Contact numbers and emails?

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

Postby Brynn » Fri Dec 11, 2009 8:35 pm

Selkie, I totally agree. However we can connect! :D Good luck, Brynn
41 years old, dx 1998, current EDSS 6.5
User avatar
Brynn
Family Elder
 
Posts: 116
Joined: Sat Nov 28, 2009 4:00 pm
Location: Spokane, Wa

Postby Johnson » Sat Dec 12, 2009 12:27 am

I first sent an e=mail to Dr. Simka on the 2nd of December, and heard back late the next day, asking if I wanted the surgery, and that they would be booking for the New Year this week. I replied immediately that I wanted to be on the list, and received another e-mail asking that I write back this week for scheduling. I had not yet done so, but received this e-mail from Dr. Simka this morning:

Hello,

You are in the waiting list for "the liberation operation". The estimated time of the procedure is May 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 will inform you about exact time of the examinations and potential operation in 1-2 weeks.

Best regards

Marian Simka, MD

Offer for patients suffering from MS
-vascular specialist consultation with non invasive diagnostic procedure (color doppler and MRV) ..............................................................................................................................300 euro
-vascular specialist consultation with non- and invasive diagnostic procedures (angiography)
.....................................................................................................................................1100 euro
-vascular specialist consultation, all necessary examinations and an endovacular procedure (PTA)............................................................................................................................3500 euro
-vascular specialist consultation, all necessary examinations and an endovascular procedure
(1 stent implantation)..................................................................................................4200 euro
-vascular specialist consultation, all necessary examination and an endovascular procedure (2 stents implantation)................................................................................................4700 euro


Flight possibilities for Canadians and Americans:

There are discount flight by Lufthansa (German airlines) from Toronto and Calgary, and from several American cities to Katowice via Frankfurt or Munich

Conditions for this offer

Purchase by: 19.01.2010
Departure period: 13.12.2009-30.04.2010
Return period: 13.12.2009-31.07.2010
There are also direct flight from Chicago to Krakow by LOT Polish airlines


This doctor is so cool! Not only does he answer his own e-mails, he investigates the best way for us to get there. Look up the "Dr. Simka - Poland" thread for more on him.

20 people received this e-mail, from Italy, Australia, Czechoslovakia, Germany, Canada, and the UK. I am thinking that he is booked to, and through May. He has communicated otherwise that he is swamped with calls and e-mails from around the world. I am sure that it is on a first-come, first-served basis, but he seems not to forget, so wait a bit (a week?), and then try again by e-mail. I am confident that he will respond as soon as he has a coffee break... Don't wear him out before I get there! Grin.

In the mean time, push your own, local doctors on the idea that you (may) have a venous malformation, and ask to be referred to a vascular surgeon, or an interventional radiologist. Forget about your MS Clinic, or neurologist, they are so... last week.

Best of luck!
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby ErikaSlovakia » Sat Dec 12, 2009 12:59 am

Johnson wrote:20 people received this e-mail, from Italy, Australia, Czechoslovakia, Germany, Canada, and the UK.

Dear Johnson,
can you tell me, if you know, if the patient/s from Czechoslovakia is/are from Czech republic or Slovak republic?
Thank you,
Erika
P.S. I am glad you have received such information from Dr. Simka. I was not able to answer these questions as I was only the second. It was different. They were discovering some details - I mean organisation not the procedure or other doctor`s stuff. The doctors and nurses knew perfectly what to do.
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
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Johnson » Sat Dec 12, 2009 1:15 am

ErikaSlovakia wrote:
Johnson wrote:20 people received this e-mail, from Italy, Australia, Czechoslovakia, Germany, Canada, and the UK.

Dear Johnson,
can you tell me, if you know, if the patient/s from Czechoslovakia is/are from Czech republic or Slovak republic?
Thank you,
Erika
P.S. I am glad you have received such information from Dr. Simka. I was not able to answer these questions as I was only the second. It was different. They were discovering some details - I mean organisation not the procedure or other doctor`s stuff. The doctors and nurses knew perfectly what to do.


Hi Erica,

I hope that you are doing really, really well. It was you who convinced me about Dr. Simka... Thank you!

I don't know if from the Czech Republik, or Slovakia Republik. I just got that from looking at the e-mail header that gave an e-mail address of someone@.ch. I had 'forgotten" about the split, but would presume that would be in the Czech Republic? I better brush up on my geo-political history before I head to Poland, I think...

I am very confident in the Polish team, from what I have read here, and from what Dr.Simka has written to me.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby ErikaSlovakia » Sat Dec 12, 2009 1:42 am

Johnson wrote:Hi Erica,

I hope that you are doing really, really well. It was you who convinced me about Dr. Simka... Thank you!

I don't know if from the Czech Republik, or Slovakia Republik. I just got that from looking at the e-mail header that gave an e-mail address of someone@.ch. I had 'forgotten" about the split, but would presume that would be in the Czech Republic? I better brush up on my geo-political history before I head to Poland, I think...

I am very confident in the Polish team, from what I have read here, and from what Dr.Simka has written to me.


Do not worry, it is OK. Anyway I was born in Czechoslovakia.

ch - Switzerland
cz- Czech republic
sk - Slovak republic

- it means it was Switzerland
SK and CZ were together until 1993. We speak little different language and have different MS forums. We use different currency: in Slovakia we use Euro, in Czech Republic they use Czech crown. Both countries are neighbors with Poland.
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
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Johnson » Sat Dec 12, 2009 1:56 am

Thanks Erika,

Oh, now I feel foolish. I ought to have remembered that Switzerland was ".ch". I am enjoying too much my Argentinian red wine on this Friday night...

Also, about Dr. Simka - remember that Poland is 10 or 11 hours ahead of the west coast of North America. If you send your e-mail at about 7 PM from the West Coast, it ought to be one of the first of the day in Dr. Simka's inbox.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Algis » Sat Dec 12, 2009 2:04 am

CH is pretty confusing; it means "Convention Helvétique" which is a kind of conglomerate between counties (Cantons) which speaks 3 different official languages for such a small country (French, German and Italian).

Europe and its heritage :D
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby Johnson » Sat Dec 12, 2009 2:11 am

Algis wrote:CH is pretty confusing; it means "Convention Helvétique" which is a kind of conglomerate between counties (Cantons) which speaks 3 different official languages for such a small country (French, German and Italian).

Europe and its heritage :D


Yes... I could not decide to type, Suisse", Suiza, or the German (Schwize?), or "Switzerland". Being that my first language is English, I went with Switzerland.

Algis - I consider myself to be fairly well-informed, but I was unaware of "Convention Helvetique" (no accent grave on my keyboard without messing around...).

Thank you!
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Algis » Sat Dec 12, 2009 4:03 am

It is even "Confédération Helvétique" which is a convention - My brain's getting old and my French rusted :D

(ALT-130) will gives you é
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby Johnson » Sat Dec 12, 2009 4:13 am

(ALT-130) will gives you é


Mercy buckets, and all Algis, but my cheapo keyboard doesn't seem to do that. I was trying for a mérci beaucoups, not even realizing that the circonflex (er, I meant cédille, but mérci does not require that...) would pose a whole new challenge. And it's a Canadian-made keyboard...

Mérci beaucoups none the less. Grin.

Ah, did some searching and figured out the é! Thanks Algis!
Last edited by Johnson on Sat Dec 12, 2009 11:26 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby selkie » Sat Dec 12, 2009 12:30 pm

Well, he hasn't replied to me after the initial email response, and I've emailed him 4 times since then. I'm 57 and can't afford to wait for this surgery, as I'm getting worse everyday, soon I won't be able to travel at all.

I realize he's only one man, but will try calling the clinic next week.

Good luck and best wishes to you Johnson, thanks for the heads up.

selkie
User avatar
selkie
Family Elder
 
Posts: 222
Joined: Sat Nov 21, 2009 4:00 pm

Postby Johnson » Sat Dec 12, 2009 1:16 pm

I hope that you have success very soon, selkie. I understand your frustration. I have no idea what to suggest, beyond trying other members of the team perhaps.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Brynn » Sat Dec 12, 2009 5:58 pm

Happy Saturday everyone, thank you Johnson for all of your information. It really helps those of us waiting, to put the wait time into perspective. My brother lives in Spain so I am a little used to paying attention to those time zones! :lol: I think you made contact right before the probable tidel wave toward Poland after Dr Dake was shut down. I was thinking though, that even if Dr Simka tries for one procedure a day, that would probably be about 20 a month, which will fill up real fast. I do get a sense that this is a team on a mission and we will all hear back ASAP. Take care all, Brynn
41 years old, dx 1998, current EDSS 6.5
User avatar
Brynn
Family Elder
 
Posts: 116
Joined: Sat Nov 28, 2009 4:00 pm
Location: Spokane, Wa

Postby Brynn » Sat Dec 12, 2009 6:03 pm

Thank you for the great info Johnson. I think you placed your call just ahead of the probable tidel wave of people turning toward Poland following Dr Dake's shutdown. :lol: I am sure Dr Simka will do his best to get back to us all. Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
User avatar
Brynn
Family Elder
 
Posts: 116
Joined: Sat Nov 28, 2009 4:00 pm
Location: Spokane, Wa

Postby Brynn » Sat Dec 12, 2009 6:18 pm

Sorry for the double entry...there was an error message and I assumed the first one didn't go! Brynn
41 years old, dx 1998, current EDSS 6.5
User avatar
Brynn
Family Elder
 
Posts: 116
Joined: Sat Nov 28, 2009 4:00 pm
Location: Spokane, Wa

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service