Sunday, December 12, 2010

Not all Euromedic CCSVI treatments are successful

Here is a report from my friend Inge who was treated in Katowice a day before me.  Note that for several reasons (including a botched stent placement in Katowice), she is going to Belgium to have her stent replaced:

My first Liberation treatment was in Katowice, end of April. I noticed immediate improvements. I could stand up straighter than before, longer than before (I could for instance shower standing up, something I wasn't able to for a long time already). I had a substantially improved balance (tested and verified by my physio) and more strength in arms, hand, legs and torso. I was able to walk a little bit faster behind my stroller, I could lift up my left leg more easily and so forth. I certainly had more energy.

For 2-3 months everything improved. I felt that the MS progression had stopped: for the first time I did not have that feeling any more that an avalanche was threatening me and I couldn't do a thing about it.
Then slowly, spasms returned. And I couldn't walk that easily anymore behind my stroller. I could hardly turn in bed. At first, I thought it had to do with the stress of renovating our house. And then I thought it had to do with staying in a cottage for the summer holidays and not sitting on good solid chairs. And then I thought it had to do with the amount of work I took on. Excuses, excuses. I had the sense that something was wrong, but things were inconclusive: I still had my balance, i still had my energy...so what?

On the 9th of November, an appointment with dr. R. Beelen at the OLV Ziekenhuis in Aalst Belgium gave me the answers. The doppler showed clearly that my stent in my right Jugular behind my collarbone was completely clotted. Looking at the operation images from Poland, Dr. Beelen saw that my stent was dented and broken in some places. (Already during surgery!) This and the description of my symptoms confirmed to dr. Beelen that my stent had been clotting up over 2-3 months since the first procedure. It takes time to fully close up, that is why my symptoms started to reappear so slowly. Strange thing, and difficult for me to comprehend is the fact that other symptoms remained: balance, energy were all good.

Dr. Beelen told me that the edges of the stent are cutting in my blood vessel, so there is an explanation for the slight pain I had al these months. Vessels do not have nerves, but the disturbance of the vessel creates all kind of reactions in the vicinity of the stent, so that is why I experience pain.

Dr. Beelen also told me that he would recommend a much tougher regime on bloodthinners than Dr. Simka does. Especially in my case, as I have the Leiden Factor V mutation, which is a higher risk for trombosis. He would for instance prescribe fraxiparine for 3 weeks instead of 1, use coumadin instead of the pavlax dr. Simka subscribed. And he wants everyone that has a stent under close supervision of the thrombosis service. They draw blood every week and adjust your medications when needed.

So that is what I am facing when returning to Belgium next week: Dr. Beelen is going to insert a new stent in my old stent, flatten the old one out and check the jugs and the azygos once again. I am very looking forward to having this second procedure, as I expect it to solve a lot of the problems I am experiencing now. Luckily, Dr. Beelen referred me to an organisation that is trying to get my operation covered by insurance: the Royal Doctors. Last week I was able to get a referral from a vascular surgeon in The Netherlands, and this will improve my chances on coverage.

What I learned from all this is: go local! It is very important to have good follow up care. A check by the thrombosis service, close contact with your GP. I am glad Dr. Beelen is also thinking about the financial aspect of things. because this will otherwise cost me another 6500 euro. We will see how things work out.

So next Friday the 17th is the big day. Hopefully everything will turn out fine. I will keep you posted.

take care and have a happy X-mas.
X

Inge

7 comments:

  1. Thanks Inge;
    Really appreciated your time & effort in posting this for all of us to read.
    Wishing you a very Happy Christmas & all the best in the coming New Year.

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  2. I had mine done in Costa Mesa, CA. a month ago and I haven't seen any improvement.

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  3. Mine in Albany, N.Y. Sept. 30, 2010 and no improvement either. I'm sorry to say.

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  4. thank you all for sharing

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  5. Mine was 9 months ago at Euromedic, and I`m still feeling good. I don`t have a stent.

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  6. Thanks for sharing a idea....Great post and informative
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    ReplyDelete