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by Dovechick
Sat Mar 20, 2010 8:25 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ella's adventures in Katowice
Replies: 117
Views: 26370

respond somewhere else

Val, as much as I like helping people I don't have time to trawl through all the threads as I am spearheading a project in the UK, to get research started here. It is a full time, unpaid, exciting, thankless, demanding, emotional and disappointing at time, constant job... If you can find me a link t...
by Dovechick
Sat Mar 20, 2010 9:54 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ella's adventures in Katowice
Replies: 117
Views: 26370

Hi Fraser

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 everythin...
by Dovechick
Fri Mar 19, 2010 5:16 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ella's adventures in Katowice
Replies: 117
Views: 26370

Ella's further adventures in Katowice

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 coll...
by Dovechick
Thu Mar 18, 2010 2:21 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Take on the NHS...
Replies: 42
Views: 9228

venograph and mrv

Both Venography and MRV would be much more expensive than Doppler and CAT (CT) scan.
by Dovechick
Wed Mar 17, 2010 7:33 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Take on the NHS...
Replies: 42
Views: 9228

CT Scans

Hi Nigel, I don't know much about CT scans, but what I do know is that it produces a static image made up of many slices of your body or part of your body, this image can be maniputated to show a 3D effect of organs and structures. However what it does not do is produce a continuous image in time of...
by Dovechick
Sun Mar 14, 2010 10:58 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni words of caution on stents.
Replies: 31
Views: 14149

Thanks

Friends, thank you for your appreciation and support. I try not to over mother my daughter, she is after all a grown woman. I don't ask questions, I don't keep in touch daily, in fact I mostly wait for her to call me, but I have never allowed her to dictate what I do to make a difference to her and ...
by Dovechick
Sun Mar 14, 2010 3:25 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni words of caution on stents.
Replies: 31
Views: 14149

return to Poland

I would leave it longer unless like Ella you see all your improvement disappear quickly. More like 3 months.
by Dovechick
Sun Mar 14, 2010 1:03 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni words of caution on stents.
Replies: 31
Views: 14149

Ella's PTA

Thanks Joan, I'm hoping this is the last leg of our journey...
by Dovechick
Sun Mar 14, 2010 9:54 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni words of caution on stents.
Replies: 31
Views: 14149

Ella's experience

Ella's PTA only lasted 5 days, we are returning to Poland for another procedure and stenting seems the only solution.
by Dovechick
Sun Mar 14, 2010 9:15 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Who are the BIG names in CCSVI ?
Replies: 138
Views: 148989

Doctpr

Hi YK, if you look on this site it has a list of all the centres we know of in the world. You are not alone in not being able to find someone to do this in your country. We in the UK are in the same boat. My MP said what is the problem? this is not rocket science... but the Neuros don't like it and ...
by Dovechick
Mon Mar 08, 2010 6:04 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: First liberation procedure in UK
Replies: 174
Views: 52810

Nothing in Belfast

Sorry Odd1, there is nothing available in Belfast. The only one which took place was done as a favour by a colleague of the patient. If it were to take place in Belfast, I have no idea how much it would cost.

It cost us about 7000 Euros to have it done in Poland.
by Dovechick
Sun Mar 07, 2010 11:20 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI tracking project-POST PER P.1 FORMAT ONLY
Replies: 163
Views: 345609

Ella Findlay

CCSVI TRACKING [Please use date format MM/DD/YYYY] MS HISTORY Name: Ella Male/Female: F Age: 30 Date(s) & type of neurological diagnosis RRMS, SPMS, still steroid responsive Lesion locations (most affected side, LEFT), number: ? MS treatments: no DMDs MS symptoms before stenosis intervention: Nu...
by Dovechick
Sun Feb 28, 2010 9:34 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ella's adventures in Katowice
Replies: 117
Views: 26370

keeping posted

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...
by Dovechick
Sun Feb 28, 2010 1:51 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: We need your input on a very important decision
Replies: 132
Views: 26756

How to go about changing opinion

Hi Vonna, What I say now is my personal opinion not that of the group I belong to http://www.facebook.com/ms.ccsvi.uk although in most instance I would say they were convergent. We are having similar problems with our incarnation of the MS soc, and it is closely tied to what goes on with the MS soc ...
by Dovechick
Sun Feb 28, 2010 1:04 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Ella's adventures in Katowice
Replies: 117
Views: 26370

RESULTS

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.

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