This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:

fogdweller wrote:Angioplasty is a very safe procedure. New uses for an accepted and safe procedure should not be a big problem.

Couldn't agree more. "But oh there was a death"...which is beyond tragic, if you read back in the history of the forum you can get a sense of what kind of person Holly was...it just seems like the current excess of caution is blowback from that early riskiness and resultant tragedies.

we stopped the space program fafter one accident to assure that the risk was reduced

Cece wrote:you are preaching to the choir ... the risks are being exaggerated in the media, hospital admins are as susceptible to fear and misdirection as anyone else, stents and angioplasty are conflated as if we are all flocking off to get this dangerous procedure...ugh.

On another note, when it comes to trials, isn't skill of the doctor another confounding factor? Even if just one doctor does all the procedures, as DrS is planning to do in his safety study, the results will be better or worse depending on that particular doc's skill. So when you try to reproduce the results, the next doctor may be more or less skilled, and you get different results...as contrasted with a drug trial, where the drug at least stays the same from one trial to the next.

yes cece
that is why the ideal trial is multicenter randomized prospective blinded

]most of the time we just dont get to that level

i have a faculty member who struggles when our compter data is only 90% accurate. This leads him to go around in circles without accomplishing anything whle he tries to attain 100%.

I am more practical. I want 100% I want to get the job done. I will live with less than perfect to more the agenda

pklittle wrote:Angioplasty does have risk. It is possible for the vein to burst. I have heard of this happening during heart artery angioplasty.

Another risk is that the vein in the groin that that catheter goes into could collapse or burst. (Don't know if I'm using the correct terms). My own mother had this happen during a heart cath. She lost massive amounts of blood and had to be hospitalized for a week to recover.

No procedure that is invasive should be taken lightly, or minimized.

veins do rupture but uncommon. because the pressure in the veins is so low, mild compression over the site of tear is effective. Rupturing an artery is more significant because the pressue is about 1000% greater

also the coronary artery is markedly different from the jugular vein.

again arteries are safe but more reisky than veins

bestadmom wrote:NZer1,

I agree that we need as much info as we can collect, but let's hand it to the good Dr. S on a silver platter. He's not getting rich on us, and he's giving us 20+ hours a day of his time. We are very lucky to have him on our side.

geez, at the rate the this thread is growing and the number of questions increases, i may never sleep again

vivavie wrote:I wish all doctors had as much empathy as you Dr S

Question: In Poland they could not get into my azygos. They tried with 3 differents catheter sizes. 90 minutes later, their conclusion: the valve is working properly which means the valve is probably OK.

What do you think of that? Should I pursue having this check again?

I have a stent in the left jugular - malfunctionning valve.
I feel better but I am still tired and in pain 24/7 (legs and feet) but no more stiffness or crocky walking.
Thank you

i wonder whether your azygous had a tight valve that could not be entered.

I might give it another try once you find another liberator

drsclafani wrote:There is valuable information from all tests. Many interventionalists use this information to plan their catheter studies. I find them informative but I make my treatment plan based upon IVUS and cathetervenography

Sorry if I missed it, so everyone feel free to send me back to do my homework. As far as I have seen, you are the only Dr that specifically uses the IVUS. From my quick research (ie the Wiki) I can see how significant a difference it would make with stenosis caused by fatty deposits etc.

Have you found any explicit lesions that you only treated because of the IVUS, that looked perfectly OK by catheter? Most lesions / stenosis discussed in my reading have been physical "deformities" and/or blockages of the veins themselves, and not due to a build-up on the vein wall.

I can certainly see how the IVUS would be invaluable to review a previously placed stent.

PS: who taught you to touch type! you have been prolific.

CureOrBust wrote:

drsclafani wrote:There is valuable information from all tests. Many interventionalists use this information to plan their catheter studies. I find them informative but I make my treatment plan based upon IVUS and cathetervenography

Sorry if I missed it, so everyone feel free to send me back to do my homework. As far as I have seen, you are the only Dr that specifically uses the IVUS. From my quick research (ie the Wiki) I can see how significant a difference it would make with stenosis caused by fatty deposits etc.

Have you found any explicit lesions that you only treated because of the IVUS, that looked perfectly OK by catheter? Most lesions / stenosis discussed in my reading have been physical "deformities" and/or blockages of the veins themselves, and not due to a build-up on the vein wall.

I can certainly see how the IVUS would be invaluable to review a previously placed stent.

PS: who taught you to touch type! you have been prolific.

it is somewhere in the prior 100 pages

ivus simply bounces sound off the wall of the interior of the veins and records the reflections of sound.

its main indication to date is in assessing coronary artery plaque. Those patients have atherosclerosis. . this does not mean that the test is good only for atherosclerosis

My use is not yet described. Getting shut down prevented me from having the number of cases that I felt i needed in order to publish.

Funny, after all the years of competition, i just posted my ideas before publicatoin....

it is extremely useful in
1. detecting particlly duplicated IJV
2. documenting stiff or fused valve leaflets
3. measuring stenosis is most accurate
4. proving that narrowings in the mid and upper jubular veins are physiologic not stenotic
5.

A quick Q Doctor if I may:

Am I correct to assume that the longer the stent is; the more stable it will be in the vein? Is there any constraints to that length?

Thank you for your time (and patience)

Algis

drsclafani wrote:I think that you had very significant stenoses. the Collaterals confirm it.

At last... i got what i wanted from you doctor. You ll never hear from me again haha

Just kidding, just kidding... Let's see what happens from now on. I ll keep you updated.
I really think that those veins will be found responsible for more conditions appart from worsening MS. We are all waiting for you and other inquiring minds to get your methods as near to perfection as possible.

drsclafani wrote:
All procedures require patients to sign INFORMED CONSENT. not just research. that is a different standard than medications, most of which do not require patients to give offical informed consent after FDA approval. Procedures are different. INFORMED CONSENT requires that the patient understand the procedure, is told the incidence and types of complications, and the alternatives to treatment AND the risks and beneifts of those alternatives.

Without more studies that show those risks, NO ONE will be giving an informed consent.

This is something I have long advocated; having prospective patients giving their INFORMED CONSENT as a way to break the legal logjam here in the USA.

As the "early adopters" of a new procedure, CCSVI liberation patients should understand that they are assuming some additional risks. It is a personal decision based on the known facts, and the trust they have in their doctor's abilities. If a patient is not comfortable with the existing art of a procedure, they have the option of waiting until the technique is mature.

Donnchadh

Donnchadh wrote:

drsclafani wrote:
All procedures require patients to sign INFORMED CONSENT. not just research. that is a different standard than medications, most of which do not require patients to give offical informed consent after FDA approval. Procedures are different. INFORMED CONSENT requires that the patient understand the procedure, is told the incidence and types of complications, and the alternatives to treatment AND the risks and beneifts of those alternatives.

Without more studies that show those risks, NO ONE will be giving an informed consent.

This is something I have long advocated; having prospective patients giving their INFORMED CONSENT as a way to break the legal logjam here in the USA.

As the "early adopters" of a new procedure, CCSVI liberation patients should understand that they are assuming some additional risks. It is a personal decision based on the known facts, and the trust they have in their doctor's abilities. If a patient is not comfortable with the existing art of a procedure, they have the option of waiting until the technique is mature.

Donnchadh

i am not sure that i made my point correctly. I am saying that there is no way to have a standard INFORMED CONSENT becasue no one, not any of us, is informed about the risks and benefits of Liberation. Because THERE IS NO DATA. informed consent in a research project can be that we do not know, but standard care is different and requires a good faith effort to share those risks and benefits......thus the need for research

Algis wrote:A quick Q Doctor if I may:

Am I correct to assume that the longer the stent is; the more stable it will be in the vein? Is there any constraints to that length?

Thank you for your time (and patience)

Algis

yes, that is true BUT

the longer the stent the more surface area that can go wrong, restenose etc

the larger the diameter the more stable,
the greater the lateral pressure on the vein the more stable

drsclafani wrote:Funny, after all the years of competition, i just posted my ideas before publication....

....snip....

5.

Ah-ha! but I note you "accidentally" left number 5 blank. Like the ending of a B-grade horror movie.

drsclafani wrote:

JOJOB wrote:Hello Dr Sclafani,

I have myself a question to ask you.

I had a doppler in Paris with DR...., He did not find anything specially wrong with my jugulars except for the valve not working properly in my left jug. He told me to sleep in the inclined position. He also told me to come back to him in the next few months to have my azygous veins checked as he thought that a problem could be there.

I am not sure what Dr ..... is planning to do in a few months that he could not do now

In the meantime I have contacted an interventionist radiologist who believes in CCSVI and he programmed an MRV without any dye for the week after next. Is there any particular thing I should ask when they do it ? I have an appointment later with the dr, but it seems unlikely to me that the problem will be detected if it is lower down the azygous veins. If my understanding is correct, the only real method of finding anything is to have a catheter venogram. I would really appreciate if you could give me any guidance.
Thank you in advance.

There is valuable information from all tests. Many interventionalists use this information to plan their catheter studies. I find them informative but I make my treatment plan based upon IVUS and cathetervenography

In general MRv is not yet good enough to see the azygous abnormalities. Therefore catheter venography is necessary.

I do not understand why one would perform an MRv without contrast media.

For info: MS diagnosed 2005, 15 lesions on the brain plus one particularly annoying lesion at the top of the spinal cord that has been the subject of the last 4 relapses.

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Thank you very much Dr. S for your answer. I think that if the Drs suggested waiting, it might be because they are still in the process of sorting out their protocols and getting things going. It seems to me that it is still very early days and that most of the doctors involved are following their own logic ! My only option is to continue pushing onwards with this for now until I get somewhere.
I really appreciate you spending your valuable time to have replied. Thank you !

drbart wrote:

drsclafani wrote:how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow,oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery.

do you see a pattern that would lead you to expectations about abrupt improvements? the easy things to imagine would be type of MS, length of disease, etc.

i'm wondering though about the importance of "little veins", ones that MR can't images at 1.2mm and you can't get at with a catheter.

is there enough of a pattern of brain/spinal lesions that would lead you to expect things more specific than spinal -> azygos?

the correlation between CCSVI and MS seems so high, that it might be the people who don't see dramatic changes are the most interesting cases. they may have just as serious an issue with blockage, but at a finer grain.

Hi Dr. S
First I just have to say (and I know you have heard it before!) thank you, thank you, merci beaucoup for being such a dedicated doctor and generous human being !
So, referring to the previous post, I am sadly one liberated patient with no improvements what so ever (end of March). I did get a stent in the right IJV, but as they don't overstent, I was left with a left IJV at about 60% capacity. Do you think that could be related ? I am going back to Poland for a check-up end of June and I wonder if anything more can be done (they said azygous was fine, they must have looked at the vertebral veins as well, right ?).
I know it's tough to say something, but any ideas would be appreciated !! I sooo want to feel positive changes as well (yep! Duh )
Also, if there is anyone like me, contact me so we can do some constructive brainstorming maybe !!!
Thank you very much !!!
Michelle