Monday, March 7, 2011

A Clot, a Correction and a Conundrum

Let's start with the clot. When I went for an ultra sound to check on my left IJV the Radiologist said he couldn't detect any blood flow in the vein. After my doctor (PCP) read the radiology report she told me there was a clot in the vein and immediately put me on anticoagulant meds. I'm no longer in shock about the situation and am trying to move slowly and carefully to avoid any bleeding. At some level I feel relief because the clot may explain why I've experienced practically no benefit from the procedure in Brooklyn!

Okay here's the correction to my previous post: my left IJV did show stenosis near the valves. Delete the phrase I posted about the region of valve not being thickened or abnormal---the confluens of the IJV and subclavian vein was angioplastied aggressively to get blood flow through a faulty valve. Unfortunately, that's exactly where the clot formed.

So I'll stay on Coumadin three to six months as the clot shrinks and shrinks and shrinks. Oops, I regressed to talking about the clot again.

Here's the conundrum. Actually it's a riddle that I hope Dr. Sclafani figures out but I'll accept any ideas from practically anyone on how to solve it. The upper part of my left IJV has that septum issue that wouldn't pop open during the procedure. Think of it like a funnel but turned upside down so the wide part is higher and the narrow is lower. That's what my blood is trying to pass through as it flows down the vein.

I was told I'm not the only patient with an inverted funnel thing causing problems. However I'm the only one with such resistance to balloon angioplasty to treat it. I'm forever searching for the part of me that is unique but I really DON'T want my veins to be unique!

I realize I'm a pioneer and my doctors are learning from my case but I didn't want to hear that no one else has shown the resistance that I did during angioplasty. While writing posts for this blog I usually try to end on a hopeful note but I must confess that I feel discouraged today.


  1. This may be small consolation but .... though the new light being shed on your condition is ever so faint, compared to before, when it was all darkness due to lack of knowledge, I think you are ahead of the game.


  2. Are you okay Patrice??
    I went to my GP yesterday..and it was depressing as he told me that the theory around CCSVI is bunk.He also said that the drugs prescribed for MS reduce excerbations and I assured him they do not. He said that they are better than nothing.
    I disagree but he feels that he "knows" more than I because he practised in Saskatchewan where there are so many more people with MS.
    Hard to listen to him and difficult to realize that he can't/won't listen.
    Hope you get some wonderful things going on and so sad to hear about the inverted septum in your IJV:(

  3. Thanks for your comments Judy and Ruth-A-N. Today is the first day in quite a while that I'm feeling slightly better---so I'll try to add a new post with updates to my blog! I hope both of you are doing well.