Dr. Arata's presentation

Cece · Post by **Cece** » Wed Feb 02, 2011 6:37 am

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

Dr. Arata wanted to share some of his observations based on one year of treating CCSVI. With over 500 patients now treated at his clinic, Dr. Arata feels there are a few exceptions to the MS - CCSVI connection. Dr. Arata sees flaws in the jugular valves in almost all patients on both sides and believes this causes a form of cerebrospinal venous hypertension.

Cece · Post by **Cece** » Wed Feb 02, 2011 8:54 am

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

"Driving down the side streets will never be as fast as driving down the highway" ~ Dr. Joseph Hewett commenting on collateral veins and why we need to treat CCSVI.

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

Dr. Code mentioned one patient who had CCSVI treatment and had two hours of radiation exposure during the procedure, leading to all of her hair falling out. Dr. Hewett said this couldn't happen in the US or Canada because of the regulations.

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.

But remember, RESTENOSIS WILL HAPPEN. (I find it curious restenosis is often cited as a reason a) not to have CCSVI treatment in the frst place, and b) evidence of a failed treatment. It is neither -- it is expected with CCSVI angioplasties as it is with all other angioplasties.)

Rokkit · Post by **Rokkit** » Wed Feb 02, 2011 9:31 am

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?

Cece · Post by **Cece** » Wed Feb 02, 2011 9:36 am

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:

Dr. Arata sees flaws in the jugular valves in almost all patients on both sides and believes this causes a form of cerebrospinal venous hypertension.

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!!

ikulo · Post by **ikulo** » Wed Feb 02, 2011 9:47 am

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.

HappyPoet · Post by **HappyPoet** » Wed Feb 02, 2011 11:28 am

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:

Endovascular reconstruction (i.e., vein grafting or bypass) is extremely challenging at this time and has not been demonstrated to result in successful outcomes in people treated for CCSVI. (Surgical correction and vein replacement is not recommended – if this is needed, you will need to wait for the science and techniques to advance.)

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:

In the azygos, secondary CCSVI can manifest as a compression of the vein between the heart and spine and, in the hemiazygos, against the aorta. Dr. Arata feels stent placements in the azygos are safe. He no longer recommends stents in the jugulars except in rare circumstances.

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

Blaze · Post by **Blaze** » Wed Feb 02, 2011 4:14 pm

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.

Blaze · Post by **Blaze** » Wed Feb 02, 2011 4:25 pm

Cece wrote: I am not even sure where they were giving these presentations? I just love hearing from the doctors.

I think Seattle.

Cece · Post by **Cece** » Wed Feb 02, 2011 4:31 pm

HappyPoet wrote:I didn't know reconstruction had been tried for CCSVI reasons. Cece, have you heard of any such procedures?

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.

CenterOfGravity · Post by **CenterOfGravity** » Wed Feb 02, 2011 9:04 pm

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.

HappyPoet · Post by **HappyPoet** » Thu Feb 03, 2011 6:58 am

Blaze wrote: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).

CCSVI at UBC MS Clinic wrote:A secondary type of CCSVI is imaged through MRI involves hypoplasia or aplasia of the sinus of the brain. (Hypoplasia is the underdevelopment or incomplete development of the vein; aplasia is defective development or a birth defect.) Treatment is venous stenting of the hypoplastic segments.

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

Blaze · Post by **Blaze** » Thu Feb 03, 2011 11:15 am

HappyPoet wrote:
Blaze wrote: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).

CCSVI at UBC MS Clinic wrote:A secondary type of CCSVI is imaged through MRI involves hypoplasia or aplasia of the sinus of the brain. (Hypoplasia is the underdevelopment or incomplete development of the vein; aplasia is defective development or a birth defect.) Treatment is venous stenting of the hypoplastic segments.
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.

Cece · Post by **Cece** » Thu Feb 03, 2011 4:08 pm

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.

David1949 · Post by **David1949** » Thu Feb 03, 2011 4:42 pm

" 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!

Cece · Post by **Cece** » Thu Feb 03, 2011 5:58 pm

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!