CCSVI treatment available in the U.S.!

[Vivianne766]

I can't wait to get a call from Dr. Siskin. I am sooo excited but keep thinking when are they going to call? Do they remember me ? Do they have my phone # ? Did they call while I was`in the bathroom ? Do they call on the weekends too ? Can I call the phone company AGAIN and check all the calls made to-from my phone line ? Oh wait..... Is my phone working ?
....Goi'n crazy here.

[Cece]

Do they call on the weekends too ?

Not sure where you are in the process but when I got the call back from Dr. Siskin, it was on a Saturday morning.

[Vivianne766]

OMG !
That is good so people might get calls. Someone had a call today !!!!!
Yay !!!!!!!!!
I am sooooo ready to be liberated.
tnx cece.
oh and I am waithing for my 2nd call.
.... still waiting. lol.

[pklittle]

Vivianne - got my Dr call on a Sunday morning. Good luck to you!

[SandyK]

I received my call from Dr. Siskin on June 2. I'm patiently waiting to get my call to set up the actual appointment. Who am I kidding...I'm not patiently waiting...I'm desperately waiting!

[Trish317]

OMG !
That is good so people might get calls. Someone had a call today !!!!!
Yay !!!!!!!!!
I am sooooo ready to be liberated.
tnx cece.
oh and I am waithing for my 2nd call.
.... still waiting. lol.

When did you first call, Vivianne?

[SofiaK]

I know that Dr. Siskin has entered from the right of the body to do the liberation procedure in the past. I understand Dr. Sclafani is entering the body on the left now.

Does anybody know if Dr. Siskin goes from the left now too???

Thanks,
Sofia K.

[Cece]

Yes. When bmk had his treatment (two weeks ago?) Dr. Siskin did from the right, but as of one week ago, Dr. Siskin is now a left-side guy.

[Athena]

Yes. When bmk had his treatment (two weeks ago?) Dr. Siskin did from the right, but as of one week ago, Dr. Siskin is now a left-side guy.

Can someone please explain the rational starting from the left groin vs the right? Thank you.

Athena

[Vivianne766]

OMG !
That is good so people might get calls. Someone had a call today !!!!!
Yay !!!!!!!!!
I am sooooo ready to be liberated.
tnx cece.
oh and I am waithing for my 2nd call.
.... still waiting. lol.

When did you first call, Vivianne?

On June 3rd.

[Vivianne766]

Yes. When bmk had his treatment (two weeks ago?) Dr. Siskin did from the right, but as of one week ago, Dr. Siskin is now a left-side guy.

Can someone please explain the rational starting from the left groin vs the right? Thank you.

Athena

Yes please. I want to know as well.

[Trish317]

Yes. When bmk had his treatment (two weeks ago?) Dr. Siskin did from the right, but as of one week ago, Dr. Siskin is now a left-side guy.

Can someone please explain the rational starting from the left groin vs the right? Thank you.

Athena

Here is Dr. Sclafani's explanation....

i will discuss this more later when i give my zamboni report, but not all ccsvi is picked up via azygous and jugular venography. I was caught by surprise on that one! but you will have to wait for an explanation of some of the negative venograms!

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 mechanism is that 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.

Not to say that all the venograms I have seen done around the worlds would be something leonardo would have been proud of.

[newlywed4ever]

For those of you awaiting Dr Siskin's call, I know what you're feeling. I had missed one of his calls and then was going to be on vacation for a week. Believe me, I was so worried that he'd call while I was away. I called the clinic and was assured that even if I missed his call, I would not lose my place in line. It took another 2 weeks before I got his call but now both myself and my daughter have appts Aug 5th - hurray! My initial call to them was May 17, doc finally got hold of me June 10. Don't despair, folks. The doc told me they schedule one month at a time and I'm assuming that when I got the call June 10, he was working on the month of August.

[ppicklee]

I was expecting a call on June 14. That was my two week point. I am a quad so I cannot get the phone whenever I want. I'm glad to hear that he is calling back and we remain in line. Newlywed if it is not to brash of me can I please ask when you first called ? ? I can totally relate to the people that are RRMS. I was there I never thought that I would be here. I/we (my wonderful husband) have learned a lot in our journey.

[Cece]

I actually missed Dr. Siskin's first call, which came on a Friday night. He called back the next morning.