1 year after my CCSVI procedure in Poland/Katowice.

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

1 year after my CCSVI procedure in Poland/Katowice.

Postby ErikaSlovakia » Tue Nov 02, 2010 11:58 pm

1 year after my CCSVI procedure in Poland (EuroMedic, Katowice).
I feel the same as before my procedure. My main problem is and was fatigue. It depends on how much action I do during the day. I am not worse, I do not have any new symptoms. I have not had any relaps. I had more energy only the first 33 days. I still take LDN. Never on DMDs. My stent if fine, without a clot, without intimal hyperplasia. My blood-drainage is very slow but it was zero before.
I DEFINITELY would do it again!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby frodo » Wed Nov 03, 2010 3:05 am

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

Frodo.
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Postby ErikaSlovakia » Wed Nov 03, 2010 3:22 am

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

Frodo.

I am aware it might be due to LDN.
I started with LDN in November 2008. I have not had any attack since.
I used to have 2 attacks per year before.
So, we do not know exactly...
No way I would be willing to live with blocked vein, especially from the brain!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Badger » Wed Nov 03, 2010 3:23 am

Hi,

that is a shame that you are no longer feeling any benefits.

I am in a similar position and I am going back to Poland on 18th November for my check up.

I would love for them to fix me but as I have a stent I do not believe that there is much that they can do.

:wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby esta » Wed Nov 03, 2010 8:33 am

hi erika
i think free flowing blood drainage from your head is better than not having the procedure done don't you?
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Rici » Wed Nov 03, 2010 8:54 am

Hi
Pull the same conclusions from this post:
mila77 wrote: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 ;-)
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Postby ErikaSlovakia » Wed Nov 03, 2010 9:06 am

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

Hi Esta!
Exactly. As I have mentioned in my previous post "No way I would be willing to live with blocked vein, especially from the brain!"
And that is the main reason why I definitely would do it again.
I do not believe it is healthy to live with no drainage.
It is still possible that my MS has been stopped. Of course I can not prove it, but ... we will see.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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another procedure

Postby Rosegirl » Wed Nov 03, 2010 10:09 am

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?
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Re: another procedure

Postby ErikaSlovakia » Wed Nov 03, 2010 10:40 am

Rosegirl wrote: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?

Hi Rosegirl!
I was the second. I met him in person a month ago in Slovakia in High Tatras during the Slovak Angiological Congress.
I had my first folow up in January. Ma drainage was very slow but we could not do anything. Prof. Simka has checked my jugular a month ago again - it was 11 months after my procedure. My jugular looked the same as in January. No clot, no hyperplasia but still very slow flow. Maybe it is not a problem at all. He cannot do anything about it I cannot do anything about it. Prof. Simka knows I feel the same. Maybe it has stopped my MS. Nobody knows. There is not enough data. To be honest I am happy I am not worse.
Some people tell me I was supposed to go there earlier. He assured me I was the first person who had contacted him.
So, I simply take my LDN, of course in case I feel worse or I have some problems I am in contact with couple of angiologists in Slovakia. Procedures are done even in this country. I am also in contact with a Czech doctor who does the procedures and I think I can always go to Katowice again as it is not far from my town.
I must be patient. I am also aware I might feel like now until the end of my life. I also understand I have MS and I might get worse.
I cannot complain - I got everything in my life I wanted.
Well, I should buy new pair of jeans but I hate shoppings! :lol:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby cheerleader » Wed Nov 03, 2010 12:16 pm

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ErikaSlovakia » Wed Nov 03, 2010 12:25 pm

cheerleader wrote: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 am serious now - it is really much easier to have a CCSVI procedure or to learn one more foreign language or finish an university than to go and buy jeans! I only write about it and I am already in panic. 8O

The doctors MUST find something else. They know they might meet me :lol:
Erika :lol:
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby Johnson » Wed Nov 03, 2010 3:16 pm

Hi Erika,

I agree with Cheerleader; you are always a pleasure to read.

I completely understand the shopping problem... You might try here - make your own jeans. You can even send them a pair of your old favourite jeans, and they will "clone" them.

They have a complete custom tailoring service.

Good luck, Lucky Girl!
My name is not really Johnson. MSed up since 1993
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Postby ClaireParry » Thu Nov 04, 2010 1:09 am

Hi Erika,

Thanks for the update. Glad you haven't had anymore relapses - that is definitely something.

xxxx - that is interesting. Slow flow still being an issue after liberation is maybe a factor for many people that remain stable rather than improving. Another point that shows there are many factors at work here.

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
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Postby ErikaSlovakia » Thu Nov 04, 2010 1:57 am

ClaireParry wrote: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

Good luck in Poland! I do not know what is better - to stent or not to stent.
I just can tell you I have had no problems with my stent so far. I am much more scared of MS than of a stent. I know it is easier for me - I have no children, no husband, no boyfriend and I live in a country where they already do the procedures. Poland is just next door. Moreover I am a "lucky girl" :lol:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Postby Algis » Thu Nov 04, 2010 2:53 am

no boyfriend


Is there only blind boys in Slovakia 8O
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