This Is MS Multiple Sclerosis Knowledge & Support Community

HappyPoet wrote:I called... same story. They're still waiting for IRB approval, "taking it week by week." It's now been four months of waiting since this thread was started.

After getting on Dr. Mehta's patient list, like some of you, I was able to find a way to have non-invasive CCSVI testing performed. Well, I found out that I do, indeed, have CCSVI, but I also found out that I am not a candidate for treatment because the MRv of my brain shows that some of my dural sinuses (similar to built-in pipes rather than flexible veins) are malformed/missing.

So, back in February, I removed myself from Dr. Mehta's patient list, BUT that doesn't mean I don't share your frustration with all this waiting -- you have my hopes and prayers that your phones will soon start to ring with good news.

Best of luck to everyone!
~Pam

HappyPoet do not remove yourself from the list.
I had the same poblem. MRV will not show any problem with valve leaflet or azygous problems.
You do need a catheter venography and a doppler to rule that out.
In my case I also had a malfunctioning valve for which I am seeking treatment.
Good luck
Nunzio

Nunzio wrote:HappyPoet do not remove yourself from the list.
I had the same poblem. MRV will not show any problem with valve leaflet or azygous problems.
You do need a catheter venography and a doppler to rule that out.
In my case I also had a malfunctioning valve for which I am seeking treatment.

I have to agree with Nunzio...if you are worried about mucking up Dr. Mehta's study with an unusual form of CCSVI, then why not get on Dr. Siskin's list? He is still taking names and it's treatment only, not a study.

My main source of information is Dr. Scalfani's thread. In his post on the 13 types of malformations he has seen, he stated that in most patients they were mixed. Like Nunzio said, you could very well have a bad valve in addition to what you already described!

Cece wrote:My main source of information is Dr. Scalfani's thread. In his post on the 13 types of malformations he has seen, he stated that in most patients they were mixed.

and those are just the ones he's seen! who knows what smaller malformations might be lurking in successful/unsuccessful liberations to skew the findings?

Hi belsadie, Nunzio and Cece,

Your words are very uplifting and encouraging.

Because CCSVI is *expressly* defined by Zamboni as involving only extracranial venous problems, I have two separate conditions, but I only know the name of one -- CCSVI. Perhaps a possible name for my intracranial venous malformations and my CCSVI could be I-CCSVI.

I'm following the research and comments of Dr. Franz Schelling (imo, his papers, especially "The Ways to Lesion Understanding," should be required reading for doctors performing Liberation testing and treatment). A part of Dr. Schelling's theory says that venous flow problems that originate in the brain (and in the jugulars) can, by way of the vertebral veins, back up all the way down into the spinal cord and cause MS lesions (where I have a large one).

belsadie, I am very close to the point where my peace of mind will become more important than anything else. Yet, there is a part of me that will always have faith in many things, and your post, for which I thank you very much, reaffirms and strengthens that faith -- maybe I can handle another ride on this roller-coaster, after all.

Nunzio, thank you very much for sharing your thoughts. I hope a solution will be found to your malfunctioning valve -- this is an area I think will receive lots of attention in coming years because it seems many MSers tested have one or more valve problems. I think we're all special cases in our own way. For those patients that do not achieve success with their Liberations, maybe an MRv of their brain will help explain why not.

Coincidentally, I asked an IR just this week if I should bother having my azygous vein studied -- the answer was yes and came with a question, but my answer to the IR's question was ignored, which I guess tells me a lot about my situation <sigh>.

Cece, I can't believe how many threads I miss!! I don't know whether to laugh or to cry. Thank you very much for telling me about Dr. Siskin. As far as "mucking up" a study goes, I definitely would which is why peer reviewers would throw out a case like mine -- outliers be gone! Since Dr. Siskin isn't doing a study, though, I'll call his office today to find out if I'm not too late and if my case is not too complicated.

It's people like you three, belsadie, Nunzio and Cece, who make TIMS a very special place.

With my warmest thanks,
~Pam

EDIT: And now...... back to Dr. Mehta's thread.

Good news for me!

It's a happy day, after all.

Regarding Dr. Mehta's list -- After my husband's insistence earlier today that I was still on Dr. Mehta's list, I called and spoke to a gentleman filling in for Megan. He was kind enough to look for my name, and there it was! On the list!!

My husband tried filling in all the blanks in my memory, but I think those particular memories have disappeared forever. He tells me that I did, indeed, call Dr. Mehta's office to remove myself from the list, but that the woman I had been speaking to checked with Dr. Mehta while I waited on the phone -- she came back to say that Dr. Mehta is interested in my case, wants my data, and wants me to stay on the list. And I have no memory of any of it <sigh>, <tears>.

I couldn't figure out why in the world he would want my data, especially when it might be thrown out by the peer reviewers. But I found out from a friend that he might be interested in writing up a single case study of just me -- I've read such case studies before ("We report a case of a woman who .........") so maybe there's some truth to it. I can't wait to ask him myself, especially because he works in my city which would be so convenient for me.

Thank you again, belsadie, Nunzio and Cece -- you guys are the best! I hope that if any of you ever need help, that I'll be the one who can come to your rescue (thinking of Nunzio's spinning Superman avatar).

Before I forget again... the IR I mentioned in my previous post is on a radiology forum called AuntMinnie.com A long time ago, I posted on the general radiology forum asking if any of the IRs or residents ever heard of CCSVI -- only one member said he had but that his neurologist friend said there was nothing to it. A more open-minded IR and I had talked by PM several times back when I first posted about CCSVI.

Well, on Tuesday, this IR opened my last PM of our recent conversation, but he never responded back. I think something happened to his open-mindedness or maybe he took a bit of offense at my comment that CCSVI is still not discussed at AuntMinnie's -- if anyone searches at AuntMinnie's for CCSVI, the only posts that come up are my old ones.

I do NOT want anyone thinking I was talking about our great doctor here at TIMS, Dr. Sclafani.

Wishing everyone a happy holiday weekend (here in the U.S.)
~Pam

HappyPoet wrote:I hope that if any of you ever need help, that I'll be the one who can come to your rescue (thinking of Nunzio's spinning Superman avatar).

I think this is why they invented the concept "pass it forward"...I seem to remember writing a number of effusively thankful pm's to bestadmom, when I managed to get an appointment scheduled with Dr. Sclafani...

.
With my sincere apology, I forgot to say the most important reason why Dr. Mehta wants me to stay on his patient list: He wants to help me.

Cece wrote:

HappyPoet wrote: I hope that if any of you ever need help, that I'll be the one who can come to your rescue (thinking of Nunzio's spinning Superman avatar).

I think this is why they invented the concept "pass it forward"...I seem to remember writing a number of effusively thankful pm's to bestadmom, when I managed to get an appointment scheduled with Dr. Sclafani...

I think this is why they invented the username "Cece"...I seem to remember how sweet, compassionate, and helpful she always is...
.

Hi -
My Mom has had MS for 40 years and we are trying to get her tested for CCSVI. Is Dr. Mehta still taking patients for his trial? And who is Dr. Siskin? Does anyone know how to get around Medicaid? They obviously arent paying for it, but we want to get her treated without her loosing her benefits.
Would appreciate any info, thank you!!

AWOODW wrote:Hi -
My Mom has had MS for 40 years and we are trying to get her tested for CCSVI. Is Dr. Mehta still taking patients for his trial? And who is Dr. Siskin? Does anyone know how to get around Medicaid? They obviously arent paying for it, but we want to get her treated without her loosing her benefits.
Would appreciate any info, thank you!!

Here is a web site to get Dr. Siskin's info. He is doing the procedure, call the number listed on the site. They are booked out til later this year.

http://www.communitycare.com/Practices/ ... /CCSVI.asp

This IRB is taking way too long. Who regulates them? I went to their web site for Albany IRB. Found names and phone numbers. I don't know why we can't call and ask for the status. If these people are being paid by OUR TAX MONEY to hold us up w/ blocked veins and feed the pharma, then... that's just F$%*ing wrong. IRB's status and observation must be out there for public to watch over. u know !

Hey there kids, sorry for the long absence. I see the frustration out there regarding Dr Mehta's study. Michael and I met with him a few weeks ago. Michael's jugular is still open !! He is doing much better than pre-procedure, fatigue and brain fog are certainly not as severe. He is still chasing the kids around and enjoying them. He isn't running marathons, mind you, but he has recently joined the gym. For Michael, this is huge... Dr Mehta is just as frustrated by the long wait. He is intent on getting this going and is even trying to attract some media attention. He told me that he went to the meeting in NYC and actually met with Dr. Zamboni...
Do not give up, those who are waiting for him. All of this medical licensure is a pain in the butt to be sure...he is chomping at the bit to get this all going. Good things are coming.....just hold tight!
And Poet, I think you are one amazing human being.....

Kacey,

Thank you for the update. I'm very glad Michael is doing so well. Some good media attention in the USA is sorely needed. You know we are all glued to the tube looking for good CCSVI news. Another good doctor is helping us to understand CCSVI. I hope he gets approvals soon !

ozarkcanoer

Hi Kacey!

Happy, happy, joy, joy!!

I am soooooo thrilled for Michael and you and the children. I'm sure your heart fills with happiness and joy every time you watch Michael play with the children and enjoy his life, especially his life with you.

I hope Dr. Mehta knows you're the one who is responsible for filling his patient list with 900 names (yes, 900!) It's hard to believe that five months have passed since this thread was started. I call Dr. Mehta's office so often that Debbie Hill immediately recognizes my name (and she probably recognizes the sound of my voice, too!)

All my best,
~HappyPoet

Kacey,

So glad to hear things are going well...

When Mehta gets going, Albany Medical Center is going to be the new "MECA" for CCSVI treatment... Between Siskin's group and Mehta who knows how many procedures they can do daily??? lots.. They may have to open uo an "afternoon" shift to meet the demand..

I was just there on Tues. June 22 (Dr. Mandato - Community Care Physicians)- great facility...


-John

Kacey,
I am thrilled for you and Michael. You are very lucky to have each other!