VAC Pittsburgh

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
alcha
Newbie
Posts: 1
Joined: Sun Dec 05, 2010 3:00 pm
Contact:

VAC Pittsburgh

Post by alcha »

anyone been treated at Vascular Access Center? i'm thinking about going to the located in Pittsburgh w/ Dr Robert Worthington-Kirsch.

Any input welcome

thanks.
User avatar
MaggieMae
Family Elder
Posts: 380
Joined: Wed May 23, 2007 2:00 pm
Location: Pennsylvania
Contact:

Post by MaggieMae »

We too live in Pittsburgh area. Hoping to hear more about this doc for those I know who can't afford to travel for treatment.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

Here is a pdf of a presentation Dr. Kirsch did this month on CCSVI at the VIA Foundation 3rd Annual Women’s Health Symposium in Buffalo, NY:

http://tinyurl.com/3zdws2m
Spectrum Disorder
Multiple insults
Threshold effect
No one cause
–No one cure
Different people have different spectra
–Heterogenous response to treatments
Abnormalities can be seen in normals
Migraine
I hadn't heard the term spectrum disorder before but it fits.
Initial Evaluation
Confirm Dx of MS
History and Physical
–Include metrics of MS
EDSS
Fatigue
MSIS
Evidence of other vein disease (espM-T)
Non-invasive imaging not yet helpful
Non-invasive imaging not yet helpful? Does VAC do a pre-procedure ultrasound?
Catheter Venogram
Gold standard for evaluation
Diagnosis and treatment at same sitting
Evaluate IJVs and Azygosvein
? IVC Confluence, Renals
This too makes me wonder if they do pre-procedure imaging. I find pre-procedure imaging to be a good thing for comparison to post-procedure imaging but hard to say.

Dr. Kirsch has been said to be using the "McGuckin Protocol" which we determined in another thread to mean checking not just the IJVs and azygous but also the renal veins and IVC. Dr. McGuckin has ballooned a number of patients renal veins, interpreting them as 50% blocked; Dr. Sclafani has only ballooned one patient's renal vein.

Ballooning unnecessarily could cause damage; not ballooning if it is a stenosis could leave it untreated. The azygous can drain into the renal in some anatomical variants so that is why a blockage there could affect CCSVI.
Intervention
Look at both anatomy and flow
–Delay, turbulence, collaterals
PTBA
–Sometimes need high pressure balloons
–? Utility of cutting balloons/valvulotomes
Stents
–Lesions resistant to PTBA
–Bailout
–Recurrence
Helpful for knowing what techniques he may use. PTBA means balloon angioplasty. It sounds like Dr. Kirsch will use high pressure balloons sometimes and stents if ballooning does not work but is unsure of the use of cutting balloons. Here he uses the term 'bailout' which is also on Dr. Sclafani's symposium list-of-topics, I need to get a precise definition of that term!
Extravascular Lesions
Impression from carotid bulb
Impression from bone spurs
Compromise by muscle slips/fibrous bands
–Often positional
? Stent
? Surgical release
He's familiar with the concept of extravascular or physiological narrowing. I can't tell from this if he would stent these or not. Dr. Sclafani has called narrowing from the carotid impression a leave-me-alone lesion.
About 1/3 of patients have MAJOR symptom improvement
–Often almost immediate
–Dysarthria
–Strength/Coordination
–Fatigue
–Brain Fog
This is the 1/3rds, 1/3rds, 1/3rds that Dr. Siskin often discusses. I would assume that if Dr. Kirsch is mentioning it, he is seeing these results as well in his patients at about these percentages. He goes on to say the 1/3 mild, 1/3 no improvement.

In the same google search that turned up this pdf, it turned up the ISET newsletter which mentioned this non-CCSVI research:
The results of a randomized
trial to study the performance of
two leading bland embolics have
demonstrated equivalent outcomes
between the two products
used.1 The trial, published on line
by the Journal of Cardiovascular and
Interventional Radiology (CVIR) in
December 2010, was led by Robert
Worthington-Kirsch from the
Peripheral Vascular Institute of
Philadelphia with colleagues Gary
Siskin and Paul Hegener from a
second center, Albany Medical
College, New York, and involved
46 women.
I mention it because it shows that Dr. Kirsch and Dr. Siskin have worked together. Seeing Dr. Siskin's 'thirds' stated in Dr. Kirsch's presentation also shows a cross-fertilization of ideas between the two. This is a good thing as Dr. Siskin has a great deal of experience with CCSVI at this point.
Durability varies
–? Dependent on vessel treated
–? Recurrence of symptoms associated with recurrence of lesion
Dr. Cumming has been saying that durability is important and where we'd like to see advances. Dr. Kirsch raises two good questions about durability.
Goals
Sort signal from noise
–Real treatment effect vs Placebo effect
Candidate segmentation
–Who is or is not a candidate
–Timing of treatment
–Predictability of outcomes
Treatment protocols
–What is a lesion
–How to treat
Reasonable goals.

A Very Long Post, I know, and I hope someone comes along with actual experience with the doctor. But I found his presentation materials of interest and it shows he has an understanding of CCSVI.
User avatar
codefellow
Family Elder
Posts: 120
Joined: Tue Nov 18, 2008 3:00 pm
Contact:

Post by codefellow »

Cece wrote:Non-invasive imaging not yet helpful? Does VAC do a pre-procedure ultrasound?

I have been on the phone with a lady from VAC (they opened a center in New Orleans :D ). They do NOT do a pre-procedure ultrasound. Dr. McGuckin feels it doesn't show him enough useful data and is an unnecessary expense for the patient.
User avatar
codefellow
Family Elder
Posts: 120
Joined: Tue Nov 18, 2008 3:00 pm
Contact:

Post by codefellow »

codefellow wrote:
Cece wrote:Non-invasive imaging not yet helpful? Does VAC do a pre-procedure ultrasound?

I have been on the phone with a lady from VAC (they opened a center in New Orleans :D ). They do NOT do a pre-procedure ultrasound. Dr. McGuckin feels it doesn't show him enough useful data and is an unnecessary expense for the patient.

....or wait, maybe he doesn't do an MRV...is that the same thing?
Please ignore my previous post and this one. Clearly I do NOT know what
I am talking about... :oops:
User avatar
MaggieMae
Family Elder
Posts: 380
Joined: Wed May 23, 2007 2:00 pm
Location: Pennsylvania
Contact:

Post by MaggieMae »

I talked to the Vacular Access Center in Pittsburgh about four weeks ago to see if they use the Zamboni protocol ultrasound. Talked to office manager and he said they do not do Zamboni ultrasounds, nor do they do ultrasound before procedure. I had called hoping their center could be a possibility for follow-up ultrasounds for my husband.

He also mentioned that Dr. McGuckin is working with their Center. I too have read that Dr. McGuckin doesn't do a pre-procedure ultrasound. I should have asked if he uses IVUS.
User avatar
milesap
Family Elder
Posts: 147
Joined: Wed Jul 20, 2011 2:00 pm

Vascular Access Centers don't use Doppler because

Post by milesap »

It can be misleading. They use the venogram and catheter. Since 97% of MS patients have two or more veins blocked (Zamboni protocol for CCSVI) they keep the cost low by not adding additional testing.
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

There are two reasons for the pre-procedure ultrasound that I know of:

- to provide indication of CCSVI so insurance companies will cover further investigation/treatment

- to have a "before" ultrasound to which to compare any "after" ultrasounds

I'm not sure I have an opinion on whether to skip them or not.
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”