Mutley goes to Poland, and returns home liberated.

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

Postby wonky1 » Wed Jan 20, 2010 3:49 am

:D Congratulations Mutley.

Really really happy for you!!!

:D :D :D
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Postby Robnl » Wed Jan 20, 2010 4:05 am

Congratulations with the baby!!

And also for yourself :D
Remember: balance, muscle power, coordination! Three things that were gone cause the MS. Train them.....it's possible now!!

rgds

Rob
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Postby xia » Wed Jan 20, 2010 6:33 am

Congratulations for being a father ...again :)
Thats great news about your improvements!!
I wanted to ask you who you got your travel insurance with?
Does it have to be a special one because of the procedure?
Many thanks
xia
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Postby Zeureka » Wed Jan 20, 2010 6:51 am

What lovely news and auguuuriii for your baby!

Just to inform you that got my doppler yesterday and met thousands of lovely people in Katowice! What a suprise to see Erika, and we visited Pepe and his wife Maria at the hospital (she is very well and you can see: overhappy! And Pepe also of course!). Then at Rolna we met other people from this forum: Ion and George (both were also there for a doppler test). We were all 3 diagnosed with CCSVI. My problem is an occlusion of the left jugular vein due to a pathologic valve.

Ion gets (maybe already got?) his procedure immediately today. For myself, we'll now see...Simka will check his Agenda - I had indicated interest already last year, so we'll see... And George will maybe also try to get follow-up in US.

I heard s.o. had question about hotel: I booked via booking.com since very easy with credit card and the reservation went perfectly well. I just called the hotel to inform them that would arrive very late (around 23:00) and I'm sure you can also call to ask specific other disability issues.

Steffi
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Postby costumenastional » Wed Jan 20, 2010 6:54 am

Steffi!!!!
How wonderful you have also been diagnosed with ccsvi!!!!!
That's huge news. I wish you my best.
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The Polish Club is growing

Postby Dovechick » Wed Jan 20, 2010 7:03 am

How wonderful to hear about your news and also about being able to meet others from this forum. I wonder who will be there when Ella goes next months. Good luck with the procedure...
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 Zeureka » Wed Jan 20, 2010 7:06 am

costumenastional wrote:Steffi!!!!
How wonderful you have also been diagnosed with ccsvi!!!!!
That's huge news. I wish you my best.

Yes, and the best news is: We'll most likely all be! :lol:

I even saw my occlusion on the screen (Simka showed it to me - he stopped the pics) and afterwards when looked at the doppler photos from Zamboni's research paper understood it even better - the blue (vein) and red filled circle (arterie).

I had at one point no blue colour (actually no colour at all - it was simply empty = black) in the left jugular vein and only like little moving blue spots/worms in another point next to it ! But no full blue-filling like one could observe in my right OK jugular vein! The arterie was always fully red.

That was the most convincing for myself - not only to believe + read about the link between MS and CCSVI: but to really see it !

Steffi
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Postby ClaireParry » Wed Jan 20, 2010 7:38 am

Congrats to you and your wife Mutley. Thats wonderful news, Claire.
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Postby pgm1 » Wed Jan 20, 2010 2:05 pm

Hi Mutley

Great news on everything,so happy for you :D

Pam :)
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Abs

Postby SandyK » Wed Jan 20, 2010 5:16 pm

Mutley. I congratulate you on the birth of your baby girl. I appreciate your updates very much. I look forward to everyone's. I am expecting to hear about your six-pack abs in a short while 8)
Diagnosed 1994, Self EDSS is 6.5
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Postby ErikaSlovakia » Thu Jan 21, 2010 1:38 am

Congrats to you and your wife Mutley! :D :D :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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Postby Pepe » Thu Jan 21, 2010 9:14 am

Hi Mutley,

:D :D :D Congratulation! :D :D :D
:D :D :D Wonderful news! :D :D :D
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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How to set up appointment in Poland

Postby Dawna » Thu Jan 21, 2010 12:11 pm

Mutley, congratulations on the new baby girl! How wonderful!

I have a question about setting up appointments. I wonder if you could let me know the process involved for setting up this operation? I already have paid for my private scans out here in Canada, MRVs, which show blockages in my veins, but no one treats it in Canada. So, is there a phone number to start the process? Or perhaps do we email the hospital .. or ?

Any help you can provide in this area would be so greatly appreciated.

Also, I thought that you said you had to pay cash for the operation, but later you said you paid by credit card? Maybe I'm mixing up two posts together, but if you could clarify that, it would be helpful to me. Thank you!

Dawna
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poland

Postby Dovechick » Thu Jan 21, 2010 12:44 pm

Dawn,
The problem at the moment is not the scans, dopplers etc but the procedure itself. They have a waiting list that stretches into 2011. The best way to proceed is to email as it is mostly the doctors who speak Engish and they are too busy to talk on the phone.

Dr Marian Simka
Tel: 0048 322120498
Email: mariansimka@poczta.onet.pl
You can pay by card and if you have problems on the day they will give you an invoice that you need to pay within 14 days which means you can do it when you get home.

Hopefully treatment will be available in other places before too long.
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 Dawna » Thu Jan 21, 2010 1:05 pm

Thank you for your reply... do you have to pay anything to go on the waitlist? (some type of deposit?) I had NO idea the wait list has gotten so big.. .wow.. another year. <sigh>
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