Unsure about CCSVI treatment in Bruges

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

Unsure about CCSVI treatment in Bruges

Postby Paul8424 » Wed Nov 16, 2011 9:51 am

Hi

I made a post a few days ago about the lack of CCSVI clinics in the UK (chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18426.html). Thanks to the great responses I found a clinic in Bruges under Dr Jan De Letter.

I contacted them and the waiting list is very short. I can get the treatment within the next month. However, there are a few issues I need help with:

- I was recently diagnosed with MS (my first symptom was double vision at the beginning of the year and then some numbness in my legs 3 months ago). My symptoms are not bad (my legs are still partially numb and I can feel the ms hug every now and then). My father was diagnosed with the disease when he was 46, and by the age of 50 he passed away due to it. So I am doing whatever I can to find treatment. So my question is, if my symptoms are not bad, will anything show up on the CCSVI screening? The full procedure plus screening is quite costly (about £4,500), so I will need to take out a loan. But if I go for the screening and they cannot find anything then I will be reimbursed most of the money but I will still be stuck with a large loan that I will have to pay off.

- I refuse to go on meds as I saw what they did to my father. Instead, I am following the Swank and George Jelinek diets. I am extremely strict and have not cheated since I started them (I started the diets as soon as I was diagnosed). So if I have the CCSVI treatment will I need to have another treatment a few years down the way (I am assumming that the diets will keep my MS at bay)?

I need to make a decision within the next few days. Please tell me what you think.

Thanks
Paul
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Re: Unsure about CCSVI treatment in Bruges

Postby Cece » Wed Nov 16, 2011 11:07 am

Paul8424 wrote:So my question is, if my symptoms are not bad, will anything show up on the CCSVI screening?

Why not ask the clinic what their percentage is of finding CCSVI in pwMS? It has varied at different clinics and in the research. There are people who have gone for screening and nothing was found, although I think it is uncommon.
So if I have the CCSVI treatment will I need to have another treatment a few years down the way (I am assumming that the diets will keep my MS at bay)?

I would guess yes because it is still early and they have not yet figured out what is the best treatment. But there are people whose veins have remained open after one treatment. There are people who got a few weeks of relief after a treatment and then their veins closed up and their symptoms came back. So there's no guarantee of it lasting even a few years.

I can speak for myself that I am healthier now than I have been in a very long time. My right jugular stayed open after one procedure and my left stayed open after two.
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Re: Unsure about CCSVI treatment in Bruges

Postby Rainbolt » Wed Nov 16, 2011 9:35 pm

If you have CCSVI and the doppler is performed as Zamboni has said it needs to be in both laying down and sitting up etc... then it should show up but it can be missed and the only true way to be sure is with a venogram.

If you have treatment chances ar eyou will need re-treatment at some point. Most of the people I know personally who have done it begin to get symptoms back (if they went away) within months of treatment. for me it was about 2-3 months...

It is early in the game and if you feel you are doing well enough save your money until they figure out how to keep the veins open for longer or it's covered by insurance like the drugs are... At least this is my honest opinion and how I'd go if I were in your position.

Have you looked at the Best Bet Diet?

Good luck!
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