This Is MS Multiple Sclerosis Community: Knowledge & Support

Ally, I don't have specific dates yet, but asked for the end of April.

Where in Northern Manitoba? I'm originally from Manitoba.
...Ted

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

Edser

great to hear you are doing so well. I saw somewhere cant remember where on this site you said i didnt answer a pm. I never received any from you! I sent you one to acknowledge it.

Just had a visit from the copaxone nurse was all enthusiastic about ccsvi but didnt know much about it. said there was no word from the Neuros in this area (Galway )on the subject but advised me to ssek advice from a medic here before I go. Who?? I told her about you and all the others on here but surprisingly I was the first of her patients to mention ccsvi to her and she covers a huge area..

M

Good evening TiMS & irishmum,
This is what i actually said.
http://www.thisisms.com/ftopict-10207.html
Slainte Mo Chara
Edser & Anna

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Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Hi Fiddler,

I live in Flin Flon, Manitoba .

I hope you get your dates soon,

Ally

Apologies for asking questions that might be covered in this thread, but it is a little long..

First off, thanks to Cheerleader for raising the profile of CCSVI. For a long time, since she first mentioned the theory on thisisms, I did my best to ignore it because I have a huge aversion to cardiac catheters following a very unpleasant study of my heart after I was getting tachycardia many years ago. It involved electric shocks to my left ventricle of increasing strength. It was really horrendous. It gave me a fear of all things medical. My heart sank when I first read about CCSVI and the possibility that I might one day go through it.. It will be very difficult for me but I answered another user, Marta's, request for Dr Simka's mail, I looked up the the email address and decided that I should email him too.

Some questions. Poland will be a bit tricky for me, like anywhere would, because I'm in a wheelchair. Are there any accessible hotels that anyone knows of? On the other hand it will be lovely to visit, my girlfriend will accompany me so I won't be alone, and I speak Russian which may come in handy as I understand a few Polish words and older Poles speak Russian too I think.

My other question is, and I really ought to know this for sure after reading so many posts in this forum, but Dr Simka uses stents and not angioplasty, right?

Oh, and Dr Simka must have quite a waiting list?

Hi L,

Sounds like you’ve been through a nightmare, I do hope you can find some way of being a little less apprehensive about all this.

Check out the link in my signature for an experience of someone who visited Poland in a wheelchair. It should tell you all you need to know. I used hotel Qubus and it worked out fine.

Dr Ludyga (who actually does the procedures) uses stents AND balloons. He favours balloons and only tends to stent if really necessary.

And yes, Dr Simka does have a long waiting list. It was into 2011 last I heard but I understand he is trying to open other clinics so hopefully this will come down as their ability to treat more people goes up.
He goes on holiday from today until mid March so you may not hear from him personally, but there is an address on here somewhere of the Euromedic admin who is dealing with all of the bookings now.

Best of luck!!

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

On holiday!! How dare he!! Only joking!!

L, Mutley wrote some wondefully comprehensive notes for wheelchair users. The great thing about seeing Dr Simka and his gang is that they are now arranging all your transfers for you, and I'm sure they are more than used to accomodating wheelchairs.

Take comfort in the numbers of people having the procedure and coming through the other side perfectly well. The technique is tried and tested.

I hope you get an appt soon.

Claire

Thanks so much Mutley. It looks as though things weren't a problem at all.

Good to know that balloons are favoured. I'm apprehensive about stents in veins.

I've been referred by my GP to a councillor who specialises in needle phobia, there's quite a few weeks waiting list but perhaps it will help..

I can´t find the email address for the Euromedic admin though. It´s Marek Chorąży I think, does anyone have his email address?

L, the e-mail address for the Patient Coordinator, Euromedic Poland is [info@euromedicpoland.com]. Either Marek Chorazy or Marta Cyba will reply (or even possibly Alicja Ossolinska).
...Ted

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

Excellent. Thanks Ted.

Hi Edser,

You truly are an inspiration. I have just read this forum from start to finish to see how you got on and follow your story. My mum was diagnosed with MS mid last year, She was a young 49 year old, and i find from this news came about she has nearly lost her will to live. She wont research the topic or read up on any literature.. So thats where I come in. I first read Dr Zambonis reseach and tried to make contact with him, I was then informed that he does not deal with people who are from outside of Italy. Then I emailed and called Dr Paul Crowe, his secretary advised me that he is inundated with people suffering from MS and wouldnt be able to get back to me for a few months. I had never heard of either of the guys in Poland but I am now about to email them both after what I have read today. I will keep in touch now that I have found this forum as it definitely has lifted my spirits again..

Thanks to all who have contributed in lifting my spirits.

I have not been on for a while as I was awaiting my appointment dates from Poland. They have arrived and I am going to Krakow on 21/03/2010 with the ultrasound on the 23rd and surgery on 24th!!!!

I cant wait!!!!!!!!!!!!!

What I am looking to find out is whether I should continue on my current treatment, Tysabri. I am due to receive this on 15th March.

I hope someone can help!!!

Thankyou

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

I fly to Krakow on the 21st and then I will be transported to Katowice where I will receive my treatment.

Got to excited there

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

Our paths might cross then! My brother and I will be getting ultrasound on the 24th and surgery on the 25th.

I just hope someone who speaks both scottish and canadian will be there to translate...

-d

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dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

I will also be going with a friend who also has MS and his wife is from Vancouver, so you will feel right at home.

Look forward to meeting

_________________
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March