This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi guys,

Maybe some of you remember the story of my CCSVI treatment, but for those who dosnt I will tell it again.

My MS started 12 years ago at the age of 18 with optic neuritis in the right eye. I was not diagnosed at that time and I had next 10 years of my life symptom free, then 2 years ago I had my second mild relapse - some numb hand and feet but nothing extreme. My MS was developing quite slowly.

4 months ago in April I had my CCSVI Treatment done in Euromedic clinic in Katowice (Dr Simka team). I had no symptoms before procedure and I did it as a precaution - to avoid future relapses.
I left the operating room with slightly numb right hand and it stayed like that for a long time. Then I started developing some numbness in my right leg. So I went back after 2 months for a check-up with dr Simka who after 10 min ultrasound assured me that everything is ok with my blood flow and there are no angiologic reasons for my numbness.
So I came back to Warsaw and decided to wait and give it a time. In the meantime I developed another numbness in the torso on both sides and in both legs. After a month it was going away and another symptom was starting.

So I decided not to wait any longer and called AMEDS clinic to ask for the second opinion. Yesterday I went to their clinic for a battery of tests (ultrasound, MRI, MRV, EKG, Blood tests, Neurologic exam). And today I went there for the results. It turned out that I developed thrombosis in the stent area. Originally the stent had 14 mm diameter and now it is just 4 mm wide and my MRI showed 3 active leasions. I will be on blood thinners starting tomorrow and after a month we will repeat the ultrasound and see if it is posspible to reballoon the stent. Right now it is too dangerous to do it.

I would like to express here my grattitude to the AMEDS team, especially dr Agnieszka who took great care of me and had the time to sit and answer all my questions, discuss options for treatment etc etc.
All the tests at AMEDS were executed thoroughly and all the results were given back to me. To the contrary I do not have my 10 min Ultrasound results from Euromedic so the doc at AMEDS did not have anything to compare it. I realize that docs From Katowice have more experience bec the executed more treatments so far but when I was there I felt like i was in a factory "one done, next please".
Maybe it sounds like AMEDS advertisement but it isn't. Those are just my impressions comparing those 2 Polish clinics.

I will update u about my thrombosis development in this plot later on.
Thanks for listening

Thanks for posting, Mila. I hope things turn around for you soon

Thank you for sharing this...definitely a cautionary tale...hope now that it's caught you will be feeling better soon.

If I may ask, did the stent get thrombosed even if you were on blood thinners?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I was on blood thinners for 7 days (injections), on antikagulants for 2 months and now on aspirin for life. And I guess by all the negative sypmptoms I was feeling during those 2 months, that yes it started getting trombosed even when I was sill on antikagulants.

Without being too insensitive (hopefully) this brings to light two important things:

1. It makes it much harder to believe that CCSVI is all placebo unless you went into the procedure with the deep belief that you would feel worse after it.
2. The treatment methods that we have right now are not very good. With the amount of restenosis/thrombosis/etc. that happens I hope the doctors that are working with CCSVI can find more effective treatment options in the future.

mila, thanks for the info. your situation is not what we want to hear but what we have to hear. i hope that these dr.'s can get something going that they can somehow put your procedure and results and what was done to undo problems etc. in a database because i feel too that some are not giving each patient enough before and after time and you can kinda be in a limbo and that's not a secure place to be. a lot of it has to do with supply and demand too. places that are treating are getting bombarded. hopefully things will change soon and the treating dr.'s and patients can all be treated and followed and kept track of without the fear of getting shut down etc. and they can spend more time listening to us and everything else it will take to solve this. myself, this is the first time i feel some dr.'s are listening "i mean the dr.'s that are into ccsvi"and we have to somehow keep them listening even if something we feel we need to tell them may not seem medically in tune with the ccsvi treatment because look at the picture here-not long ago it was all about auto immune so i think they have to listen to us. i'm glad you sought and was able to find help and i too do not want to see the production line thing going on. please keep us posted. wishing you the best.

Sorry to hear this. I would have hoped it couldn't happen while on the anticoagulants.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I had a Katowice stent trombosed despite Plavix and Aspirine.

All what I had gained was lost.

Stent opened up by Belgium doc and now on "rat poison" and under tight control with twice weekly blood tests.

Benefits of open veines have returned.

see also http://www.thisisms.com/ftopict-11907.html

MIla77
so sorry to hear of this--sending lots of light.

I agree with Motiak

Hi. I have a similar situation. i had 3 overlaping stents put into my ILJV and now, even though i was on heparin and warfarin, there is a clot. There is no flow in the ILJV. I am not sure what to do. Does anyone know of the risk of going in and havingclot-busting drugs put directly into the clot? I am in pain and the benefits that I had when the vein was open - and they were very good improvements - have all gone away.

Alongside Peaches' posting on the same matter, this is something that no one seems to know the answer to? TBH is making me very concerned about agreeing to any stents again, should the situation arise!

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28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Mila, thanks to you and Peaches (on another thread) for posting about your thrombosis. As Blossom said, this is not what we want to hear, but what we need to hear.

I'm so sorry this has happened to you and to others. My MRV revealed a possible earlier thrombosis in my signmoid sinus in my brain. Learning of your experience and others have helped me to truly appreciate some of the risks of treatment.

As a result, I have decided not to travel outside of Canada for treatment. It was a tough decision to make, but I think it is the correct one considering reports of clots from you and others.

I hope you are able to resolve this. Please keep us informed.

perhaps it has been a "gift" to me to have had a moratorium from treatments. I believe the time has enabled me to reinforce my belief that stents have inherent risks, that might not be worth the effort

of course we need to get mid-term and long-term outcomes from stents to get a clearer idea.

But when I resume, i will not put in stents. period.

someone else, with patients willing to try them, can do that investigation.

Thanks for that insight Dr. S. Great to have you back!

Dr. Sclafani and all--
as you know, veins can clot even without a stent. The act of angioplasty and ballooning has inherent risk of damage to the endothelial lining, and stenosis and clotting can occur without a stent. This is a real risk, and something that needs to be fully disclosed and discussed with patients prior to treatment.
I am so sorry to read about these events, but we're coming up on 3-6 months since patients are treated, and this is the time when the endothelial thickening happened in my Jeff and a few others.

Hang in there, Mila and others reporting the same. Good thoughts going out-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS