Ella's adventures in Katowice

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

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Postby Dovechick » Wed Feb 24, 2010 9:44 am

I raised it with Dr Simka, very early on, before Christmas, as I say things have changed. I think there was something in the generic message I got from the administrator a couple of weeks before we left...
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 Dovechick » Sun Feb 28, 2010 12:25 am

Hi all, after being cut off from the site for 24 hours all my links to it have been suspended and as we have been very busy in the UK with the CCSVI petition I did not have time to come looking for my threads until today. Bit of news:
BIT 1 ms-ccsvi-uk has reached their target of 10,000 signatures for their petition last night with 1 day to spare. When we were discussing what our target should be number of 5,000 and 7,500 were being discussed, but I thought to myself aim high and then get working. So I suggested 10,000 whatever the result it did not really matter, but the fact that we achieved it is great for the morale of all those who took part. So if any of you are reading this well done.
BIT2 Ella, as some of you who know me will know, I don't ask too many questions of my daughter and as she does not live with me it is difficult to assess her situation, but let me say this: she picked up a bladder infection in Poland, probably because they cathaterise their patients at night and when she got back home and had it tested it was quite a significant one, similar to one that landed her in A&E last time she had it. But this time she is carrying on with life as normal, the antibiotics are not affecting her balance and ability to get around. She went to work on Friday then went out in the evening. Has been actibe on the internet and joinged the facebook fan page: http://www.facebook.com/ms.ccsvi.uk
which she had refused to do before the procedure because she did not want to be reminded of what may or may not happen to her in Poland.
So I get a positive picture from all that.
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 MSUK » Sun Feb 28, 2010 12:40 am

Well done MS-CCSVI-UK!

"When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.”

Great news on Ella, Michele, not the infection, ofcourse 8O , but the way she is able to rise above it now.

squiffs
MS-UK - http://www.ms-uk.org/
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RESULTS

Postby Dovechick » Sun Feb 28, 2010 1:04 am

Thanks Squiffs, that is what I thought too... It is sometimes vvv difficult for me not to ask these questions. But she is a grown woman and I can't keep mothering her like a child, when she needs me she is always on the phone and when I don't hear I take it as a positive sign.
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 wiggy » Sun Feb 28, 2010 6:47 am

Michele,
So glad all went well in Poland and its over and Ella's life seems uninterupted except for the bladder infection which is not causing her too much grief. I loved the CCVSI-UK Video - I thought it was excellent! Well done. So happy that petition went through. I was checkin in here often looking for you and wondering how you were doing - very happy for you! Take Care and keep us posted
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keeping posted

Postby Dovechick » Sun Feb 28, 2010 9:34 am

Hi Wiggy, I certainly will, when a little more time has passed I will post about her progress on the tracking thread, but we need a bit of distance to see the real progress...
I hope you are keeping well...
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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Ella's further adventures in Katowice

Postby Dovechick » Fri Mar 19, 2010 5:16 am

Hi Friends, a lot has happened since you last heard from me. Firstly to our great disappointment Ella's vein re stenosed, but luckily as soon as I found out I was able to get onto the clinic in Poland and within a week (17th March) we were back in Katowice where they confirmed that the vein had collapsed again and they put in a stent so it should not happen again. She is two days post op now and beginning to show the improvements that she saw last time before her vein collapsed again.
This is very encouraging because it is obviously connected to the condition of the vein and cannot be attributed to the dreaded placebo effect many people quote at us about this procedure.
The other good news is that the Clinic is going to be offering a training programme news of which European doctors are receiving with considerable interest and enthusiasm as their slot in Italy was cancelled in favour of the training taking place at Buffalo...
Still nothing much happening in UK, but we (ms-ccsvi-uk.org) are going to deliver the petition that closed recently to the Prime Minister on Monday. We got over 10,000 signatures in the space of two months... Shows you and us that the will is there to make this happen.
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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ella improvement

Postby jak7ham9 » Fri Mar 19, 2010 5:24 am

Hi Great to hear of stent. I am having liberation with Sclafani in NY. I am going to try to convince him to use stents otherwise I have a feeling I'll be going back in a few months .Oh well at least we're moving along being the guinea pigs
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Postby hope410 » Fri Mar 19, 2010 5:24 am

Great news, Dovechick (on all fronts) and so happy to hear that Ella was able to get "fixed up" again so quickly.

Very exciting that assistance might become more easily available soon as more doctors are able to provide treatment. The rate of knowledge will help everyone so much as they learn more about what to do and how best to do it for us.

Keep us updated from your side of the pond, and best wishes delivering your wonderful (and large!) petition to the PM!
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Postby acol » Fri Mar 19, 2010 6:03 am

I am so pleased that everything seems to be working out well. Thank you for keeping us all informed.
Nigel
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Postby ClaireParry » Sat Mar 20, 2010 5:09 am

Hi Michele,

Send my best wishes to Ella.

It's great that people are able to get back in quickly if needed and at a reasonable cost.

Claire
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Postby Algis » Sat Mar 20, 2010 5:54 am

That's a relief; I have been watching any move from you :)

Best wishes and be well.!
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Meeting you in Katowice

Postby fraser » Sat Mar 20, 2010 6:17 am

Hope you had a safe trip home. It was so wonderful meeting you both in Poland and sharing our experiences. As you know my husband has endless energy since his operation, so I'm just killing time waiting in our hotel room for him to come back!

I hope your daughter continues to improve now that she has a stent. I only hope the same for my husband, because he feels like a "new man". Such an exciting time in our lives.

Wishing you all the best,
Fraser
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Hi Fraser

Postby Dovechick » Sat Mar 20, 2010 9:54 am

It was a great pleasure to meet you and your husband. It felt so good to be in the company of people who had the courage and foresight to do this for themselves. I hope we can continue to stay in touch and exchange experiences.
We have just arrived at Ella's home and the trip was eventless everything happened as it should.. We were sad to leave Marek behind as we will probably not see him again... or have much contact with him when he is walking around Poland.

Ella is walking around her flat without her stick and negotiating corners and different surfaces as well as I have seen her do in months... I'll be with her till monday so hope to see some more improvements before I leave.

Did you make it to Auswitch today? I hope it does not leave you feeling too blue.
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 lilaclomax » Sat Mar 20, 2010 11:50 am

Great news :D

We are coming home to the UK tomorrow lunchtime, it was really good to meet you, Ella, Robert and briefly others including Fraser. I have not noticed any big changes yet other than warm sweaty feet - yes they do smell for the first time in years (strange to get excited about that!)
Fingers crossed for improvement (and reports) over the next few weeks/months.
Has anyone got the website for Marek's walk yet?

Jennie xx
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