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 9:23 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:
User avatar
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm


Postby ozarkcanoer » Mon Nov 30, 2009 9:25 am

Absolutely wonderful wonky !!!

User avatar
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby ClaireParry » Mon Nov 30, 2009 9:29 am

Wow, good for you. Sending my best wishes. Claire.
User avatar
Family Elder
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Postby TFau » Mon Nov 30, 2009 9:31 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!
User avatar
Family Elder
Posts: 222
Joined: Tue Nov 24, 2009 3:00 pm

Postby wonky1 » Mon Nov 30, 2009 9:37 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?
User avatar
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm

Postby Rokkit » Mon Nov 30, 2009 9:39 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.
Family Elder
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

Postby sunlounger » Mon Nov 30, 2009 9:46 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 ?
User avatar
Family Elder
Posts: 110
Joined: Wed Nov 04, 2009 3:00 pm

Postby LR1234 » Mon Nov 30, 2009 9:50 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:)
Family Elder
Posts: 1516
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby wonky1 » Mon Nov 30, 2009 9:54 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.
User avatar
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm

Postby Mutley » Mon Nov 30, 2009 10:07 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,
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Family Elder
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby Pepe » Mon Nov 30, 2009 10:19 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.
User avatar
Family Elder
Posts: 141
Joined: Sat Oct 17, 2009 2:00 pm

Postby Ana » Mon Nov 30, 2009 10:52 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.
User avatar
Family Member
Posts: 93
Joined: Mon Sep 07, 2009 2:00 pm
Location: Germany

Postby mrhodes40 » Mon Nov 30, 2009 10:54 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... This is my regimen thread Read my book published by McFarland Health topics
User avatar
Family Elder
Posts: 2067
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby wonky1 » Mon Nov 30, 2009 1:13 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.
User avatar
Family Elder
Posts: 113
Joined: Thu Oct 08, 2009 2:00 pm

Postby Sesj » Tue Dec 01, 2009 4:04 am

Dear Wonky,


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?

Last edited by Sesj on Tue Dec 01, 2009 6:48 am, edited 1 time in total.
User avatar
Getting to Know You...
Posts: 12
Joined: Tue Nov 03, 2009 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service