Search found 350 matches
- 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...
- 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...
- 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...
- 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.
- 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...
- 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 ...
- 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.
- 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...
- 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.
- 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 ...
- 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.
It cost us about 7000 Euros to have it done in Poland.
- 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...
- 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...
I hope you are keeping well...
- 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 ...
- 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.