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

I left the operating room with slightly numb right hand and it stayed like that for a long time.

Dr. Sclafani, this is something I've noticed in a handful of accounts. A patient experiences numbness of the hand or arm that begins during the procedure and persists. It's been in at least three reports, I could find them with a good search. I suspect it'll show up in the registry data, but with what we have to go on now, what could cause this?

It must be vascular, not neurological, because of the timing? MS symptoms come and go, it could be a coincidence, but there is the similarity in different reports: new symptom, numbness in hand/arm, begins immediately in the OR, and persists.