This Is MS Multiple Sclerosis Community: Knowledge & Support

The UK Telegraph has a video report of this German clinic which is undertaking venoplasty alone or in combination with stem cell therapy in pwMS. I have not seen printed article as paper was sold out.

www.telegraph.co.uk/news/newsvideo/8082 ... linic.html

Can anyone post further information about the venoplasty on offer - how are veins checked, treatment offered, prices, waiting lists etc etc.

The doctor interviewed said that angio procedures (I expect he means venoplasty) has an incidence of side effects at level of 1 in 1000. He said they have treated 50-60 pwMS. Can our German friends provide more info please.

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

I do not believe stem cells can treat vascular malformations. The venoplasty is treatment; the stem cells are restorative for brain damage.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I think it's a Dutch company:
http://www.privatescan.nl/

They also treat CCSVI:
http://www.ccsvi-online.nl/ (on this site you can change the language to UK)

and refer to their other company Xcell centre here:
http://www.ccsvi-online.nl/ccsvi-specialisten

this is the Xcell website:
http://www.xcell-center.com/

They also treat MS patients (8000 euro):
http://www.xcell-center.com/treatments/ ... rosis.aspx
They claim to have treated 50 patients of wicht 50% reported improvement.

There is a lot of discussion going on in The Netherlands about this treatment. One of the most wellknown Dutch CCSVI patients has been offered a free treatment there. He has taken the offer. My opinion is that this is a marketing thing. Hoping he will feel better afterwards. Hoping more (paying) custumers will follow.

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I'm ready, I'm ready !

For sure is a marketing thing. The good part is that it is also marketing for us.
By the way, I think this is the future. Stopping progression fixing CCSVI and restoring damage with stem cells.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Thanks Joge for posting all the info on this Dutch company operating in Germany !! Why can't they offer venoplasty in the Nederlands ?
The price is higher than the doctor near Brussels but what is the waiting time for venoplasty in the Xcell clinic ? any info ? The waiting time for Belguim is now til Feb 2011 but the price is low. Belguim is closer to London than Glasgow so I know people from SE England who have booked. Please keep info flowing as the neuros in England seem to have a stangle-hold on progress, even blocking testing for restricted veins and stopping checks on people like me who have been destenosed.

Frodo, I agree with your thinking. Get a venogram test for blocked veins asap and venoplasty for any problems. Then wait for 6-12 months and track changes and check for re-stenosis. Then try stem cells in an EU/US clinic with experience. I doubt that correcting bloodflow will give my body the ability to repair 20 years of damage, time will tell.

I am not sure that arguing with MS neuros is a good use of time. We need to present the research as the CCSVI Alliance is doing. Then support people with the money to have destenosis. When we pass 5000 pwMS having been destenosed the clinical trial discussion is meaningless.

I feel sorry for people who cannot afford the cost or can travel for treatment. Its best to stay as close as possible to home for destenosis but many of our US colleagues think of London to Brussels as crossing a border and the sea but its really a train ride like Washington DC to New York.

Kind regards,

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

That must mean the day of the procedure itself. We are seeing post-procedure complications like clotting in greater numbers than that.

Hi again Mark!

There is no place in the Netherlands to be treated. Looks like the UK.

Dutch people have to go abroad, e.g. to Belgium (dr. Beelen, Aalst) or Germany (dr. Vogl, Prescan, Privatescan).

I guess the neuro's are blocking CCSVI-treatment.

But, things are changing slowly: in Elisabeth Hospital, Tilburg, The Netherlands, a trial is started. No treatment yet, but doppler/duplex by Zamboni-trained people & MRV. To see if stenosis are seen more often in people with MS.

I'm not familiar with the waitinglist in Germany, Privitescan or Prescan, but they are probably shorter than Belgium at the moment.

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I'm ready, I'm ready !

What about this one?

http://www.privatescan.nl/

Hi Algis!

You're right, this is a Dutch company, like Prescan. But you are tested and treated in Germany.

I was a client of Prescan http://www.prescan.nl/nl/onderzoeken/onderzoek-ccsvi

They sent me to a German company for the test: http://www.radprax.de/start/dok/1.php

They also offer treatment in Emsland, Germany, in the st. Bonifatius Hospital.
http://www.prescan.nl/nl/onderzoeken/on ... elingccsvi

Privatescan has a similar construction.

I ended up in Aalst, Belgium for the treatment (closer to home, cheaper, at least just as good) www.olvz.be

To add up: no test or treatment in the Netherlands.

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I'm ready, I'm ready !

Point noted

If I go abroad for surgery it will be Belgium anyway, since one of my daughters is living there

But preferably I would have it locally (for follow-ups).

Thanks for clarifying joge

There's a doctor, Randall Franz, in Ohio, a vascular surgeon, who has successfully treated a woman with P.A.D. [peripheral artery disease] with her own stem cells an she is now walking, avoiding amputation due to the regrowth of arteries. I wrote to him and asked if the same results colud maybe be experienced with the venous system, too.I haven't heard back yet, but I'll keep you posted.. Wouldn't that be just wonderful.......If it's feasible, maybe the MS community could be the catalyst for research [like for CCSVI]!?

Please be careful about the stem cell treatment from the x-cell-center. A doctor from this site is awaiting lawsuit because a child (1,5 years) died after treatment. At least, this treatment seems to be a much bigger intervention than angioplasty.

The german MS society has warned several times about this treatment. But this brings up another problem to me. They warned about the x-cell-center, and I believed them because I had no other information. But they also warned about CCSVI-treatment (altough not as explicitly as about the x-cell center) and I don't believe them because I have other information. So their warning about CCSVI-treatment questions all their other warnings, too...

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Cece a question
MarkW wrote:
The doctor interviewed said that angio procedures (I expect he means venoplasty) has an incidence of side effects at level of 1 in 1000.
Cece added:
That must mean the day of the procedure itself. We are seeing post-procedure complications like clotting in greater numbers than that.

Could you explain what you mean please. I have not seen reports on clotting with balloon venoplasty where the surgeon has prescribed anti clotting drugs. I could have missed them.

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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