CCSVI treatment for MS in the UK

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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CCSVI treatment for MS in the UK

Post by MSUK » Tue Oct 12, 2010 6:14 am

Image

The first CCSVI operations in the UK for multiple sclerosis patients - known as the liberation procedure - will take place in a private clinic in Edinburgh later this month.

The angioplasty procedure to treat narrowed veins in the neck is being arranged by the Essential Health Clinic in Glasgow, which has already screened 400 patients for the condition.

Until now, UK patients have had to travel to clinics abroad for treatment, including in Poland and Bulgaria.

We talk to Glasgow GP Dr Tom Gilhooly who has arranged the scanning and treatment and seek reaction from other experts in the field about this new treatment....Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2954
Last edited by MSUK on Tue Oct 12, 2010 7:36 am, edited 1 time in total.
MS-UK - http://www.ms-uk.org/

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Algis
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Post by Algis » Tue Oct 12, 2010 6:24 am

Dr. Gilhooly is a very open-minded person; among other he is an advocate for the LDN:

http://www.bigonglasgow.com/2010/dr-tom ... rapy-22237



(FWIW LDN is the only thing that helped me so far - Tho it might be a 2.5 years placebo effect - OR the normal course of "my" MS - Who knows)

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Post by Coolcatcarrie » Tue Oct 12, 2010 7:35 am

woohoo go Dr Gilhooly! Great man! when i met him after my CCSVI scan I found him very open minded too and v positive!

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Post by EJC » Tue Oct 12, 2010 2:01 pm

Have any of you who have had a scan at EHC yet had the appointment for your procedure in Edinburgh?

We were right at the beginning of week two of the doppler scans but have yet to hear anything about a date for the procedure. Just wondered if anyone has actually yet been booked in?

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Post by Coolcatcarrie » Wed Oct 13, 2010 1:28 am

Hi, no i've not had an appointment date yet, but I was after you - in August. I was wondering the same thing - if anyone else has a date for the procedure yet. Just a waiting game hey. Carrie

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BalsaBoy
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Post by BalsaBoy » Wed Oct 13, 2010 4:43 pm

I was scanned on July 8th. No appointment for treatment yet. First veinoplasty procedure is scheduled for 28th October so I'm sure they'll give out dates soon.

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Post by debbie8067 » Fri Oct 15, 2010 7:19 am

Hi there.... had my positive scan at EHC on Jul 13th and still waiting for appt. date. When I spoke to the receptionist there last week re my LDN repeat script,she said that they would give us all plenty of notice so as to arrange travel etc . So it can't be much longer...... It's like waiting for Christmas :D

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Post by HopingHusband » Sat Oct 16, 2010 4:22 pm

We have been on the list since June and received our appointment for the Doppler Scanning only in Glasgow a few days ago.

We had a choice of Oct 28/29 or the entire month of November.

Since this was only for the Scanning portion and they have not confirmed a date for the Procedure, we opted to wait until early 2011 for both Treatments at the same time and took our name off the list to give someone else an opportunity to go.


They are going to have 3 procedures done before the International Conference on the 29th (Professionals / Doctors) and 30th (Public)

If anyone knows more about Scotland, please let us know.

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BalsaBoy
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Post by BalsaBoy » Sat Oct 16, 2010 4:44 pm

If anyone knows more about Scotland, please let us know.
Small, mountainous country. Average temperature in summer 15 C. For the other 51 weeks it's -2 C.

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Post by silverbirch » Sun Oct 17, 2010 1:03 pm

I have posted this in another thread in this forum but think its good to post it here

NICE are looking into it I think this is a positive and would welcome thoughts from the forum good or bad xx
NICE dont seem to be a fan of the DMD currently on offer they have asked for a cost reduction I do hope they put the funds into CCSVI....

Balloon angioplasty with or without stenting for chronic cerebrospinal venous insufficiency (CCSVI) in MS

NICE has been notified about this procedure and has considered it as part of the Institute’s work programme. The procedure is being monitored as we are awaiting use in the NHS.

The procedure will be reconsidered at regular intervals to determine whether this has been resolved.

http://guidance.nice.org.uk/IP/891

NICE is the UK's Governing body for medical procedures - medications
NICE are the ones who will pass CCSVI to be carried out of the NHS

NICE have raised their concerns (2009) over DMD drugs and its lack of effectivenes and have asked drug company's to reduce the cost supplied to the NHS

Dr Hubbard commented on NICE and the DMD in the lastes video posted by joan beal - http://ccsvi.org/

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EJC
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Post by EJC » Fri Oct 29, 2010 9:49 am

I understood there was a procedure slated for the 28th October in Edinburgh.

Anyone know if it actually took place,and if it did, what was the outcome?

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Post by Coolcatcarrie » Fri Oct 29, 2010 9:53 am

Heard 3 took place yesterday that went very well, x

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Post by EJC » Fri Oct 29, 2010 10:34 am

Splendid....Any more info?

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Jasper9
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Post by Jasper9 » Sat Oct 30, 2010 4:48 am

I had a positive scan at EHC Glasgow last month, and am awaiting a date for the angioplasty. Apparently I have 4 of the 5 CCSVI criteria (including completely closed LJV), so am a good case for the procedure.
Hoping to get seen early in the new year, but would be very interested to hear of anyone's experiences of the procedure.

Also I'm hoping that we see some feedback from the conference. Hopefully there will be some video footage available of the presentations etc.

Anyway, it's good to hear that it's moving on and the first procedures are underway...

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EJC
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Post by EJC » Sat Oct 30, 2010 10:36 am

Don't hold your breath on that early new year appointment, Emma was scanned mid July and we still don't an appointment.

Actually what I do find dissapointing is the absolute lack of any information whatsoever for those that have been scanned so far.

It would have been nice just have a put a paragraph on the website stating three procedures had been performed and everything is hunkey dorey. All those waiting will be hearing withing a week/month/year/decade for their appointment.

Just in limbo now.

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