This Is MS Multiple Sclerosis Community: Knowledge & Support

Well, after the automated email, there have been no responses to the
several emails I've sent since.

Just wondered if anyone has called them recently and if that is the
way to go. 2011 or even 2012 is better than never.

thanks, selkie

Hi Selkie, I had a Polish speaking friend call the doctor's clinic and the person she spoke with said that Dr Simka handles his own scheduling. You received an initial email from him, right? What month do they have you set up for? I am sure he is working as fast as he can. Hang in there! Brynn

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41 years old, dx 1998, current EDSS 6.5

Hi Brynn,

I'm not set up at all. I received a reply from Dr. Ludyga and he said they'd send an application - that was quite sometime back and I never received one.

Did you get an appointment? I also know a Polish speaking woman and am thinking of asking her to call for me, or I'll call myself and hope they have someone on duty that speaks English.

I don't think it's a good idea to wait. I've sent multiple emails, and when I first started he was scheduling in February. Now I'm sure it's into 2011. I'm 57 and progressing. Can't afford to wait.

When is your appointment sent for?

thanks, selkie

P.S. I also sent emails directly to Dr. Simka and heard nothing from him, only that first email from Dr. Ludyga which I'm sure was an automated reply as several people have received exactly the same email. So I'm nowhere as far as I can tell.

Hi Selkie, no, I don't have a specific date yet. About twenty others and I received an email saying we were all being targeted for Sept 2010. My friend's phone call was received by a very nice person who said Dr Simka sets up the appointments himself. I believe he would not want to set dates that far out quite yet because it sounds like he is going to try to speed things up and it would be troublesome to make travel arrangements if that happened. Bye, Brynn

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41 years old, dx 1998, current EDSS 6.5

Hi Selkie,
I've only dealt with Dr. Simka (by e-mail) and am scheduled for sometime in April, one of 25 people. My suggestion: get a message to him saying you're willing to go on short notice (assuming that's true). I am sure there are folks who are going to bow out in the next few months, and he would probably be happy to have volunteers to fill the gaps.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Hi selkie, like fiddler and Brynn, I have only had (2) e-mails. The last, I was one of 20 for some time in May. I hummed and hawed for a week after I read of Dr. Simka, and it went from when would you like to come?, to a bulk e-mail that it would be in May. Fiddler made contact essentially the same day, and he got April.

Dr. Simka may be triaging, or may be doing Eastern Europeans before Norte Americanos, we have no way of knowing. There are other potentials coming up in India, Germany, and I would think that trials will be popping up everywhere. Write to anyone who would potentially do a trial, and tell them though they are not doing one now, you would be willing to participate. I wrote to the MRI guy at UBC in November, and asked. There was nothing considered at that point, but I asked him to keep my name on file. I have no idea if he did.

Best of luck.

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My name is not really Johnson. MSed up since 1993

Hi there!
I am sorry you are in such a terrible situation.
I do not know of course how it works I just can give you some information:
- there are 60.000 MS patients in Poland
- I do not know if they have to pay for it or if the health insurance pays for it but the price for Eastern Europeans is very high
- there are 8.000 MS patients in Slovakia - as far as I know because I talk to them on Slovak MS Forum - only couple of them are thinking about doing it - as they do not speak English they are not sure if it is correct decision and then the money...
- there are 15.000 MS patients in Czech Republic - they are in the same situation as Slovak patients
- there are already 2 places (maybe 3) where you can get MRV with Haacke`s protocol in Germany
Dr. Simka might be busy with Polish patients but I am not sure.
I still think you did well that you have tried it. I think sooner or later you will get your procedure. I know very well the time is important.
I am sorry I can not help you more
Erika

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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

Hi Erika,

Thanks for your usual dedication. It is not me that is so worried, as I am in Poland in May (to the best of my knowledge), but selkie who has heard nothing.

Dr. Haake had to close down his web site when the news came out because he was over-loaded with tens of thousands of e-mails. I think that now Dr. Simka is the only one in the world, he must get 10,000 e-mails too. I feel worry for him that the pressure must be incredible. He is probably trying to think of how to respond to everyone while he is doing operations, conferences, holidays... and training new teams perhaps.

Demand creates new facilities to fill it. There will soon be doctors everywhere who are doing this. I'm sure that every vascular surgeon, and interventional radiologist is at least aware of it, and a lot will step up. It's $80,000 a pop in the US...

I was told that in Canada, it would cost about $1000 under universal health care. Of course, patients would pay nothing. Seems pretty cheap, but the doc is credible.

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My name is not really Johnson. MSed up since 1993

Dear Johnson!
Thank you but my post was "Hi there" for everybody with problems not exactly for you.
As I read all posts from July 23 2009 every day (except for being in Poland) I already know of course all the information you wrote me but many newbies will read your post - so it is well done.
Good luck in May!
Erika

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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

I'll comment a bit as I'm Polish.
---
It's not covered by the insurance. We have to pay ourselves for the procedure. Most MSers in Poland can't afford it.
---
I don't think that dr. S.'s busyness with Polish patients is the case. When he examined me, he said that only a handful of Poles was scheduled for the procedure for the next months. I think that the "order of appearance" matters. So, keep trying.

Rgds,
Adam

Wow, Johnson (who is not Johnson), I hadn't realized Dr. Haacke had to close down his website. I had emailed him as well. I've emailed Buffalo & Stanford too.

I can well imagine Dr. Simka is being flooded with requests.

Erika, do you know where in Germany they are doing the imaging with Dr. Haacke's protocol? I thought Germany's MS society had come out rather conservative about Dr. Zamboni's work.

I hope Erika you are continuing to improve and do well.

Hopefully more locations will become available for imaging according to Dr. Zamboni's methods. As for surgery, we all would like the best qualified, and this procedure is very new. I wonder how many surgeries Dr. Simka has performed to date? He must be one of two perhaps in the world with the most experience in the technique.

I guess all we can do is keep each other posted on our experience.

selkie

Hi Adam,

Thank you for the information. That is helpful.

I have a question though - is the procedure not covered in Poland because the surgery hasn't been approved for MS patients or is it because the Polish people don't have health care benefits?

Very sad that people in Poland can't take advantage when the medical expertise is so near by.

Thanks again.

selkie

Hi Selkie,
- MRV in Germany - in town Jena, Frankfurt and maybe Hamburg (Jena was the first)
- I feel the same as 10 days ago - no other big improvements but I for sure do not feel worse, I have no problems at all with Clexane injections
- I have no idea how many procedures has Dr. Simka made so far

I agree, the only think we can do so far is to change our experience.

Erika

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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

This is something that torments me, and must torment people reading here who have no means to pay for treatment. We have tremendous excitement, and some frustration with getting treated, but we have hope. I keep thinking of those who cannot share in that hope. I can't imagine the anguish of not getting treated for lack of money.

I have been trying to think of ways to help, but my brain is so fogged, all I have come up with is discussing it with Dr. Simka when I go. I feel that we who can afford to get to Poland, ought to be able to afford to donate a couple of hundred bucks extra to a fund of some sort. At 20 patients a month, one or two Poles, or Slovaks, or Czechs, etc. could get treatment paid for by the fund every month. If we can donate to Buffalo, or UBC, or such to help ourselves, why not?

I keep thinking of starting a thread on it. Maybe I ought to do that...

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My name is not really Johnson. MSed up since 1993

Hi Selkie
It's not covered because of not being approved for MSers.
Polish people do have healthcare benefits, but these are the same for all working people. So, if it's not on the reimbursed procedures list, noone can have it for free.
And this is governed by the Healthcare Department.
Which is stupid and socialist, by the way.

Br,
Adam