Update on Northern Illinois CCSVI treatment....

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
Donnchadh
Family Elder
Posts: 526
Joined: Sat Jan 23, 2010 3:00 pm

Update on Northern Illinois CCSVI treatment....

Post by Donnchadh »

I went to my IR on Wednesday for the post-op. We went over the results and findings. The venograms truly are the "gold standard" for diagnostic imaging; all the veins were clearly identified.

The IR showed me exactly where the stenosis was; right at the very top where the internal jugular veins join into another set of veins. He discussed stents and told me that he consulted another IR who has already done stents in this location. Would probably use an expanding type of stent.

The problem is that he now has to get approval for the liberation procedure. He has already submitted a proposal to the review board, but it will probably take 2 or 3 months for a decision.

In the meantime, they will not be doing any more ultrasound or MRV tests.

To say this disappointing is an understatement. I will still have to hope the IR gets the green light to go ahead. He is very interested in treating MS patients, and his work was outstanding.

As soon as I hear anything, I will post it.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
rusty2
Family Member
Posts: 31
Joined: Wed Sep 10, 2008 2:00 pm
Location: NW Illinois
Contact:

Post by rusty2 »

My heart and thoughts are with you :)
User avatar
ndwannabe
Family Elder
Posts: 290
Joined: Sat Jan 02, 2010 3:00 pm
Location: SF Bay Area, CA
Contact:

Post by ndwannabe »

Oh, how disappointing Donnchadh... I hope something else will come around sooner than 2-3 month!

Do you have an option of going to another specialist?
User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer »

Donn,

It's the IRB that is holding up the testing program at BNAC !! And that's not even for any treatment !! You did a wonderful job finding a doctor and I wish for all the best for you. Keep us posted.

ozarkcanoer
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

I'm waiting on Dr. Sclafani, who is waiting on an IRB also...it feels just out of reach!! Fingers crossed that your doctor gets the go-ahead.
"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
njdiones
Newbie
Posts: 1
Joined: Wed Jul 24, 2013 5:00 pm

Re: Update on Northern Illinois CCSVI treatment....

Post by njdiones »

Does anyone know of a DR. in Northern Illinois who will perform ccsvi treatment?
User avatar
Donnchadh
Family Elder
Posts: 526
Joined: Sat Jan 23, 2010 3:00 pm

Re: Update on Northern Illinois CCSVI treatment....

Post by Donnchadh »

Dr. Hector Ferral at Evanston Hospital does good work. He uses IVUS imaging.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”