What is Syringomyelia?
Again I like this site so I only share what makes sense to
me and fits things in our case.
Syringomyelia (sear-IN-go-my-EEL-ya) (SM) - Spinal fluid can build up
inside the spinal cord due to blockage from a Chiari mal-formation (CM), spinal
trauma, a tumor, or other causes. As the amount of spinal fluid increases, it
creates a cavity in the spinal cord called a syrinx or syringomye-lia (SM)
which results in stretching and, eventually, injury to nerve fibers.
Love this above, really breaks it down.
Oh I know, I’m dramatic! I had to keep you coming back for
more didn’t I?
So to recap: Kaylee has all of these symptoms for years and
finally they all seem to make sense once she is diagnosed with Ehlers Danlos
syndrome, which may be why she has a Chiari Malformation I (my thoughts using
my knowledge of it, not medically supported lol) which led to Syringomyelia. For instance, her soft voice, gentle
movements, apparently she learned at a young age how not to induce the
pressures that may cause the headaches. Things like before she would sneeze,
she would pause and let it out gently like a dainty sneeze (not ACHOOOO but ptoo).
Sneezes cause pressure to the head, go ahead sneeze, it’s true. There were
other things that if you message me I will say but she’d kill me for posting
haha!! So do coughing, constipation, jump roping, running all things that cause
pressure to the brain. She would avoid all of these things. That really bad flu
she had? It was not caused by anything above just what I believe to be divine
intervention. The doctors said that a bad flu or head injury can be what brings
out the symptoms and in this case it’s what started everything and made me put
it all together.
So we drive home from Long Island after a 13 hour day at the
Institute and we are broken. We pulled up in front of the house and Chris says,
“We are going to NYU”. I am not agreeing to anything they just said, just so we
are clear.” Agreed.
That’s when we went to see our doctor at NYU. I am not
bashing the doctors that we originally saw, I am grateful that they gave us the
information we needed and I felt very educated from the experience. However,
this doctor was simply a better fit for us and our beliefs from the start. He
was cocky, but we liked it. If someone is going to do brain surgery on your
child you want them to be cocky. After sharing our experiences at the
institute, let’s just say he had a different approach on things. Let’s start for
instance that at that time, in 2003, the Chiari Institute had performed more
than 300 decompression surgeries in the US. This was more than any other
hospital or doctor. Our doctor had done 2 per week and saw four patients a week
on average with Chiari/Syringomyelia. He also made it a point to say that he
didn’t do the decompression surgery on Chiari patients just because they had Chiari.
It was suggested if there were complications that were life threatening or
compromised their quality of life. A headache, no matter how bad, would not
have been a just cause for him to do the surgery, especially on an adult. He did not take this decision lightly, I liked
that. In Kaylee’s case the one syrinx was at C6 in her spine and the second larger
one was T5 to T9 with a skinny syrinx connecting the two.
Here’s a visual:
http://www.google.com/imgres?imgurl=http://www.align-your-spine.com/images/spine_layout.gif&imgrefurl=http://www.align-your-spine.com/chart.htm&h=887&w=900&sz=108&tbnid=qmmoBZgCGg6BYM:&tbnh=94&tbnw=95&zoom=1&usg=__nv-7JVPo5f7Svrk6jx2drDXvZhk=&docid=qvHueljjBJ8Z9M&sa=X&ei=VGkzUuqLI4W64APk44HACg&ved=0CF8Q9QEwEA&dur=1118
So look at every part of the spine. From C6-T9 there was
pressure, a lot of pressure because it was a bulging one in the Thoracic
region. So look at all of the parts of her body that had pressure on them and
were affected. That makes me sad.
There were different ways you could look at the Institute
performing all of those surgeries. They see more patients because people from
all over came to them with their name drawing a lot of people. They saw more
adults, I mean there are many reasons I am sure but I chose to see it as they
did surgery for the sake of doing it if it meant good research. According to
them Kay was the first four year old they saw with all of this. Was that true?
I can’t imagine why they would lie? But I do know if it were true, that would
make for some good research. Besides the
point that the people I knew and met on message boards that they operated on
still had no relief and some would say they were worse! Even one horror story would’ve
been enough to turn me away from putting my child under the knife for something
that no one had ever heard of before!! If not for Syringomyelia, that I knew
existed from Superman, we would not have done the surgery. I would’ve said don’t
jump; rest up and promoted yoga. I’m not sure if these doctors are still there (Unfortunately
it was another four year old years later that they made the news for). The doctors
were involved in a pretty bad lawsuit (this didn’t surprise us) but you can
Google that, I don’t need to say it. From what I hear, it is now run by an
awesome neurosurgeon and I would probably go for a visit just for research
purposes of course. I was actually going to go to this guy in Cleveland when he
was there. Again these were my opinions and experiences but there are so many
that say different. I feel terrible saying anything negative but I think it’s
important for me to proceed. Anyway…..
Anyway, this doctor at NYU agrees, she needs surgery (I keep saying this doctor because I respect
his privacy and who knows if he would appreciate my blog? But if you need him,
I will be glad to give you the info just PM me). This was not what we want to
hear and I just lose it. I let it all out right there, months building up. I’m
crying so much that I cannot breathe and I cannot see and I cannot think
straight. The doctor is trying to calm me down and Chris just looks numb but I
just start babbling and crying on how are we supposed to decide this? We are
taking her quality of life away? Because of headaches?? She will never have a
normal life again, oh I just went on and on…..I will never forget the next
moments because they were the best words I’ve ever heard. “Are you done?” I
was, and I was ready for it.
He says, “What the hell are you talking about?”
I explain what we were told about the surgery and all that
it entailed. He shook his head and said “2 ½-3cm in diameter, piece of skull
removed from C1 (just first notch of cervical spine) and he recommended a shunt
but he left that up to us (we did not go with a shunt) , out of the hospital in
less than a week and when he’s done with her she can sky dive if she chooses
(though he recommended no one does that for leisure lol). Go buy her a bike
with a helmet, put her on skates. Her risks will be the same as any other
child. No she will not be able to play
contact sports and a few other restrictions but compared to what it was going
to be WHERE DO WE SIGN!! It didn’t hurt that it was NYU and that it was 100%
covered by our insurance.
It was a snowy day and the sun had just gone down. He was talking to Chris (probably making fun of me) and I looked out the window. I love New York City in the winter. I saw this cardboard snowman that I also had in my living-room that my dear friend had bought me and I loved it. Just seeing it there in his office, which was cozy and warm with stuffed animals and pictures of his family (not sterile and white and cold like every other doctors office we went to), that moment felt like home. It was the first time that I saw this relief come over us. That we cracked a smile and sat more relaxed. That’s when we booked her surgery and went forward with NYU. We saw him in March, ten months after this whole ordeal had begun. He said that he would wait for her to get out of preschool so she could finish her year off. We had to promise to keep her away from any germ ridden kiddie parties, no trampolines, bikes or anything else. We had to treat her like she lived in a bubble in order to keep her fit for surgery. We promised and prepared for what was ahead.....
It was a snowy day and the sun had just gone down. He was talking to Chris (probably making fun of me) and I looked out the window. I love New York City in the winter. I saw this cardboard snowman that I also had in my living-room that my dear friend had bought me and I loved it. Just seeing it there in his office, which was cozy and warm with stuffed animals and pictures of his family (not sterile and white and cold like every other doctors office we went to), that moment felt like home. It was the first time that I saw this relief come over us. That we cracked a smile and sat more relaxed. That’s when we booked her surgery and went forward with NYU. We saw him in March, ten months after this whole ordeal had begun. He said that he would wait for her to get out of preschool so she could finish her year off. We had to promise to keep her away from any germ ridden kiddie parties, no trampolines, bikes or anything else. We had to treat her like she lived in a bubble in order to keep her fit for surgery. We promised and prepared for what was ahead.....
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