Today also happens to be World MoyaMoya Day - I am happy to be able to shed some light on this rare disease on behalf of my family and my cousin's daughter as well.
In
January of 2013, I had a health scare. I had a TIA (mini stroke), I was
slurring my words and unable to answer John’s questions, so I spent about 5
days in the hospital having all sorts of tests. I was released from the
hospital and followed up with a neurologist in Memphis, but the doctors
couldn’t tell me much other than I had evidence of several mini strokes and
small veins in my brain. They told me then that as long as my blood pressure
stayed in control, everything should be fine. As you can expect, Memphis
doesn’t have the world class medical providers that we were used to, but God
protected me.
In
October of 2013, we moved back to Houston… and during that move, I had another
TIA. In my Dad’s driveway – I was totally disoriented and slurring my words. I
took some aspirin and continued on with the move. I didn’t take it seriously;
like I should have, but thankfully God was in control. After the first of the
year, I started a wellness group and we challenged each other to drink nothing
but water. Initially, I thought I was detoxing from caffeine… but it kept on
going and I had a migraine every single day of January 2014. I went in to see
my doctor, and then a neurologist.
The neurologist diagnosed me with MoyaMoya Disease in March, and the only treatment (there is no cure) is brain surgery. Thankfully we were back in Houston, and the Chief of Neurosurgery at Houston Methodist has lots of experience with MoyaMoya. It’s basically that my blood vessels are too small and it causes pressure to build up in my brain – so they needed to bypass those vessels in order for newer larger vessels to grow. I needed a bypass on both sides.
So I had my first brain surgery on May 1, 2014.
I recovered for 8 weeks from that one, and then had the second on July 8, 2014.
I’ve been extremely lucky, because this is usually diagnosed in children. My
cousin’s daughter is 12 and had surgery for the same thing a year and a half
before I did. God kept me from having a major stroke, and I’m forever grateful
for my relationship with Him because I’m not sure how I could have gotten
through all that we have without Him.
The neurologist diagnosed me with MoyaMoya Disease in March, and the only treatment (there is no cure) is brain surgery. Thankfully we were back in Houston, and the Chief of Neurosurgery at Houston Methodist has lots of experience with MoyaMoya. It’s basically that my blood vessels are too small and it causes pressure to build up in my brain – so they needed to bypass those vessels in order for newer larger vessels to grow. I needed a bypass on both sides.
in the ICU after surgery
day after surgery
second surgery scar
shaving my head
We
still struggle with getting over all of the issues that came along with being
out of sorts for basically the entirety of last summer. Tyler still has issues
with being left without one of us, as a lot of you have seen with his fear of
being in Sunday School without John. He still thinks every time someone comes
to see them that I’m going to leave and go to the hospital. I know that in time
things will settle down, and we’ll find out this summer how things are going
when I go back for a day surgery procedure where they will test my blood vessel
growth.
If you'd like to read more about my MoyaMoya Journey, click this link to all of my stories regarding my experience.
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