Thursday, April 15, 2010

How things happened

Tomorrow will be 2 weeks since my Liberation of some of my MS difficulties. The journey to get to this point took several months. Here is the time line that got me to Dr. Bonn. I won't want anyone to think that I just called a doctor and had the procedure done. All good things take a little time.

My journey start back in November just a couple of days after the first W5 program aired. That is when I registered for the Buffalo Study, and started gathering information. I also sent personal emails to both the staff in Buffalo and to Stanford University. They both replied and informed me that they had my information and would be in touch.
My next call was to a local Vascular Surgeon. I made an appointment, only to have them call and cancel it. That doctor was not interested in doing such surgery. Knowing that I was going to need an ultrasound, I ventured to my GP loaded with printouts and reports from the Internet. He found the information interesting and would send me for an ultrasound, except on the order form there was no area to indicate a Jugular Vein ultrasound. He took my information over to the hospital and spoke with the radiologist. I was scheduled for a MRV Dx. Ataxia. The report stated "No Thrombosis". That is not what we were looking for, but at least I had the MRV. This is now the beginning of December and so far things have been moving right along. But I was coming to an abrupt stop. Contacted a second surgeon who had done other procedures on me, to see if he was interested. NO, He would not do untested procedures.(old School) The holiday Season came around I my energy was all focused on the season. Start again after the New Year....

I was reading everything I could about the procedure and where people were getting it done. As soon as I heard that Albany NY was starting a study I registered with them. Hoping to have all my bases covered. Learning as much information as possible. There is nothing better than a well informed patient. A secondary medical issue put me on a side rail for a few weeks, allowing me to read and learn more. Made and appointment with my local neurologist and my diagnosing neurologist in Philadelphia. First Neoro had only one other patient ask him about CCSVI, he had heard about it but had no information. I took him in some the next week.
March first, was my appointment with Second Neoro at University of Penn Hospital. I went loaded with MRI's,MRV, reports and literature. I knew that Dr. Markowitz knew about CCSVI, and wanted his input about it. "Very interesting, but the studies still have to be done." His final comment was "Let me know how you make out with that." So now I had hit yet another brick wall.
I had heard that Dr. Scalfani in Brooklyn was doing procedures. After contacting them and being put on the list, I sent my info, copies of my CD's and insurance information. Now it was going to be a waiting game. Making more contacts through Face book and reaching out to other people for information. That is when the true sharing of information started to take hold. I found out through a friend on face book that it was an Interventional Radiologist we should be seeking out. Also, I should not be asking about CCSVI in relation to MS, but Congenital Abnormalities of the Cerebral Venous System. With that information, I was able to start reading about a different type of doctor.
After searching through lists of doctors at all the University Hospitals in the Philadelphia area, and reading their bio's etc. I came across Dr. Joseph Bonn at Lankenau Hospital. I had a name and phone number, but it took me quite awhile to actually pick up the phone and call. I did not want to have yet another person deny me. I called and got voicemail. I left my message that I wanted evaluation for Congenital Abnormalities of the Cerebral Venous System. With in a couple of hours I had a reply. Dr. Bonn was interested and wanted to see me the following Monday. WOW, I had an appointment and the doctor was interested.
I went to the appointment still a little scared that once he realized that I had MS he would dismiss me. Quite the contrary. After giving his assistant all my medical history as well as my studies, reports and literature, Dr. Bonn came in to see me and he was smiling. I had found my savior.
After talking about all the information, he asked me to come back in a week, after he had had a chance to look over my studies and get additional information. My next appointment was the following Monday March 29th. At that appointment, an ultrasound had already been scheduled and we were scheduling a venograph at the same time, for a later date. Dr. Bonn went over all the side affects of the procedure and all the risk factors that went with it. During the Doppler ultrasound I could see the back flow of blood that was not leaving my brain. We could also see the stenosises on both sides of my neck. My next step would be to have the venograph done, and any areas that he found to be blocked would be opened at that time. I was scheduled for that Friday. April 2nd.
And that is how I got to where I am. Feeling good, NO Headache and being able to walk a lot better than I had been.

More to come on my daily or bi-daily updates.


  1. Hi Janet,

    Wow, my story is so similar to yours! I'm so glad I found your blog. I'm having the surgery with Dr. Bonn very soon! I was also told "no" by docs at Penn and many other places.

    I'd love to chat with you off-line, if you wouldn't mind. Please drop me an e-mail at


  2. Dear Janet,

    You said to look for an "Interventional Radiologist." Is he/she able to do the diagnostifc tests needed and then you go to a vascular surgeon?

    I was diagnosed in 1995. 15 years is way too long to be tired and off balance! I am more than ready to get this procedure done! However, I want to be sure to have all my ducks in a row. I was so foggy when I was first diagnosed I never thought to get copies of my MRIs and other tests. However, if we ask to be evaluated for "congenital abnormalities of the cerebreal venous system" that is probably not a part of what was done in the initial tests--so maybe I start over with getting a venogram and dopplar ultrasound?

    Grand Rapids, MI is pushing to be a medical center so I am going to try to convince people here to get on the bandwagon. If they want to put GR on the medical map this is a good way to do that to my thinking! I would appreciate if you would confirm my understanding of next steps. You can email me at Thank you for your blog!

    Blessings, Carol