This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks for sharing this. And I am glad to know that you had no more attacks.

Frodo.

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

hi erika
i think free flowing blood drainage from your head is better than not having the procedure done don't you?

Erika-

It sounds like you were one of the first people treated by Dr. Simka for CCSVI. Do you think it would be a good idea to ask him if he has learned to do things differently? Perhaps a retreatment might give you more relief?

Erika--
I love your attitude, you are pretty terrific and your posts always make me smile. Happy anniversary. Go buy yourself some new jeans (Marie recently finished her CCSVI book, and I told her it was time to go shopping...."retail therapy" is the best!)

I still hope these new doctors looking at MS and CCSVI will find more answers...especially for those like you.
cheer

I'm in Poland at the moment waiting for a check up Doppler and more surgery if needed tomorrow. I'm in a real dilemma re stents now !?!

Claire

no boyfriend