Thursday, March 15, 2012

From Inge - Last November

As requested by Anonymous, here is Inge's last message concerning her status... not good news, I'm afraid:

Hi Ted, Hi all,

Good to hear from you again.

With me, it is not going as well as I hoped for when I started the CCSVI adventure in Poland in april 2010.
As you may recall, a stent was inserted in the right Jugular vein. During the procedure already something went wrong and the stent was damaged. I only found out in October 2010. After initial improvements and stabilizing my MS, I began to experience more spasms and more MS symptons since July. That worried me, and that was the reason I went to Aalst, Belgium, to have my flow checked. It turned out that because of the damaged stent, trombosis clotted the stent. There was no bloodflow whatsoever and that was the reason my symptons worsened. I had a second procedure on December 17th and immediately I felt better and improved my walking etc. So far so good. In March, my bloodflow was checked and was fine. However, this year I experienced a worsening of symptoms again in July-August, so I went for another check in Belgium on September 6th.

Then it turned out that the stent was clotted again and I was scheduled for a third procedure. Slightly worried, because you can not endlessly have these procedures. Perhaps a maximum of 4. So I prepared myself for a new medicine regime or something, everything in order to prevent the stent to clott again.

On October 7th I had the procedure, and there it turned out that the stent was totally blocked by scar tissue. No bloodcloths, but hard and unpassable scartissue. So the operation failed. And basicly this means the end for my RIJ vein: it is definetely blocked. A bypass is too risky and too big an operation, so there's a dead end.
Luckily my LIJvein is still open, as well as the azygos. But my major improvements started after opening the RIJ vein, so I do not expect much of the 2 veins "left".
Now what? I started a new food regime and I also started to take serrepeptase (serranol) an enzym that helps to remove scar tissue in your veins en helps the blood flow freely. Hey, you never know ;-)

But for me, the CCSVI adventure has come to a halt. At least, in knowing that there is always a procedure at hand to clean up the clotts. I am still having fysiotherapy and still work 3 days a week. Kids and the hubby are doing great. So no complaints there. The only thing is that I do not know whether the stable condition a experienced for 18 months, is likely to go on for the coming years. So more uncertainty. I actually thought I could push the feeling of being an MS patient far from me after the procedures. But now that feeling is back, in my face. And that is a bummer.

Sorry to bring such bad news. I hope the rest of you is all doing fine!


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