This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed May 22, 2013 5:49 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 15 posts ] 
Author Message
PostPosted: Fri Jul 30, 2010 6:55 am 
Offline
Newbie
User avatar

Joined: Wed Apr 14, 2010 3:00 pm
Posts: 9
Hi everyone,

Just saw in my google alerts that Pacific Interventionalists seems to be doing CCSVI treatments.

http://www.pacificinterventional.com/about_ccsvi.html

Never heard of them before, but just wanted to pass it on to everyone.

Denon


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 8:17 am 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
I like their focus on symptoms directly attributable to venous obstruction. That's a good approach. I feel like that's more or less the direction Dr. Dake was heading until the neurologists swooped in and saved us.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 8:20 am 
Offline
Family Elder
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 860
Location: India
Rokkit wrote:
swooped in and saved us.


:lol:

I think they do deserve nobel piece prize for that.
Dr. Khan, Dr. Freedman, Dr. Miller should share this award ...


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 8:22 am 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
Just noticed this in their section on CCSVI procedures: "Intravascular Ultrasound (IVUS) for complete venous evaluation"

I believe Dr. Sclafani is the father of this technique applied to CCSVI. It's very encouraging to see new knowledge spreading so quickly. I was close to giving up hope of that happening any time soon.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 8:40 am 
Offline
Family Member
User avatar

Joined: Wed Jun 16, 2010 3:00 pm
Posts: 43
Dr. Arata (who did my procedures) is part of this group. He's very enthusiastic and just came back from the symposium.

He's also very knowledgeable about May-Thurner, which may be wrapped into all this somehow (it is for me).

BTW, he's been using IVUS for years--it's standard IR stuff, not a Sclafani thing.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 9:59 am 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
val57gal wrote:
He's also very knowledgeable about May-Thurner, which may be wrapped into all this somehow (it is for me).

What kind of MS do you have?


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 10:08 am 
Offline
Family Member
User avatar

Joined: Wed Jun 16, 2010 3:00 pm
Posts: 43
Rokkit,

I have PPMS diagnosed 2001.

Dr Arata did a venogram in June, ballooned both IJVs, but couldn't get to the my kinked azygous. (He went in from right side). I had no noticeable changes in MS or other symptoms.

Because of my swollen ankles, we then did a pelvic MRV which found possible MT and justified a second venogram. Next week, he's going in from the left, rechecking the IJVs, approaching the azygous with what he learned at the symposium, and probably stenting the iliac for MT. I'll know more after Thursday.

V


Last edited by val57gal on Fri Jul 30, 2010 3:06 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 10:36 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
val57gal wrote:
Dr. Arata (who did my procedures) is part of this group. He's very enthusiastic and just came back from the symposium.

He's also very knowledgeable about May-Thurner, which may be wrapped into all this somehow (it is for me).

BTW, he's been using IVUS for years--it's standard IR stuff, not a Sclafani thing.

Does Dr. Arata use IVUS for looking at CCSVI? I was just asking this over in drsclafani's thread, if there were any other docs who did!

I think IVUS has been used mostly by cardiologists, that it's relatively new to being used by IRs. And the use of it in CCSVI treatment is completely new, since CCSVI treatment itself is completely new.

I don't know if I believe the idea that May Thurner is as rare among MSers as it is among the normal population...we are seeing a lot of it! Best of luck with your next procedure. I wished you this before on another thread, I think.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 10:56 am 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
val57gal wrote:
Because of my swollen ankles, we then did a pelvic MRV which found possible MT and justified a second venogram. Next week, he's going in from the left, rechecking the IJVs, approaching the azygous with what he learned at the symposium, and probably stenting the iliac for MT. I'll know more after Thursday.

Sounds like a great plan. Very interesting. Please report back as soon as you can, and good luck!


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 11:00 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
Great news for southern California...
Best of luck to you, Val. Keep us posted---
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 2:45 pm 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1155
Location: Riverside, CA
Rokkit wrote:
I like their focus on symptoms directly attributable to venous obstruction. That's a good approach. I feel like that's more or less the direction Dr. Dake was heading until the neurologists swooped in and saved us.


And he used IVUS on my follow up treatment in April. Thank God the neuros were out to lunch that day and weren't able to rescue me. I think the "only treating venous abnormalities" approach is great. Ew and local too. Wonder how much pressure the U's will feel down here to get at least some study going. Excellent news!

M.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 9:19 pm 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1155
Location: Riverside, CA
Very nice page for them too. I like the "angioplasty and/or stenting" part. Would that more could approach with that attitude instead of all or nothing as if one approach has some lock on this...

And to think of how many MS'ers in So Cal haven't even heard of this yet... Let alone the US.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 10:05 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
Quote:
Currently the relationship between Multiple Sclerosis (MS) and CCSVI is still being defined and is debated among leading MS experts. However, many of the symptoms of central venous occlusion and stenosis seen in CCSVI are well understood and have been treated for many years. Central venous occlusion and stenosis may cause a variety of symptoms including swelling of the head, face, or neck, skin color changes within the head, face, or neck, swelling, heaviness, and throbbing of the arms, and occasionally light headedness.

It is not uncommon that these symptoms are disregarded by patients or go unrecognized by medical professionals. In fact, many patients who deny these symptoms on initial presentation will recognize them after being questioned about them or will report the symptoms improve after treatment. Although the short and long term outcomes of patients with Multiple Sclerosis who are treated for CCSVI is not clearly established, it has been clearly shown that symptoms related to venous stenosIs improve with central venous angioplasty and/or stenting.

While central venous therapies for CCSVI may improve MS symptoms, the Physicians at Pacific Interventionalists encourage patients to understand that these benefits have not been clearly defined. Some patients may experience relief of their MS symptoms. However, some patients may have only a transient relief or no relief of their MS symptoms.

Patients with CCSVI suffering from the symptoms described above may benefit from the well established use of angioplasty and/or stenting to treat their narrowed veins. Thus, at Pacific Interventionalists, we encourage patients with MS to seek evaluation of symptoms which may be attributable to venous blockage (CCSVI).

Since the symptoms of venous blockage have been shown to improve with treatment, they are typically covered by insurance carriers. Our dedicated Staff and Physicians help coordinate the initial MRI of the head and neck veins, and will schedule you for a consultation and possible treatment by one of our Interventional Specialists.

I thought this was all quite well explained.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 10:12 pm 
Offline
Family Elder

Joined: Tue May 19, 2009 3:00 pm
Posts: 669
Cece wrote:
I thought this was all quite well explained.

I agree. Very well done.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 30, 2010 10:33 pm 
Offline
Family Elder
User avatar

Joined: Sat Dec 05, 2009 4:00 pm
Posts: 179
Location: Southern California
I was reticent to post Dr. Arata's name and info, but now that he's "out", yes, he was the dr who did my procedure in Costa Mesa, CA. He and his staff were terrific. More info is on "Katie41 in Poland", last post on page 3 of thread, and "May-Thurner and MS/check it out", first post on page 1 of thread.

He was trained by Dr. Haacke, is in contact with Dr. Dake, and attended the NY symposium this past Monday. He is very experienced in the use of stents and angioplasty, especially in veins.

Two weeks post-procedure, my left leg symptoms are gone, my trunk is much stronger, and I can walk around the house without crutches (I'm close to venturing outside without them). This, in spite of the fact that I had a sprained knee and was in a brace when I went in for the procedure. After the procedure, I walked out without the brace and haven't needed it since.

Great find, Val! Thanks so much!!
Katie


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 15 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. I started a Live Chat Room for CCSVI .Link Inside

LymeNurse

1

831

Tue Apr 26, 2011 9:34 am

MegansMom View the latest post

There are no new unread posts for this topic. Eventually radical surgical treatments for CCSVI?

smokey

3

1033

Wed Sep 08, 2010 8:06 pm

Cece View the latest post

There are no new unread posts for this topic. BCBS no longer covering CCSVI treatments

BooBear

9

1340

Sun Oct 09, 2011 3:40 pm

Cece View the latest post

There are no new unread posts for this topic. Those going to Pacific Interventionalists

HopingHusband

0

1175

Fri Feb 11, 2011 11:39 am

HopingHusband View the latest post

There are no new unread posts for this topic. Dr. Hewett at Pacific Interventionalists

Theotherhalf

9

2019

Fri Nov 19, 2010 2:08 am

krcmum View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: