Buffalo Study Experience

Posted on Nov 8, 2011 by Lynne Thompson from Ontario

On August 10, 2011, I went to Buffalo, NY to take part in the CTEVD Study (Combined Transcrainial and Extracranial Venous Doppler Evaluation in Multiple Sclerosis and Related Disease) at The Jacobs Neurological Institute in Buffalo General Hospital.

Have you ever thought of this controversial 'miracle cure' , and wondered about the medical community's hesitancy?

I believe they are right to wait until these re
search studies are completed, but we can each have our own opinions and decisions on what is right for us personally.

As it was a non-invasive procedure, I signed up for 2 days of intensive study. Coleen Kilanowski was my first contact into this study.
A personable, patient young woman, she emailed and called prior to my trip and set up a schedule suitable to my needs; then when I arrived,
she made sure I was well cared for at the clinic. In fact, every person we met at both the clinic and the hospital were very helpful and pleasant.

Part one of the study was an extensive personal history which was also aimed at environmental factors. I have difficulty with 'recall on demand' so had come prepared with notes & copies of doctor's reports, where I'd lived/worked/etc. After 3 hours (not always this long) we had a break for dinner before going back for my bloodwork & MRI.

Luckily I have no problem being in enclosed spaces so the 80-90 minutes were just a 'rest-time'. I used earplugs as I don't like my ears covered with headphones and the music in them just gives me sensory overload when the machine noises start. Instead, I concentrate on my breathing 'in time' to the MRI clicks,etc. and this calms me.

The noise patterns change during the latter part but by then I had my breathing under control, so just mentally blocked out everything but my own breath rhythms.

This MRI takes smaller slice pictures than our usual MRI tests. After this was completed, I was very relaxed, so they got me up slowly and when they were sure I was ok, they had the hospital security /cab drive me across the street to the Doubletree Inn.

The hotel staff was also sensitive to my special needs and though we had a few of the usual glitches ( room not ready for early arrival), they went out of their way to ensure we were comfortable and ready for my appointments. They give a special rate to people staying at the hopital ( bring verification/code).
Doubletree Inn also has valet parking, ($12/day) due to limited street space, but provide a shuttle bus to take you where you want to go in Buffalo.
So shopping and a trip to the beautiful Art Gallery were fit into my schedule. A wonderful way to have a mini vacation !

On day 2, I had a short eye test before the Doppler ultrasound which can also can take up to 90 minutes but is painless.... just pressure which some people might find uncomfortable, but it didn't bother me. I had to leave my rollator/walker hidden in another room as I was only a number to the very capable technician, Karen.

The gel can get into your hair, and if you didn't wear a low neckline, it might get into your shirt. The gel washes out easily but you might want to bring a spare to change into, and have an easy-care hairdo that day. But these are minor inconveniences considering the relavance of the test.

After a short wait I got in to see the wonderful neurologist who had a few questions and suggestions. She actually listened and conversed then gave me a copy of the MRI to take to my own neurologist. I also came prepared with my GP's permission slips, to get or give any info through the clinic.

Canadians will be pleased to know that Buffalo General Hospital has a Tim Horton's kiosk in their lobby, so you can get your coffee to go before the
short drive to the border crossing at Fort Erie.

This study is supposed to be completed by Nov.30,2011, but might have to be extended if the last 40 people required don't come forth by then.
They have completed the M.S. group, so now seek the "Control" groups. They need two age groups: 18-30 years old and 60-70 years old.
So anyone wanting to participate must contact Colleen directly at email: ckilanowski@bnac.net or phone: 716-859-7673.
Let's all work together to get this valuable work done. I can be reached at: lynn4ms@hotmail.com if you have questions or comments for me. Thank you !