Life with MS & EDS

November 27, 2009

CCSVI Research at Buffalo

Filed under: Uncategorized — by mseds @ 8:24 am
Tags: , , ,

I’ve been trying to keep up with the buzz about CCSVI and am really excited about it!  It’s breakthroughs like this that bring a lot of hope.  I wrote Dr. Specialist for her thoughts on CCSVI, but given that it’s Thanksgiving weekend, I don’t expect to hear back until next week.  I bet she’s getting a lot of e-mail about it and wouldn’t be surprised if she’s coming up with a form letter to reply to us all.

Speaking of form letters, I read that the University of Buffalo is doing a research study to try to confirm Dr. Zamboni’s results.  I e-mailed them this morning to get more information and instantly received this form letter in response:

Thank you for your interest in the Combined Transcranial and
Extracranial Venous Doppler (CTEVD) Evaluation in MS and related
Diseases study. Chronic cerebrospinal venous insufficiency (CCSVI) is
an ongoing problem when blood from the brain has difficulty flowing
properly to the heart due to blockages or stenoses (narrowing of the
veins). The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis
(MS) when compared to healthy controls (HC) and controls with other
neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical,
magnetic resonance imaging (MRI) and environmental-genetic outcomes in MS patients, HC, and controls with OND.

We have received an enormous response to recent media reports about
our study. Due to the number of applicants and limited funding we are
providing you some detailed information on our study and requesting
some details about you in order to assist us in evaluating your eligibility to participate.

1) Applications will be processed according to our study criteria and
in the order they are received.
2) Please only use the ctevd@bnac.net email address to communicate
with our study.
3) If you decide to write to the email address above, you will receive
a response with instructions to complete an online questionnaire.
4) Once the team evaluates the information you provide in the
questionnaire, you will be contacted to inform you if you are eligible
for further screening.

Please note this is a research diagnostic study – there are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins.

You must:
– Be an adult or child with confirmed MS
– Adult MS must be supported by fulfillment of the McDonald criteria
– Pediatric MS must be supported by fulfillment of Krupp and International criteria
– Have a disease course of Clinically Isolated Syndrome (CIS),
Relapse-Remitting (RR), Secondary-Progressive (SP), or
Primary-Progressive (PP) supported by the Lublin criteria
– Have normal kidney functioning as supported by lab work performed
within 2 months of MRI testing (within 2 weeks if other criteria are met)
– Be able to communicate effectively
– Pass screening for MRI and contrast agent safety
– Be able to travel to Buffalo, NY to complete testing (we only have
this site for testing)

You must not:
– Be in active relapse or have steroid treatment in 30 days prior to MRI
– Have any vascular or heart problems
– Have severe cognitive impairment/dysfunction
– Have a history of drug or alcohol abuse, cerebrovascular disease or
cerebral vascular malformations, head injury or brain trauma
– Have any vascular malformations (Bechet Disease, Budd Chiari Syndrome, Congenital vascular malformations, Deep Vein Thrombosis
within the past year, Chronic Venous Insufficiency of the lower limbs)
– Be pregnant or expect to be pregnant during participation

If you are writing on behalf of a relative or friend, please instruct
him/her to contact us directly at this email address: ctevd@bnac.net

Please do not make any travel plans until your enrollment is confirmed. All testing procedures are paid for by BNAC. However, there is no financial compensation for your participation, or travel and related expenses.

No Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available
upon request. If you think you are eligible to participate and are willing to travel to Buffalo, NY for testing, please take a moment to complete an online questionnaire which has been designed to assist our team in
determining your eligibility as well as providing valuable clinical data for your research record. The questionnaire can be accessed by going to:
https://vovici.com/wsb.dll/s/8727g41a07

Due to the overwhelming response, it will take some time to contact you for any next steps. But you can get the process started by completing the online questionnaire. Thank you in advance for your
patience.

Kind regards,

Cheryl Kennedy, LMSW, MPH
Clinical Trial Manger/Senior Project Coordinator
Buffalo Neuroimaging Analysis Center

They are about six hours away from here.  I’m not sure I’d drive up for this since they aren’t telling people what their results are.  I really want to know.  If I have a vein blocked, I’d like it opened again, regardless of where it is, but especially if it is going somewhere as important as my brain!  I doubt medical coverage would be willing to pay for this, but honestly, why shouldn’t they?  If I had a vein blocked to some important organ, my medical insurance would likely cover the procedure.  It seems like it’s worth trying to find a way to make this work.

UPDATE:

The wording on the Buffalo study’s website has been changed to read, “Currently, enrollment will be closed until late January 2010 in order to evaluate initial study results on first 500 enrolled subjects.” However, you can still complete the online questionnaire.  Please check their website for up to date information if you are interested in the study.

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8 Comments »

  1. ROAD TRIP!!! I’ll pack some chocolate and we can stop at every Starbucks on the way up.

    Comment by posey — November 27, 2009 @ 6:07 pm

  2. Wahoo!! I hope I can get into the study. You’ll be great company and I’ve always wanted to see Niagara Falls!

    Comment by mseds — November 27, 2009 @ 6:24 pm

  3. I;ve had MS Since 1999. Iwant to get in study. Don’t know if I could afford go to Buffalo.

    Comment by Charles Kuykendall — February 7, 2010 @ 11:23 am

  4. I’m about a 6 hour drive from there and a good friend offered to do a road trip with me. Hopefully that can keep costs down. It would be even better if a study began closer to home! I hope we all have more options soon.

    Comment by mseds — February 7, 2010 @ 1:28 pm

  5. Are there any facilities in Buffalo actually doing the corrective procedures on those with constrictions?

    Ottawa, Canada

    Comment by Brian Tourangeau — July 6, 2010 @ 11:22 pm

  6. The BNAC is doing a study (half get the treatment, half basically don’t), but it’s only a handful of people at the moment. I’ve not heard of anyone up there actually doing treatment, unfortunately. I’ll pass along anything I hear. This is moving along far too slowly and I think it’s awful that they are doing a fake treatment on people rather than just tracking their progress. It just seems wrong that this is what our country thinks is appropriate. (Sorry to vent a little!)

    Comment by mseds — July 7, 2010 @ 6:02 am

  7. I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

    Comment by rebecawatson — November 8, 2010 @ 12:10 pm

  8. It’s fantastic that you found a place to go. I agree with you. The corruption has been awful! I think it’s terrible that someone should have to spend even $13k on this. I really hope that things move along more quickly here in the States and Canada, heck, world-wide! I encourage everyone I talk with to keep calling around within a reasonable drive from their homes. I got lucky while doing that and others may, too. Please let me know how things go.

    Comment by mseds — November 8, 2010 @ 12:16 pm


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