Dr Simka (Poland)

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

Patient Experiences

Postby fiddler » Thu Dec 03, 2009 2:37 pm

Thank you, Erika.
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 4:00 pm
Location: Fredericton, Canada

Advertisement

Postby Johnson » Thu Dec 03, 2009 4:03 pm

Wow!

I e-mailed Dr. Simka 3 days ago, and received a reply this morning.

Jitters, excitement, trepidation (is it my veins that causes the MS?) I really wish I could get the scans in Canada (so I would know that I have the problem), before flying myself and my family to Poland, but I am so ready to take a leap of faith - so much better than a leap off a bridge (grin).

I will start a thread about all of this when I recover from my excitement...

These are the costs that Dr. Simka sent to me:

An average cost of liberation operation is 5000 US$ / 3500EUR / 5500 CAD$

MRV 150-200 EUR

Doppler 50 EUR
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Mutley » Thu Dec 03, 2009 4:10 pm

That's great news Johnson, welcome to the Dr Simka fan club! When are you planning on going?

I fly out on the 15th.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 4:00 pm
Location: England

Postby mrhodes40 » Thu Dec 03, 2009 4:33 pm

Wow how great! You know what is neat about that is the costs are something a person can imagine doing and no devastating the family to accomplish your goal. :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Johnson » Thu Dec 03, 2009 5:02 pm

Thanks Mutley and mrhodes40.

I am so excited, I think I'm going to have an exacerbation...

The kind Doctor wrote to e-mail him next week, when they are doing the scheduling for 2010. He wrote that it would be 7-10 weeks from then. That works well for me, because I haven't felt much like traveling in the last few years, and have a lapsed passport. Canada drags its heels in getting a new one. So, It's looking like sometime in February. That will get us away from the Olympics mayhem too.

Yes, mrhodes40, the cost is something that can be handled relatively easily for me, and for that I am thankful beyond words. If I can work again, I can pay that off in little time.

I have been thinking a lot of those who can't afford to do it. The cost is brutal in the US. My cognitive functions have taken a pounding the last few of years (actually, the last 16), but my hope is to regain a lot of that, have some energy, and start thinking of some kind of trust fund(raising) for those who cannot afford it. I always think that there has to be "a reason" behind things - including having MS, and nobody should not have treatment because they don't have money (or credit).

As you will soon see from my posts, I am rather loquacious, but I hope I don't bore you all to death. Just be careful not to ask me a question, I can really get going then. Grin

Oh, and Mutley, best of luck to you. It's my b-day on the 19th (it's going to be the happiest of my life!), so be cured, and it will make my day even better.
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Gzee » Fri Dec 04, 2009 1:38 pm

Hello Johnson,
Fellow Canuck here. Husband dx RRMS some 12 yrs ago. Over the moon (and bleary eyed) trying to read up on all the latest stuff on CCVSI. We got our e-mail into Buffalo straight away but they've filled their quota. We have someone trying to get ahold of Dr. Z. in Italy to see if they will take my husband for the testing/procedure. Dr. Simka sounds very positive. Can you assist as to how you went about all of this?
I totally hear what you're saying re Canada dragging their feet on this (and other issues). It's a terrible shame. Having said that, I'm dismayed at the costs I've seen posted somewhere here for the treatment at Stanford. I'm not naive to think that these things costs money but how can it be that it seems much more reasonable in Poland? Don't have any clue what it would cost in Italy.
Any assistance would be appreciated from anyone.
All of you are in my thoughts and prayers.
User avatar
Gzee
Newbie
 
Posts: 2
Joined: Thu Dec 03, 2009 4:00 pm

Postby Johnson » Fri Dec 04, 2009 4:29 pm

Gzee - this is a response moved from a "sticky" -
I understand that Dr. Simka used to respond almost immediately, then it was the next day. I e-mailed on Monday of this week, and heard back yesterday (Dec. 3d). He asked me to contact him again next week, when they would be doing scheduling for imaging in the new year. He indicated that it would be 7-10 weeks after scheduling starts (next week) before I could get the scanning and the procedure.

this is the information Dr, Simka sent regarding costs (although I did not ask)
An average cost of liberation operation is 5000 US$ / 3500EUR / 5500 CAD$

MRV 150-200 EUR

Doppler 50 EUR


If Dr. Dake's office is getting 100 calls a day, I would not be surprised if Dr. Simka was receiving a similar number.

Be patient (take the pun if you like). Dr. Simka will respond.

wonky1 waited 27 years for this hope to happen, I've been waiting 16. There are many who have waited even longer than wonky1. We have a potential answer now, and even considering the trials, and such, things will likely move relatively quickly now.


Dr. Simka's e-mail addy - mariansimka@poczta.onet.pl <mariansimka@poczta.onet.pl>

I hope that helps a little.

Regarding Italy - My understanding is that it would be ~$35,000 in Italy, but that Dr. Zamboni is only going to do Italian patients until they are all taken care of (there are a lot of them). *I don't guarantee the accuracy of this...
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

question for Johnson

Postby cervin » Fri Dec 04, 2009 10:52 pm

first a huge congratulations that Dr. Simka contacted you!! It has got to feel so good.

I am writing to ask you how you went about contacting Dr. Simka? i ask this because i also contacted him on Monday and i have not heard back yet. My efforts at contacting him are a far cry from heroic. i just emailed and asked him to please contact me regarding CCSVI.
Any hints or suggestions? Did you do something else?

Thanks Johnson and again congratulations

:)
kind regards,
-ceci
User avatar
cervin
Family Member
 
Posts: 32
Joined: Mon Nov 23, 2009 4:00 pm

Re: question for Johnson

Postby Johnson » Fri Dec 04, 2009 11:46 pm

cervin wrote:
[redacted]

I am writing to ask you how you went about contacting Dr. Simka? Did you do something else?

:)
kind regards,
-ceci


@ cecil (my favourite great-uncle's name)

I e-mailed him, and translated it to Polish - as a quaint courtesy, and in the hope of garnering attention. Of course, I also used all the tools in my "Handbook of Eloquence"

Sorry - I see now that it is Ceci, and not Cecil.
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 markofc » Sat Dec 05, 2009 4:38 am

cervin wrote:
I am writing to ask you how you went about contacting Dr. Simka


I thoughts that fairest idea it wait for answer email :idea:

Correspondence: Dr. Marian Simka, Department of Angiology, SANA Institute, ul. Wodzislawska 78, 43-200 Pszczyna, Poland. Phone/Fax: +48-322120498. E-mail: mariansimka@poczta.onet.pl
User avatar
markofc
Getting to Know You...
 
Posts: 13
Joined: Fri Nov 20, 2009 4:00 pm
Location: Poland

Re: Dr Simka (Poland)

Postby seeva » Sat Dec 05, 2009 7:10 am

Edser wrote:Good evening,
I was diagnoised with PPMS 17/02/2009 & i've my 2nd MRI+MRV 11/11/2009.I've made an appointment with Dr Simka 30/11/2009.
Best Regard's
Edser

HI MEMBER My name is SEEVA FROM AUSTRALIA and I LIKE TO CONTACT DR.SIMKA POLAND. Please let me have his contact details.
REGARDS
SEEVA :roll:
User avatar
seeva
Family Elder
 
Posts: 214
Joined: Sun Jan 20, 2008 4:00 pm
Location: SYDNEY

Postby wonky1 » Sat Dec 05, 2009 7:20 am

Hi Seeva earlier on in this topic Johnson said
Dr. Simka's e-mail addy - mariansimka@poczta.onet.pl <mariansimka@poczta.onet.pl>
Good luck

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
User avatar
wonky1
Family Elder
 
Posts: 113
Joined: Thu Oct 08, 2009 3:00 pm

Postby wonky1 » Sat Dec 05, 2009 7:23 am

Hi Seeva as above
Dr. Simka's e-mail addy - mariansimka@poczta.onet.pl <mariansimka@poczta.onet.pl>

He will reply but it may take a while.
:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
User avatar
wonky1
Family Elder
 
Posts: 113
Joined: Thu Oct 08, 2009 3:00 pm

CCSVI

Postby Edser » Sun Dec 06, 2009 4:43 am

Good Morning we are back from my procedure in Poland. Diagnosis:Sclerosis Multiplex.Right Jugular Vein Stenosis. Procedure:Percutaneous balloon angioplasty with stent implantation into the right jugular vein (Invatec SCUBA 10 x 30mm)
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
Edser
Family Elder
 
Posts: 152
Joined: Mon Oct 26, 2009 4:00 pm
Location: Co.Cork.Ireland.

Postby ErikaSlovakia » Sun Dec 06, 2009 4:54 am

Congrats Edser & Anna!
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: 1117
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users