Sunlounger in Katowice 13th Jan

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

Postby Greenfields » Tue Jan 12, 2010 8:40 am

Awesome! keep us posted.

Brian
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Postby crocky » Tue Jan 12, 2010 9:15 am

so excited for you Stefan,and so happy the English guy had got your situation wrong - as everyone here, just looking forward to hearing all about it - Suzanne
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Postby dunkempt » Tue Jan 12, 2010 10:02 am

While you are there, could you ask dr Simka when the March/April dates will be send to de patients planned for these months?


yes, good luck on the 13th, but oh, could you please?

we don't want to bother him, but our lives are void and without form until we know... or at least know when we might know...

good luck again, good luck!

-d
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Postby Dovechick » Tue Jan 12, 2010 12:59 pm

This just demonstrate that expertise is needed to detect and interpret the the results of the tests. I shall remember your story when people tell me of the failure of doctors to detect a problem in their veins. Good luck tomorrow, we are all rooting for you. Here and in the other place in UK.
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 annad » Tue Jan 12, 2010 1:33 pm

Good luck!! You didn't meet the little 'ole lady by accident :)
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Postby Johnson » Tue Jan 12, 2010 4:00 pm

Good news, sunlounger. I like the story of the l'il old lady. It is a good omen, by any measure.

Perhaps instead of asking Dr. Simka about this month or that, you might inquire that if we received the e-mail that said we were on the waiting list for a certain month, we will definitely be getting treated around that time, and maybe when we can hope for a sure date.

He wrote to me in mid-December, saying I was on the list for May, and that he would e-mail with more specifics in 1-2 weeks. That was four weeks ago now, and I wonder if I am too lackadaisical. It's hard to not e-mail him, and to be unsure. The squeaky wheel might get the grease, but when all the wheels are squeaking, it is tempting to scrap the car.
My name is not really Johnson. MSed up since 1993
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Postby Brynn » Tue Jan 12, 2010 4:26 pm

We will hold our breath for you. Have a great procedure! Blessings, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Mutley » Wed Jan 13, 2010 1:40 am

Wow, a great story Sunlounger and such a positive omen with the old lady too.

Best of luck with the procedure, hope it all goes nice and easy today.
All the best!!
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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I'm also on the May waiting list for May, Soond x

Postby Olive » Wed Jan 13, 2010 3:50 am

Johnson wrote:Good news, sunlounger. I like the story of the l'il old lady. It is a good omen, by any measure.

Perhaps instead of asking Dr. Simka about this month or that, you might inquire that if we received the e-mail that said we were on the waiting list for a certain month, we will definitely be getting treated around that time, and maybe when we can hope for a sure date.

He wrote to me in mid-December, saying I was on the list for May, and that he would e-mail with more specifics in 1-2 weeks. That was four weeks ago now, and I wonder if I am too lackadaisical. It's hard to not e-mail him, and to be unsure. The squeaky wheel might get the grease, but when all the wheels are squeaking, it is tempting to scrap the car.
:lol: :lol: :D :D
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Postby Pepe » Wed Jan 13, 2010 3:52 am

Good luck!!!

Best wishes!!!
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Waiting list for May!

Postby Olive » Wed Jan 13, 2010 4:03 am

I'll post an actual message rather than a quote!

I also wrote to Dr Simka in December and got put on the May waiting list round about the same time as "cockrel"???

I wrote to him again to ask if I was on for a scan only, or also an op as I'd have to wait out in Poland. He got back to me to say if both would take place and I'd hear in due course.......felt a bit guilty......I mean when can you guy get time to read his mails let alone reply to them!!!

I'm going to wait a month or so longer for this reason.
Beleive they're doing 4 ops per day, and they have 2 clinics so chugging through the MS patients!

I'm part of a UK group on facebook if anyone fancies joining:
MS-CCSVI-UK

A VERY proactive group, achieving CCSVI information in the UK!!
Well worth checking out

Soond, RRMS since 1993, North Wiltshire
DYING TO HEAR STEFANS NEXT NEWS POST-OP!!! :)[/u][/b]
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Olive

Postby Dovechick » Wed Jan 13, 2010 4:07 am

Hi Soond, I like your username Where is Popeye?
It is news to me that they have two clinics doing the surgery... I knew they had two doctors trained in the tests.
Interesting if they are, they may be able to get more patients done...
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 sunlounger » Thu Jan 14, 2010 8:15 am

Hi all,

Just back from having the procedure yesterday and feeling pretty good considering I have had zero sleep.

I had angioplasty done on my left jugular with a 10x40mm balloon and will be coming back to Poland for a Doppler to check that this has held up in about 3-6 months.

Who knows maybe by then there be at least one person could carry out the Doppler testing correctly in U.K . :?
As far as the procedure it was totally pain less and I only feel a slight sensation when they did balloon but nothing really.
On average the other 3 patients and my procedure took 60-90mins each.
Seems like they are doing 10 patients a week at present but not sure because of the obvious demand this will increase.
I’m sorry I did not get a moment to talk to Dr Simka about why people are not get definite dates emailed when they should have been.
They have no intention of stopping these treatments so they must be just waiting for definite times and dates before sending out future emails.
There would be no harm at all to phone Dr Simka and ask how long he thinks this will take.

Just like to say a big thank you to thisisms and Erika who inspired me to contact Dr Simka 2 days after her procedure last year.
A great thread about Poland came from Mutley http://www.thisisms.com/ftopict-8942.html and made the whole trip very easy and stress free for me thanks.

I hope to be able to report some improvements soon.

Sunlounger :D :D :D :D :D
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Good news

Postby Dovechick » Thu Jan 14, 2010 8:41 am

Hi Stefan good to hear you came through OK, thanks for the information and I look forward to hearing how you are progressing...
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 CRHInv » Thu Jan 14, 2010 9:05 am

Wow. This is great. I love the story about the older lady!
Tell us! Tell us! How do you feel?
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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