The week following my initial problems was a rough one. I couldn’t work because it was really hard
for me to walk and I was still in a lot of pain. Trying to sleep at night was getting
ridiculous. I could only lay down on my
bed for about thirty minutes before my leg just started hurting like crazy and would
go numb. I would get up and try to walk
around but because my foot was numb I would just trip over it. It didn’t take me long to discover that I
could sleep more if I sat in our recliner and had my legs at a ninety degree
angle. I didn’t sleep great sitting in a
chair but better and longer than if I were laying on my bed. I would start out in my bed then get up when
I started to hurt and walk to our living room and sit in the recliner and try
to fall asleep. This went on all week
and it made it very long. Mornings
became my best friend.
On May 17, 2015 my family held a special fast in my behalf
and then my dad and brother gave me a priesthood blessing. One I will never forget. That night I was able to sleep all night in
my bed. I went to work the next morning
which was hard on me and I came home very sore and in pain.
During the week we received a phone call from neurosurgery
at the University of Utah hospital telling us that I was being referred to a neurosurgeon
who worked at Primary Children’s Hospital but came up to the U once a month to
see adult patients in what is known as the Spina Bifida Clinic. An appointment was set up for me to see this
new neurosurgeon on June 30, 2015, seven weeks away. It was frustrating that my appointment was so
far away but at least maybe he would be able to help me figure out what was
wrong with me.
The Friday before I ended up in the emergency room I had
received an email notifying me that I had been accepted as a volunteer for Camp
Hawkins (a camp for kids with congenital heart disease and their
siblings). I was so excited and felt
that this was something I needed to do.
Despite the pain in my leg I worked on getting my endurance up so that I
could go to camp. My parents could see
the pain I was in and weren’t sure if I would be able to do camp, but because I
am stubborn I said I was going despite the pain. I knew that I was supposed to
be at that camp and that Heavenly Father would bless me. My pain had actually
gotten a lot better up until the day before I left.
Camp Hawkins was amazing.
It was fun working with all the other volunteers and interacting with
the kids. I was a day camp counselor the
first day, and in-charge of the little kids.
They were so fun and I had a good time with them. I loved being at this camp because I felt
like I belonged. I met another volunteer
there who also has congenital heart defects and it was great to be able to talk
with her and find out that we have had the same doctors and some other things
in common. I was still in pain with my
leg but I know that Heavenly Father was blessing me while I was there. I can’t say enough about this camp. It’s a camp that is near to my heart and I
hope to one day go back and volunteer again.
The week after camp I finally met my new neurosurgeon. I was really impressed with him. He listened to me and although he didn’t
think my problems had anything to do with my spinal cord he still set up tests
for me to do. I was sent to see a
neurologist at the U to have an EMG test done.
This test is where the nerves are tested to see if there are any
abnormalities with them. It was a pretty
painful test because a needle was inserted into different areas of my leg. The test didn’t show anything wrong with
me. No surprise there. Both my neurosurgeon and neurologist ordered
a MRI to see if that showed any abnormalities with my spine. Since I have a pacemaker the only place that
will allow me to have a MRI is primary children’s hospital. Unfortunately they are always booked so it
takes weeks to get an appointment. One
was set up for a month later, August 3, 2015.
The day of my MRI finally came. My mom and I went down to Primary Children’s
and I found out as I was getting checked in that the MRI involved contrast
which meant I would have to have an IV.
Everyone has a really hard time getting an IV in me because my veins are
tiny and they hide. It took the IV team
a couple of tries and they finally got the IV in with the help of an ultrasound
machine. Once I was all set my pacemaker
tech who has worked on me for years came and turned off my pacemaker and then I
was taken back for the MRI. This was the
first MRI where I was able to watch a movie to help the time pass which turned
out to be a good thing because it was a long MRI. My
neurosurgeon called the next day to tell us that he didn’t see anything wrong
with my spinal cord. It didn’t look like
I was tethered but I did have a lot of scar tissue around my spinal cord. This wasn’t a surprise because I’ve had two
previous spinal cord surgeries so there was bound to be scar tissue.
I didn’t feel like my neurosurgeon was right, I knew
something was wrong with me. I started
doing my own research. I prayed about
the things I had found and about what my body was telling me. I strongly felt like I was tethered. My mom also felt that I was tethered and had
felt that way since my MRI. The last
week of August my mom and I went to the Bountiful LDS temple to do some temple
work. Since I was in so much pain we
decided to do initiatory ordinances and then afterward go up to the Celestial
Room. When we got into the Celestial
Room we were the only ones in there for about ten or more minutes, which doesn’t
happen. While sitting in the Celestial
Room I prayed once again to my Heavenly Father about the things I was
feeling. I got an answer that confirmed
what I was feeling. I was grateful to
have gone to the temple that day.
Since I knew the neurologist wouldn’t get the MRI results
for a little bit I decided to try a nerve medicine called gabapentin that was
recommended. It’s a medicine that takes
around six weeks to build up in your system before you can tell for sure if it
is working. The hope was that it would
take away the pain in my leg. I was
prescribed 300 mg three times a day.
Taking 900 mg of this medicine everyday got old after a while. It made me so tired. I would end up sleeping most of the day and I
hated it. When I went back to see my
neurologist in September he upped my dose to 1800 mg per day. I never made it there. After taking between 900-1200 mg a day I
decided I couldn’t do it anymore and started getting off this medicine. It took about two to three weeks to finally
get off the medicine completely.
September was a really difficult month for me. At the beginning of the month I found out
that one of my childhood best friends passed away from cancer. It was hard on me because she had always
accepted me for who I was. She didn’t
judge me and showed so much love towards me.
She didn’t care that I had health problems and I really appreciated
that. My heart ached for her family and
for her little daughter she left behind.
I love my best friend and have felt her near as I have struggled with my
health. On top of this I was in a lot of
pain. I had a lot of pain not only in my
leg but also in my neck and head. It got
to the point where I couldn’t really move my neck and my headaches turned into
a migraine. I tried everything I could
think of to get the pain to go away. I
finally went in to a doctor who prescribed me some muscle relaxants. Those helped a little bit. Towards the end of the month I got really
depressed and hit a low point in my life.
I didn’t want to live anymore. I
wanted to die and finally be pain free.
This feeling lasted for days. I
didn’t know how to keep going. I didn’t
have the strength to go through another day.
One night as I was feeling this way I prayed for comfort and I felt the
presence of my great grandparents who are on the other side of the veil come
and comfort me. With that comfort I was
able to pray to my Heavenly Father for strength to make it through another
day. I was blessed with that strength
and continued to pray for it each day and received it.
Around the end of September, the beginning of October I
started to get two small pressure sores on the side of my left foot. This isn’t normal. It meant that more pressure was being put on
the side of my foot. When these
developed I really felt like I had a tethered spinal cord again because of what
happened when I was nine years old. When
I was nine I started to walk on the side of my right foot. As I did a pressure sore developed on the
side of my foot. We discovered a little
too late that my spinal cord was tethered.
Since I didn’t think that the neurosurgeon I had seen would listen to me
I started to try and find a different neurosurgeon at the U and also started
looking at different hospitals around the country but didn’t have a lot of luck. One day towards the end of October I felt
prompted to email my neurosurgeon and let him know what was happening. I emailed him but figured that he would just
ignore me. But to my surprise his office
called me that afternoon and set up an appointment to see him in clinic the
following week. I started to think that
maybe he would listen to me. The day of
my appointment came and I again explained everything that was going on with my
foot as well as some other symptoms that are common with a tethered spinal
cord. He went over the MRI with my
parents and me and again told us that there was a lot of scar tissue that had
built up. He explained that when
symptoms for a tethered spinal cord appear the person usually starts to decline
fast. I felt like I was, things just seemed
to be getting worse all the time. He
finally thought that it might be worth doing surgery on my spinal cord. There was no guarantee that the pain would go
away but I felt like it would. My
surgery was set up for a couple weeks later.
It was a long two weeks and I could feel my health continue to decline. I
was living on pain killers almost around the clock because the pain was so bad
in my leg and back.
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