First liberation procedure in UK

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

Postby colmmc » Thu Jan 14, 2010 12:45 pm

acol wrote:Hi colm

Wow That was quick! Seriously, well done for starting this petition. I shall certainly put my name on the list and will circulate it to my friends to do the same.


Cheers
the more the merrier


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Postby acol » Fri Jan 15, 2010 5:59 am

Hi Colm

I don't know whether you want to create a separate thread regarding your petition to the Prime Minister? You have obviously put a lot of work into this matter and there may be many people with MS who may not spot your link but would otherwise wish to add their support.

As I have previously indicated, there are one or two things that could be queried in your petition but I strongly feel that the subject should receive more debate and not swept under the carpet as most neurologists would like to see happen.
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Postby colmmc » Fri Jan 15, 2010 11:21 am

Well its on here it on the ccsvi face book cover page also the ccsvi cover page and I post everywhere I go But Its not just mine do what ever you think to get more signs I'm all for that.

colmmc

http://petitions.number10.gov.uk/CCSVINOW
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Postby acol » Fri Jan 15, 2010 11:55 am

Hi colm

I'm sorry. I took my eye of the ball so to speak and have been blissfully unaware of the 'Bringing Liberation Thread to the UK' where this issue and others have been discussed and aired in considerable detail. It seems that it was only me that was in the dark - but not any more! I have been playing catch-up.
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Postby colmmc » Fri Jan 15, 2010 12:19 pm

Good to hear,
we need all troops ready for action. :lol:
colmmc

http://petitions.number10.gov.uk/CCSVINOW
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Postby Dovechick » Fri Jan 15, 2010 1:27 pm

acol wrote:Hi colm

I'm sorry. I took my eye of the ball so to speak and have been blissfully unaware of the 'Bringing Liberation Thread to the UK' where this issue and others have been discussed and aired in considerable detail. It seems that it was only me that was in the dark - but not any more! I have been playing catch-up.

Nigel have you caught up with us at
www.ms-ccsvi.uk.org
We would love to see you there...
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 acol » Fri Jan 15, 2010 1:49 pm

Michelle

Link appears to be broken. :(
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link

Postby Dovechick » Fri Jan 15, 2010 1:55 pm

Sorry Nigel I put a full stop in the wrong place.
www.ms-ccsvi-uk.org
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 acol » Fri Jan 15, 2010 2:38 pm

Hi Michelle

Thanks very much. Several of my friends are active on Facebook but I have been a bit slow in getting involved. Mild concerns about privacy etc. However, I will try to dip more of my toe into the water and have a look at what is going on in the wider world. I have been a passive member of Facebook for about a year. Thank you for the invitation. I am signed up to the No 10 petition and I see 1 of my friends has also signed up just below me. I thought that the 'YouTube' video link was excellent.
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Postby acol » Fri Jan 15, 2010 2:47 pm

Hi Michelle

Great photograph. Ella looks a little distant... You will see that my toe has at least got wet - at long last!
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CCSVI cost of procedure

Postby rethink » Sun Jan 24, 2010 8:27 pm

Gici, I'm happy for you and hope things are great for you. You had the CCSVI procedure in October. Can you give more information on how you are doing, etc.

Thanks for leading the way for the rest of us

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Postby Perky » Mon Jan 25, 2010 8:15 am

I am in the UK and very much want to be tested for CCSVI - however I am very anxious to get the right kind of testing, following the proper protocols, in order to avoid receiving a false negative result.

I am a member of e-med, the online private medical service, through whom I purchase my LDN prescriptions. I have today emailed them some information on CCSVI and asked them to advise how they can help me to get tested following the correct protocols (I included a link to Dr Haacke's protocols from the CCSVI facebook site).

I have received a reply from e-med saying they can refer me for such a condition, and the best thing is for me to choose a doctor in my area and pass the details to e-med for a referral to be made.

I don't know where to go from here, and whether this will be helpful or not...I'm not sure if getting a referral is the hard part, or finding the right person to be referred to! How do I know which doctor in the UK will be familiar with CCSVI testing? I think I will look up some interventional radiologists and contact them to see if the testing would be possible. I suppose I will have to pay for the tests as it will be a private referral but I really don't mind this if the testing is done properly.

Does anyone have any thoughts?
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Hi Perky

Postby Dovechick » Mon Jan 25, 2010 8:34 am

Hi Perky, there is no one we could recommend in the UK at the moment but we at www.ms-ccsvi-uk.org are working on it. Please come and join us on Facebook for more information. At the moment people in the uk have been going to Poland for treatment but the Polish list is now so long that they are suspending adding more people to it. In the meantime some people in the UK have been to consult vascular surgeons and neuro vascular specialist. Correct testing is more to do with training and correct programming of the equipment as with knowledge and awareness. However a MRV should show up problems in your veins even if the simpler doppler test does not.
There are some plans afoot for the training and setting up of diagnositic clinics and NHS referral centres in UK but it might take a while.
come and see what we are doing at:
http://www.ms-ccsvi-uk.org and sign the petition to the Prime Minister asking for clinical trials in the UK and get your friends to sign it too...
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: LIBERATION PROCEDURE IN U.K

Postby seeva » Wed Jan 27, 2010 4:44 am

HI member would you please let me know the contact details of ROYAL VICTORIA HOSPIAL'S BELFAST to do LP the one you had.Also contact details for the VS MR. ROBINBAKER. Who has paid the cost for the treatment ?
Thank you.
regards
SEEVA :roll:
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Postby LR1234 » Wed Jan 27, 2010 5:15 am

Seeva, This Dr does not do the LP in the UK. He did a procedure as a one off for a fellow colleague who had already had the procedure done in Italy.

He does not do the Procedure.

As soon as someone in the Uk agrees to do it I am sure Michelle will keep us up to date. I am currently speaking to 3 Vascular surgeons trying to get them on board.
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