Brit going to Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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MartinHalford
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Brit going to Poland

Post by MartinHalford »

Just got news (unconfirmed at the moment) that my wait-list has borne fruit - have dates pencilled in for 25 June - 03 July 2010. Don't even know yet whether those dates are inclusive or not.

Anyone on here going to be there at or around the same time?‏
Martin Halford
RRMS Dx 1983; Self EDSS 6.0
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MartinHalford
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Post by MartinHalford »

Well, its now been confirmed. My itinery is:

Accommodation B&B – Hotel Arena *** in Tychy
from 25/06/2010 to 03/07/2010 – 1 x room for 1 person (9 nights)
Transfers:
25/06/2010 - from Airport Katowice to Hotel Arena in Tychy
26/06/2010 - Hotel - Hospital in Zabrze (MRI)- Hotel Arena
27/06/2010 - Hotel Arena - Hospital in Tychy (neuro) – Hotel Arena
28/06/2010 - Hotel - Hospital in Tychy ( Color Doppler) – Hotel Arena
01/07/2010 - Hotel Arena - Hospital in Tychy (surgery)
02/07/2010 - Hospital in Tychy - Hotel Arena
04/07/2010 - from Hotel Arena in Tychy to Airport Katowice
Tests:
MRI examination, Neurological consultation, Color Doppler ultrasound examination / consultation.

How did I get here?

That's a story in its own right. I have been on Copaxone since 2002 (and BTW, contrary to some other posts on here, I firmly believe that the drug does what it says - I always knew it would not alter the 'end point' of my MS progression - just make the journey there a little more sufferable by cutting out the relapses).

Anyway, I breached the prospect of CCSVI at my annual Neuro check-up in January of this year and was hit with a robust 'Non'. This was expected because my neuro is not only a man lacking any compassion but is also bereft of any imagination. NHS vascular surgeon also siad 'Non' because it was outside his field of expertise. So I paid to consult with a local vascular surgeon. He was fascinated by it, and my GP joined in the support. Unfortunately the vascular surgeon, after consulting with his radiologists, could not do the scans with the equipment at his disposal, but could get access at a cost of 800 UKL. I toyed with the idea, but pleaded notes to Poland, and fortunately this cancellation came up. I plan to sue the UK Health authority if the CCSVI works for me.
Last edited by MartinHalford on Wed Jun 30, 2010 10:10 am, edited 1 time in total.
Martin Halford
RRMS Dx 1983; Self EDSS 6.0
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Perky
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Post by Perky »

Excellent! I wish you all the best for Poland, and I will be interested in following your action against the NHS, as that's the kind of thing I intend to do once I've been tested.
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Jackal
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Hi There Martin

Post by Jackal »

I will be in Poland from the 29th of June till July 4th. I am staying at the Qubus Hotel in Katowice.
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garyak
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Post by garyak »

Keep us updated as much as you can on the entire experience-good luck.
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Post by LR1234 »

Good Luck! Keep us posted x
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Bizzy
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Post by Bizzy »

I will be there as well with my husband and another couple whose husband has MS. Our schedule is identical to yours and there are other people on another thread that will be there as well. We will see you at the Arena Hotel! refer to - http://www.thisisms.com/ftopic-11159-0.html

Sue
Diagnosed in 1986 - was RRMS now SPMS.
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Malinda
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Post by Malinda »

Hello Martin,

Excellent news, I'm actually there at the exact same time and surgery also planned for July 1 (Canada Day for the Candians). My Mom and I are heading down. Look forward to seeing you at the Hotel Arena, hospital and wherever else our travels take us. Have a great trip and all the best with the treatment!

Cheers,
Malinda from Calgary, Canada
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1_sindy
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Post by 1_sindy »

Count us in as well , gosh lots of people there at the same time as us can't wate to meet you all and safe trip to tychy........sindy
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MartinHalford
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Post by MartinHalford »

Thanks All.

Looking forward to meeting you all out there and sharing a successful outcome!
Martin Halford
RRMS Dx 1983; Self EDSS 6.0
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MartinHalford
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Post by MartinHalford »

It was Father’s day yesterday and my family was kind enough to come around and spend some time at our BBQ. It was fabulous, even though like Alan Browne's post, and many others, it breaks my heart not to be able to interact with my grandchildren.

I’ve been having second thoughts lately about the operation and wondering whether it’s too late for me, and that it will have no effect, and so is it all worth the pain, the effort, and the cost of going to Poland. But seeing my wife skip around the garden this morning clearing up after yesterday, and me not being able to join in and help her, just makes me more determined to see the trip through to reduce the impact of this horrible disease even by a little. If it makes the smallest positive impact then it will have been worth it. So it’s gung ho for Poland!
Martin Halford
RRMS Dx 1983; Self EDSS 6.0
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firehazard
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Katowice July 6th

Post by firehazard »

Hi Martin,
It looks like we wil just miss each other.. I just got confirmation that they have received my payment and booked hotel 6th to 11th.
I live in the midlands , but i am flying from Luton early on the 6th...

Good luck :D
John (firehazard)
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MartinHalford
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Post by MartinHalford »

I am in an optimistic mood today, and so according to the notion that a picture is worth a thousand words, I have created the following video on Youtube to show the extent of my current abilities, and hope to impress with a resoundingly improved performance in about one month's time following the CCSVI procedure.

Last edited by MartinHalford on Tue Jun 22, 2010 8:02 pm, edited 1 time in total.
Martin Halford
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JoyIsMyStrength
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Post by JoyIsMyStrength »

Good job Martin!
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snowfire77
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Post by snowfire77 »

Hi martin,

Good luck, me and the wife are going there 23rd of july.
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