Erika`s procedure in Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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markofc
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Post by markofc »

Now I understand You very well Erika
I wanted to leave Poland in 1989 too.
Austria too, but I was in Army.
As I have completed it was not communism in Poland.
Now I happy that I lives here and it thanks that treatment is by dr Simka for We.
ErikaSlovakia
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Post by ErikaSlovakia »

markofc wrote:Now I understand You very well Erika
I wanted to leave Poland in 1989 too.
Austria too, but I was in Army.
As I have completed it was not communism in Poland.
Now I happy that I lives here and it thanks that treatment is by dr Simka for We.
Yes, but until it gets lets say normal here it takes at least another 25 years. It affects healthcare as well.
Until people/doctors learn to think little bit more normal it takes many years. I know very good "western" countries are not without a problem but at least little bit more normal.
Many doctors go abroad from Slovakia.

England listen :D There is one young neurologist in my town, she was once in England working as a doctor, in one year she goes there again. She is really well informed about CCSVI and the procedure...
It is the only neurologist in Slovakia who knows about this. As she speaks good English she was able to read all Zamboni´s papers.
So I am "giving" training :D to a doctor for England. :D
Good for her!
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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Post by ErikaSlovakia »

My first step back.
This is my day 34.
I know this is normal, so I am not scared, I feel more drunk again, my fatigue is worse - but not extremly, I feel sleepy.
I do not have motivation to do anything. I am weaker.
It is not the Clexane it is my MS.

On the other hand - it is very ugly weather here- rainy, sky is dark - even healthy people feel it.

Let us wait for a better day :D
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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Algis
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Post by Algis »

You may have been too active while you shall rest : it is only 34 days after you changed your vascular flow pattern and all that is associated.
Dont pull too much on the wire :) Take a rest :)

Courage !!
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seeva
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Re: Dr Simka (Poland)

Post by seeva »

HI EREICA CONGRATULATION AND ALL THE BEST. PLEASE LET ME KNOW THE DETAILS ABOUT SEEING DR SIMKA IN POLAND REGARDING MY M.S
REGARDS
SEEVA :roll:
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Re: Dr Simka (Poland)

Post by ErikaSlovakia »

seeva wrote:HI EREICA CONGRATULATION AND ALL THE BEST. PLEASE LET ME KNOW THE DETAILS ABOUT SEEING DR SIMKA IN POLAND REGARDING MY M.S
REGARDS
SEEVA :roll:
Hi Seeva!
What exactly do you want to know?
If you want to know all details, read this thread.
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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Post by ErikaSlovakia »

Better days again?
I had 4 days with fatigue again.
Today I did not have any fatigue at all.
I knew it would be better and worse I just do not know what and when is going to happen...
So I am there where I was 5 days ago which is good.
Of course I do not know what is going to be tomorrow or in one year.

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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ClaireParry
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Post by ClaireParry »

Thanks Erika,

It's helps to know the good and the not so good, grounds us a little I think. Not that it puts me off!!

Claire
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Post by ErikaSlovakia »

ClaireParry wrote:Thanks Erika,

It's helps to know the good and the not so good, grounds us a little I think. Not that it puts me off!!

Claire
Hi Claire,
yes, it is normal after the procedure to feel better than to feel worse again and than better again.
I did not feel the fatigue for the first 33 days.
Of course it depends a lot on your problems you had before the procedure.
Just take it easy!
I know it is easy to say for me. I am 37 days after the procedure and sooo many people are waiting for it.
I am sorry I can not do more. I can only report you my feelings.
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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ozarkcanoer
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Post by ozarkcanoer »

Erika, Maybe you are getting some new stenosis like Dr Zamboni found with some of his patients ? Are you scheduled for a follow-up scan with Dr Simka ?

ozarkcanoer
Rokkit
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Post by Rokkit »

ozarkcanoer wrote:Erika, Maybe you are getting some new stenosis like Dr Zamboni found with some of his patients ? Are you scheduled for a follow-up scan with Dr Simka ?
Dr Zamboni only had problems with re-stenosis in veins that had been ballooned. Erika has a stent.
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Post by ErikaSlovakia »

Rokkit wrote:
ozarkcanoer wrote:Erika, Maybe you are getting some new stenosis like Dr Zamboni found with some of his patients ? Are you scheduled for a follow-up scan with Dr Simka ?
Dr Zamboni only had problems with re-stenosis in veins that had been ballooned. Erika has a stent.
Thank you Rokkit,
yes I have a stent and yes, Dr. Zamboni had 47% restenosis in jugulars because he was doing only balloning. (he had 4% restenosis in azygos)
He had to choose some very safe method for his study.
I asked Dr. Simka to tell me what is better ( I was hoping he says stent), he said stent because of this reason.
I have my follow up in January I still do not have exact day. I will e-mail Dr. Simka in January to ask for some appointment.
I think I am doing pretty well. No pains in my neck - I did not and I still do not feel my stent.
It is only my day 38. I takes time. All other improvements remained I only had 4 days fatigue.
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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CureIous
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Post by CureIous »

Always good to hear your reports and your ebb and flow progress Erika. Hopefully much better days ahead than even now. I worked with a guy from Poland once named C. Pasternak, he was a bit younger than me but talked about how they used to throw rocks at Russian soldiers sitting on their tanks. Some of his stories amazed me. You are brave just because you did that which was hard for YOU, that might have been easy for someone else. Look forward to hearing more of your progress. :)
Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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crocky
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Post by crocky »

Hi Ericka

I am always following your progress on here and was worried to hear that you had suffered the dreaded fatigue again, so glad that it has improved a bit.
Like everyone on here, I really appreciate the way you keep in touch so much with your progress - you are a great inspiration to many of us and I hope to follow in your footsteps next year.
Suzanne
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Post by ErikaSlovakia »

Day 40 report.

I am 40 days after my procedure in Poland.
Days 34-37 were not very perfect because my fatigue came back. It was not too bad but I must report I had fatigue.
The weather here was awful. I was also maybe simply tired after many long days at the internet.

Well, it is gone anyway. I still have 20 Clexane injections. I do not have any problems because of Clexane. I take 150 mg of Aspirin as well. I do not have any surprising improvements anymore.
I think I just need a lot of time.
My vision on my left eye is as bad as before. I still feel brain fog.
I still have the feeling of having 1 kg of sand in my head.

All other improvements remained - almost no fatigue, much more energy, no fast heart beating at all. Heat tolerance is much, much better but I still notice it on even worse vision on my left eye. Walking is easier, balance is better. I am sure I do not have to catch for my breath - very seldom. My bladder is not that urgent. I am still weak - well I think I will have to work on my muscles, but slowly, step by step.
I definitely do not feel worse.

Thanks to inclined bed therapy I do not have my strong headache in the morning, I still have mild or middle headache sometimes.
I am still often scared but not so much as before.
I had very hard year - finished my University in June, big and long problems with social insurance company, busy because of the procedure. It is time to rest more.

Question?
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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