I was diagnosed with Multiple Sclerosis August 28th 2008, and I was told to take medicine that would help me feel better and would slow down the progression. I had the option between 4 drugs. They were all injections. I am not going to promote any of them but I decided to take Copaxone. I did it for 15 months, every day. I had bumps the size of golf balls in my stomach and bruises everywhere. Maybe I’m just not good at the injection part... Also I found it hard to think, and everything was in slow motion.
The whole reason I stopped was because of the pain for doing the injections everyday and also the emotional stress and drama that came with it. I never felt better for taking the medicine, nor did I ever find proof stating it helps. When I asked how it helps none of my doctors could explain it to me. It’s all a theory when it comes to MS, nothing is proven. ALL THEORIES.
I started reading articles stating the medicine is NOT proven to work and how some people were getting worse, could it be the medicine or MS taking its course? So I decided I wanted to talk to a doctor to find out the best way to stop. When I would call my MS specialist office they would say "call back next month because we can’t book you in right now,,, and we can’t schedule you in for next month because we don’t know the doctors schedule", OKAY?
So after a few months of that, I just took it upon myself and stopped cold turkey. I do NOT suggest this for anyone as it made me feel sick, do it slowly, talk to your doctor. For ME it was the best thing I ever did, but everyone still needs to do their own research and do what’s best for their situation!!!! I’m no doctor. So no more medicine and Life carried on,,,,, with everyday symptoms of MS, Fatigue really bad, no sleep, headaches, muscle pain, constant neck and back pain, pins and needles in my lower back, legs and hands, memory loss often, bad balance, stuttering had started, etc etc etc... Even without the medicine I had my daily reminders. SO, one evening I was with a really Amazing Friend and he was telling me about this procedure he had heard about by this guy in Europe. I didn’t want to hear it. I had heard about different things people were trying but nothing made sense to me. He kept talking and telling me about this procedure Dr. Zamboni had tried on his wife and how it had to do with the veins and blood flow, etc.
The more he told me, the more I believed and thought made sense. So I started making appointments with my family doctor, neurologist and MS specialists. My Neuro and MS specialist wouldn’t do anything. They said they hadn’t heard about this procedure and since it was new and no proof they couldn’t do anything. My family doctor did not say that. He wrote up the request for me to get the test done that I wanted and that was it.
A few weeks later I had my Doppler (ultrasound on my neck and chest) in Port Perry and they called me to come in to get the results soon after. It showed I had NARROWED (not blocked) veins in my neck and chest, AND at the bottom of my test results it said something like "Due to new data research for people with Multiple Sclerosis do not refer" or something like that. Basically saying he can do nothing with the results. Because of the line stated at the bottom of the results he didn’t know what the next step would be, so he told me to "Google" and let him know what the next step would be. I’m thinking you’re the doctor, shouldn’t you be telling me, you figure it out, and does that sentence mean if I didn’t have a diagnosis of MS they could have referred me? So I looked online for posts from people who had the procedure to see where they went or if they had advice for me.
I had been following the CCSVI in MS Toronto Facebook page and asked people where they were going for Liberation and what their experience was like, what should I be doing to get on the Liberation train. My mom had heard from WaYne who runs the CCSVI in MS Toronto Facebook page, about Albany New York. I love you WaYne!! I was given the information privately, the address, phone number etc. It was not to be spread publically as we didn’t want this facility to be shut down.
I called Albany and left a message for them to call me back. During that time I saw more videos by doctors, on YouTube and even on certain news channels. One doctor that stood out to me, who I found to be very positive and open to the idea that this procedure could ACTUALLY be something (THANK GOD!!!), was Dr. Gary Siskin. On June 23rd 2010 was when they called, they told me I was on a 7 month waiting list. This was fine by me!!
In January 2011 I went to get MRI results from Dr. Paul O’Conner, my MS specialist. The MRI on its own is an experience I thought I would never have to deal with again! What had happened once the year prior was that I had gone for an MRI and the technician told me I needed this dye injection, as requested by a doctor I had never heard of. So I refused. The tech told me to stop crying like his 4 yr old daughter, which I wasn’t crying, I was just refusing the needle. I told him I didn’t want it, because I had never heard about getting this dye injection, nor had I even heard of the doctor requesting it.
I went in the MRI for about 1 hour 15 minutes and when you’re in there they strap your head down. The tech brought me out gave me the injection anyways while I was still strapped down, and then sent me back in the MRI for 3 minutes. That injection must have been needed?!?!? Are you kidding me, I can’t tell you how bad I wanted to drop kick that guy!!! A nurse heard me complaining in the elevator and she said to fill out a complaint form at the front desk so I went to the front desk and they of course didn’t know where the forms were. I left because I needed to get out of there. I sent an email and only heard back from a volunteer, pretty much said he would pass it along to the proper people, but nothing ever happened. I even told my specialist at my appointment to get the MRI results and he told me that I don’t have to get the injection. WHAT, so what was it and why did he do it?!
The same thing happened December 2010, they gave me that damn injection and I even refused it!! What part of No don’t they understand?! It’s like I was just an animal that they can practice on or do their own private research. I’M HUMAN!!! So in January 2011 I asked Dr. Paul O’Conner about this procedure and he said "he wouldn’t do it" and "he wouldn’t have his family do it". He even looked at me and said "what do you even expect to get out of this, you look fine"
I thought are you kidding me, you’re an MS specialist and you actually just said that!?!? He wanted me back on my medicine asap! And when I asked him for any sort of advice he just held his mug in my face and it said “I don’t perform miracles" I never asked for a miracle, I asked for some expert medical advice, which was not given to me. It was scary trying to make this decision to actually go through with this "controversial treatment", I didn’t need him acting like this is just another day at work.
Anyways, in December 2010 Albany called to book my procedure. They booked me in for February 28th 2011, they wanted to book me in for January but I needed more time. It might sound weird but I just needed time to get my head around the idea that "YES I’m going to do this procedure" and "Yes I’m making the right decision".
Every other day I changed my mind. My friends and family would tell me "I support you in your decision" , which was Great!!! It helped so much! But now looking back I think I was reaching for someone to just tell me "Go For It".
On Sunday February 27th 2011, I drove down to Albany New York with my sister and best friend. We were supposed to take turns driving but I was so nervous I drove the entire way.
Monday morning, February 28th 2011, we all woke up and headed to the doctors where I would be receiving the angioplasty by Dr. Gary Siskin. I didn’t sleep a wink the night before my procedure, and on the way in the morning I was very quiet. So, first thing, I check in,, and wait. Then a nurse comes to get me and she gets me all set up, that’s when I started to cry. I cried the entire time, it was like once I started to cry, there was no stopping me.
I was awake for the procedure and yes still crying for no reason. I was talking with the doctor as he was doing it, it did not hurt at all. There was some pressure when they opened the balloon and I heard a swooshing and crunching sound in my ear. The entire procedure took about 45-50 minutes. I stopped crying about 10 minutes after ,,lol,, and I did not need stent placement :) Everything went great!
On Tuesday morning, the 1st of March 2011, I woke up early and was feeling amazing! I had my follow up at 9:30 am and everything still looked great! I was so relieved!!! All I do now is take an aspirin everyday for 6 months and in 3 months I go for another follow up. Dr. Gary Siskin is setting me up with an aftercare doctor close to home. I had the most amazing doctors and nurses!! They truly "help you get back on your feet". Anyone who has been there know where I got that from!
One thing I was not prepared for was the anger I felt on the way home. I was so happy and then to think about everything I had gone through with the doctors here and how they were so close minded, negative and just against the discussion of it, I was/AM so sad and angry!!
I still have some pain in my leg, chest and neck, but the pain I feel with regards to the unacceptance and rejection for this procedure far exceeds anything. Everyone has to make the decision for them self, but that’s just it. We HERE do not have that option. Once diagnosed with MS, we suddenly no longer have rights, we become 2nd class citizens without options. WE should at least have the option to have it done here. The doctors need to be educating themselves on this procedure because there is almost nothing worse than when you need answers to make one of the biggest decisions of your life, and all the doctors can do is shrug their shoulders, tell you to Google and figure it out, or even hold a mug in your face that says "I don’t perform miracles". IT HAPPENS!! It happened to me.
I feel great and the soreness in my neck and chest is almost gone, I have not had fatigue or any numbness and when I had a cold drink of coke I felt the cold go down my throat and into my chest!! I had never felt that before, it was amazing!! I drank almost half a 2L of COLD coke that night lol.
I can think a lot faster and I have better balance, I haven’t had a headache or that constant neck and back pain :) So far Amazing results that are NOT "placebo affect" I truly believe this is a HUGE discovery and something that CAN/ DOES help the quality of life for those of us with Multiple Sclerosis, and maybe even other diseases!!
Canada needs to open the door and just accept this finding instead of shutting it down! Give US the option if you don’t believe!! Stop denying us a chance to better our health, save our own life!! It’s not your life to make decisions about! Look at the numbers where over 15,000 people have had this procedure. All of the doctors doing this need to share their information, WAITING is not in the cards for those of us with MS!! Make the change NOW!!
We will take our rights back and when this is all PROVEN, I hope all of those that shut it down and turned a blind eye, just to make their kick back, I hope one day you look in the mirror and realize that so many people progressed while WAITING or even died while WAITING, and that your conscious eats away at you with guilt, because you too could have made a change but chose to WAIT, fill your pocket a bit deeper while those of us with MS suffer for your gain!!!
I WIN, I AM ONE OF THE LUCKY LIBERATI`S THAT BEAT YOUR SYSTEM! BEAT YOUR WAITING GAME! ALLOW US THE RIGHT, THE OPTION, THE FREEDOM TO MAKE OUR OWN CHOICE! HERE IN OUR OWN COUNTRY!!
Amanda
March 31 2011