This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.facebook.com/note.php?note_i ... 940&ref=mf

Dr Hewett's presentation:
http://www.facebook.com/note.php?note_i ... 2832983940



Anyone have all their hair fall out after CCSVI treatment???


This next part fits with what DrCumming has said about having patients who come back in routinely every 3 - 6 months to have their (nonCCSVI, other disease-related) veins redilated.

Cece, I'm confused by the statement "With over 500 patients now treated at his clinic, Dr. Arata feels there are a few exceptions to the MS - CCSVI connection." Did he elaborate on what he meant about there being "a few exceptions?" Or did he actually say there are "few exceptions" and was misquoted?

I didn't even see that. I read it as "few" not "a few", I think you're right that that's wrong. Here's the next line:


These are notes put together or summed up by "Sandra (with some help from Shannon!)" I am not even sure where they were giving these presentations? I just love hearing from the doctors.

Thanks to Sandra and Shannon from the CCSVI at UBC MS Clinic - Information and Support facebook page for these notes!!

Does anyone know where I could find Dr. Arata's and Hewett's conflict disclosure information? I've searched their website and ProPublica but can't seem to find it.

Cece,

The doctors' presentations were given on January 29, 2011, in Seattle.

Edit: The following was somehow dropped when I submitted the post

I found Dr. Arata's thoughts on "Primary CCSVI" and "Secondary CCSVI" very interesting. Regarding Secondary CCSVI, he said:
I didn't know reconstruction had been tried for CCSVI reasons. Cece, have you heard of any such procedures?


His thoughts on "Secondary CCSVI in the Azygos" have me wanting to investigate this condition in myself:
Venous compression problems are popping up all over the body: May-Thurner syndrome, Thoracic Outlet Syndrome, and now Secondary CCSVI of the Azygos.

Thanks, Cece

Thanks for posting this Cece. Thanks also to Sandra and Shannon for the notes.

This is the first I have seen any physician speak publicly about a "secondary type of CCSVI" which involves hypoplasia or aplasia of the sinus in the brain. This is my situation. MY MRV revealed either a congential hypoplasia of my right transerse and sigmoid sinus (or a possible earlier thrombosis).

Dr. Arata suggests a hypoplasia may require venous stenting of hypoplastic segments in the brain. This is what makes me very hesitant to pursue treatment outside of Canada (although Albany did call yesterday to set a date! I called back today, but Beth was out of the office).

Dr. Arata also is "envious of the situation in Canada." He says Canadians "have brought this issue to the attention of their governments and doctors and the media in a way unlike any other country."

Yet, most Canadians with MS don't see anything to be envious about in this situation. We have the awareness, but no treatment. Americans have treatment, but little awareness. Which is better?

In any case, the information from Dr. Arata is very informative. Thanks again for posting.

I think Seattle.

Offhand, I think India and Italy may have tried this, I'd have to google to see why I think so.

He could also be saying that it has not been demonstrated yet, meaning no one has done it yet, in people with CCSVI.

Thanks for posting this. I know when I first went and looked at Pacific Interventionalists website, I was really impressed with Dr. Arata's credentials. He went to one of the hardest meds schools to get into (UCSF), he did his residency at a top top program at Duke, and did an additional fellowship at the Univ. of Pennsylvania. Like Dr. Dake, Sclafani, and others, this is a guy with top notch credentials and experience. I feel really positive about where things will go when you have doctors of this caliber working on this.

Blaze, I, too, have intracranial sinus malformations (missing L transverse and sphenoid sinuses as shown on MRV). I wonder if the comment in bold above was accurately recorded.

Given that the dural sinuses are actually carved into the underside of the skull bone, I don't understand how a hypoplastic sinus can be stented without causing much harm to delicate brain tissue in the process.

The only way I can envision a sinus being created in the brain is by the drilling of a channel in the underside of the skull bone then inserting a stent, but even if this could somehow be done, some delicate brain tissue would still be harmed when the stent is expanded.

Or am I wrong in thinking this?

~Pam

Pam: I can't answer your question. I hope someone else who has more clinical knowledge can.

I absolutely do not want stents in my jugular veins. The possibility of stents in my brain freaks me out completely.

I'm inclined to think the comment that you bolded might be referring to hypoplastic jugulars and not hypoplastic sinuses. Stenting can be done in veins, I don't know what can be done in the sinuses. I had been hearing mention that PI checks the dural sinuses and may treat the sinuses, which other docs are not doing because the brain is Right There. But if they are treating the sinuses, I can't imagine it's with anything more than ballooning.

" Dr. Hewett stressed that ALL VEINS WILL RESTENOSE. It's not a matter of "if" -- it is a matter of "when." "

Well that's disturbing!

I'm trying to think, what about the 50% of Dr. Zamboni's ccsvi jugular patients who did NOT restenose? Was that over 18 months? What about Zamboni's azygous ccsvi patients, wasn't it in the high 90s percentile that did NOT restenose. I do not think Dr Hewett is right on this one!