Ella's adventures in Katowice

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

Postby MurielC » Wed Feb 10, 2010 10:52 am

Well Martin needs to stand up and take a bow - he is after giving me a MASSIVE lift - and I'm sure many many others! I really feel that things are taking off in the UK.
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Martin

Postby Dovechick » Wed Feb 10, 2010 11:11 am

I'll tell him... He needs a lift, he thought he did not do good.
Mx
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby berriesarenice » Wed Feb 10, 2010 5:32 pm

Dovechick,

You have all been through so much. I wish you the best on this trip, that things would be unexpectedly smooth. My prayers are with Ella, that this would be a true turning point for her, and for you all.
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CCSVI

Postby Edser » Thu Feb 11, 2010 3:50 am

Good Morning TiMS & Dovechick
Well done Michele & Ella.You go GIRL's
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Thanks

Postby Dovechick » Thu Feb 11, 2010 5:04 am

Edser, the best bit about your post, and I certainly appreciate your good wishes, is your signature.
xxx
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby whyRwehere » Thu Feb 11, 2010 5:07 am

Good luck! Claire Parry said in her thread that it was all a bit disorganised, so you might want to talk to her. I thought the guy in the sky report was great...what is he feeling bad about?!
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disorganised

Postby Dovechick » Thu Feb 11, 2010 5:25 am

I don't think Claire has been yet, I think what she meant is that the organisation is not in place properly. I think they were unready for the avalanche which came after CTV documentary. Luckily I got in just before that and got an answer the same day... Although details and payment stuff came a lot later...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby whyRwehere » Thu Feb 11, 2010 5:41 am

no, she was there and just got back
http://www.thisisms.com/ftopict-10227.html
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OK I see

Postby Dovechick » Thu Feb 11, 2010 5:54 am

Oh I see, the problem might be that she did not have the procedure done, all other reports have been positive, so it may just be to do with the fact that this is not the usual pattern of play.

Whyarewehere, thanks for the link. I 'know' Claire and I was sure she had not had the liberation procedure, but as she had fallen off the radar for a few days this explains it.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Re: disorganised

Postby ErikaSlovakia » Thu Feb 11, 2010 5:58 am

Dovechick wrote:the organisation is not in place properly. I think they were unready for the avalanche which came after CTV documentary.

I think the "avalanche" is the problem. I also feel guilty. Maybe I should not tell anybody that soon. It is impossible that one man can do it all for whole world.
We did not even give Poland time to get ready. I am sorry :(
I can not blame any patient. Everybody wants to feel better as soon as possible.
Erika
Last edited by ErikaSlovakia on Thu Feb 11, 2010 6:09 am, edited 1 time in total.
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
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Postby whyRwehere » Thu Feb 11, 2010 6:02 am

I think (think, because I have no idea), that in an effort to be more organised, he got other people involved (hotel/clinic) and they don't know what they are doing, but it costs a bit more....it will all work out, it's just why put people through extra stress...send the clinic guy who asks for payment in advance a note telling when you are coming, and that you don't want to find that no one knows who you are....
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Postby ClaireParry » Thu Feb 11, 2010 6:04 am

Hi Michele,

I think that the fact I wasn't having the procedure may have had something to do with it, but there is no denying that it's even more stressful due to the disorganisation.

However, as I said, Dr Simka came to see me in the end direct from his flight back from Canada. I'm unbelieveably grateful.

I'm sure your trip will be very smooth and I hope Ella comes home 'liberated'!!

The movement on this in the UK is amazing, I saw the Sky report and the BBC report and it makes me unblieveably proud of the work people have put inton this.

Watch this space for the Vasc surgeon I know. I hope it all happens so I can tell people about him so they can benefit to.

Send all my best wishes to Ella and keep us posted! How exciting!¬!

Claire
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Vascular Surgeon

Postby Dovechick » Thu Feb 11, 2010 6:16 am

Hi Claire,
We at www.ms-ccsv-uk.org are always happy to put people in touch with others who are doing this important work. The Sky people were looking for a medical person to talk to when they were interviewing Martin, but in spite of all our contacts, we were not able to put anyone their way in time.
So when your contact is happy to have his name published we would be more than happy to refer people to him for information/consultation/clarification, should the occasion arise again, as it is bound to as we have many spin offs from this and the BBC breakfast show piece done with the co-operation of our members Martin and Gianfranco.

Whatever out trip throws up I'm sure we will cope... there are three of us going, and Ella has been to Poland before so knows a bit of Polish and how the people think etc... We will not be moved...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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FIRST PART OF JOURNEY

Postby Dovechick » Sat Feb 13, 2010 10:13 pm

Sunday, 14th Feb. St Valentine's day. First part of the journey for me at least is complete. Arrived at my daughter's, yesterday and spent the afternoon pushing her round Farnham (not easy- cobbled pavements) doing last minute bits shopping. Excitement having bad effect on MS, so she can't wait to get there. Leaving Farnham 5am Tuesday morning, driving to Stansted, Ryan air flight to Katowice 9.50, arrive 13.00 local, hired a car, staying at hotel Zaleze, 5 minutes drive from clinic.
That's the plan... As soon as I can I will report back, in the meantime I wil be in touch with Olive who will hopefully be able to fill in the details.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby wonky1 » Sun Feb 14, 2010 4:23 am

Well done Michele! You have achieved so much in promoting CCSVI.
I can't wait to here how happy you'll be, when you return with Ella liberated.
If anyone deserves this it's you.

Martin :D
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