Recovery

Justin and I have been staying at my parents' house for the last 3 and a half weeks.  They have been so wonderful and have helped with my every need.  Justin's parents live only 5 minutes from my parents' house, so they have been so amazing and helpful too.  How lucky are we, seriously?!  I'll try to sum up how my recovery has gone and answer a few questions people have asked me.

For the first few days, I slept on the couch in my parents' living room, so I didn't have to walk up any stairs.  Justin slept on the ground beside me, and helped me get up, roll over, etc.  I was still in pain the majority of the time, and many times he would have to help me lift up my head whenever I'd move because it hurt so bad.  It was a relief to be able to sleep through the night without nurses coming in for check-ups.  I was also so happy to have the IVs out- one left a really dark bruise up my arm that stuck around for a while.  

Our routine consisted of taking my many medications, putting ice on my forehead and neck, putting heat on my back to help loosen the muscles, and lots of neck massages with Icy Hot (thanks Mom, Justin and Dad!!!).  Eating got a lot easier, and I was able to sit up for meals without getting nauseous.  I also have range of motion exercises that I have been told to do 8 times a day.  Here's what I do:

1.  Turn head to the left and then to the right

2.  Look up and down

3.  Shrug shoulders up, roll them forward, and roll them back

4.  Raise arms up from the front, and then raise them from the back.  

I do each exercise for 5 seconds, and repeat it 5 times for one exercise session.  

The first few days, I could barely turn my head to the left and right, and do the arm raises.  It was so painful!  I would think, they're crazy!  How could this possibly be helping me?  But I had been assured that doing the exercises faithfully was key to my pain management, so I've done them consistently and seen great progress!  

I also slept a lot the first little while.  It was difficult to want to get up at all.  I started walking around the circle of the main floor from the kitchen, to the living room and back to the family room.  At first I needed someone to walk next to me, but then could do it on my own.  I eventually graduated to walking around the block outside!  

A week after the surgery, I got the staples out of the incision.  Hallelujah!  My neck felt so tight with them in.  I was really scared about getting them out.  I didn't see how they could do it without it being painful.  But when the nurse went to take them out, I was sitting there waiting and she said, "Okay, there's the first one... and the second one... etc." and I couldn't feel A THING!!  How awesome is that!  It didn't hurt at all except for a little pinch with the last one.  There were 18 staples total, and we kept them for fun.  Justin asked if he could keep the staple remover, since they throw it away each time, but they wouldn't let him.  Goof ball :)  The next two days, my neck was really tender, but it was a lot easier to put ice on it.  (Before, the staples themselves would get really cold from ice and be really painful!).  After the tenderness went away, it got a lot easier to do the range of motion exercises.  

Recovery has been discouraging at times.  As I've remembered my blessings and turned to Heavenly Father through prayer and reading the scriptures, I've been buoyed up with comfort and love.  I am so lucky to have my husband always by my side!  He is so wonderful and understanding.  My awesome parents and sisters, other family members and friends have brought me so much joy too!  

It has also been a great time to relax and spend time with my family.  I've watched my favorite movies and tv shows, read some great books, and enjoyed lots of time with my parents' dog Indy!  Pets are so therapeutic!  My awesome cousin Mandy Burton is a massage therapist, and she's been coming twice a week to give me massages.  I can tell you, that has been just great :)  It's done a lot to help loosen up my neck, shoulder and back muscles, which have been so tight.  Thanks Mandy!

Look at that little face!  He likes to snuggle and take naps with me.  

I have been getting better and stronger everyday!  I still rest a lot, but small improvements mean a lot in a process like this.  Now I can walk around the block 5 times unassisted, get up and lay down by myself, ride in the car without nausea, shower and dress independently, and move my head around almost at my full range of motion!  

A lot of people have asked how my incision on the back of my neck is doing.  It's about 4 inches long.  Half of it is above my hairline, so I have a cute little patch of shaved hair!  You can't tell at all if my hair is down.  The incision itself looks really good!  It's still a little swollen and red, but in time it will just be a white line.  I have to use baby shampoo for a while, since it's easier on the skin around it.  

Here's a picture of my incision.  Notice the movie in the background ;)  Love me some Pride and Prejudice!

We have a check-up appointment with Dr. Schmidt next Wednesday, the 25th.  He will look at the incision to make sure it's healing properly, and take a CT scan to make sure the surgery was successful and my brain has plenty of space.  I'll try to get a picture of it so I can post a before and after picture of my brain!

So that's what's going on here!  I'm doing really really well, and looking forward to getting back into my normal activities soon!  I love you all very much and thank you for the many prayers, thoughts and acts of service!  Thanks!!   I'll post an update after my appointment on Wednesday!

Hospital Memories

Hey everyone!  I'm alive and well!!!

I have so much to be grateful for.  It has been 4 weeks since my surgery!  It has been quite the journey.  I'm getting stronger everyday and on my way back to normal life. I'd like to share a few of my memories and insights during recovery, and try to answer a few questions I've been asked a lot.   This post will be about my hospital memories, and the next one will be about the next few weeks recovering at my parents' house.

Before Surgery (Friday, Jan. 23)

The morning of the surgery, I was amazed at how peaceful I felt.  We had to be at the hospital by 7 am (not 5:45 am like they originally said, thank goodness!!).  I know that I felt so much peace because I had a wonderful priesthood blessing the night before.  I could really feel the Holy Ghost with me, and throughout this whole 3 month experience I have often felt the presence of my loved ones who have died watching over me.

We got to the hospital and checked in.  I changed into my hospital gown and then waited in my hospital bed.  My parents, Justin and his parents and siblings, and my Aunt Nettie, Uncle James and my cousin Marky were there with me while I waited. We took some pictures (see Justin's last post) and chatted.   My twin sister Brooke couldn't be there with me, but she and I had a great talk on the phone right before I went into the operation room.

Nurses and anesthesiologists came in to put in IVs and answer any last minute questions.  Then I said good-bye to my family and they wheeled me to the operating room.  In the operating room, it was really cold, but they covered me up with blankets warm from a dryer, which I thought was such a nice, considerate thing!  Everyone was joking around and really nice.  They assured me that my head, eyes, etc. would all be protected during the surgery.  The last thing I remember is the anesthesiologist saying, "I'm about to start looking a lot more handsome," and then he put an oxygen mask over my nose and mouth and I gradually drifted off to sleep.

After Surgery

I don't remember anything after that until I woke up.  When I woke up it didn't feel like any time had passed.   I was laying on my back, and initially I didn't feel any pain.  I remember being in a different room and having lots of doctors and nurses around, and they started asking me questions, like if I knew where I was and what the date was.  I think I said, "It's January 23, it's my husband's birthday."  and then I must have talked about Justin a lot, because when he came in, they said "We know all about you!"  Justin said they knew what he does for work and lots of other stuff.  I don't remember saying any of that though haha.

After a while, my mom and Justin came in.  (Only two were allowed at a time because I was in the Neuro Critical Care Unit- like the ICU).  I was so happy to see them.  I asked my mom what my hair looked like and she said they had put it in a braid on top of my head


 They told me the surgery had gone really well, and that Dr. Schmidt had found that the pressure against my skull from the CM was so great that the part of my skull they removed was paper thin.  This indicated that the pressure had been very severe for a very long time.  Things were going great and I was feeling really good until about 10 minutes later.  I was hit with a wave a nausea.  My mom and Justin helped me sit up and grabbed a bowl so I could vomit.  This caused pressure and pain in my head that was incredibly intense.  I vaguely remember yelling and crying, making quite a ruckus. My mom put a cold rag on my forhead and gave me a light massage, which really helped.  I eventually calmed down and was probably given a lot of medicine for nausea and pain.  I'm glad that the memories of that are pretty vague.

When I was stable, I asked to see everyone else, so my dad, Paul and Pauline, Carlee, Lauren, Cameron (Justin's parent's and siblings), Maddie (my little sis, who came straight from classes), Nettie and James, Marky, Kelsey (aunt and cousins), and Jordan and Daniel (Justin's best friends) all came in one by one.  The day after, Justin's brother AJ visited, as well as my twin Brooke and her husband Grant, who had been on a much-deserved vacation!  I was so happy to see all of them.

After that I slept for a while.  I woke up to another wave of nausea, pain and vomiting like before.  I remember thinking, "This needs to stop right now" and feeling scared because it kept hurting.  Justin and my mother-in-law Pauline were there in the room with me.  They held my hands and said the right things to help me get through it and remember it wouldn't last forever. 

I don't remember much more of that night except still feeling crummy with nausea, but I don't think I had anymore vomiting.  I remember Dr Schmidt, my surgeon coming in to check on me.  He said all the nausea and pain I had experienced was normal and would probably continue for a while, but that I would eventually experience a lot of relief since my CM had been very severe.  Justin spent the night with me, and my family arrived early again the next morning.

Days 2, 3 and 4 (Saturday, Sunday and Monday)

The next morning some physical therapists came and helped me get up and walk to the toilet!  My legs felt really shaky, but it was good to be on my feet again.  I started becoming aware of the changes in my body.  My neck and shoulders were very stiff.   I was amazed at all the cords and things  that were taped all over my chest and back, and the IVs in both of my hands.  One cool thing is that after my surgery when I was still under anesthesia, they put catheters directly into my neck muscles on the sides of my incision.  A ball hung from it down my back that constantly injected pain medicine for the 3 days after my surgery.  It was annoying trying to keep it out of the way when laying down and things, but it helped keep a lot of nausea and pain at bay, for which I was very grateful!  They had these compression wraps around my legs so that I wouldn't develop blood clots.  All through the day and night they would squeeze my legs.  The first or second night, in my delirium, I thought it was one of my parents' dogs laying next to me breathing in and out.  Cute :)  haha.

Later on that day, they moved me into a normal hospital room in the Neuro-Acute Unit.  It was a larger room meant for recovery.  It became a little more difficult at this point as I was more and more conscious and aware of the pain.

Sitting up to eat made me very nauseous, and a lot of the time I didn't feel like eating.  Justin and my family members spoon fed me a lot (thanks guys!).  Anytime I needed to get up, roll over in bed, or move in any way, Justin or a nurse had to help me do every little thing very slowly and re-arrange all my cords and IV's.  I also felt like I was constantly getting shots- they tested my blood sugar every few hours, so all my fingers had little poke marks on them; they gave me lots of bruise-inducing shots in my stomach to prevent blood clots.  I know they were all necessary and I'm grateful for modern medicine, but it still hurt!  After the 2nd day, my hips started hurting a lot because I was always laying on my side.  Getting up to walk the halls caused a lot of pain in my neck and the front of my head.  I always just wanted to lay down with ice on the back of my neck and my forehead, because that brought the most relief.

So, yes, it was very hard and painful BUT...

It was also a beautiful time because of how close I felt to all of my caretakers.  Justin was an absolute wonder, never leaving my side, doing every little thing he could for me, not the least of which was always holding my hospital gown in place when I'd get up to keep me decent!!  Those things are the devil haha.  He was never annoyed when I'd wake him up multiple times during the night to help me go to the bathroom, turn over in my hospital bed, or ring for more pain medicine or ice.  One time when I was feeling really discouraged and in a lot of pain, he gave me a priesthood blessing.  My parents and family and Justin's amazing family were always nearby in the waiting room keeping vigil, even when I didn't feel like seeing anyone.  Just knowing they were there helped a lot.  The first time I saw my twin, Brooke, it was a joyful occasion!  There were lots of times her husband Grant watched their two little kids so she could spend time with me.  Her presence was so comforting.  I know that I am so blessed to have such an amazing support system.  Not everybody has that, and I am so grateful.

I also get really emotional when I think about the nurses that attended me.  There was one named Carolyn who was new on the floor, so she was being trained.  She was so kind and compassionate.  My mom and I loved her!  She kept checking in, and did a lot to get my medicine dosages right for my pain and to help me get my bowels moving.  She stayed an extra hour because she was in the middle of helping me with stuff, and I was so sad when she had to leave!  What an amazing lady!  There was another nurse named Garland, who was an awesome guy!  He was with us during the night, and he really took the time to be a friend to Justin and I.  He was really quick to help us with anything we needed.  There were so many others that I could name.

Although walking and getting up was tough, every time I did, I was happy because I knew it was progress.  A couple of times when I was walking around the halls, Dr. Schmidt would walk by and walk with me a few minutes to see how I was doing, and give me tips for being more comfortable.  He took the bandage over my incision off one time while I met him walking.  I worked a lot on keeping my shoulders down in their normal position, because it was (and still is) the natural tendency to hunch them up towards my neck to alleviate pain from the incision.

On the third day (Monday), we were all a little hesitant of whether or not I should go home, as I was still dealing with a lot of nausea and pain.  But we decided it would be best, since it would allow me to sleep through the night better and such.  It was wonderful as they took out each IV, cord and attachment!  I felt so free!  We timed it so that I would go home an hour after I took my dosages of pain medicine, so at 9 pm that night they loaded me into the car with pillows all around me and Justin drove me to my parents' house, where we would be staying for a while.

All in all, the whole hospital experience was an amazing, emotional experience where I learned a lot of profound lessons.  I know that my Heavenly Father was with me every step of the way, and that my Savior Jesus Christ knew every pain I felt.  I'll never be able to repay them for my life and the comfort and blessings they keep sending me!!  I'm so grateful to the U of U hospital and their doctors and nurses for all the hard work they do.  I'm thankful for my amazing husband, parents, sisters, mother and father-in law, and Justin's siblings, and my other family members and friends who were able to visit me.  Lots of friends brought food for my family while they were sitting in the waiting room, and sent beautiful flowers and cards to brighten my room.  All of the prayers and warm wishes did so much to lift our spirits!  Thank you all so much!  I hope you know that nothing went un-noticed.  I am filled with so much love and gratitude for everyone who helped me out in any small way!

Post Surgery

Brittany's surgery went very well! We arrived at the hospital yesterday (the 23rd) at around 7am and her surgery started at about 9:40am. They wheeled her out at around 3pm and we got to see her shortly after that.

Before we were allowed to see her, the neurosurgeon came to the waiting room and talked to us about how the procedure went. He said he was very pleased with how the surgery went and that they were able to accomplish all that they set out to do. He also explained that Brittany's Chiari was one of the most severe that he had ever seen. One part of the surgery involved widening the opening of the skull where the brain stem comes out (and where her brain was coming out) by removing some of the bone in that area. When he removed the bone in that area, he was surprised to see that the bone was very thin, paper thin in his words! He said that this was evidence that her brain had been exerting pressure on that area for a very long time, pressing it thinner and thinner. Because of this, he is convinced Brittany will notice a lot of relief from the new release of that pressure!

After surgery, she was brought to the NCCU (Neuro Critical Care Unit) where they woke her up. They kept a close eye on her, especially for the rest of that day. They checked in pretty often and did tests to make sure no unintended damage had been done. Luckily, even though she was still pretty groggy the rest of the evening, she passed every test with perfect scores.

One thing we were warned about when it comes to this surgery is that the recovery is very difficult. More so than most. Pain and nausea are big factors in this. She experienced a lot of nausea which caused her to vomit, which put pressure on the delicate areas that were worked on and caused a good amount of pain. Today, though, after receiving some medication that helped her sleep well through the night, we were happy to find that Brittany was feeling much less nausea.

It is now about 8:30pm on the 24th of January and we were finally able to get Brittany moved out of critical care and into Neuro Acute Care where she'll be for the rest of her time in the hospital.

She has just been sleeping most of the day today (boring right?) and we couldn't be happier! Surprisingly, they've had her on her feet walking to the toilet and even taking a very short walk down the hall today.

We have been amazed at the great blessings we've seen through this experience. We have no doubt that these have been a direct result of the MANY prayers and fasts that have been offered on our behalf. We have all (Brittany and the whole family) felt so much comfort and help from beyond the veil. Thank you for your thoughtfulness and love.

It's Go Time!

Hey everyone!

Tomorrow is the big day.  I will be at the U of U hospital at 7:30 am, and my surgery will begin at 9 am.  It will be 6 hours long, and then I'll stay in the hospital for 3-5 days.  How am I feeling?  Nervous, yet calm and excited.  Justin will be posting updates on Facebook and possibly on this blog as well.

I had my pre-op appointment today, and it went really well.  A nurse took blood samples and made sure my medical history and information was all accurate.  She answered all our questions and reassured us that all would be well tomorrow.  Tonight starting at midnight I can't eat anything until my surgery.  Up until 4 hours before, I can drink sips of water.  I am really lucky that my surgery is early in the day!

I want to express my gratitude to everyone who fasted and prayed for me this past Sunday.  I felt so much love and strength.  I know that Heavenly Father is watching out for me, and that angels will be with me.  I am so grateful for the calls, texts, messages of love and support.  I love you all so much.

The past week and a half has been kind of rough- my headaches have been pretty severe and I've been in bed a lot of the time.  I've dealt with some difficult anxiety too.  It's been really tough, but it helped me see the necessity for the surgery.  It's difficult not knowing how each day will play out- whether I'll feel good or not.  My husband has been so amazing in his care of me.  So has my family, ward, and friends.  I can't express enough times how much I love you all.

Britt :)

Surgery Date!

Hey guys!

It's been a while since I last posted.  Here's a little update on how things are going:

I'm feeling a lot better!  I still get headaches and pain/stiffness in my neck, but it has been very manageable.  If I put ice on wherever it hurts and take some ibuprofen, it subsides.  I still get the pins and needles sensation and numbness in my hand every once in a while, but other than that I haven't had any of those other crazy symptoms in a long time.  I attribute this to the thoughts and prayers of all my awesome family and friends!  I was so blessed to be in good health to enjoy the holiday season!  Here are a few pics:

 I have been enjoying lots of "baby therapy" with my nephew Lucca Clayson (left) and my niece Grace Lerdahl (right).

On December 22nd we got a call from a doctor from the neurological offices at Stanford (CA) who had looked at my images that Justin had sent him.  Justin's dad had a connection there and had helped us get in touch with him.  We were so surprised and grateful that the doctor himself called us!  He spent about 20 minutes on the phone with us answering our questions about the condition, treatment options, future pregnancies, and recovery if surgery is needed.  He asked all about my symptoms.  He said that from looking at my MRI, my cerebellar tonsils were about 17 mm below where it should be, which is pretty severe.  Most people with a Chiari Malformation have their tonsils at about 5-10 mm below where they should be.  He said that based on my symptoms, and how severe my CM is, he would highly recommend surgery.  He explained how he goes about surgeries like mine.  There are 3 specific things that he does, which I won't describe in detail right now, but basically he does everything he can to alleviate the pressure on the brain. He said he would be more than happy to perform the surgery for us, but encouraged us to find someone in Utah so we wouldn't need to travel.  We were relieved to hear this.  We told him about our appointment with Dr. Schmidt the next day.  He looked him up while we were still on the phone and he said that he looked like a great doctor.

On December 23, we met with neurosurgeon Dr. Richard Schmidt at the University of Utah hospital.  We were lucky that through my dad's connections we were able to get an appointment that quickly. (Thanks Dad!!!)  I was really nervous about the appointment.  But we prayed a lot that we would know if he was the right doctor.  Well we got a great feeling about this guy!  He really knows his stuff.  He performs lots and lots of Chiari surgeries, and has lots of patients come to him to fix the mistakes other surgeons have made.  So he knows what to look out for.

 He showed us my Cine MRI, which shows the flow of CSF (cerebrospinal fluid) in the brain.  We could see that, like Dr. Smith from Provo had said, the fluid was blocked from the back side of the brain and was all rushing through the front.  He also pointed out that my cerebellar tonsils were squished down really far (17-18 mm), calling my case one "in the big leagues."  We talked about my symptoms and the way the condition had been affecting my daily functioning.  He said that since it is a structural problem (the bottom of my skull is too small and the tonsils are squished in there), it needs a structural solution- surgery.  Medications for pain could help, but the problem would always be there.

He told us his specific surgery techniques, and they were EXACTLY what the doctor from Stanford had said!  It was very reassuring to hear two respected professionals who are experts in CMs have the same opinion on the surgery.  As we have researched, there are a lot of differing opinions on the specifics of the surgery among doctors in the country.

The surgery is called posterior fossa decompression.  Basically, they go in and remove part of the bone at the back of the skull and spine to relieve pressure on the brain stem and spinal cord and restore the normal flow of CSF.  They sew in a patch to expand the area and keep everything in place.  The procedure takes about 6 hours, and you stay in the hospital for 3-5 days.  Recovery is about a month long, and is quite painful because during the surgery they make an incision in the back of the neck to get to the skull.  While it's healing, the muscles hanging on it- back, neck, arms, cause a lot of pain.  It takes about a month for the pain to completely subside.  You manage the pain with medication, heat and ice, and particular neck stretches to regain full range of motion. 


Justin and I felt really good about Dr. Schmidt, so we scheduled a surgery date.  The first day they had available was..... January 23rd, none other than Justin's birthday!  Too bad there won't be a ton of celebrating going on, but hopefully we will always look back on that day as the beginning of the end of all this craziness. 

We are so relieved and grateful to have found this great doctor and to be moving forward.  I am nervous about the surgery.  Not so much the actual surgery, but the pain I'll wake up to.  But I know I'll be under the care of great doctors, nurses, and of course my husband and family.  And getting rid of the symptoms will be worth it!

I want to thank everyone who has reached out to me!  All of your kind comments and prayers have meant so much!  I am sorry I haven't responded to everyone personally, but please know of my gratitude.  I am also grateful for the people who have recommended doctors- we considered all of them very carefully.  I count myself very blessed to have such a great support system. 

We would like to invite anyone who is interested to join me and my family in a special fast on January 18, the Sunday before my surgery.  For anyone who isn't familiar with fasting, it's going without food and drink voluntarily for a period of time- usually 2 meals.  Fasting combined with prayer is a really powerful time to focus on your relationship with God and ask for certain blessings. I have had some really amazing experiences with it, myself, and I know it will help prepare me for the surgery. 

Thanks again everyone!  I love you all very much!

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 :(