Calling Dr Simkas patients.........

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

Postby ErikaSlovakia » Wed Jan 06, 2010 12:39 am

simone wrote:What do you do for follow up if you go to Poland for treatment?
Simone

I am not sure I understand the question well enough. I have my follow up this month. I will have Doppler and MRV. Maybe OCT - vision test.
Is this answer enough?
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 crocky » Wed Jan 06, 2010 6:42 am

Hi guys

I have April outlined for my visit to Poland aswell - It seems no one on the April list has been given firm dates yet - what about March?
The need for patience is nearly killing me and the rest of you too I imagine!
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Postby pgm1 » Fri Jan 08, 2010 7:50 pm

Hi crocky

My appt is for March,still no e-mail from Dr.Simka
This is driving me crazy lol!

Pam :)
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Postby dunkempt » Fri Jan 08, 2010 8:24 pm

No, still no date for March here. And you know, Dr Simka might have other things to do, like, oh, travelling the world to clue in other doctors - so I won't complain if March doesn't work out at all.

But it really aggravates my nervous habits. Or at least, the obsessive- checking-of-the-CCSVI-forum habit.

-d
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Postby tipsyturtle » Fri Jan 08, 2010 8:49 pm

dunkempt wrote:No, still no date for March here. And you know, Dr Simka might have other things to do, like, oh, travelling the world to clue in other doctors - so I won't complain if March doesn't work out at all.

But it really aggravates my nervous habits. Or at least, the obsessive- checking-of-the-CCSVI-forum habit.

-d


I think lots of us relate...
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visit to poland

Postby Dovechick » Sat Jan 09, 2010 2:05 am

Ella is going on the 17th February.
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 Robnl » Sat Jan 09, 2010 2:10 am

The point with not knowing the dates.....you have to book a hotel, i think booking less than 4 weeks before the exact date will become troublesome :(

Rob
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Postby crocky » Sat Jan 09, 2010 2:31 am

thanks for clarifying the situation - seems none of us for either March or April have dates yet - if we are all in the same boat then I guess we all have to be patient!
I'm working on it!!
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Postby ClaireParry » Sun Jan 10, 2010 11:43 am

Just FYI......

I mailed Dr Simka today. I was getting a bit concerned (maybe slightly neurotic!). I read on the board that he is due in the US in Feb? I was getting concerned.........

So I wrote to say that I'd booked my flights etc and I would be over on the 8th Feb for diagnostics on the 9th and he said great, see you then. I feel so much better. I bet the poor man is snowed under with us! I wonder if he has ever worked so hard!

Best Wishes

Claire
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Postby lilaclomax » Mon Jan 11, 2010 12:33 pm

My appointment is for the 16th March.. hopefully most of us we see a friendly face out there :D
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Postby pgm1 » Mon Jan 11, 2010 12:55 pm

Hi lilaclomax

If you don't mind me asking when did Dr.Simka give you a date,this is very exciting! i have been waiting for three weeks now and it seems like forever, You give me hope :D

Pam :)
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Postby lilaclomax » Mon Jan 11, 2010 1:32 pm

I got my date yesterday.. I first contacted Dr Simka on the 21st November 2009, he seems to be one of the most popular doctors around at the moment.
Very excited and scared at the same time.
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just a question...

Postby leetz » Mon Jan 11, 2010 3:30 pm

could someone tell me how much money(in U.S) currency the entire trip will cost????including the procedure???

Thank's a mill.......
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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zloty...

Postby leetz » Mon Jan 11, 2010 3:49 pm

OKAY SO ACCORDING TO Exchange rates:www.exchange-rates.org

1 USD = 2.80231 PLN


US Dollar (USD) Polish Zloty (PLN)
1 USD = 2.80231 PLN 1 PLN = 0.35685 USD
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Simka patient with March/April dates

Postby dunkempt » Thu Jan 14, 2010 11:34 am

I know there are a few of us on the forum who were given tentative dates to see Dr Simka in March or April.

Now March is only a few weeks away, and I don’t think I’m the only one who is feeling anxious -

not just to be sure we are still on the list, but to have time for things like booking trans-Atlantic flights, arranging work schedules, and setting up child-care for the week+ we will have to be gone.

But I don’t want to bother Dr Simka with further emails because:

a) he’s BUSY! and
b) I don’t want to tick him him off, and
c) probably he just still can’t say anyway

I don’t want to be the one who annoys the busy man, but at the same time, there is another anxiety - what if someone who doesn’t mind bothering Dr Simka again becomes the squeaky wheel who jumps the queue and then the rest of us have our dates pushed back?

Now I still don’t need to have a *specific date*, even for March, yet. But I think what would be helpful enough for many of us at this point wouldn’t even be the actual dates for the procedure, but just an estimate as to *when we might know* what those dates would be. (One week? One month? Never, we’re all too much trouble?)

What do you think about sending him *one* email on behalf of all of us in this tentative March/April booking (heck, May people, too!) situation - before we all become desperate and start writing him individually again - saying just that - and with a FROM line something like “12 [or whatever] patients on thisisms CCSVI forum”.

Ideally, maybe someone who’s *already had their procedure* could send it on our behalf so that none of us waiters would get undeserved credit or blame…

What do you think? Again, the point is so that we don’t *all* start writing him again. And are there any Simka veterans who would volunteer to ask this on our behalf?

-d
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