My Long Journey Part 2

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.  

My Long Journey Part 1

The night of May 6, 2015 is one I will never forget.  I was home alone, my mom was at a Relief Society meeting and my dad was in California on business.  After I had finished reading my scriptures I walked out to our family room to watch television.   I sat on the couch and noticed that my left leg felt like it had gone to sleep.  I thought that was weird but figured it would come out of it in a minute or two.  It didn’t.  The numbness started to get worse.  I tried to walk it out but noticed that it was getting a little hard to walk.  At this point I had the feeling that something was wrong.  I hobbled over to the kitchen and called my mom.  I explained what was happening and she told me to try and walk it out and that she would be home in twenty minutes.  I knew that I wouldn’t be able to “walk” it out.  My leg kept getting more and more numb by the minute.  I managed to get to my room where I laid on my bed and debated on what I should do.  I emailed my dad and told him to call me ASAP.  I figured he would see the email because he was always looking at his work email.  He didn’t call and I started getting more nervous.  I had the feeling that I would be going to the ER that night.  My phone battery was running low so I moved from my bed as best I could to my floor so I could plug my phone in to charge.  While I had it charging I called my dad’s cell and it went straight to voice mail.  At this point my leg was completely numb from my knee down and from my hip to my knee hurt like crazy.  Since I was alone in the house I felt like I could cry and scream out in pain because it hurt so badly.  I knew I wanted and needed a priesthood blessing so I decided to call my brother.  He picked up on the first ring and immediately knew something was wrong because I was crying.  I told him what was going on and that I wanted a blessing.  He told me he was walking out the door and would be there soon.  I figured he and my mom would arrive around the same time since my brother lives 15 minutes away.  After a few minutes I tried to see if I could move my leg so I could get up and be ready for when my brother came.  As I tried to move my leg I discovered that I couldn’t.  So I used my upper body to move myself into my bathroom where I would have something stable to grab onto to get into a standing position.  It was very difficult and when I tried to stand it was like I didn’t have a left leg and I started to collapse.  I somehow made it out of the bathroom and was holding onto the door handle of our linen closet in the hall when my mom came home.  About a minute later my brother came in and picked me up and took me out to one of our kitchen chairs.  He suggested that I be taken to the ER.   As my mom got things ready he gave me a blessing.  He had to carry me out to the car because my leg wouldn’t support me.  He then followed my mom and I to the ER at Ogden Regional Hospital where he stayed for two hours while I waited to hear what was wrong.  The doctor who was assigned to me took my medical history and then did an examination on me.  He thought that whatever was going on was because of my back problems.  He went and called the on-call Neurosurgeon who agreed and said that I should get in to see a neurosurgeon down at the University of Utah Hospital.  I spent two hours in the ER just to hear that.  We got home and my mom had to get my crutches to help me stay balanced and to help me walk since my leg was still numb and hurting.  After we finally got home (around midnight) my dad called to see what was going on, so I filled him in.

The pain was bad that night but I did manage to get at least five hours of sleep.  The next day I was still using crutches to get around.  We called down to the University of Utah hospital to see if I could get in to see a neurosurgeon but since they are a specialist I had to have a referral.  It was pretty frustrating.  My dad had emailed me different questions and things to look for in my leg, because there was the possibility I could have a blood clot.  Some of the things he told me to look for I felt like I had them.  So I went to see a regular doctor who didn’t think I had a clot but would order an ultrasound to make sure.  The ultrasound couldn’t be set up until the next day. 

On Friday, May 8, 2015 I went in for my six month check up with my Cardiologists.  My leg pain started to get really bad.  I somehow made it through my Echo (ultrasound on my heart) and by the time my Cardiologists came in to see me I was dying.  They could tell that something was wrong so they questioned me and told me that an ultrasound had been set up to rule out blood clots and that they would try and work with neurosurgery at the U.  I went and had the ultrasound which showed no clot and as I was heading back to Cardiology they called and told me to go to the ER at the U because that was the only way I could see a neurosurgeon.  I called my dad crying to tell him where my mom and I were headed.  He didn’t object and said that he was headed to the airport and would get in to Utah that afternoon.  My mom and I went to the ER at the U where I had doctors examine me and then went to consult with Cardiology about me having an MRI.  I asked for some pain medicine which I was given orally.  It didn’t do anything and I was really hurting.  I had gotten up to use the restroom and the nurses and the doctor over me could see that I was having a really hard time because of the pain.  The nurse came in to start an IV and give me pain meds that way.  She couldn’t get it, neither could the next person who tried.   Finally an EMT came in with an ultrasound machine and was able to get the IV in.  I was given some strong pain meds and they didn’t do anything but make me loopy.  One of the resident neurosurgeons came in right after I got more medicine and I had a hard time explaining what was going on because I was loopy.  I was told that they were still debating on whether or not I could have an MRI because of my pacemaker.  My dad finally showed up that afternoon and I was so happy to see him.  After another hour or so I was told that the MRI was out of the picture and I was taken back to have a CT scan of my lower spine.  I was able to move myself from the bed I was on to the table for the CT scan even though it was really painful.  The scan only took a couple of minutes and when I tried to move myself back onto the bed I couldn’t.  I was in so much pain that I just didn’t have the strength to move.  The techs in the room used a slide board to get me back onto the bed and I was taken back to my room in the ER.  Once I was back in my room I decided I couldn’t hold everything in any more, and I just started to cry. My parents let me cry and then after a few minutes my dad helped me calm down.  We waited another hour or two before the resident neurosurgeons came in to tell me that they couldn’t see anything wrong with my lower spine.  It did not show that I was tethered again and they didn’t know what was wrong.  After being in the ER for approximately seven hours, they gave me some prescriptions for a nerve medicine and pain medicine and then they discharged me.  I wasn’t very happy and was in so much pain.  Transferring from the bed to the wheelchair hurt so bad that I started crying again.

 

After getting home from the hospital I asked my dad if he would give me a blessing.  I was in a lot of pain and just wanted to be able to sleep.  I had taken some Loratab and was getting close to falling asleep when my dad came in to give me a blessing.  The blessing he gave me was very powerful and I could instantly feel my nerves calm down and I was able to sleep that night.  I slept most of the day the next day.  When I did get off the couch to go somewhere it would take me a very long time because I couldn’t get my left leg to move.  There were a couple of times where I would literally have to move it with my hands.  I didn’t understand what was wrong with me.