CCSVI Conference feedback

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

CCSVI Conference feedback

Postby Jasper9 » Fri Nov 05, 2010 1:31 am

The CCSVI conference in Glasgow UK was held on 29-30th October, hosted by the Essentail Health Clinic.
Here is the feedback they sent out in the newsletter today. Worth a read:
"We have had the great pleasure of hosting with MS-CCSVI UK, the first CCSVI conference in the UK.

On Friday 29th we had 42 medical delegates from all over the world to share their experience in CCSVI. This included Professor Marian Simka from Poland (whose team have carried our over 800 CCSVI cases in the past year), Dr Ivo Petrov from Bulgaria (who has carried out 461 cases) and Dr Al Omari from Jordan (who has performed over 300 cases).
The main outcome from the Friday meeting was a great willingness to work together internationally to prove the case for CCSVI.

It is clear from the presentations on both days that some of the symptoms of MS are caused by venous congestion and that these are easily reversible by surgical intervention. The new reality is that MS (and probably other neurological conditions) have a mix of immune and vascular components and to treat this condition effectively we must address both aspects.

We also had interesting presentations from Dr Mark Haacke from the USA and Dr Sandy MacDonald from Canada, on imaging in CCSVI. There is general consensus that Doppler imaging is an essential part of CCSVI screening and that MRV is a useful adjunct to treatment for those involved in CCSVI treatment.

On the day before the conference we had the pleasure of carrying out the first two cases of CCSVI in the UK. I was fortunate enough to witness these cases carried out by Mr Donald Reid and Dr Ivo Petrov at The Edinburgh Clinic. Both cases were challenging so the presence of Dr Petrov was comforting. He has shown the importance of the Azygous vein in the proper management and treatment of CCSVI with over 70% of cases having significant Azygous involvement.
To actually witness the huge improvements in venous circulation that angioplasty can produce was truly amazing. It was my best day in my 30 years in Medicine.

It is clear that we have a remarkable new development in CCSVI which we have a duty to enforce. Although not everyone with MS will have treatable lesions; even if the minority have treatable venous lesions, we still need to treat these.

On the Saturday we had an excellent presentation by Gian Franco Campalani, a cardiothoracic surgeon who has undergone three CCSVI treatments. He gave a unique insight into the patient experience and the importance of persistence in seeking new treatments. His refusal to accept the side effects of the discredited CRAB drugs and his belief in alternatives is inspiring to all of us.

The key message is that CCSVI has arrived in the UK and on the available evidence, it is set to become a major player in the treatment of MS throughout the world."
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Re: CCSVI Conference feedback

Postby Rokkit » Fri Nov 05, 2010 5:03 am

The main outcome from the Friday meeting was a great willingness to work together internationally to prove the case for CCSVI.

Getting a paper published would be a great start.
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Re: CCSVI Conference feedback

Postby ErikaSlovakia » Fri Nov 05, 2010 6:15 am

Rokkit wrote:
The main outcome from the Friday meeting was a great willingness to work together internationally to prove the case for CCSVI.

Getting a paper published would be a great start.

I've got an email from Essential Health Clinic yesterday - (news) and it also says:
"We will be uploading the presentation from our speakers, along with various videos, to our website and these will be available here. We will add more videos/information in the next 7-10 days."
So we must wait but there will be something.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Algis » Fri Nov 05, 2010 6:19 am

To actually witness the huge improvements in venous circulation that angioplasty can produce was truly amazing. It was my best day in my 30 years in Medicine.


Way to go Buddies :)
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Postby Cece » Fri Nov 05, 2010 6:24 am

I liked that line too, Algis.

Also taking notes that Dr. Petrov has found major azygous blockages in 70% of patients. Sinan 95%, Simka maybe 10%. There is much disparity there.

I talked to a doctor who attended the Glasglow conference, he says he went there still somewhat skeptical but he came back convinced.

I love when our docs collaborate.
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Postby PCakes » Fri Nov 05, 2010 7:45 am

Cece wrote:I talked to a doctor who attended the Glasglow conference, he says he went there still somewhat skeptical but he came back convinced.


..a neurologist?? ..wishful thinking? ;)
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Postby nagsy » Fri Nov 05, 2010 8:19 am

Cece wrote:I talked to a doctor who attended the Glasglow conference, he says he went there still somewhat skeptical but he came back convinced.


Cece, This is great news. Not sure if you have had the procedure but I would be pounding my docs door if I knew he was convinced.

I was disappointed that on the Friday of the conference ('Medical persons' day) there were only 3 UK docs and a MS nurse. However I did speak to a number of people on the Saturday who were researchers and scientists. So hopefully some kind of research will start in the UK soon.

It was so refreshing to see and hear that the expert panel are now collaborating. It was interesting to hear about the different methods they were using (standard balloon, cutting balloon and double ended balloon).

Poland, Jordan and Bulgaria all seem to be using larger balloons than 4 months ago when my wife had her procedure.

Donald Reid for EHC (Glasgow) also showed us a new type of catheter which he is testing which has a camera in it and so shows all occlusions from inside the vein so less stenoses are likely to be missed - amazing but still needs testing (and will be more expensive).

A couple of us had the privilege of speaking with Dr Schellling (for over an hour)- what an absolute gem of a person, so humble. He was saying that trans-cranial dopplers will be the way forward but there is so much still to learn but much progress is being made.

I was lucky enough to have dinner with Dr Al-Omari - and in his experience of nearly 400 procedures he advised that the treatment is known to be more favorable for those who are less disabled and those who still have strength in their limbs.
Generally speaking brain-fog, fatigue and balance issues are the first things to get sorted out. Having said that he said there were many exceptions to the rule, some people with less symptoms not showing progress and some people with severe symptoms getting miraculosuly better.

A key point to take from the conference was that all the panel were in agreement that CCSVI is not the only factor in MS. Diet, environment and possibly some other factor also play their roles in any progression or regression.

Cheers,

Pinda
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Postby Cece » Fri Nov 05, 2010 8:44 am

PCakes wrote:
Cece wrote:I talked to a doctor who attended the Glasglow conference, he says he went there still somewhat skeptical but he came back convinced.


..a neurologist?? ..wishful thinking? ;)

PCakes, not a neurologist, an IR.

Nagsy, great report. Do you know what is meant by a double-ended balloon? It reminds me of the "kissing balloon" brought up at Dr. Sclafani's symposium, when two balloons are inserted into the same vein. Maybe with the bigger balloons and more aggressive techniques, there will be a role for this too. Those innovative radiologists, always innovating.... :)
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Postby MS_HOPE » Fri Nov 05, 2010 10:15 am

Jasper9, thanks so much for posting this! Much helpful, and hopeful, information.
CCSVI:  Making Sense of MS
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Postby pklittle » Sat Nov 06, 2010 2:45 pm

On Friday 29th we had 42 medical delegates from all over the world to share their experience in CCSVI. This included Professor Marian Simka from Poland (whose team have carried our over 800 CCSVI cases in the past year), Dr Ivo Petrov from Bulgaria (who has carried out 461 cases) and Dr Al Omari from Jordan (who has performed over 300 cases).
The main outcome from the Friday meeting was a great willingness to work together internationally to prove the case for CCSVI.


Where are the statistics of the outcomes of the 800, 461, and 300 treated by these doctors? I really hope they are tracking these patients. [/quote]
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Postby Jasper9 » Sun Nov 07, 2010 3:19 am

they are starting to publish the links to the presentations here:

http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi-conference.html
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Postby Rokkit » Sun Nov 07, 2010 6:34 am

Jasper9, those conference presentations are very cool! I particularly liked the Jordan doctor Omari's (because I haven't heard from him before). He has one slide which appears to show a direct correlation between azygous stenosis and spinal chord lesions on an MRI. Look for the azygous slide titled "Middle Stenosis."

http://www.essentialhealthclinic.com/we ... -omari.pdf
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Postby sbr487 » Sun Nov 07, 2010 7:39 am

this pdf is close to 40 MB :x
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Cece » Sun Nov 07, 2010 7:51 am

pklittle wrote:Where are the statistics of the outcomes of the 800, 461, and 300 treated by these doctors? I really hope they are tracking these patients.

They really can't, it's medical tourism with no follow-up.

I am excited about the Hubbard registry specifically because of the year of follow-up.
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Postby Jasper9 » Sun Nov 07, 2010 9:26 am

Good observation Rokkit. To be honest I find it difficult to intepret all those images.
The videos of all the presentations are due to be available by 12th November, so that should put the slides in context and make it easier for me to understand the significance of his scans.
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