3. Symptoms Continue

After my doctors appointments (about 2 weeks after my first episode), I gradually felt back to normal for the most part.  I began tutoring and doing my physical therapy jobs again.  I was planning to finish my training at the hospital in their December training period.  

I got a call from Dr. Smith on December 5th.  He told me he had looked at my Cine MRI, and he could see that there were significant blockages in my spinal fluid.  This was no surprise, since it was clear I had the chiari malformation and it was a pretty big one.  He said that my cerebellum was pushed pretty tightly against one side of the skull.  This was  blocking fluid from flowing, so it was all rushing through the other side.  He said I was in no immediate danger, but I would most likely see more symptoms and need surgery, but it still wasn’t clear when would be the best time to get it.

Although this news was no cause for immediate concern, I felt very anxious.  Justin and I talked about it and felt like it would be a good idea to pursue surgery.  We really want to have kids soon, and we didn’t want to wait for another episode like the first one I had.  

The next day (Saturday) was a very busy day.  I went to the funeral for a beloved friend from Faribault, MN where I served my mission.  She was buried here in Utah so I was able to attend.  That night, Justin was in charge of putting on the ward Christmas party.  We spent all day after the funeral decorating the church, preparing food, and running errands.  We also had a friend from MN in town visiting us, so we were anxious for him to enjoy his trip.  It turned out to be a great, but busy day.  I had a great time helping with the party and we were looking forward to relaxing when it was over.  

We got home late after helping clean up, and decided to eat some pie and watch a movie.  I noticed that while everyone else seemed to be winding down, my thoughts were still racing and I felt a little agitated.  I didn’t think too much of it.  When Justin and I laid down to sleep, I found I was unable to shut my brain off.  I tried writing down my thoughts, using imagery, deep breathing, praying, reading, but nothing was working.  I was very stressed and worried.  After a while, I woke up Justin and told him I was having a hard time.  Trying to put what I was feeling into words distressed me further.  I began hyperventilating and couldn’t get my words out again (like during the first episode).  Justin tried to help me breathe deeply, but it was very difficult for me to.  I felt like I had no control over my body.  I was very frightened.  I didn’t realize I was having an episode, but luckily, he did.  Once he mentioned it I realized the back of my neck was hurting.  He had me lay flat on my back to avoid pressure on my neck.  We remembered I had one more muscle relaxant left, so I took that.  I was still hyperventilating and very stressed out.  Justin gave me a priesthood blessing.  The words were so beautiful and I clung to them.  After the blessing, my breathing slowed and I was able to finally sleep.   

The next morning I still had considerable pain in the back of my neck and the front of my head.  I was also experiencing a “pins and needles” sensation in my right hand, followed by my hands being very cold.  Justin called Dr. Smith to get his input.  He wasn’t there, but he talked to a nurse.  She spoke with another neurologist and he said if I’m ever having trouble breathing and can’t get it under control, I should be taken to the ER.  They also prescribed me some more medicine.  On Sunday afternoon we drove to Sandy to stay with my parents for the week.  This way our guest would be closer to Salt Lake to go sight seeing and my mom could be around to help while Justin needed to work.  I mostly slept the rest of the day.  

The next day I was in pain and experiencing some numbness in my hands, but i was still able to rest pretty well.  We assumed that, like last time, I would have just the one big episode, and then over the next few days I would feel better.  Everyone was gone for a little while during the afternoon and I stayed home to rest.     At around 4 pm I was feeling anxious and noticed I was experiencing racing thoughts.  My hands were shaking and my head was starting to hurt.  I realized this was another episode coming on, so I called Justin and my mom, who were both far away, so I asked my mom to call my mother-in-law, Pauline to come over and sit with me.  I took some medicine, put my symptoms in my phone so I could remember them later, and went to lay down with ice on my neck.  I noticed my breathing getting too shallow, so I focused solely on getting it under control.    Pauline arrived about 10 minutes later.  I was so relieved to have her there with me.  My dad also came home after a while.  As I continued my deep breathing, and the medicine kicked in, my symptoms gradually went away.

From this third episode I learned a few things:

• My episodes start with feelings of distress that I can’t control (Over the years I have struggled from time to time with feelings of depression and anxiety.  Through meeting with amazing therapists and examining my own research and experiences, I have learned techniques that help me overcome or at least deal with difficult emotions that come.  It has been very difficult for me to realize that during episodes related to my chiari malformation, these techniques don’t work.)
• If I recognize the distress early on, I can focus on my breathing before it gets out of control, and prevent symptoms from continuing.
• My episodes can come at unpredictable intervals (the first two were three weeks apart, while the second and third episodes were two days apart)
• During an episode, the pain in my head is different because it’s mainly in the back of my head, but spreads upward from there toward the middle and sides of my head. Sometimes it goes to the front of my head too.  

After this, I have always had someone home with me in case I have an episode.  The next few days were really difficult.  I was having a hard time eating and sleeping.  I am usually very affected by medicine that causes drowsiness, but there for a few days, I rarely felt tired even though I knew I needed sleep.  I wasn’t feeling hunger either.  I was experiencing lots of different symptoms and I never knew when they would come or how long they would last.  I think there were many times that an episode was starting, but I was able to catch it and prevent it from getting worse.  

Here is a list of all the symptoms I have experienced: (*note:  they don’t all come at once; during my first episode I experienced almost all of them)

• distress
• heightened emotions (it’s weird because I can recognize the emotions are irrational even in the moment, but they still seem real to me.)
• racing thoughts
• shaking hands and body
• difficulty breathing- hyperventilating
• numbness in hands
• blurry vision
• pain at the base of my head, and in the front
• not recognizing people
• confusion
• difficulty finding and remembering words (“word salad”)
• dizziness
• difficulty balancing
• nausea
• vomiting
• difficulty reading
• cold hands and feet
• motor coordination- texting is difficult at times
• difficulty sleeping
• surges of anxiety in stomach at random times even when I’m doing something relaxing
• flash headache (headaches that come when I’m sneezing, coughing, blowing nose, bending over, sitting down, or bearing down in anyway.  I call them flash headaches because they are really short, but intense.  They last for about 5-10 seconds.  I have had these since I was about 12, but never knew what they were!    We went to a few doctors back then to see what we could find out, but they didn’t discover anything.  Since they were so short, they didn’t really affect me and I kind of forgot about them.  When this all came up I wondered if they were related, and it seems they are.  I tend to get more flash headaches before an episode.)

Justin helped me figure out some new ways to do things to prevent those flash headaches (see last bullet point).  For example, when I’m laying down, rather than getting up by using my abs and neck, I roll onto my side and then push myself up with my arms.  For sitting down, I brace myself with my hands and then lower myself down. This has helped a lot.   

Resting and being careful has really helped me feel much better the past couple of days.  The plan now is to find a surgeon who we would feel comfortable with performing the surgery.  It is really important to find a doctor who is familiar with chiari malformations.  We have an appointment with a surgeon at the U of U hospital on December 23rd, so we are hoping he will be the right one.  Justin is looking into other options (around the country) as well in case this one doesn’t work out.  

I definitely took my health for granted before this experience!  A friend who deals with really difficult health struggles put it this way, “We sort of count on our bodies to do their usual things and when they shift it’s pretty disconcerting.”  

I am so grateful to my husband and family for their patience and kindness in giving me service.  I have had to depend on others for my very basic needs and this has been humbling.   I am grateful for the calls, texts, emails and well-wishes from family and friends!  I read the texts and emails often to rally my spirits.  I am grateful to my Heavenly Father for guiding me through this.  He has sent many blessings this past month and a half that have changed my life.  

I will continue posting updates especially concerning surgery dates and things.  Thank you everyone for your love and support!  I love you all!!!