This Is MS Multiple Sclerosis Community: Knowledge & Support

to my knowledge, there have been no deaths from the liberation procedure yet

nothing yet, but no one is really trying to stop me either.

Hi Doc,

I would like nothing more than to be treated by you, but I will likely be treated by Simka, et al (in May) before you get your IRB approval. What about after care? I have cousins in Connecticut who are always admonishing me to visit. It's but a short train ride up to NYC. At worse, I could buy you lunch...

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My name is not really Johnson. MSed up since 1993

Once the IRB approves the investigation, it can be performed. The federal level is related to compensatoin

i do not think so, it is a hospital issue
momentum is growing

patience dear patients

just making sure everybody sees that.

Related to MMCC and Nunzio, fully agree on the Tysabri issue. The new EMEA 2010 protocol reports that after 2-3 years Tysabri infusions the risk could increase/is still fully unknown... unfortunately people taking Tysabri have little alternatives...either stop and risk or go on and risk...:_(
And isn't it just logical going for chance with limited risk, if one has 4-5 (!) symptoms of the following list?!? Certainly chance for improving the quality of life! Besides potential preventative effect...a few years monitoring MRIs should show...

CCSVI: & M.S --- Kuwait initial Results
All successful Angioplasty with satisfactory post balloon dilatation
No complications
All patients reported improvement ( 1 month) :
Improvement or disappearance of Numbness
Loss of Fatigue and increased energy
Improvement of power (foot drop)
Improvement visual acuity (No blurred vision)
Reduced electrical sensation
Memory improvement

Strong link between MS and CCSVI:
81-96% (with Duplex and MRV) versus 7% controls
Other studies: Zamboni 100% , Zivadinov 55% -62%, Mamoon 84%, Simka 90%

Hi Dr, thanks for letting us know how your progressing. It's good to hear that things are happening, from where I sit there are times when things seem to be at a stand still.
I watched this Youtube video from a guy who is trying to get treated after being tested and showing blockages. He has been told his blockages are not a problem, don't need treatment and it set me spinning and I would very much appreciate your point of view. http://www.youtube.com/watch?v=iTv0ryxuiTA.
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The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient?
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This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.

Hi dr Sclafani. I am reposting my question. I suppose you have overlooked it.

Your work is highly appreciated. In the Netherlands your thread is spelled by several key users of our forums and duplicated on ours. So, please keep up the good work. People like you give us hope that openings for CCSVI will be found in the (near) future.

Anyway, I want to ask you if you can say something in general or in particular about the findings of my 'narrowing'.

The MRI pictures showed that I have narrowing in or very nearby the foramen (that is opening in the base of the skull where the IJ pass through; the explanation is not for you dr. Sclafani ).
The dr. who has examined the pictures said that it is unlikely that the foramen left is different from the right one (which IJ did not show any narrowing). So, the foramen is not pinching the IJ there, the narrowing is 'coincidental' in or nearby the foramen, is his belief. The MRi-scan did not show any bones.

I was wondering if this can be extra challenging because the length of the balloon for dilatation (the ones I have seen) are quite longer the actual narrowing actually is. So the balloon in this case will probably enter the brain (I presume I still have some). Or can this be avoided or can the balloon exactly positioned so that this will cause no harm, or ..?

What is your opinion or experience with this one?

MMCC wrote:

Quote:

. The risk of PML so far is estimated at 1 in 1,000, with not all cases fatal. The risk of death from angioplasty (in arteries - don't know for veins) is higher than that.

You cannot compare the risk of arterial angioplasty to vein angioplasty.
1) In arterial angio the patient is much sicker; he or she just had a heart attach or a stroke or is very close to get one.
2) Arterial blood carries to the brain and any dislodged plaques can end up in the brain with very deleterious consequences specially from carotid angio.

Is this another way of saying that in someone with CCSVI, the jugular veins don't open as much when lying down, compared to a normal person? If so, is this really a good criteria? In a person, couldn't the veins be open when supine and just not collapse when standing (or widen a little), still resulting in a negative delta?

Dr,
Because i'm from Canada, I am concerned about the follow up after the surgery. If someone needs medication after the treatment, what happens with the prescription? Do we need to have the prescription from a doctor in Canada or we can have it from the doctor in Poland or Bulgaria ...? Do you know if the patient comes back home with medication for a couple of months or if he will need to find a doctor to get the medication after?

Dr Sclafani,

Maybe this would work for the patient tracking/registery?



(link hubbardfoundation.org)

I know the results of yours and other doctor's trials and published results are what will win medical minds, so I don't know how useful the registery would be to the research. It does help patients to evaluate treatments, I have my profile there (link) and I put stents as an MS treatment.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

Kirtap,

As far as I know, in Canada you need to have a Rx from a doc in your province.

Hale

Dr Sclafani,

Thank you for giving me HOPE. I have SPMS and have been told by my doctor there is nothing that can be done, there is no effective therapy, and that the CCSVI theory is all wet. Now I am so thankful to be on your list, which I am sure is a mile long now.

Thank you for all you are doing!

Pam