This Is MS Multiple Sclerosis Community: Knowledge & Support

Sorry, to be so dense, I've done searches and come up with lots of discussions about receiving calls and emails, but I've yet to find the contact numbers?

Could someone help this newbie or direct me to a thread that has the email and contact phone # for:

Dr. Dake - Stanford

Dr. Simka - Poland

I've already found Dr. Haacke's and the contact for the Buffalo study.

Thank you very much and so sorry if this info is right under my nose. I have vision problems and a hard time searching forums.

selkie

Hi selkie!
Dr. Simka:
e-mail: mariansimka@poczta.onet.pl

This is web page of Dr. Simka in Poland: http://strona.simka.nazwa.pl/
Dr. Simka writes on his web page in English about MS:
http://strona.simka.nazwa.pl/multiple-sclerosis.html

This is the hospital/building where I had my procedure, Euromedic: http://www.zozmswia.internetdsl.pl/

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

Thank you so much, Erika - I had a different email for Dr. Simka, so very glad to get the proper one.

I am also going to try Stanford or to get testing in U.S., then would go to Dr. Simka for surgery, or will just go to Dr. Simka if he will see me.

Thank you very much! I am very certain I have CCSVI because of my MS symptoms seem related to improper blood flow.

Thank you for hope.

selkie

Wow, Erika, I heard back from Poland already! They explained about the procedure and want to know if I want an information packet.

I am excited and nervous too. Your procedure with Dr. Simka went very well? He has a very high success rate isn't that true?

Thank you ! My mind is blown!

selkie

Hi selkie!
Congrats for good news.
I do not know why exactly but my procedure went very well, it was very easy for me. It was like having coffee with my friends. It took 1,5 hours. I have more than 30 Clexane injections behind me. Again, I do not know why but I feel no problems regarding the injections. I just simply feel nothing.
Yes, I have some bruises - but not bad.
I have some MS improvements as well. My biggest problem was fatigue. It is gone - at least 85%. I have more energy and I have normal pulse - my heart was beating like crazy before.
Yes. I still feel I have MS - I still have some problems but today is only my day34.
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

Thank you Erika for writing.

I didn't realize this was only day 34 for you!

But that is amazing to have fatigue cut by 85%.

My biggest problems are balance, dizziness, fatigue, and numbness in my feet and legs. I would be most happy just to have better balance and less fatigue. It can't be good to have these vein blockages, so I believe they need to be corrected regardless to prevent further iron desposits forming in the brain.

So, was everyone nice to you in the hospital? Do you know what Dr. Simka's success rate is? And did they all treat you well?

You are a brave woman. Thank you so much for sharing your experience and encouraging people here.

selkie

You know, I have balance problem as well, I do not understand exactly how it works, but my balance is better as well, not much but for sure better.

I have to smile What a question! If they treated me well!
Of course they did All of them were nice to me
What do you mean under success rate? If they find stenosis, they do the procedure. So far everybody was fine, nobody had open heart surgery, nobody died. I have not heard about any complications.
They are also ready for emergency. Of course they do everything not to have any emergency.
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

HI ERIKA MY NAME IS SEEVA FROM SYDNEY AUSTRALIA.CONGRUTULAION AND ALL THE BEST FOR THE TREATMENT YOU HAD IN POLANDCAN YOU PLEASE LET US KNOW THE PROCEDURE TO HAVE TREATMENT FROM DR.SIMKA POLAND. ALL MY M.S FRIENDS DO NOT KNOW ANYTHING ABOUT THIS. SO THIS INFO VERY USEFULL AND WE ALL GRETFULL TO YOU.OUR M.SSOCIETY NOT HELFULL IN THE TOPIC CCSVI.
REGARDS
SEEVA

Dear Seeva!
Say hi to all your friends. Read at least this: http://www.thisisms.com/ftopic-8640-0.html
There are more pages.
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

Thank you so much Erika. I hope you continue to get improvement. How long did you have MS before your surgery?

I have requested the application form and I hope for the very best. I do believe CCSVI is at the root of this disease.

Thank you again.

selkie

RRMS since 1996, 12 attacks behind me.
No DMDs.
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

Sorry, Erika - I see now you had that in your signature. I've had MS since 2002, so I feel no time to waste.

You have been a big motivator as I've been reading your posts long before I asked. Now I feel much more comfortable about going to Poland. I know a Polish woman and intend to ask her if she'd be willing to teach me some Polish language. My husband's mother's ancestors were Polish, so I'm thinking that is a "sign" of some sort. I'm anxious to go and hope to hear back from the Polish clinic soon with my application.

We need to beat this disease and the more of us with positive stories, the more people hopefully will be inspired and will recover even some of what they've lost is a miracle to me.

aloha, selkie

Hello, my name is Judy and I am new to this forum...I've never done this and yet already I feel so much support from you.
We are so thankful for finding this site and Erika who defines the word COURAGE.

I have 2 sisters with MS, diagnosed 30 years ago...my family always says that we all have MS which I am sure everyone understands...we are starting this journey with my older sister whom, as I write, is having her Doppler Ultrasound...it's funny but I'm praying for narrow viens...MRI to follow...Dr. Simka has contacted us twice and we will send over the tests to ensure my sister is a candidate before we go to Poland...we are really impressed with Dr. Simka's responsiveness...this is a daunting task but all worth well it...Thanks for "listening"...Judy.

jr - did Dr. Simka mail you the application (snail mail?) or did he send it via email? I'm so impatient i can't wait to get the application form, but not sure which way they are sending it. I don't want to keep bugging them with emails.

Thanks so much, selkie

I hate to sound impatient, but I've always been that way. Do you think Dr. Ludyga's office would mind if I called them to ask how the application form is being sent? Or should I bite my tongue a wait a couple of weeks to see if it arrives in the mail????

Sorry to be so impatient -

selkie