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mmcc wrote:

Nunzio wrote:If I had to choose, as risk of the procedure, between incision site infection and progressive multifocal leukoencephalopathy, I think I would take the former anytime.
The problem with the informed consents is that they are written by the malpractice insurance lawyers and include any possible complication under the sky; They become so long and convoluted that the patients ends up signing them quickly trusting that the reason their surgeon proposed the procedure is because the benefit outweigh the risk in their situation.
Also there is always a risk in not doing anything.
If I am ambulatory now and I become wheelchair bound waiting for the procedure I think this would be unacceptlable for anybody.

I am a person willing to take a high level of risk to avoid further disability, but comparing PML to an insicion infection is hardly realistic. 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.

It is important to realize that neither Tysabri nor Liberation surgery, or any other medical treatment, including aspirin is risk free. The risks from libertation surgery cannot possibly be completely known at this point. I would remind you that a year into Tysabri as a monotherapy there were NO cases of PML. Liberation surgery has not been around long enough to know what the long term risks might be.

That said, I am waiting for my date to have it (and I took Tysabri, too).

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

mshusband wrote:re: Dr. Bonn being shut down ...

Is it possibly because all these people screamed his name from the rooftop over the internet? I've seen his name on SEVERAL websites including this one and Facebook. If people haven't caught on that there are those against CCSVI out there who would call up a hospital and stop doctors from doing this ... you're naive. I think we've seen that at this point re: Dr. Dake, Dr. Sclafani, Dr. Bonn ...

We need to pass these names along through back-channels ... secretly. To help each other ...

A doctor who isn't doing the CCSVI procedure is just as good as a doctor who is against the CCSVI procedure. They're only as good for the patients when they're working.

We're trying to warn you guys ... maybe the next doctor found will be kept quiet and we'll go from there ...

I'm very sad again tonight through all the ups and downs of this ... this is another down.

Dr. Sclafani ... give us some good news and tell us you'll be back to plumbing soon???

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...

newlywed4ever wrote:Am up way past my bedtime but trying to educate myself re: IRBs. If I understand correctly, once the hospital IRB has approved research/procedure, then it is submitted to US Dept of Health & Human Services? If so, can you share with us whether Kings Co. is at least that far in the process? And once it's at the federal level, is that also lengthy in regards to time?

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

newlywed4ever wrote:And...do you have any thoughts as to whether it would be a good idea to "swamp" US DHHS with letters in support of CCSVI/angioplasty trials?

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

patience dear patients

drsclafani wrote:

JOhnnybaby248 wrote:It just keeps getting better and better more results out of Kuwait
http://www.ccsvikuwait.com/Details.aspx?d=4

Dr. S. any words of in encouragement

my only comment is......

when do we abandon ultrasound and MRV?

the incidence of abnormality in MS is so high, that it has become irrelevant to have a noninvasive tesst to screen. unnecessary cost and inappropriate to deny the gold standard to anyone.

I fear it is just a method to delay treatment.

only reason to do noninvasives is to get enough experience to use it for followup screening

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...:_(

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

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.
***************************
The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient?
***************************
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:

. 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.

drsclafani wrote:

seanthecaper wrote:I was tested for CCSVI by Angela Hume at the Barrie Clinic under the direction of Dr. Sandy MacDonald on April 15.

The test took about 20 minutes and followed Zamboni protocol to a tee.

The results were:

Right:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was eveident with reflux in the internal jugular vein at 0 and 90 degrees. B mode abnormality noted.

Left:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees. The cross sectional area of the internal jugular vein is larger than the cross sectional area at 0 degrees resulting in a negative delta (positive result). B mode abnormality noted.

I submitted these to this thread since I am on Dr. Sclafini's waiting list and was hoping he could comment on the results. This negative delta is what i need some meaning on, since i don't understand it. I tried calling Angela who did the testing but she is extremely busy currently.

Any help here would be appreciated,

Sean McNeil

Specifically,

...The Delta if formed by subtracting the diameter of the vein while sitting from the diameter of the vein while supine.

in a normal person, the diameter of the vein sitting is smaller than when lying down, thus sutracting the smaller number from the larger number gives a positive numer. Which is a normal result.

in someone with CCSVI the sitting vein is larger and thus subtracting the larger number from the smaller number give you a negative number. This is an abnormal result.....

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?

4) We also request that you join www.PatientsLikeMe.com so that we can all share each others' clinical outcomes and provide much needed research results. Although this does not take the place of Big Pharma or Big Government multi-million dollar studies, we think it will be a great start. The PatientsLikeMe site is used by research organizations to collect data on large numbers of patients. The MS section alone has 18,000 members. It is easy to post your history, symptoms, and treatments and it shows your progress in graphs. Under "CareGivers" please invite "HubbardFound Database" so that we can communicate with you and keep track of your success.

(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.

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