This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Noda was actually based in Puerto Rico, not Spain. He is retired now, it's his successors Dr. Castillo and Dr. Perez Fernandez that are carrying on the work.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

This artery issue indeed very interesting. As regards other veins that could be responsible for spinal cord damage in addition to azygous, some CCSVI researchers expressed that there is potential blockage of other venous drainage from spinal cord (eg having routes to vena cava area/lumbar vein), but these veins seem to be more difficult to access for analysis of potential stenosis. Even though, when asked Dr Simka a question about this, understood from his answer that in his view the jugulars would most likely have major impact on the whole system. But who knows - more CCSVI research that will be undertaken on the other veins will reveal.

Thanks, Cece. I read so much that I don't always remember everything. I'm constantly going back and rereading.

I have inclined my bed for the last couple of months & though nothing of it - couldn't really see any difference - that is until I slept on a flat bed one night - I felt like a complete mess the next day - no energy, foot drop, brain fog, fatigued very badly! So I am a true believer :)

Chronic Cerebro-Spinal Venous Insufficiency, i.e venous insufficiency in the brain caused by blockages in the jugular and/or azygous, is a new phenomenon put forth by Dr. Zamboni. Yes, venous stenoses have been documented before in dialysis patients, but not in relation to venous insufficiency in the brain.

And the stenoses which you are talking about were clearly caused by in-dwelling catheters. My question was, in the absence of a clear cause like this, what is really pathologic, and what happens when we try to correct these natural stenoses, particularly if they are physiologic.

Cece, is that through chelation?

For me same experience, Tessar! Sleep best in my own inclined bed at home...and if travel the wooden blocks may not miss in my luggage (good to have kids that have wooden play blocks that serve perfectly for this purpose : first thing I do when arrive at hotel is to try to incline bed...otherwise it was carroussel the next day...

I should now test however if after procedure changed... but if possible to incline bed, don't know if want to risk to test it again...it does not harm to do so anyway.

Encouraging Dr Simka mentions they will invest in IVUS. I would think, for the cost of the procedure, it would however be good if they could then always apply it though... I would not understand what these "selected cases" could represent? If there is something to discover that otherwise can't be seen, how do you know that before in which patient necessary and in which not? Maybe, those that go to Euromedic now could ask a bit about IVUS and try to convince them to apply as a general standard in future - and ask what they mean with "selected cases". If there is the possibility, in my view the max. of CCSVI diagnosis should be tried.

Plavix can also cause vertigo. It s in the rare (1 patient out of 10000) side effects sector.
For me it s a possibility cause i have never had vertigo before. I should add that one month after i was put on it i noticed bruising in my arms. My oncologist friend gave me a full series of blood tests only to tell me that my blood (one year after campath and one month of anticoaggulants) is in a very good shape(?). However, i got to keep a closer look for the 2 following moths ll be on Plavix, Daflon and aspirin.

Vertigo: Plavix, MS or Liberation? Take your pick It s all the shame to me.

It is not accurate the description. Dr. Noda was treating people with TOS, which is a condition in which muscular problems compress the neck arterias. Of course, the same muscles also compress the jugular veins. Though he always though that the improvements were coming from releasing the firsts and not the lasts, probably he was wrong in this interpretation.

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

The medical industry over-regulated? True, it would seem to me that in the medical world, many things are boxed-in, locked into a grid.

In fact, we see this happen in other industrial sectors, not just the medical sector. As industries grow older and mature, they have difficulties to renew or innovate. Forces emerge that wish to maintain the status quo, keep the existing boundaries and division of work, not to canabalise the existing products or services, to hold on to prerequisites. Lobbies develop towards the government to make sure that regulations and rules reinforce the controls. I think this is no different now and here. Simka is right, we are over-regulated.

The matter needs goverance with the big G. Industry alone is not enough or not motivated enough to support and finance the work in this new ccsvi direction.

Compare this for a moment with the Internet. The Internet was develop bravely, some say recklessly. Away from old rules and regulations, away from old control points and institutions. A climate was created conducive for innovation. Its success is huge. Although our case is only a tiny tiny part of it, ccsvi would not have been where it is today had the Internet not been there.

Just last week, I read on this forum that the Int'l Society for Neuro-Vascular Diseases was/will be established. At the same time I read in the papers that a stent maker was taken over for Billions clearly linking this with the neuro-vascular dimension.

The Internet and the public fora have carried this thing so far. Now we need the Governments of the world to support this. It is not that things won't happen. If ccsvi is really the breakthrough we all hope it is (personally I believe it is) then the mantel will shift away from traditional believes and interests anyhow, and the new insight will eventually prevail. But things can be accelerated, for the good of those millions of MS patients out there and their families.

So far Governments have been largely absent from this debate. But if it is really true that this sector is over-regulated and rules and regulations impede or act as a barrier to developments, Governments have a responsibility to take. Governments can help to make sure old rules and regulations are lifted. Away from old institutionalised career bureacracies because there is always this risk of the invisible steer by old forces to sustain the old model: they would offer a lot of studies (in big int'l studies) but nothing would have changed 10 years on.

Governments should support the new professional Societies to make sure things happen, to help steer developments, and make sure the patients' voices are heard, e.g. through new social movements like these fora.

garyak,
This may have gotten lost. The following is something I copied from a post from Nunzio in a different thread. Think this might be the info you were looking for. Sorry about butting in, if it isn't.

From Nunzio....
It is "surgery" but it is not that invasive; this is the description of the procedure:

Under general endotracheal anesthesia and sterile conditions, place the patient in supine position with a serum bottle under the chest. Bilateral neck incisions, 4 cm above the clavicle. The incision is 4 cm in length and is made transversely in the area where you can feel the scalene muscles.

26. The sternocleidomastoid muscle are sectioned bilaterally with electro-coagulation of the cervical level C6-C7
27. The pre-scalene fat is dissected
28. When the jugular vein in front of the anterior scalene muscle is separated
29. The phrenic nerves were then dissected
30. The anterior scalene muscles are snipped at C6-C7, and also the insertion of the cervical
31. The interspinous ligament is cut at the same level
32. When stage III cervical ribs, the accessions are fought and cut the distal end of the cervical rib
33. When a "subclavian steal syndrome", is performed bilateral section of the pectoral muscles under
34. A thin drain "Penrose" is set and left for about two days
35. The surgical wounds were sutured with 5-0 Dacron
The entire article is below.
http://health.groups.yahoo.com/group/he ... essage/870

But did Simka mean, if transient worsening happens POST operation, then people have improved after having IBT?

I had my ballooning on my right IJV May 12th and I slept like a baby after that. But now I've become a restless sleeper. I didn't use IBT prior operation because I think my blood flowed better when I'm lying down. But now I start flop like a fish when I go to bed.

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My non-MS blog: Miia's Workshop of Moments

This is exactly what i have done, a combination of diet (BBD), on and off with varying degrees of strictness for the last 7 years, and Inclined Therapy for 5 months+ before opting to be treated for possible (probable) CCSVI. In my opinion, the sensible option.

I have opted for all of it together. And now when read this thread realise there was another improvement. Since had the procedure am able just to lie down on my inclined bed and am then really able to immediately fall asleep whenever I want to do a siesta in the afternoon. I have never in my whole life been able to really fall into a deep sleep during the day (a capacity I always envied people for that were able to do so) just always rested in awake status. This improves obviously quality of the afternoon, as if you got a real nap (even half an hour is enough), the energy is not comparable to only having rested.
Also in evenings when go to bed, I always fall in a deep sleep immediately and only wake up next morning with a bit reduced pins&needles symptoms in hands/feet, that then however increase again during the day.