DrSclafani answers some questions

[hope410]

I wonder if the new understanding that M-T syndrome may be occurring and significant lower veins may also be blocked might also shed some light on why some people seem to worsen following vascular treatment.

If only upper veins are unblocked, the increased flow throughout the entire closed circuit venous system created by the better blood flow is going to encounter these blockages lower down.

I wonder if it would cause even greater reflux in these persisting lower blockages (or whatever mechanism is discovered to create the eventual demyelination) and thus cause a worsening for some people in their health neurologically. I visualize a dam in a river that is unblocked, and the pent up water is unleashed and goes crashing downstream. But if it then encounters another blockage, it's going to be hitting up against it at full force, greater than even before, since the earlier blockages had resulted in only a trickling stream of water getting the whole way through when there were multiple blockages. Now, the water flows at much greater rate and force, hitting on the lower dam. That's going to create some problems, I would imagine.

Just a simple thought that might be completely off base....

[adamt]

Dear Dr Sclafani,


Now this is worrying me as i am due to have the plebography on Friday and treatment if necessary. But i dont want to go through all of this to have No changes.

Thank you

Adam

It is such an easy procedure. Do you feel an easy procedure is worth a 50/50 chance of feeling improvement? I don't know what the true percentages are with how many experience improvements vs. not. I just know the procedure was so easy and I love the improvements I have received!!!!

Hi girlgeek33,

i do appreciate a 50:50- chance of improving is better thana 0% chance, but it just worries e that with everyone else. virtually all MS'ers have symptom improvement!


I was hoping there was some form of balloon angio Protocol i could show her?

thanks

[shye]

Adamt-

Dr Sclafani wrote

When I read zamboni's paper, I noted that he stated that roberto galleoti, the IR who works in ferrara, enters the left femoral vein and advances up into the azygous and the jugulars. I thought that peculiar because it is such a straighter shot up the right femoral into the jugulars and azygous. In my entire career I have entered the right side in more than 98% of procedures. (For your information catheter manipulation is always more accurate in a straight line. when the catheter has to curve, it loses some of the fine tuning.)

The paper never really explained why robbie did that. So as i watched that first procedure in ferrara, i noted that they did a venogram of the left iliac vein and then catheterized the left ascending lumbar vein and did another venogram. I aske paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

Paolo, why didnt you say so in your paper, I asked. Because the editors cut it out for space reasons!

So now i will do all my catheterization from the left femoral approach, even though I dont like to.

How can evaluating the lumbar veins be helpful? it is helpful in explaining the disease. at the current time, there is no solution to the lumbar vein narrowings (hypoplasia). But it can explain the disease. It appears that lumbar hypoplasia is associated with PPMS.

The mechanismS by which these veins affect the spine as as follows

narrowing of the renal vein and the iliac vein reduce the ways for the blood to exit the spine. in fact they may actually increase that flow. And perhaps that leads to ccsvi of the spine.

So i think that some of those who have had venograms that appear normal just havent had all the right imaging done.
http://www.thisisms.com/ftopic-10680-da ... -1890.html

I think that this entering from the left might be the key you want.
All best wishes tomorrow!

[L]

Dear Dr Sclafani,


Now this is worrying me as i am due to have the plebography on Friday and treatment if necessary. But i dont want to go through all of this to have No changes.

Thank you

Adam

It is such an easy procedure. Do you feel an easy procedure is worth a 50/50 chance of feeling improvement? I don't know what the true percentages are with how many experience improvements vs. not. I just know the procedure was so easy and I love the improvements I have received!!!!

Hi girlgeek33,

i do appreciate a 50:50- chance of improving is better thana 0% chance, but it just worries e that with everyone else. virtually all MS'ers have symptom improvement!


I was hoping there was some form of balloon angio Protocol i could show her?

thanks

Perhaps she is only looking for stenosis and not also for problems with valves?

[bestadmom]

Adamt,

Ask your doctor to reach out to Dr. Sclafani. He is always willing to share what he's learned. PM me if you don't have his contact info.

[adamt]

Perhaps she is only looking for stenosis and not also for problems with valves?

the doctor said she will test Every vein in my body for stenosis with the dye.

she expressed she will be checking the sacral venous plexus and other 'plexus' veins, as she said some MS patients dont have these veins

is looking/checking the plexus veins the same as checking the valves?

thanks

[adamt]

Adamt,

Ask your doctor to reach out to Dr. Sclafani. He is always willing to share what he's learned. PM me if you don't have his contact info.

i would, but the operation is early tomorrow morning so its too late now unfortunately. - its 8pm here now

[burg]

Dr S;
I'm so sorry about the IRB. I'm a big fan of yours. Also a Brooklyn boy!! I filled out the application with Holly a few months ago.

First of all; I'm in for $1,000.

Next..I passed a "Ambulatory Surgery Center" on the corner of Utica Ave and Avenue K in Brooklyn, parked, and went in. Only 10 minutes from your hospital. I was told that doctors can affiliate with them, and use their center. I'm not sure if they have a fluoroscope, but they've got everything else. The name is "Brook Plaza".

Another site from NYS Board of Health has a list of licensed ambulatory surgery centers in Brooklyn, including some vascular doctors, maybe you know some of them.

http://www.health.state.ny.us/professio ... /kings.htm

This way we don't have to start from "scratch". If you would like me to do any legwork...(with my cane), I'd be glad to do it for the team!!

I'm only a regular guy with MS like everyone else here, grasping at straws, but. I believe;

What we need to do is, if we have an accountant, or attorney among us is to start a "not for profit", charitable organization. Then, everything goes there. You Dr S. or your designee should be the trustee. Maybe someone we all trust, such as "wheelchair kamikaze".

I even came up with a name..."The Liberation Foundation". LOL...

Anyway Doc... you have no idea how many people follow everything you wrote, but were quiet. There are many of us out there, and we are with you..Whenever you, dear Doctor, are ready...

[Cece]

I will go edit Holly's email off that post, I have not heard back from her and thinking it through, I agree about not jumping the gun and waiting for Dr. Sclafani's lead on where he wants to go from here.

is looking/checking the plexus veins the same as checking the valves?

No. But I'm not sure where the plexus veins are. Are you asking all of us or just DrS?

Checking the valves means to check in the azygous and jugular veins for valves that are backwards, thick, solid, or malformed in whatever way that is causing reflux.

I think maybe your doctor is being reasonable and trying to temper expectations? Or maybe inexperienced or maybe she's had more PPMSers than RRMSers?

[siduri]

I’m with you burg. Dr. Sclafani, I haven’t felt like I had anything to contribute to this discussion – except my heartfelt thanks and support – but I’ve been waiting for you to decide how you’ll proceed and watching for when and where I can contribute. In all my years of dealing with this disease I’ve never felt such hope and have never felt like someone was passionately looking for a way to help me. What you’ve already given me, knowledge and hope that there could be a chance . . . is immeasurable and you have my heartfelt gratitude and loyalty. I would be honored to contribute. Sue

[drsclafani]

I’m with you burg. Dr. Sclafani, I haven’t felt like I had anything to contribute to this discussion – except my heartfelt thanks and support – but I’ve been waiting for you to decide how you’ll proceed and watching for when and where I can contribute. In all my years of dealing with this disease I’ve never felt such hope and have never felt like someone was passionately looking for a way to help me. What you’ve already given me, knowledge and hope that there could be a chance . . . is immeasurable and you have my heartfelt gratitude and loyalty. I would be honored to contribute. Sue

firstly
i havent had much time to contribute, plus i am admittedly in pain over this.

your good doctor has done an amazing job of keeping his feelings in check when dealing with patients for his entire career. never a tear or fear

but you have opened my closed heart. I am convinced that I was wrong all those years, i thought that in order to be a good doctor you had to keep an open mind and a closed heart. Now i see how much easier it is to be a good doctor when you open your heart ..even with the occasional tear

that is most important thing you have taught me.

now on to some practical issues

1. I want no one to commit any money during this shocking and upsetting time/. now is the time to open your mind, ok open your hearts, but lets keep your pocket books and check books closed fior the moment. I appreciate the offers but lets make sure that vulnerable people are not hurt in the process.

on the other hand if there is a daddy warbucks out there.....


2. The reason to look for a May thurner syndrome is not because anyone thinks there is an association. Zamboni only found about 3 patients in more than 100 patients.
The reason to look is that WHEN it is present, blood is shunted through the ascending lumbar vein through the perivertebral plexus and into the azygous. Obviously if there is azygous or lumbar vein problems, it is possible that it might affect the collateral flow of the CSV system.

3. Thanks for the leads on centers. just remember that if i arrange something, i will not announce it. i will become another backalley liberator. thus the attempts to find a better open solution.

so my friends, the old sal would have gotten back on his feet a lot quicker, but empathy has its costs

[fogdweller]

3. Thanks for the leads on centers. just remember that if i arrange something, i will not announce it. i will become another backalley liberator.

This may be a bit brash and out of line, but I think that would be a mistake. The only way to make this acceptable to the mainstream, which if it is accurate it eventually must become, is to boldly continue, openly and tansparently. This requires courage and patience, but if CCSVI goes underground and does not fully disclose everyting to the scientific community, it will be written off as another kook theory peddled to a vulnerable population and this will give it a stain that will set it back years.

[shye]

adamt-

SENT YOU TWO, NOT ONE, EMAILS LATE THIS AFTERNOON--YOU ONLY PICKED UP ONE--
PLEASE LOOK AT THE FIRST ONE--IMPORTANT INFO!!!

[Cece]

2. The reason to look for a May thurner syndrome is not because anyone thinks there is an association. Zamboni only found about 3 patients in more than 100 patients.

MT is estimated to have a prevalence of 2-3% in the normal population, so thanks for giving us Zamboni's numbers, it sounds like they're the same.

I think empathy may make doing a randomized trial more difficult, if that is the direction your irb wants you to go?

[Lyon]

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