3 months after Poland & second procedure in Lisbon

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

3 months after Poland & second procedure in Lisbon

Postby mtf » Sun Sep 12, 2010 11:50 am

I’ve lost all of my little improvements after the 1st procedure in Poland (8.06.10). I’m not worse but definitively lost all the little improvements I had.
On 9.9.10 I had my 2nd procedure, this time in Lisbon made by Prof. Martins Pisco and his team. They are great!!
I decided to compare the 2 procedure and let you all know about it:

1st procedure (Katowice Poland-8.6.10) Time : 20 minutes Right groin
2nd procedure (Lisbon Portugal-9.9.10) Time: 3h30 min Left groin
1st proc.: Stenoses in both jugulars (left worse then right)
2st proc. : Stenoses in both jugulars (right worse then left). 1 stent on the right jug

1st proc.:Azigos was ok
2st proc. 5 stenoses in azigos vein (took 2h to ballooning)
plus 2 stenoses in the iliac vein – 2 stents

After they put the stents in the iliac vein I felt the warm blood running down my jugulars
(it was spectacular). Tomorrow I’ll go again to talk with Prof. Pisco because he wants to check if everything is ok.
I’ll update you all as soon as I have more news (good or bad)
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Postby blossom » Sun Sep 12, 2010 12:34 pm

please keep us updated and the best healing to you. kinda scarey though that we leave anywhere wondering-did they miss something? ccsvi treatment is really defining again what is meant by a doctor's "practice"-and "practicing" medicine. that is why it is there they are "practicing." hopefully they all "practice" and get it right soon. i let them "practice" on me too. kinda reminds me of a school teacher telling me that i had to "practice" until i got it right and eventualy i did. so hopefully soon.
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Postby Johnson » Sun Sep 12, 2010 3:41 pm

Boa mtf! I am very happy for you. And you were treated at home! Was it covered by the government?

I have watched my procedure videos a couple of dozen times, and wonder at why they were satisfied with the result. There is no doubt that I felt fantastic after the procedure, but after a couple of days, I knew that I was re-stenosing. There are all kinds 0f "jets" into what I presume are collaterals. I saw turbulence in my jugulars after the ballooning, and the aforementioned jets off the azygous, which they declared to be "okay, but has a bend in it". I think that one stenosis leads to another, and if something like the iliac vein is causing upstream problems in the azygous that lends to jugular, dural sinus, etc. problems. What is being missed? Why did mtf get 20 minutes in Poland, and 3.5 hours in Lisbon?

I was in mtf's cohort, and there were six of us done that day. My turn took about 50 minutes, another was about 45 minutes. The other fellow in my room was 25 minutes, mtf was 20, and I don't know about the other two. I had an e-mail from the only stent recipient (who was pushing her empty wheel chair the day after), and she reports that she is "very well". The fellow that had a 25 minute job has returned to baseline, and is clamouring for stents now.

I have been thinking of starting a thread to track clinics and outcomes, but I am pretty brain-dead. I think it would be useful though. It costs a lot of money to fly to Poland and have the treatment. There is a "warranty" - in that my second round will be much less money, and I was donated a flight, but I wonder if my attention would be better directed at a clinic that does check the iliac vein, and takes their time in looking for further problems. I have wondered if all of the international media attention has imparted a "super star" mentality, and they are gliding on their reputation.

Note that I am not knocking down Euromedic in any way, I just wonder at these things. I am going back, and will pay more money because I know what I can feel like. I don't know if it will last the second time either. I was thrilled with my first outcome, but I am back to baseline too. I don't want a stent, personally. I believe that it is bacteria, virus or parasite that cause the stenoses, and the problem will recur. My hope in the second procedure is for a longer relief while I pursue the chronic infection angle.

Sorry to hi-jack, mtf. I'm very happy that you got another treatment, and felt that flow in your neck. That is great. Maybe I'll drop in on the Professor Doctor while I am in Europe next month. And you too! My wife is a citizen of Portugal, so maybe I can get a deal. Laugh.

Health and happiness!
My name is not really Johnson. MSed up since 1993
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Postby ozarkcanoer » Sun Sep 12, 2010 5:33 pm

It is interesting to note the length of time that the IR took in doing the procedures. I had the procedure done in the USA in Maryland and Dr H spent 3 hours looking at both my IJVs and my azygous. I suppose it might be argued that the Polish team has done so many procedures that time isn't the issue due to their greater experience. But maybe not. It will be great if the IRs (Sclafani et al) will be able to establish a standard protocol for the procedure over time so these variables can be accounted for.

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Postby mtf » Mon Sep 13, 2010 10:34 am

First of all, Johnson, you can write to me when ever you like. It's always a pleasure to talk to you.

I have to say that I have no improvements sofar, and I went to see and talk to the Prof today. We have cheked the stents in the iliac vein and they are still inplace but my left foot is still like a elephant feet.
The Prof. (and I) was very disappointed because he was waiting for improvements and faster.

In my opinion, there is no way they could see in Poland, during 20 min of my procedure, how my veins were. Just to treat the azigos, in Lisbon, they needed 2h (btw is very painful when they are balloning it). I had it all: narrowed veins, several stenoses, twisted veins, collaterals, etc.
That team is still learning but: they believe that without stents the veins will close again, they are afraid to put stents in the azigos and for now they only put stents in one of the jugulars (if needed).
That was a very old private hospital (150 years old) and the equipment it's not very new but the Prof. (has more then 30 years experience) and his team are so good....and I think that is the most important thing to have. He was the only one that "believed me" and read all the papers I've sent to him.
No other hospital in Portugal (that I know of) does this procedure.
So if you are coming near Lisbon, give me a call and I'll be happy to see you again together with family.
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