Introduction and an idea.

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

Introduction and an idea.

Postby danegirl » Wed Dec 02, 2009 5:01 am

Hi all. I feel like I know you all, as I have been a lurker for a long time. I am a Danish PPMS'er (I think), 56 years, female. Dx'ed in 1997. In wheelchair, can stand with support for 3-4 seconds.

I have been reading here for some time, am considering going to Zamboni, if I can find the money. My impression is, he "only" does the ballooning procedure, not stents. I am waoried about stents, they don't seem to be safe. Some feel pain, and one has wandered off to the heart.

Has anyone had the idea, that, instead of a stent, a piece of vene from some part of the body could be transplantet to the jugular venes and replace some of the stented ones? Hmm, I wonder if that would be possible.
Yes, this would of course mean surgery with anasthetics, but in my mind it would still be safer that stents wandering off.

OK, I'm off now. I had great difficulty joining, but have finally managed. Excuse my english, it is a foreign language for me 8O

cheers,
Lisa
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Re: Introduction and an idea.

Postby ErikaSlovakia » Wed Dec 02, 2009 5:48 am

danegirl wrote:Hi all. I feel like I know you all, as I have been a lurker for a long time. I am a Danish PPMS'er (I think), 56 years, female. Dx'ed in 1997. In wheelchair, can stand with support for 3-4 seconds.

I have been reading here for some time, am considering going to Zamboni, if I can find the money. My impression is, he "only" does the ballooning procedure, not stents. I am waoried about stents, they don't seem to be safe. Some feel pain, and one has wandered off to the heart.

Has anyone had the idea, that, instead of a stent, a piece of vene from some part of the body could be transplantet to the jugular venes and replace some of the stented ones? Hmm, I wonder if that would be possible.
Yes, this would of course mean surgery with anasthetics, but in my mind it would still be safer that stents wandering off.

OK, I'm off now. I had great difficulty joining, but have finally managed. Excuse my english, it is a foreign language for me 8O

cheers,
Lisa

Hi Lisa,
I know Dr. Simka also does ballooning. He does open vein surgeries as well - it is his proffession. I know about one patient from Slovakia she would probably have the open surgery and she needs part of her own vein from leg. I do not know any other details.
Just do not forget Dr. Zamboni had 47% of restenosis.
Every case is special. It is better if you contact Dr. Simka or somebody you choose.
Good luck!
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 IbRiz » Wed Dec 02, 2009 6:14 am

Hi danegirl

I'm danish as well, and I am going to Poland to see dr Simka this saturday. There is a direct flight from Malmø to Katowice - so it's really easy (plus cheap!) to get there.

Having seen the tv-documentary and the related material at http://w5.ctv.ca - it would seem that dr Zamboni is very busy indeed.

I've also heard that dr Simka is quite busy, but I think he is still replying to mails (although you may have to wait for some days).

Christian
RRMS Dx'd 2009
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Postby danegirl » Wed Dec 02, 2009 9:49 am

Hi Christian. I have sent you a private mesage I hope you see it and answer. If you are going to Poland on saturday - GOOD LUCK!! Please keep us (and me) posted.

luck from
Lisa
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Location: Denmark


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