Susan's Patient Perspective
My name is Susan and I have Multiple Sclerosis. I was diagnosed with RRMS 10 years ago at age 40.
The diagnosis was devastating, but at the same time I was relieved to finally learn that the severe vertigo, dizziness, nausea, heat and cold sensitivity, overwhelming fatigue, and numbness from my waist down had a name. As a medical social worker I was all too aware of what MS might mean to my health and my future. Married with 2 young children, ages 6 and 9, I began the fight against my newly acquired “letter disease” with the support of family, friends, and a series of medically prescribed, exorbitantly expensive, FDA-approved drugs.
I have never been one to go down without a fight, so while I did what the doctors told me to do I also investigated alternative: from nutritional to spiritual to eastern medicines. I tried whatever I could to ease my MS symptoms.
In February of 2010 I opened a Facebook account, just to prove to myself and my kids that I could do it (I am computer illiterate!). My son promptly informed me “I’m not gonna friend You!”. Through Facebook I found an abundance of information on CCSVI, and made new friends who shared my passion.
Kystal and I became friends in late March. She was also afflicted with MS and excited about CCSVI. We planned a stand out with posters and signs at our state house on MS awareness day. We made signs about the “liberation procedure” and Krystal’s favorite “CHECK OUT MY JUGS” (jugular veins). One day I noticed on Facebook that a woman who lived not too far from me had been treated for CCSVI. I sent her a message and got the name of Dr. Gary Siskin in Albany, NY. That afternoon, as Krystal and I made posters, I decided to call his office. I was informed by Hope (could she have a better name?) that Dr. Siskin would get back to me in a week or so. But only 15 minutes later my phone rang, and it was Dr. Siskin returning my call.
I made an appointment for an evaluation and continued my investigation of CCSVI- followed blogs, Facebook posts and other websites. I learned that some doctors providing CCSVI treatment were being shut down in the United States because the FDA had yet to approve it for MS patients. I prayed that this would not be the case for Dr. Siskin.
When my evaluation date finally arrived, my daughter and I took our first road trip to Albany, NY- the road to Hope. A nurse took a basic medical history and asked for details about how I was affected by MS. Then we met Dr. Siskin. He explained that his treated patients fall into 3 categories, in roughly equal numbers: significant improvement, moderate improvement, or no improvement.
I then had an MRV, which is like an MRI of the neck veins. Viewing the results of this test, Dr. Siskin informed me that I had 2 areas of stenosis (narrowing) in my left jugular vein and one in the right. That meant I had CCSVI, and more importantly, I was a candidate for this procedure! I made an appointment for my treatment- August 25th.
August 24th finally arrived. My husband and I drove to Albany. We booked a hotel for the night before the procedure and one for the night following. I was a little nervous as I was going into minimally charted waters. My husband was concerned that my expectations might be too high. I assured him I knew the possible outcomes, but that for the first time in a long time I had hope for some improvements in the symptoms that so limited my quality of life.
My husband and I arrived one hour prior to the procedure and reported to the pre-op area. I meet with several nurses, filled out paperwork, and had an IV started. Dr. Siskin came in to speak with my husband and me. He took care to manage our expectations. I assured him I was well versed on the possibilities and felt it was worth it for me to give this a try.
The procedure went well. Dr. Siskin informed me I had two areas in my left internal jugular vein that were moderately stenosed and another on my right jugular that had a more severe stenosis. All areas were ballooned and normal blood flow restored. He also examined the Azygos vein, which cannot be imagined by MRV, and found stenosis there as well, and ballooned it. I remained in the post-op area for about 2 hours, was given a dose of Plavix (a blood thinner), and returned to the hotel where I napped for a several hours.
But my day was not yet over. My husband and I went out for dinner that evening. I experienced very mild discomfort in my neck, but nothing that a couple of Tylenol didn’t fix. The following day I returned to the hospital for an ultrasound of my neck. The improvements in blood flow were noticeable. I was sent on my way home with a follow up appointment scheduled for one month later.
It was a bright and sunny day as we traveled through the Berkshires back home. Everything felt a little crisper, more in focus, and I was able to look around with ease. I wasn’t getting dizzy as I watched cars, trucks, and the landscape go zooming by.
We arrived home. Alone in my kitchen, finally I tested the waters with my new blood flow. First I tried walking heal to toe, something I have not been able to do for over ten years. I did this without arms flying to maintain my balance. I did it with ease!!! I tried balancing on one foot and then the other. No problem!
As the days continued I noticed my energy level was greatly improved. I had decreased neck stiffness, was able to turn my head with ease, and my cog fog was gone. I was able to maintain a thought pattern and carry on a conversation without either stopping due to inability to find words or losing my train of thought. So many times in the past I had avoided conversation and social situation because of this. My heat intolerance was also greatly improved. I went outside in 100F weather and didn’t get dizzy or fatigued.
My son was walking behind me one day and stepped on the back of my sandal. He immediately apologized, but then said “Wait! You didn’t trip like you usually do Mom!” By God, he was right!
Today, four months after treatment, my mood is greatly improved and my anxiety about my MS has decreased. I am now able to accomplish 3-6 daily tasks as opposed to 2-3. If I do feel fatigue, it is less powerful than before and my recovery time is much shorter. The other day I got to the top of the stairs and stopped, realizing that something was different. Then I figured it out. I had run up the stairs, like I used to! My need for sleep is decreasing and I am sleeping much better. The improvements seem to keep on coming. Now, when someone compliments me on how good I look, I can honestly say, “I feel GREAT!”, something I haven’t been able to say in over 10 years.
I know I’m not cured. I still have MS, and the possibility of restenosis is always in the back of my mind. But my quality of life and my hope for the future have been completely turned around. My mind is no longer clouded (or fogged) with what I can’t do due, but instead I have a crisp, new view of what I can do!
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