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!!!

2. Doctor Visits and MRIs

In the first few days following my ER visit, I was very tired, dizzy and nauseous.  I also felt a sharp pain in the back of my neck, and in the front of my head at times.  The muscle relaxants helped, but I didn’t like the way they made me dizzy and out of it.  I slept for long periods of time.  I struggled to wrap my mind around what had happened, and what it meant for the future; but at the same time I felt peace.  Our families visited and brought us food, and our sweet ward showered us meals and support.   My job at the hospital, my tutoring job, and my job doing physical therapy with a neighbor were all very understanding and said I should stay home as long as I needed to.  Justin worked on getting an appointment for an MRI.  We hoped to be able to do it in the next day or two, but it took about a week for our insurance company to approve the MRI.  This was frustrating, because I wanted to know a time frame of when I could go back to work.   

I gradually began feeling better.   After about a week I was up and walking around more.  It sort of got to the point where I felt like the whole ordeal was just a strange dream.  However I would have intense headaches and bouts of dizziness from time to time.

Research

During this time we learned all we could about Chiari Malformations.  Here is a good definition taken from http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115

Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.  Another helpful definition says:

Chiari Malformation Type 1 (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord).

This same source describes the symptoms:

Because Chiari involves the nervous system, symptoms can be numerous and varied. In fact, one large study showed that the vast majority of Chiari patients reported 5 or more symptoms, and 49 distinct symptoms were reported by 2 or more patients. Despite this variety, the most common Chiari symptom, and the hallmark of the disease, is a headache. Usually, the Chiari headache is described as an intense pressure in the back of the head and is brought on, or aggravated, by exercise, straining, coughing, sneezing, laughing, bending over, or similar activities….”

(http://www.conquerchiari.org/education/chiari-faqs.html)  

MRI #1

At length we were able to schedule an MRI.  It was an uneventful experience.  I did have to get an IV, but it was not as painful this time.  They didn’t tell us anything while we were there, but gave us a CD with the images that we could give to the neurosurgeon.  Here is a picture from the MRI:  

The picture on the left is a normal brain (courtesy of Google images), and the picture on the right is me!  In the red circle on the left you can see that the cerebellum has lots of comfy space around it, allowing plenty of room for spinal fluid to pass through.  In my image, you can see that the “cerebellar tonsil” is squished up against my spinal cord.  Looking at the image, we were pretty sure I had a CM (chiari malformation), so we were anxious to hear what the doctor had to say.  

We read that treatment options include medication if the symptoms aren’t severe, or surgery.  Justin and I were anxious to find the best option.  

We had a difficult time finding appointments that weren’t a month or two out with neurosurgeons.  I called the doctor the ER had recommended to us- a Doctor Smith in Provo and was told that “most of the doctors in the office were booked 3 months out” and that she couldn’t tell me any dates at all until the MRI place faxed over our images and the ER sent a referral saying we needed to meet with them.  I felt like she didn’t want me to make an appointment at all for some reason.  I couldn’t figure out why.  Must have been a rough day or something. We called the ER to have them send a referral and they were really confused as to what the doctor’s office meant by a “referral” that needed to be sent.  The MRI people wouldn’t fax over the images until the doctor’s office requested them, and the doctor’s office wouldn’t send a request.  Finally Justin gathered up all the paperwork we had from the ER along with copies of the CDs from the MRI, went over to the neurosurgeon’s office and firmly told them, “Here is the ‘referral’ and our images you asked for, and please make a note for the doctor that my wife is in pain and we need to see someone as soon as possible.” (Go Justin!)  

Doctor’s Appointment #1

We didn’t expect that particular office to be very helpful so we looked elsewhere and got an appointment with a doctor in Payson.  They were very pleasant to work with.  Justin and my mom accompanied me to the appointment.  

Doctor Farley had looked at my MRI and confirmed that I did in fact have a Chiari Malformation.  He asked us all about my symptoms.  He was very interested to hear that my mom suffers from migraines, since a lot of my symptoms were similar to those of a migraine.  He believed that the whole first episode was a migraine, but we found out about the CM as a result of it.  He also said that since I wasn’t having symptoms frequently, he would hesitate to do surgery right now.  He recommended I get another more detailed MRI and wait 6 weeks to see if more symptoms showed up.  

He also told me that if I never have more symptoms and don’t get surgery, there could be some problems with childbirth.  I perked up right away, since Justin and I want to have children soon.  Because of the complications CMs cause with cerebrospinal fluid, having an epidural is not a good idea.  But the intense pushing involved with delivery can also be problematic, since any motion of bearing down can bring on an intense headache and other symptoms.  It seemed like I either would need to have the surgery or do a c-section when the time came to have children.   Not the end of the world, but I would rather have the option to choose if possible.

For some reason his whole explanation didn’t sit well with Justin and I.  I understand the need to be conservative with surgery and not jump right in. But the symptoms seemed more severe than just a simple migraine.  We also didn’t like the idea of waiting around for symptoms to show up again.  I was worried about driving, working, babysitting, and doing many other things knowing that an attack like that could happen again at any time.  He made the symptoms sound like they were no big deal, and I’m sure he had definitely seen worse, but for me they were very painful, frightening and disturbing.  We wanted more information and solutions because we feel very anxious to start having children, and I wanted to get this figured out before continuing to attempt becoming pregnant.  I thought- What if I get pregnant, and then all of a sudden symptoms flare up again and I really need surgery?  It’s probably difficult/dangerous to have a surgery when pregnant.  

After this visit, I started keeping notes of my symptoms in my phone.  

Luckily for us, the first doctor’s office called back an hour after we got home from this first doctor visit.  Their schedule had magically cleared up and they had an appointment for me the next week ☺ We were grateful for an opportunity to get a second opinion.

MRI #2

We quickly scheduled the other MRI Dr. Farley had ordered so we could bring it with us to visit Dr. Smith.  This particular MRI is called a Cine MRI scan.  It’s like a normal MRI, but it images more specifically the flow of CSF (cerebrospinal fluid).  It is helpful in determining how much the CM is blocking the back-and-forth flow of the CSF between the brain and the spine.  (http://www.mayfieldchiaricenter.com/chiari_diagnosis.php) If there is significant blockage of the CSF, it can be problematic.  

Doctor’s Appointment #2

We met with neurosurgeon Dr. Smith in Provo.  He was very kind and showed a lot of concern for my situation.  He had recently finished his schooling, and we felt this was great, because he was still in the learning mode.  He researched our questions and took a lot of time talking to us about what he knew.  From looking at both of the MRIs he also said I definitely had the Chiari Malformation, and it was most likely causing some kind of fluid blockage.  He also felt that surgery wasn’t necessary right away.  He said that he would look more closely at the MRI and call us with his findings.

We appreciated his candor and helpful attitude a lot.  However, he had never performed the actual surgery associated with a CM.  We all felt he was a better option than the first doctor, but wanted to find someone who knew more about the condition and had performed the surgery many times.  

At this point, we decided our plan should be to find someone we would feel comfortable with performing the surgery (should the need occur) who could give us more information about the implications of the condition and how it would affect aspects of my life such as work and childbirth.  

In the next post I’ll talk about how my symptoms have returned :(

1. First Episode and ER Visit

Hello all of my dear family and friends!  

As some of you know, I have been struggling with some health challenges this past little bit.  I am so grateful for the support and love that has been given to my family and I during this time.  In order to keep people informed on my progress, we thought a blog would be a good idea.  

During this trial in my life, I have reflected a lot, and I have found myself wanting to reach out to others for their support.  There are so many people who mean a lot to me, and I want you all to know that you are a part of my life.

To quickly summarize, I have found out that I have a Chiari Malformation in my brain.  (Chiari is pronounced Kee-ARE-ee)  This is not life threatening, but it is a serious condition that can have difficult symptoms.  My symptoms have been quite severe, and we are trying to find the right surgeon to perform an operation that will correct the condition.  

It all started on November 14, 2014.  It was a Friday evening, and I had just completed my second week of training to be a psychiatric technician at the Utah State Hospital.  It was a busy day, but I was enjoying my work and looking forward to an evening of Christmas shopping and working on a few other projects around the house.  Justin (my beloved husband of 2 ½ years) was working late in Draper.  

As I was walking around my apartment, I noticed a bright spot in my vision like a lingering camera flash.  It didn’t go away but seemed to grow larger.  Then I saw some squiggly lines in the left side of my vision.  I had had a migraine in high school, and this was how it had started.  I expected a severe headache to follow that would be manageable with medicine.  I called my mom, who has migraines.  She arranged to give some medicine to Justin before he left Draper.  I started to have a hard time walking and balancing.  My dad called me and we had a pretty normal conversation as I lay down with a frozen water bottle under my neck to help with the stiffness.  After I hung up with him, my neck started feeling a lot stiffer and my head began hurting.  I began to feel very worried and sad, even though I kept telling myself it was nothing to be afraid of.  My sister Maddie was up in Sandy, but had her roommate in Provo bring some excedrin over to stem the pain.  I took the medicine and lay down.  Maddie told me that I was fine, so I tried to calm down.

I called Justin for some reassurance.   I started feeling more and more distress.  I continued feeling very sad and anxious  (I have come to realize that this intense anxiety and distress is one of the first signs of an episode.)  I tried to tell him how I was feeling, and it was hard to get my words out.  He calmly explained that he thought I was experiencing the same trouble my mom has with migraines when her words get jumbled.  At this point we still thought it was a migraine.   He was so kind and comforting and told me he was now driving on his way to me, but was stuck in a big traffic jam.  The big game changer was that as I was talking to him, my right hand and left hand started alternating going numb.  I described it to him as it was happening, and felt very afraid.  He told me that I needed to focus on my breathing, and I hadn’t even realized it, but I was hyperventilating.  It was extremely hard to breathe slowly.  Justin again told me that I needed to see a doctor. He was lovingly and firmly insisted, and sent our neighbor over to pick me up so we could meet him at the Instacare.  

When my friend from the ward came in, I was scared to realize that I did not recognize her face.  She is a dear, close friend, so this was very disturbing to me.  On the way to the Instacare, Justin called and said to meet him at the ER instead (he told the nurse at the Instacare my symptoms and she said we needed to go to the ER immediately).  When we got to the parking lot, Justin came up to our car.  I knew it was him, but again, I didn’t recognize his face at all.  Despite this, I was comforted by his presence and knew it would be alright.  

From here, it’s kind of a blur.  I remember being put in a wheelchair, having my vitals taken (which I had been practicing with patients at the hospital that day at work as a psych tech), and being put in a hospital room with a bed.  The nurse and Justin tried to help me lay back but this caused extreme pain in the back of my neck.  Instead I sat forward with my head in my hands.   It appeared that the focal point of my pain was the back of my neck.  I vomited multiple times which seemed to calm some of the nausea I was feeling.  The nurse put an IV in my arm, which caused extreme pain.  Normally I try to hold back screaming or crying with shots out of respect for those around me (and normally it doesn’t hurt that bad), but any energy to filter my emotions was completely spent and I screamed and begged them to take it out.  They told me it would help me relax and that that way they wouldn’t have to give me multiple shots.  Eventually it did relax me and I was able to lay on my side.  

A doctor came in and tried to get me to do a lot of tasks to test my motor control and see if it looked like I had had a stroke or tumor.  He touched both sides of my face and asked if I felt the touch equally on both sides.  He had me raise my eyebrows, grip his hands, push against his hands and lots of other things.  I was having a really hard time understanding what he said, and speaking back to him.  

I was wheeled to another room to do a CT scan.  I don’t remember much about it.   After the scan, I slept for what must have been a long time.  I remember the doctor coming in to talk to us.  He would ask me questions about things, and I would always say “Whatever Justin wants.”  I was barely coherent and still in pain, so I knew Justin should make the decisions for me.  I vaguely remember the doctor saying that from looking at the scan, they did find something.  They believed I had a Chiari Malformation.  He had never heard of it before, and said he would see what he could find out about it.  Justin probably asked him a lot of questions.   I was shocked that they had actually found something, but very relieved that there was a visible reason for what was happening to me.  By this time I had received medication from the IV that helped relieve some of the pain and I calmed down considerably.  My parents arrived and I was happy to see that I could recognize their faces.  The doctor came in and gave us some more information about Chiari Malformations.  

After this, the plan was for me to be discharged from the ER with an order for an MRI, and the name of a neurosurgeon we should see.  I was given a prescription for muscle relaxants to help me in the meantime.

Justin and my dad brought me home and my mom picked up my prescription for the muscle relaxants.  It was about midnight by this time so I went right to sleep when I got home.

This was a frightening experience, but through it all I did feel moments of peace.   I remember praying a lot during the whole thing and feeling like Heavenly Father was watching over me.  I was so grateful to my family, friends, the doctor and nurses for helping me through everything.   

In my next post I’ll talk about the weeks after this first episode and the doctor visits we had.