CCSVI treatment available in the U.S.!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby jay123 » Thu May 13, 2010 3:29 pm

They are treating people there, they are excellent! I have had both angio and then a stent placed by them.

In addition to this they are GETTING IRB REVIEW FOR SOME FORMAL STUDIES.
User avatar
jay123
Family Elder
 
Posts: 373
Joined: Mon Sep 21, 2009 3:00 pm

Advertisement

Postby MS_mama » Thu May 13, 2010 3:59 pm

jay123 wrote:They are treating people there, they are excellent! I have had both angio and then a stent placed by them.

In addition to this they are GETTING IRB REVIEW FOR SOME FORMAL STUDIES.


Can you tell us a little bit more about your experience with them? I just got the call from the pt. coordinator and I'm awaiting the call from the doctor. On pins and needles here...
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
User avatar
MS_mama
Family Elder
 
Posts: 107
Joined: Mon Nov 09, 2009 4:00 pm

Postby FlashHack » Thu May 13, 2010 4:54 pm

jay123 wrote:They are treating people there, they are excellent! I have had both angio and then a stent placed by them.


... and any info on cost you could share would be very much appreciated. :?:
User avatar
FlashHack
Family Elder
 
Posts: 169
Joined: Wed Jan 20, 2010 4:00 pm
Location: Portland, OR

Postby Johnson » Thu May 13, 2010 6:46 pm

Really Nunzio,

Good luck next week!
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby SandyK » Thu May 13, 2010 8:42 pm

Received my call back from the person scheduling and she said she would have to talk to the doctor about accepting me since I am uninsured. Honestly, a person doesn't need health insurance to get fake boobs! I am on so many lists now. Someone is bound to take my life-savings at some point...
Diagnosed 1994, Self EDSS is 6.5
User avatar
SandyK
Family Elder
 
Posts: 221
Joined: Wed Oct 14, 2009 3:00 pm
Location: WA

Postby Rokkit » Thu May 13, 2010 8:51 pm

SandyK wrote:Received my call back from the person scheduling and she said she would have to talk to the doctor about accepting me since I am uninsured.

I have wondered about that myself in a case where you are willing to pay cash up front what does it matter? The only thing I've been able to come up with is maybe the problem is in case of complications that you couldn't pay for. Like, I don't know, say a stent wound up in your heart. The docs would be screwed then, they'd have to do something, and there would be no insurance to bill.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby Liber8 » Thu May 13, 2010 9:20 pm

Good question. I know a lot of people would have had this done if clinics were willing to perform it.Maybe that's one of the things that has concerned them. It would be hard for them to explain why they were denying people without insurance when it is an elective procedure that you have to pay out of pocket for. Don't get me wrong, I would understand their stance on it (not that I would agree with it) but it sure would look BAD to the public.

I did get a call today also and gave my info. They did make sure to get my Ins info. It will be interesting to see how far out they are. I also emailed Holly and asked her to take me off the list for Dr Sclafani. I have an appt for Poland around December if this falls through and I was feeling a little selfish
User avatar
Liber8
Family Member
 
Posts: 57
Joined: Sun Feb 28, 2010 4:00 pm
Location: 10,000 Lakes

Postby bmk1234 » Sat May 15, 2010 9:37 am

If someone has had the procedure performed at this clinic, I would appreciate a PM describing your experience with these DR's. etc.

thanks
User avatar
bmk1234
Family Elder
 
Posts: 101
Joined: Sun Jan 31, 2010 4:00 pm

Postby Trish317 » Sat May 15, 2010 10:07 am

bmk1234 wrote:If someone has had the procedure performed at this clinic, I would appreciate a PM describing your experience with these DR's. etc.

thanks


Yes, I would, as well.

Thanks!
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby kc » Sat May 15, 2010 1:19 pm

How bout a post on people's personal experience with this clinic? So far the reputation is very good.

kc
User avatar
kc
Family Elder
 
Posts: 116
Joined: Sun Jul 03, 2005 3:00 pm

Baby Don't Loose My Number!

Postby FlashHack » Sun May 16, 2010 3:05 pm

Got a call to my home number this morning from Dr. Siskin. Unfortunately, I was at church! Said he would call my cell tomorrow if he didn't get hold of me later today. Obviously they are working weekends to deal with the flood of calls they received.
User avatar
FlashHack
Family Elder
 
Posts: 169
Joined: Wed Jan 20, 2010 4:00 pm
Location: Portland, OR

Re: Baby Don't Loose My Number!

Postby ndwannabe » Sun May 16, 2010 3:34 pm

FlashHack wrote:Got a call to my home number this morning from Dr. Siskin. Unfortunately, I was at church! Said he would call my cell tomorrow if he didn't get hold of me later today. Obviously they are working weekends to deal with the flood of calls they received.


Me too :) Fortunately I picked up, even though the call ID showed "restricted". I usually don't pick up "restricted".

A personable guy, sent me an e-mail as well, encouraging "not to be shy and ask questions" :)
User avatar
ndwannabe
Family Elder
 
Posts: 290
Joined: Sat Jan 02, 2010 4:00 pm
Location: SF Bay Area, CA

Dr. Siskin

Postby FlashHack » Sun May 16, 2010 8:46 pm

Wow, this guy is working late. Dr. Siskin called again tonight at 7pm Pacific. So he is up calling us MSers at 10pm his time. impressive. He spent several minutes querying me about my MS diagnosis and symptoms. Next we discussed CCSVI and its diagnosis. Here are some points I found encouraging.

1. TESTING: Like Sclafani, Siskin believes that a catheter venogram is the gold standard for diagnosing CCSVI. For those of us traveling long distances to be treated (Canadians and west coasters), he doesn't believe we should be subjected to the vagaries of a preliminary MRV or doppler US.

2. EXPERIENCE: He (or his clinic?) has already performed 15 procedures. They have scheduled 60 more. Siskin estimated that my wait would be 2 months. He is very hopeful that that timeline will become shorter.

3. IRB APPROVED STUDY: As I think was said before, they are contemplating an IRB approved study, but that is a separate deal. They are treating people now and not waiting for a study.

4. INSURANCE: They have had success with billing insurance.

5. COST: For those having to pay out-of-pocket they will try to minimize costs by performing the procedure at their clinic rather than the hospital. At their clinic, the venogram runs approximately $3,000. Angioplasty adds another $2,000 (per?). Stents are $2,000 per. The hospital would be over $12,000 for the procedure, but there is less waiting using the hospital's facilities as opposed to the clinic.

Well, that is all I can remember. He was quite nice and patiently answered all my questions. I was very encouraged and almost feel like celebrating, but don't want to jinx anything. :wink:
User avatar
FlashHack
Family Elder
 
Posts: 169
Joined: Wed Jan 20, 2010 4:00 pm
Location: Portland, OR

Postby Liber8 » Sun May 16, 2010 9:03 pm

Thanks Flash ! Very happy to here about the cath venogram and Insurance possibility. Did you happen to talk about how they feel about stents and cost and/or time line if you have to go back because of restenosis?
If not I will try to remember to ask.

When did you contact them? Hoping to get a self estimate of when I would be considered.
User avatar
Liber8
Family Member
 
Posts: 57
Joined: Sun Feb 28, 2010 4:00 pm
Location: 10,000 Lakes

Postby FlashHack » Sun May 16, 2010 9:28 pm

Liber8 wrote:When did you contact them? Hoping to get a self estimate of when I would be considered.

Wednesday, May 12th around 9:30 am.
User avatar
FlashHack
Family Elder
 
Posts: 169
Joined: Wed Jan 20, 2010 4:00 pm
Location: Portland, OR

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users