This page - My CCSVI Ultrasound Experience was submitted by Angela Sergio Cleary in January of 2014. After updating our site, it would have been deleted. This is a very good page for those of you looking for information about CCSVI. If you haven't already read her other submissions, she is Italian, so excuse her English. Please read on...
Angela Sergio Cleary, Connecticut, USA
My CCSVI Ultrasound Experience
Today, January 14th, as many of you already know, I went to do the ultrasound of the neck and head, a test that is done to find out if a patient with Multiple Sclerosis is affected by the venous problem that Dr. Zamboni discovered many years ago.
I have to be honest when I say that, while I was very positive and excited about it, I wasn't sure that the cardiologist that I met for the first time last week was going to let me do this test. He was confused about the research and he wasn't convinced at all, but he took the time to listen and he agreed to have me do the test. He knew that my MS has been very active and moving too fast and he probably felt the need to give me hope, while he made sure that I kept a dose of reality nearby…
I felt so happy and so excited about this and I wasn't about to have anything go wrong, so I went home and prepared a very simple folder where I stored all the papers that I felt I needed to bring with me and that were different from the ones that I had brought with me to the doctor’s appointment.
This time, I took the directions that Dr. Simka wrote and that explain how to perform the test, which I found on a site called Venous Multiple Sclerosis | CCSVI. On this site, I was able to find the step by step directions and suggestions on how to perform the doppler examination in a multiple sclerosis patient.
This is the site where I found the information:
CSVI-MS (opens a new window)
Three days later (four days before the test), I went back to the heart center that is part of the hospital and I asked to speak to a technician. I wasn’t expecting to be welcomed so fast and so well and, in a matter of minutes, I got to meet the woman that was going to do my ultrasound examination. I asked her if we could talk and she brought me and my husband to sit in a quite place and she listened to everything that we had to say.
She learned about CCSVI and she seemed quite interested about the new discovery and the new research. Once again, just like the doctor did a few days before, this woman showed us the desire to help me. I gave her the folder with the information about the ultrasound and a very simple and basic explanation of what CCSVI is.
I left the center confident and happy and I felt like I was my old self: organized, positive, and excited to help!
Ready to make sure that I wasn't making a mistake and that I wasn't missing something, I got in contact with a doctor in Buffalo (I also wanted to let him know that the funds that I was raising were going to be sent to support his work) and he answered me right away and told me that there is actually no way that someone that is not trained to do the ultrasound can find something wrong.
It seems that the technician has to receive the proper training to be able to recognize the right items to look for. He told me that the center had changed things and that they had decided that 500 of the patients chosen to participate to the test will be given the results of the study and that, from February on, the center would accept self referral requests for the ultrasound test.
A little disappointed about the big possibility of not being able to do the right test, but not too worried and not ready to give up, I thought that, if the test that I was going to do now wasn't going to show anything, I would probably go up to Buffalo and repeat it there, even if I would have to pay for it myself.
Today, January 14th, I went back to my hospital and I met with the very kind and sweet woman that took the time to listen to me four days ago. She had the folder in her hands and she said that she was prepared and willing to help me as much as she could.
She told me that she had studied the directions and that she was probably going to look at them again to make sure that she was going to do all the right steps.
I was brought to a room that had the ultrasound machine and I was asked to lie completely flat onto the little bed. No pillow, nothing under my head or neck. The gel was put on the probe and she started moving it around in sections of my neck, both left and right sides. She then brought me to another room where we were able to use another machine and another probe and, this time, I was laying in a different position and she put the probe on the back of my neck and on part of my head.
She was careful, attentive, and she explained the reason why the test is so difficult to do. She said that the veins move, disappear, and change because of the type of breathing or if the person moves even slightly. I made sure to stand super still for the whole test!
It took 1 hour and 20 minutes and I knew that she had given me 120% of herself and that she had made sure to give me the right test and the best one possible.
Now, while it will take a day or two to know the results, she said that I might have to wait until I see the doctor in February (I have to do two other tests to check my heart) but I will probably call the office in two days.
I am not concerned or worried. I take a day at a time and I am ready to take another step if this one doesn't give me what I am dreaming of.
I know that I am taking a risk doing the test with a person that hasn't been trained by Dr. Zamboni or by someone that worked with him, but I also know that every experience that we have in life does teach us something and this one did too. I did learn, once again, that feeling passion for what we do is very important and it always brings us good things, no matter what the outcome is.
The woman that did my test was one of these people. She took my story seriously and she truly wants to help and that is touching enough for me!
Even if I find that nothing came from taking this test, I will bring this experience with me because it was a good one anyway and it showed me that there are people out there willing to listen and to help us!
Here is a reply from one of our visitors which would have also been lost during the update.
REPLY: Good For You!
Wow, Angela, that's quite a story! Like most MSers, I have been following the story of Dr. Zamboni and CCSVI and this entirely new possibility for MS. I am too old for the trial (I am 61 next month,) but I wrote right away and found that out. It's also just for R/R as I recall (and Buffalo is far from me anyway) which is questionable with me now after 37 years with MS.
Of course anyone with that program would have to think and say no other testing would be accepted or even considered---to protect the integrity of their trial--but who knows? If the directions were precise and the woman did everything precisely, who knows? One trick will be to get it interpreted correctly.
You are to be congratulated for your persistence and bravery in going into uncharted territory on your own. As you say, maybe it will ultimately help someone else or yourself at a later time. If you do get to Buffalo, I'd suggest not saying you'd already had this done or they might find some way to disqualify you from their procedures. I trust other people smarter than me will be advising you too. lol
Just hearing about your experiences gives me hope that there really are some hospital emloyees who are willing to listen and learn and then act! Good luck to you, Angela! Be sure to let us in on the continuing story of this breaking news!
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