Poland part 2

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

Postby BBE » Mon Jan 25, 2010 5:45 am

In case of restenosis after ballooning do you have to pay again for the whole procedure incl. stents or just the extra costs?
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Postby Rokkit » Fri Jan 29, 2010 8:11 pm

Has anyone heard from Wonky1?
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Re: Many times

Postby Cece » Fri Jan 29, 2010 9:26 pm

fiddler wrote:Leetz, the price list has been posted MANY times in this forum: the cost for the assessment and procedure altogether will total between 6,000 and 7,000 US, depending upon the exchange rate on the day of the transaction.


Wasn't it raised to 10,000-11,000 now but including the hotel stay and transportation to and from the hospital?

It's moot, I suppose, if he's so far booked out that he's no longer taking bookings.

It is discouraging to hear about restenosis occurring (although in wonky1's case, good that he can get it redone and stented). Not sure when the average USer will have access to being stented. Angio seems like such an easier hurdle.
Last edited by Cece on Fri Feb 05, 2010 2:00 pm, edited 1 time in total.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby wonky1 » Sat Jan 30, 2010 8:18 am

Hi yall
I’ve just got back home.
This time I had a stent fitted in my left jug’ and the right one was ballooned.
My first procedure opened the inverted valve in my left jug’ but it closed again.
There was not a stenosis but a membrane on my right which was broken open and an inverted valve on my left which was turned back the correct way.
I’ll try and explain…….In the first procedure the leaves of the valve were pushed back so they faced the right way ( south ) that worked for a while but then the leaves of the valve closed tight, I guess they were trying to head north again.
This time I have had a stent fitted where the valve was so it will stay open. Apparently I don’t need a valve there.
I have also had re-ballooning of my right jug’, I’m not sure what’s going on with that. It was not suitable for a stent or one was not required.

My symptoms are much the same except my feet are warm. I have returned home to a freezing cold house and my nose is cold BUT I’m sitting here with just socks on my feet yet they are nice and toasty.
I didn’t get much sleep while away, I never do in hospital. Hopefully a few nights sleep in my own bed will bring on further improvements.

They are still a really nice bunch of people.
I was charged 10’000ZL this time and was able to pay with a visa debit card, I don’t know what that converts to yet.
I’ll let you know if there are any further developments.
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Postby Algis » Sat Jan 30, 2010 8:26 am

Thanks Wonky; take a good rest and be well :)
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Postby ozarkcanoer » Sat Jan 30, 2010 8:44 am

Thanks for reporting on your second adventure, wonky. I hope the months to come bring you steady improvements.

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Postby sunlounger » Sat Jan 30, 2010 8:44 am

Hi Wonky thats good to hear they where able to put a stent in there.
I hope your feeling those improvements again soon :D
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Postby crocky » Sat Jan 30, 2010 8:57 am

thanks for letting us know how you are - hoping that it all works out for you this time and look forward to your updates - S
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Postby acol » Sat Jan 30, 2010 10:08 am

Hi Wonky1

Pleased that you got yourself sorted and back home safely. I am now much more relaxed about stents and in the light of your experience and others, stents would now be my preferred choice. Rather than being anxious about stents I would be more worried about the procedure not lasting.
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Postby shye » Sun Jan 31, 2010 4:33 pm

thanks wonky for reporting so quickly-
and wishing you well with this new procedure.
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Postby wonky1 » Fri Feb 05, 2010 3:57 am

I can’t keep a lid on it anymore, I have to declare in best James Brown stylee



♪♪♫ I feel good ♫♪♪



10 days after the procedure

My fatigue is gone

My legs are stronger, I can get up stairs without resting half way.

There’s no sick giddy feeling when moving my head fast

Balance is better, I can stand at the sink or in the middle of the room without support.

My voice is stronger and clearer.

Spacticity in legs has gone

I can drive again, even enthusiastically

Night-time twitching has stopped.

General cognition has improved, I think quicker clearer and sharper.

Heat tolerance is much improved.

There’s no more choking on food or fluid.

Improvements were slower to kick in this time but they are definitely happening.
I was determined not to build myself up this time in case it all went away again but I can’t help grinning.

Hey, this really works!
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Postby Algis » Fri Feb 05, 2010 4:18 am

So good to read that you feel good :) (for whatever reason tho).

Keep it on Wonky!!! 8)
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Postby costumenastional » Fri Feb 05, 2010 4:26 am

Thank you for posting !!!

Continue to feel better and better please...
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Postby eve » Fri Feb 05, 2010 4:54 am

Great news - it just keeps coming today! Best of luck Wonky, thank you for updating!
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby acol » Fri Feb 05, 2010 4:58 am

Wonky 1

Absolutely wonderful news! Stories such as this tend to negate the placebo effect which critics of CCSVI often put forward. How on earth would you know that the blockage had reoccurred? If it was the placebo effect then you would surely expect the surgery to last more than a few weeks? I believe that this tends to show that the improvement was real and that when the blockage re-emerged this was also real and was noticed by you immediately.

Anyway, whatever! Super news! :D
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