surgery very much so, but if its necessary then I guess its necessary.

I hope this info helps in some way, and that I didnt overwhelm you at all.