CCSVI treatment available in the U.S.!

Blaze · Post by **Blaze** » Fri Sep 10, 2010 8:42 am

Many thanks to Vivavie for the tip on Rhode Island Vascular Institute. Vivavie, I'm disappointed they weren't able to help you more.

I called RIVI on Tuesday and was told Dr. Soares would call me back, probably this week. Two days later, he phoned. I have spoken with both Dr. Soares and his Clinical Services Manager, Eleana. They were both professional, informative, helpful, understanding and realistic.

Dr. Soares has done two CCSVI procedures, one with "extraordinary" results and one with "equivocal" results. He is in contact with Dr. Siskin. I understand Dr. Soares is an experienced, skilled IR in many venous procedures. He plans on doing more CCSVI procedures, some as part of a study and some as general treatment.

They do accept private insurance. For those who are self-paying, the cost is based on number of veins requiring angioplasty and number of stents required. A general estimate is $8,000-$12,000. They are working with their finance department towards a more standardized rate similar to Albany.

They have a short waiting list. Because of some issues which were identified in my MRV, I have decided not to travel at this time for treatment due to a possible risk of complications (SOB!). My conversation with Dr. Soares helped me to make this decision.

As Vivavie posted, telephone number for RIVI is 401-421-1924. Nataczia, the receptionist, was friendly and professional.

SofiaK · Post by **SofiaK** » Sun Sep 12, 2010 8:53 am

Does anyone know what type of stents Dr. Siskin in Albany uses?
What are they called and made of?

I'm getting anxious that I may need a stent.
Thanks for your help.

javabean · Post by **javabean** » Mon Sep 13, 2010 1:36 am

I apologize if this has already been addressed, but I am wondering how many people have been to Albany and no venous abnormalities were found. I have looked through the thread and it seems like most have, but if people are willing to share, I would appreciate it, as I may have missed something.
Thanks

Cece · Post by **Cece** » Mon Sep 13, 2010 5:11 am

javabean, I don't have the exact numbers, but it has happened. In the beginning, when there were only 15 total, 4 were found not to have CCSVI. I would think he gave updated numbers at the symposium...anyone know?

JCB · Post by **JCB** » Mon Sep 13, 2010 5:26 am

If I can remember I will ask him today

Trish317 · Post by **Trish317** » Mon Sep 13, 2010 6:28 am

JCB wrote:If I can remember I will ask him today

Sending you good thoughts and prayers. My darling man will be on a plane to Albany in a half hour for the procedure tomorrow. Now my nerves are really ramping up.

David1949 · Post by **David1949** » Mon Sep 13, 2010 7:09 am

Trish317 wrote: My darling man will be on a plane to Albany in a half hour for the procedure tomorrow. Now my nerves are really ramping up.

I wish him great success!

Trish317 · Post by **Trish317** » Mon Sep 13, 2010 7:12 am

David1949 wrote:
Trish317 wrote: My darling man will be on a plane to Albany in a half hour for the procedure tomorrow. Now my nerves are really ramping up.
I wish him great success!

Thank you so much! We wouldn't be where we are now if it wasn't for all the information I've learned here at TIMS. I'm eternally grateful to all the wonderful people here. You are all in my prayers every day.

AlmostClever · Post by **AlmostClever** » Mon Sep 13, 2010 7:45 am

Just got done chatting with another local MS'er who has been pursuing local treatment in Houston. She had never heard of it before I told her about it 2 months ago!

Her doc and another will be holding a PUBLIC discussion this month about CCSVI and hope to be doing procedrfes SOON!!!

I will keep you posted!

A/C

garyak · Post by **garyak** » Mon Sep 13, 2010 7:56 am

I have my procedure in 7 days at the Del Mar Vein Care centre in San Diego - through referral from Hubbards. I will post my entire experience next week, gary

naychergirl · Post by **naychergirl** » Mon Sep 13, 2010 12:10 pm

I have an appointment in Albany for Oct. 8th. It can't get here fast enough! I continue to pray for all of you, the doctors and staff, and for the medical community to turn the light on! I hope that all of us are in the 1/3 of success stories!

javabean · Post by **javabean** » Mon Sep 13, 2010 1:28 pm

Cece,
Thanks for respondiong and JCB, good luck and my thoughts are with you.
I am having my procedure done some time in January...called in May but am pregnant so was told January...
This pregnancy has done a number on my legs so of course, I am as hopeful as the rest of us that something in the veins is found and so was curious to see how many showed nothing.
Thanks

fogdweller · Post by **fogdweller** » Mon Sep 13, 2010 2:10 pm

I am having a test/treatment on Sept. 27-29 at Pacific Center in Orange Couty, CA. I am a bit nervous about it, but still looking foward to it.

I do not expect any improvement. That sounds funny to say, given all the hopeful things that contributers to this site are saying, but that is the case for me. I have PPMS. I have had it for 35 years. It has been very slow, and indeed I am still not in horrible shape. I just stareted using a cane, and don't even need that much of the time. I expect most of my symptoms represent permanent damage, and as one participant to a seminar on this topic said recently, a dead neuron is a dead neuron. They don't come back.

My biggest problem is neuropathic pain, and that is not one of the problems that seems to improve.

However, if I can stop getting worse, that is a big step. I'll let people know my experience.

Trish317 · Post by **Trish317** » Mon Sep 13, 2010 2:25 pm

garyak, naychergirl, javabean, and fogdweller.....sending you prayers and good thoughts for wonderful results and healing.

JCB · Post by **JCB** » Mon Sep 13, 2010 3:14 pm

I will post remarks on my results at a later time, too tired tonight. The Albany team is great. The answer that I came away with when I asked how many people don't show any blockage ranged from "very few" to "none". Nobody wanted to give a real specific answer, which is hard for even the experts to define.

If you have MS I would try and get treated. Good Night, my stent snd I are callling it a day.