This Is MS Multiple Sclerosis Knowledge & Support Community

Hey Edser, this is good news. Shaved alone and survived... Fantastic. I hope you get out of your house soon... Try out those Liberated legs and let us know.

Just to add my new years best wishes to all on this wonderful site. It has brought so many of us hope and I tune in daily looking for updates from all those who have had treatment already, so many thanks for those.
Dr Simka has outlined April for me to visit him in Poland - I'm just so excited - Let all us msers dare to hope that 2010 is going to bring some great progress in sorting out this nightmare illness.

Hi fellow MSers:

My name is Sean McNeil, from Eastern Canada.

I have had RRMS for over 5 years. I have watched with great interest the CCSVI theory and how it is being played out in the medical field.

I have sent several emails to Dr. Simka but no reply. I was wondering if you had more information regarding Dr. Kostecki's contact information?
I am prepared to travel to Poland to see the doctor for MRV and Ultrasound testing. If they detect stenosis, then I will consider the surgery.

I have given up trying to get the proper testing done here in Canada because outside of trained technicians in a clinical trial setting, there is no other way to get tested. It is so frustrating and really deflates your hope.

Any help would be greatly appreciated.

Edser gaves us the following information yesterday earlier in this thread.

CCSVI testing is now available in Tychy(Poland) by Dr Kostecki whose email address is kosteckj@op.pl

Erika said she had met Dr Kostecki.

Hi Sean,
If I was you I'd mail Dr. Kostecki right away... all of Dr. Simka's communications were by e-mail. and it is probably the same with Dr. Kostecki.
...Ted

seanthecaper wrote: I was wondering if you had more information regarding Dr. Kostecki's contact information?

My post about Dr. Kostecki and the town Tychy is on previous page.
Erika

For Edser and all others who have been liberated and site better balance as a result of the procedure...would you mind expanding on that?

I guess I'm trying to figure out is if what I feel 24/7 has a chance of being helped by this procedure. I feel a constant, 24/7 sense of dis-equilibrium. Not spinning vertigo, but more like I'm just slightly tipsy, all the time. So there are no activities I can't do per se if I really want to, but doing just about anything except sitting with my head still is not pleasant. Does that make sense?

And when I turn my head quickly or up or down quickly, it's like the back of my head doesn't come with the front, right away. There is a weird lag.
Basically I think my vestibular-ocular reflex is all screwed up and makes me feel "dizzy" all the time and I'm wondering if this is the kind of symptom that has been helped by the procedure.

Thanks and I'm so happy for all who have been able to be helped by this - it really gives me hope!

SaintLouis wrote:For Edser and all others who have been liberated and site better balance as a result of the procedure...would you mind expanding on that?

I guess I'm trying to figure out is if what I feel 24/7 has a chance of being helped by this procedure. I feel a constant, 24/7 sense of dis-equilibrium. Not spinning vertigo, but more like I'm just slightly tipsy, all the time. So there are no activities I can't do per se if I really want to, but doing just about anything except sitting with my head still is not pleasant. Does that make sense?

And when I turn my head quickly or up or down quickly, it's like the back of my head doesn't come with the front, right away. There is a weird lag.
Basically I think my vestibular-ocular reflex is all screwed up and makes me feel "dizzy" all the time and I'm wondering if this is the kind of symptom that has been helped by the procedure.

Thanks and I'm so happy for all who have been able to be helped by this - it really gives me hope!

Good afternoon TiMS,
My balance has improved.Before i could not stand in the same spot without holding onto something for support.Now i can .Try this people & see how ye get on.CLOSE your eyes,legs slight appart & see if you can stand in the same area without swaying.I couldn't do this now i can.
Anna checked my Edss a few moment's ago,as i never knew what Edss were before i started using this Forum.Before the Procedure in Katowice we make out that i was a 6 & now it appear's to be 4 My Neuro or Dr's never discussed Edss with me or anything else.
Have a nice day people of TiMS.Myself & Anna are going for a WALK
Slainte Mo Chara
Edser & Anna

Hi SaintLouis, I don't think anyone can be categorical about what is going to get better after the procedure. What I can say (from what I have read here) is that everyone who has had the procedure done (with a couple of obvious exceptions) has had some improvement in their condition.
As you have probably gathered by now MS is a very individual disease and most of the MS patients I have read about or spoken to have symptoms that they have but not every patient has... so guessing what might improve is just that guessing.

Edser I want to hear all about that WALK when you get back!!!

Edser wrote:Good evening TiMS,
CCSVI is now available in Tychy(Poland) kosteckj@op.pl
A Polish woman was talking to Anna on the Polish Forum.She was trying to make an appointment for her boyfriend with Dr Simka & he gave her the above e-mail to contact Dr Kostecki
Slainte Mo Chara
Edser & Anna

Good evening TiMS,
Dr Jacek Kostecki has started doing trials in Tychy(Poland) Ring 0048 501 444 784 OR e-mail:kosteckj@op.pl
Slainte Mo Chara
Edser & Anna

PS:The Polish woman that Anna was talking too,her boyfriend has an appointment this Thursday 07/01/2010 She only made the appointment Monday 04/01/2010

Good afternoon TiMS,
1 Mounth 15 Days
I'm progresing on nicely.Myself & Anna are just back from a 100KM spin in my car(I Drove) & a lovely walk on the beech My fatigue is gone & my mood swing's are much better.
Slainte Mo Chara
Edser & Anna

PS:I've asked this before but no one responded.Are there any people from Ireland going for the procedure in Katowice?
The Mirror New's Paper UK
http://www.mirror.co.uk/news/top-storie ... -21973545/

Hi Edser

So happy for you both that things are going so well - I'm just living for April when it'll be my turn
Sorry, I don't know of any Irish people off to Poland - Suzanne

That is such wonderful nrews, Edser. Coming back into health from this procedure will be so sweet! Brynn

thanks for this great news Edser

My friend Kathy who is in Ireland is waiting to hear back from Dr Simka .
I think she is on your friends list on Facebook ?
I.ll get her to make contact with you

Edser thanks for your update. It is great to hear that you are doing so well. It is so encouraging for us that are following in your footsteps. Keep it coming.