CCSVI in the UK

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

CCSVI in the UK

Postby Paul8424 » Thu Nov 10, 2011 10:37 am

Hi

I am new to the site and I was hoping to get some advice.

I was diagnosed with MS two months ago. My doctor is pushing me to go onto meds, but I have been following the Swank and George Jelinek's diet and I am extremely strict on the diet. Since reading their books I am trying to avoid medication, so I am looking at the CCSVI treatment.

I live in London and have been trying to find CCSVI treatment in the UK. Unfortunately, there are only two places. One is in Birmingham (which is fully booked for the next couple of months) and the other is Glasgow (the waiting list there is only 3 months but I would have to pay £100 just to go on the waiting list for an appointment, that doesn't sound right). Does anyone know of any other places in the UK? What are people's thoughts on other European countries? How would I book an appointment there?

My other concern is the cost. I am in very good health and my symptoms are not that serious, but my father had the disease and within 4 years he passed away from it (it should be noted that he was quite a severe and rare case). So I want to get treated as soon as possible, I also read that you should receive the treatment as soon as possible following your diagnosis, but I am not sure if this is true. So if I go for the screening will I be put forward for the treatment or will they just tell me to come back in a few years time? I don't want to waste money on the screening just to be told to come back at a later stage.

Sorry for the long post but I am extremely confused and I don't know what to do.

Thanks
Paul
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Re: CCSVI in the UK

Postby Cece » Thu Nov 10, 2011 11:39 am

Welcome, Paul. Sorry to hear about your diagnosis, and your father having passed away from MS. I am not familiar with Birmingham as a clinic but I have heard great things about EHC in Glasgow. Dr. Reid has been involved in collaborating with other CCSVI IRs. He recently presented at the IVEC in Milan. He also uses IVUS on some if not all patients. It is rare to find a center that uses IVUS and it is considered the gold standard which may help IRs find more stenoses than they otherwise would and to more appropriately size the balloons, using the measurements given by IVUS. (IVUS is intravascular ultrasound from within the vein, as part of the procedure.) However Dr. Reid does use cutting balloons on occasion, which may result in greater risk of thrombosis, and he does not use high pressure balloons, which Dr. Sclafani has said may be necessary for stretching the valve enough that it does not recoil. I was treated by Dr. Sclafani and it has gone well for me.

The CCSVI blockages are probably congenital. It is likely that the blockages are there, since CCSVI seems to be highly associated with MS, and that they'll be as severe now as they would be in a few years, although we are still at the beginning stages of learning about this. Getting treated early makes sense because the brain has incurred less damage at this point, and the hope is that CCSVI treatment reduces further damage and allows for healthier brain environment that may bring about healing.

I would say read up on CCSVI and also go ahead and meet with Dr. Reid or whichever IR you choose for the consult. Once you know more about your own particular situation, such as what your doppler shows, then you can make a more informed decision.
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Re: CCSVI in the UK

Postby esta » Thu Nov 10, 2011 12:42 pm

i ditto cece's advise wholeheartedly. go to glasgow, they have more experience- which is what i based my choice on. you may have to redo it, but being newly diagnosed , your damage from ms may be less this way...
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26/08/10 stent RJV
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Screening for CCSVI in the UK

Postby MarkW » Sat Nov 12, 2011 4:56 am

Hello Paul,
My advice would be to have colour doppler ultrasound screening by EHC in Guildford. The cost was 525 gbp last year. Expensive yes but Vic Fernando is an expert in screening. Unless you are prepared to spend about 10k gbp on diagnosis and treatment and follow up you should wait and see. Please do not go to a non IVUS clinic for invasive diagnosis and treatment just to save money as your diagnosis will be incomplete. There are two 'gold standard' clinics, driveable from London. They are EHC in Scotland and Aalst in Belgium. You need to check exactly what they will do and how much they will charge you. You will realise that Belgium is closer to London than Scotland but there are less language issues in Scotland. It is a personal choice.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: CCSVI in the UK

Postby cheerleader » Sat Nov 12, 2011 11:13 am

Paul,
Welcome. You've received great advice from some CCSVI elders. I just wanted to encourage you in your following the Swank and Jelinek diets, and your holistic approach. It must be terrifying, having seen your father's decline. Dr. Jelinek was in a similar situation with his mother, and his complete lifestyle approach has worked for him. There was a woman, Judy Graham, who was following his program, had mild MS, and did not have CCSVI when tested in Glasgow.

For more lifestyle input and some of the science behind it as related to CCSVI, check out the Endothelial Health program I created for my husband. And hang in there...you are newly diagnosed and proactive. There is much hope,
http://www.ccsvi.org/index.php/helping- ... ial-health
take care,
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI in the UK

Postby Cece » Sat Nov 12, 2011 11:31 am

Dr. Beggs was talking about the possibility of resistance to flow in the capillaries, and that even after the resistance to flow down in the jugulars was relieved, there might still be that resistance higher up, and this might theoretically be an explanation for the subset of patients who do not experience any relief after CCSVI venoplasty. Do you think the Swank diet might be of benefit in improving the health of the capillaries and the possibility of improvements in the resistance to flow in the capillaries? I could eat heathier....
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Re: CCSVI in the UK

Postby cheerleader » Sat Nov 12, 2011 2:40 pm

Cece wrote:Dr. Beggs was talking about the possibility of resistance to flow in the capillaries, and that even after the resistance to flow down in the jugulars was relieved, there might still be that resistance higher up, and this might theoretically be an explanation for the subset of patients who do not experience any relief after CCSVI venoplasty. Do you think the Swank diet might be of benefit in improving the health of the capillaries and the possibility of improvements in the resistance to flow in the capillaries? I could eat heathier....


Cece--I just heard from a friend who was tested at BNAC and showed intracranial cerebral reflux, which is not currently treatable. Yes, there are some who have problems inside the brain, and there's no venoplasty to address it. Honestly, if it was me, I'd do everything in my power to keep the endothelium strong. Including diet, supplements and regular exercise. I'd stop smoking, drinking and eating junk food. I'd work on my stress response and meditate. I might even go vegan (like Bill Clinton did after his venous graft stent restenosed.) Since I cook in our household, Jeff sits down to leafy greens, beans, curry and healthy meals, and I put his supplements together for him. Arlene Hubbard does the same for her family, including gluten free. But I know it's worlds harder for those who are sick and doing it for themselves without a healthy caregiver....Jeff says the same.

You got rid of the diet coke :) You can do it, Cece.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI in the UK

Postby hwebb » Sat Nov 12, 2011 2:55 pm

I thought a neurosurgeon who is also a CCSVI specialist could treat intracranial venous reflux? Dr Elcio Mechado has shown some pretty stunning YouTube's of treatments such as these in the last couple of weeks (but not on MS patients).

Check this out: http://www.youtube.com/watch?NR=1&v=yzXD0R5S5Dg

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Re: CCSVI in the UK

Postby Cece » Sat Nov 12, 2011 6:49 pm

:oops: In August I slipped a bit on the Diet Coke resolution, and am working on giving them up again. I found bottled green tea that I loved and that seemed a perfect replacement...until two packs later, when I discovered that there was phenylalanine added. Dangit. But I exercise more than ever, thanks to my improved ability thanks to venoplasty; and I eat healthier thanks to improved appetite thanks to venoplasty, thanks to drsclafani.

Do neurosurgeons generally accept intracranial venous reflux as a condition in need of treating? My guess would be that they don't or this would all be easier.
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Re: CCSVI in the UK

Postby NHE » Sun Nov 13, 2011 1:51 am

Cece wrote::oops: In August I slipped a bit on the Diet Coke resolution, and am working on giving them up again. I found bottled green tea that I loved and that seemed a perfect replacement...until two packs later, when I discovered that there was phenylalanine added. Dangit.


Why not make your own green tea? I drink it unsweetened, but you could always add a pinch of stevia.


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Re: CCSVI in the UK

Postby hwebb » Sun Nov 13, 2011 3:49 am

I think intracranial reflux is always bad ...but you'd have to ask the expert!

here's another one of his cases:

http://www.youtube.com/watch?v=0aEidrPLK-Q&feature=share

The story behind the story:

50 year old woman being prepared for trigeminal nucleotomy (neurological surgery into the brainsteam) is found to have CCSVI. She'll have jugular angioplasty instead.
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Re: CCSVI in the UK

Postby Paul8424 » Mon Nov 14, 2011 12:08 pm

Thanks for all your advice. I am definitely going to give it a try.

So basically, I have two options. There is a CCSVI clinic in Bruges (http://www.ccsvi-online.com/) and, as it was mentioned earlier, one in Glasgow. I am more inclined to choose the one in Bruges, as it is cheaper and has a shorter waiting list.

I am definitely going to do some more research, but thank you for all your advice!
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Re: CCSVI in the UK

Postby Cece » Mon Nov 14, 2011 1:22 pm

keep us posted with how it goes!
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Aalst not Bruges

Postby MarkW » Tue Nov 15, 2011 5:28 am

Hello Paul,
Belguim is a small country but now has two clinics offering the procedure. As far as I know it is the one in Aalst (near Brussels) that has IVUS available. I hope that Rob (robnl) sees this and gives exact details.
I know someone who went to Aalst from Oxford and speaks highly of it but have no personal experience.
Best wishes,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: CCSVI in the UK

Postby Paul8424 » Tue Nov 15, 2011 11:22 am

Thank you Mark.

I will email Rob (robnl) and ask him for advice.

Thanks to everyone for their help.
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