Back from Poland

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

Back from Poland

Postby wonky1 » Mon Nov 30, 2009 10:23 am

Wow, words cant express what a wonderful experience Poland was, or my words cant, but here goes.

It turns out I didn't have stenosis but one jugular had a valve that was upside down, the other jugular had a membrane across it.
Both problems were congenital and have been cleared using balloons rather than stents. My Azygous vein was O.K.
Already my voice is clear and strong, last night there were none of the sleep interrupting spasms and my bladder has stopped going into spasm.
Despite having little sleep my mind is much clearer and faster.

All the team in Poland were very nice and professional too. I cannot fault them.

I will post any more improvements as they occur.
Anyone going soon, there's no need to be apprehensive, this is the best thing that has ever happened to me!

:lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol:
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Postby ozarkcanoer » Mon Nov 30, 2009 10:25 am

Absolutely wonderful wonky !!!

ozark
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Postby ClaireParry » Mon Nov 30, 2009 10:29 am

Wow, good for you. Sending my best wishes. Claire.
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Postby TFau » Mon Nov 30, 2009 10:31 am

Congratulations! That is wonderful to hear!

I noticed from other posts that you have PPMS. Did Dr. Simka say anything about a possible different presentation of stenosis between RRMS and PPMS. I guess what I'm trying to ask is, did he image your spinal column as well?

I hope that your improvements continue!
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Postby wonky1 » Mon Nov 30, 2009 10:37 am

Yes my spinal column was imaged, as I have PPMS I expected problems in the spinal column but it's O.K.
Maybe my exacerbations were really relapses. Misdiagnosis?
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Postby Rokkit » Mon Nov 30, 2009 10:39 am

Congrats wonky1! I'm glad balloon treatment could fix the upside down valve problem, that surprises me. But then I know nothing of such things.

It seems odd that Simka in the early going is finding valve problems but hardly any of Dake's patients have reported that. And then there's Zamboni's azygos.
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Postby sunlounger » Mon Nov 30, 2009 10:46 am

:D fantastic news wonky:D


I am interested to know is the Doppler test the only way to find faulty valves and membrane ?
or would an MRI with SWI show these kind of problems along with stenosis ?
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Postby LR1234 » Mon Nov 30, 2009 10:50 am

Hey Wonky,
Thanks for the reasurance, I am really nervous about the procedure but knowing you have come back (like Erika) with a positive experience that puts me at ease:)
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Postby wonky1 » Mon Nov 30, 2009 10:54 am

Hi Rokkit, yeh I was surprised that I had an upside down valve but then my name is wonky.

Hi Sunlounger my problems were visible on doppler and the MRV. One confirmed the other.
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Postby Mutley » Mon Nov 30, 2009 11:07 am

Simply brilliant news Wonky, here’s to a bucking the trend of MS progression and to all of the improvements sure to head your way.

All the best,
Mark.
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 Pepe » Mon Nov 30, 2009 11:19 am

Congrats Wonky!!!. I am very happy for you... First it was Rici with good news, next one was Erika with good news and now you with good news... Bravo!!! Bravissimo!!! All the best to everyone in the waiting list of Dr. Simka.
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Postby Ana » Mon Nov 30, 2009 11:52 am

Yes, congratulations from me, too! Good to hear that you're feeling already better. I visited Dr. Simka 2 months ago and I know that he is very nice and competent. Tomorrow they will do the procedure on a German in Poland.
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Postby mrhodes40 » Mon Nov 30, 2009 11:54 am

Wow I am so happy for your good result at this stage, :D
Wonky can you please make a tracking entry if you haven't already? :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby wonky1 » Mon Nov 30, 2009 2:13 pm

Thank you all for your good wishes.
I have just made a tracking entry, I didn't do it as per the preferred format
so will do it properly maybe tomorrow.
Please point out any obvious mistakes.
Thanks.
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Postby Sesj » Tue Dec 01, 2009 5:04 am

Dear Wonky,

congratulations!!

I'm glad you are doing so well.

I'll have an MRV in Poland the tenth of December, the operation the fifteenth.

Do you have problems with injecting the clexane? I tried to buy the auto-injector here in the Netherlands but it is not sold here.

Do you know if they sell it in Poland?

thanks!
Last edited by Sesj on Tue Dec 01, 2009 7:48 am, edited 1 time in total.
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