Dr Simka (Poland)

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

Postby Mutley » Sat Dec 12, 2009 7:04 am

Hi Dovechick,

I’m not sure about hiring a car but I’ve done a bit of research about accommodation and came up with this. I’m in a wheelchair so stairs are a big no no for me. It’s not the cheapest hotel out there but I’m willing to pay a little bit more to avoid potential issues with stairs, restaurants and language barriers etc. The hotel is here. I fly out on Tuesday so will have much more news when I get back.

Dr Simka said that I just needed to bring my pyjamas but I’ve got my currency, passport, phrasebook, scooter and iPod. So I think I’m almost set :D
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Edser » Sat Dec 12, 2009 7:39 am

Good afternoon TiMS,
Day 10
I'm sleeping much better :D I'm going to bed around 11pm-11.45pm.I'm sleeping straight true untill 8.30pm-9pm.No rset durning the day(SLEEP)I'm going to the toilet MUCH less.Myself & Anna are back sleeping in the same room.My jumping in my sleep has stopped,so i've cut back on my LIORSEL tablet's,from 5 tablet's-2 tablet's per day.The pain's in my chest have stopped.I was paranoid about this as my Dad died from a heart attack 22Yrs ago.My heart is perfect :D & was allway's perfect :D
Slainte Mo Chara
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Edss Before Procedure:6
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hotels and stuff

Postby Dovechick » Sat Dec 12, 2009 7:40 am

Hi Mutley,
Thanks for this information and I look forward to hearing how you get on. I'll be hanging on every word of those who go before us. I do hope for all our sakes that you have a positive result from your visit.

Can you tell me how long you plan on staying after your procedure?

Good luck Mutley I'll be thinking of you on Tuesday and for the next few days.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Mutley » Sat Dec 12, 2009 7:56 am

Thanks Michele, I'm just having tests at the moment with a small chance of a procedure if they find something wrong with my veins, and IF (a big IF) they can fit me in. I'm scheduled for Doppler on 15/12 and MRV 16/12. I imagine that I'd need to stick around for an extra few days if they liberate me, but that's just based on what I've read from other people's visits.

Best of luck for your trip too, and to anyone else starting this journey :D :D
Last edited by Mutley on Sat Dec 12, 2009 8:45 am, edited 1 time in total.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Re: CCSVI

Postby Mutley » Sat Dec 12, 2009 8:00 am

Edser wrote:Good afternoon TiMS,
Day 10
I'm sleeping much better :D I'm going to bed around 11pm-11.45pm.I'm sleeping straight true untill 8.30pm-9pm.No rset durning the day(SLEEP)I'm going to the toilet MUCH less.Myself & Anna are back sleeping in the same room.My jumping in my sleep has stopped,so i've cut back on my LIORSEL tablet's,from 5 tablet's-2 tablet's per day.The pain's in my chest have stopped.I was paranoid about this as my Dad died from a heart attack 22Yrs ago.My heart is perfect :D & was allway's perfect :D
Slainte Mo Chara
Edser & Anna


That's wonderful news, I'm very very happy for you both! It's brilliant that you now don't have the worry of the chest pains either. Best Wishes!!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Re: CCSVI

Postby Edser » Sat Dec 12, 2009 8:15 am

Thank's very much Mutley most appreciated.
Slainte Mo Chara
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Last edited by Edser on Sat Dec 12, 2009 8:43 am, edited 1 time in total.
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Postby Ruthless67 » Sat Dec 12, 2009 8:33 am

Hi All,

Signed on to TIMS this morning and read your posts. Ya Hoo, your all going to Poland!! I'm so happy for you and hope you all are liberated and that "icing from the big cake in the sky" falls down on each and every one of you as you recover. This is so exciting, no matter if your having the procedure or just tagging along, hanging on every post. Since when have we as MS patients ever had such hope?

Lora
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Postby Mutley » Sat Dec 12, 2009 9:00 am

Ruthless67 wrote:Since when have we as MS patients ever had such hope?

Lora


I'll drink to that Lora! Isn't it great that we now all seem to have hope :D :D
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby ClaireParry » Sat Dec 12, 2009 9:12 am

Wow, isn't he busy! Bet he's in for a good christmas lol!!

I think the man's worth he's weight in gold.

He's booking me for tests in March, although no space for procedure until September he says. He said they can't cope with demand!! I bet!!

I don't care, at least the ball is rolling.

Mutley, I'm so excited for you and can't wait to hear back.

When we're all 'done' lets all meet somewhere, personally I'd love to come over to the US and celebrate big style!!

Much love to you all

Claire x
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Happy for you

Postby fiddler » Sat Dec 12, 2009 9:26 am

Hi Michele,
Good news for you and Ella - I don't feel jealous at all, just happy that we all will have this real possibility of stopping the progression. Besides, this gives me more time to get ready and to learn about treatment procedures and travel and accommodation details. Thanks to everyone who is posting these, especially since I know that you may have done so in other threads in the past... there are just TOO many threads to follow and keep straight in my head!
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby ozarkcanoer » Sat Dec 12, 2009 9:35 am

I am happy for everyone who is going to Poland to be tested and treated by Dr Simka. But I am perturbed that no one else but Dr Simka is treating CCSVI on a regular basis. Dr Dake has stopped to do a clinical study, and that is good. I have heard no news that Dr Zamboni and colleagues are doing "The Liberation Procedure" in Italy. When are other interventional radiologists going to step up to the plate !! Are they all just very cautious or just stunned by the CCSVI hype ? Or are they affected by the negative press or negative academics or negative MS experts or the risk of litigation ?
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Postby Edser » Sat Dec 12, 2009 9:47 am

Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Too new

Postby fiddler » Sat Dec 12, 2009 9:55 am

Hi ozarkcanoer,

My guess is that this is all too new for the medical community. I informed my urologist on Nov 26th... he had never heard of it, even though he has many MS patients. My GP had already had a half a dozen MS patients call in crying for the treatment, even though they hadn't done any real research on it (so he just saw it as the latest scam, fake miracle-cure). Only when I went to see him and explained what I had learned (mostly in this discussion group,, thanks to all you pioneers, by the way) did he sit up and take notice: "I've got to learn more about this!" he said.

If people go in armed with the best information (just the facts, not fantasies), we are more likely to turn things around. While my GP explained that the medical community needs to look at these things carefully and was glad that I understood that, he also sympathized and understood when I said that I can't afford to wait for the trials to be complete. Since I could be in a wheelchair in a year or two, even if the liberation treatment stops the progression, it won't undo the damage already done and the longer I wait, the more damage there'll be.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Edser » Sat Dec 12, 2009 9:59 am

I just e-mail my Neuro with this link :D
http://www.gopetition.com/petitions/the ... edure.html
Slainte Mo Chara
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Never judge a Book by it's cover.
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Postby ClaireParry » Sat Dec 12, 2009 10:05 am

I've just signed that petition Edser, but can we do one of those Government petitions for the UK?

I'd happily sort it if it's possible...
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