Contact numbers and emails?

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

Postby Johnson » Sat Dec 12, 2009 11:30 pm

My current understanding is that Dr. Simka is now scheduling into September 2010...

I think that you may well be right brynn, I probably e-mailed him just as the tsunami was beginning.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Sun Dec 13, 2009 12:08 am

I'm sure once this hits the US airways, the demand/supply equation will start to show some equilibrium. Cross your fingers...

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby selkie » Sun Dec 13, 2009 12:53 am

Where did you hear the September figure, Johnson? This morning it was April!!

Cureious - I don't have time to wait. I'm 57, getting much worse and may not be able to travel soon. Dr. Simka is my only hope at this point.

I bought a phone card and will try to call them.

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Postby Johnson » Sun Dec 13, 2009 1:42 am

selkie - I am sure that I read that on this forum (all I've been reading - + links - for weeks now.

I completely understand your dilemna, but it is so close. I try not to give advice, because I am just an anonymous schmuck on the Internet, but maintain what has maintained you. If you are close to not being able to travel, it is time to pull out all the stops - get any doc you can on it to get treated in your locality. Perhaps if you did call Poland, and asked for expedition..., but I can't advise on that.

We have incredible ability to survive, and I am sure that mentality and belief are the most important. Jill Bolte-Taylor, and many others (not the least those who have had treatment for CCSVI), have also shown that we have an incredible capacity in recovery. I know that we can do it. I know that we all can, with the proper support. One month ago, most of us had just a grey unknown, now everything has changed. Take heart.

/sermon
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Postby Brynn » Sun Dec 13, 2009 2:15 pm

Hi Gang! I got my first reply from Dr Simka! :D Here is his short email: You are in the waiting list for "the liberation operation". The estimated time of the procedure is September 2010. We will do our best to make the treatment possible earlier, but actually we receive more requests than we can manage in a proper time.

I am sure they will do their best to speed things up. In the meantime, I am going to reach a former workmates father, who is a vascular surgeon and have a talk with him. I will let you know if I make any progress with that. Chin up! Brynn
41 years old, dx 1998, current EDSS 6.5
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Good news, Brynn

Postby fiddler » Sun Dec 13, 2009 6:51 pm

And pulling out all the stops to try to make something locally makes LOTS of sense. Even if you end up not needing it because you get to Poland, many other people WILL only have the local option... all the MSers in the world won't be able to go to Poland.
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Re: Good news, Brynn

Postby Johnson » Mon Dec 14, 2009 1:33 am

fiddler wrote:And pulling out all the stops to try to make something locally makes LOTS of sense. Even if you end up not needing it because you get to Poland, many other people WILL only have the local option... all the MSers in the world won't be able to go to Poland.


Agreed, Ted. We are all in it together, and if we all do what we can, we help more than ourselves. There are people on here who have been treated who are still working towards universality of relief. Even after treatment, I'm sure there is a lot of work to be done - rehab. for one..
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Postby AllyCanada » Wed Dec 16, 2009 5:06 pm

I feel so blessed to be able to come on this site and read everyone's knowledge. Terry (Johnson) you are right...we are all in this together and in numbers we will get more done. I am on the list for April 2010 and now waiting for final date.

Erika, thank you for all of your posting regarding procedure, hotels, and how you are doing in the aftermath. thank you thank you ...you have really put my mind at ease concerning travel to another country.

I will keep you all posted as to a firm date.

best wishes Alison
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Postby greenandchic » Wed Dec 16, 2009 6:00 pm

Just popping into this thread. I just found out about CCSVI last week for the first time and I always feel like I miss the boat when it comes to anything in life. It doesn't helps that I feel like I'm on the edge of another relapse. I emailed Dr. Simka a few minutes ago and not feeling so hopeful I will hear back anytime soon if at all.

I guess all I can do is keep my fingers crossed....
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Postby selkie » Wed Dec 16, 2009 6:26 pm

Greenchic, also email Dr. Dake at Stanford - they're doing a study next year.

So is Buffalo, though they aren't doing treatment, you might email them too as they will be doing the testing.

I think that soon there are going to be other testing facilities around the world, so hang in there.

s.

P.S. Poland will respond, it will just take awhile.
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Postby greenandchic » Wed Dec 16, 2009 6:41 pm

Thanks for the heads up Selkie! Is it this Dr. Drake (link) ?
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Postby selkie » Wed Dec 16, 2009 6:55 pm

Yes, his name is Michael Dake

here's his email: mddake@stanford.edu

you'll probably hear back from his secretary A. Duran - but at least you'd get your name on the list.

Good luck!

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Postby greenandchic » Wed Dec 16, 2009 9:00 pm

Thank you so much! You just made my life a little easier. :)
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Postby greenandchic » Fri Dec 18, 2009 12:38 pm

Haven't heard back from anyone yet, but I can understand this may take time (demand, holiday season, etc). I just cant help but to get a little worried...
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Postby selkie » Fri Dec 18, 2009 2:12 pm

Hang in there, it took Stanford (Dake) quite awile to get back to me. But in the meantime, don't be afraid to email him at least once a week. We don't want to flood their system, but at the same time you want them to know you're serious. Best wishes -

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