September 11, 2014

Brain tumors, Cysts and the Diagnosis: Part 1 if my brain surgery story

I know of a lady who named her various brain tumors after her ex-husbands.  I wasn't quite as good natured as she to do that much (and I don't have any ex's) but I think it was to her credit that she did.

It's crazy hard to be told that you have a brain tumor.  So many of you already know parts of my story, but I am finally doing what I told myself I would do in those rough weeks of recovery: write about it so that another person, who may be caught in a scary diagnosis would have an idea of what happens.  And also to thank all of you.  My friends and church members doctors, and especially family, who supported me and helped me through it all.

At the time of my diagnosis, I was a content mother of 3, rolling along happily married to my best friend (still the case), trying to not go crazy having my hands so full.  All of our energies were going into raising kids who could grow up in a healthy 2 parent household that actually loves being together.  That has always been our goal.  Though not easy, neither me or my husband saw what was coming with the whole tumor thing.

People often ask how I knew that there was something wrong?  Headaches, dizziness, seeing things in my vision, and some crazy episodes with hormonal upheaval.  That was how I knew I need to seek help, but the cyst had been in my brain since childbirth.  Apparently they're common among tumors.

I don't mean any harshness here, 
but this guy must've fallen asleep during his MRI.  
Unfortuantely he has a Rathke's Cleft Cyst too.

I have a Rathke's Cleft Cyst, which basically are " benign cysts — fluid-filled growths — in the pituitary gland. They develop in the space between the front (anterior) and back (posterior) parts of the pituitary gland".  Thank you Hopkins' medicine site.  Much to my dismay, these cysts sometimes grow, usually very slowly, until it pushes on all the nerves (optic nerve, which controls what you see) pituitary gland (which is your 'master' control gland, telling all other glands what to do and when to release hormones, etc.) and brain surrounding it.  That's when you begin to notice something is wrong.  Pressure on a part of your brain just isn't good in any form.

I realized something was wrong during a visit to my dad's house for a family vacation.  I had a crazy migraine, and couldn't get it to ease up no matter what I tried, so I excused myself to go to bed early (NOT in my nature).  I went to lay down and felt REALLY sick.  I went to the bathroom thinking it would help, but knew I was passing out, so laid down on the cold granite tile instead.  Something was really wrong. I felt like my blood pressure was bottoming out.

I called for help and Dan, my dad and my step-mom (who happens to be a RN-Midwife) came a' runnin.  We couldn't figure out what was wrong.  I was pale, shaking, and still felt horrible, so my dad and hubby gave me a Priesthood blessing (like they gave in the Bible to heal people- see here for more info).  Within 5 minutes, I threw up and began to feel better.

While that was really scary (because I had no idea what was wrong with me) It happened every month for 3 months, almost always in tandem with Aunt Flo visiting.  I began to connect the 'episodes' with my hormones, and was later diagnosed with Vaso-Vagal Syncopy (which essentially means that combinations of things like dehydration, low salt, etc. make you pass out.  Throwing up gets your BP back up).

The headaches weren't easing up, and I also noticed that even though my baby had finished nursing more than a year before, I was still producing milk.  What in the world?  It was time to go to the doc.

The finding of my cyst was actually a bit of a miracle, because my doctor began by doing a hormone panel on my blood.  My prolactin (hormone that makes momma's lactate) was a little elevated.  He did some research and decided then and there that I should have an MRI.  What?  An MRI on my brain? That's the miracle, because most endocrinologists would have deemed my level as 'normal, slightly high' and done nothing about it.

I took my mom with me to get the MRI.  After an hour of knocking, tapping, and loud sounds in a tiny tube, I was done.  They printed films for me and told me to take them to my doc.

my 1st MRI

As my mom and I sat in the car that day, looking at the MRI films we both got quiet when we got to the  mid-brain.  We knew enough to recognize the white spot wasn't quite right.  Tears slid down our cheeks as we told each other not to get too worried yet, and that the Lord would help, no matter what.

Upon following up with my doctor, he referred me to an endocrinologist, who was the wackiest doctor I've ever met.  He could see we were nervous, so upon entering, he reached out and slapped my husbands knee while making a loud duck noise, like Donald Duck.  That was his greeting!  But he's really quite great. The visit was very thorough - he was so on the spot.  He guessed that my 'episodes' were vaso-vagal, that it was likely a cyst and not a malignant tumor, and that the side effects are permanent for some people.  He also explained that most aren't able to have more kids with this type of pituitary trouble (wow) and directed me to find a neurosurgeon specializing in pituitary tumors, and rathke's cleft cysts.

So I had a tumor. And it would need to be operated on.  Ok. That was a lot to take in.  Dan sometimes let a trace of worry cross his face, but he never faltered in his calm and assurance that things would work out.  I was not so certain.  It felt like dooms day.  My kids were my main concern, but I had all kinds of rational and irrational fears.  I knew that I wouldn't die, yet somehow I had to come to terms with my mortality.  That is an idea that took months to get used to.

As I was telling the news to my best childhood friend, she suggested that I get in contact with our dear friend Brooke, whose husband was a neurosurgeon intern at the University of Utah.  I did, and he looked over the MRI scans I sent in an email.  He got me an appointment right away to see his very busy and prestigious boss, who happens to be the best neurosurgeon in the Western US specializing in pituitary tumors. I can't help but think that was divine intervention (thank goodness for good people) helping me.

 Dr. Couldwell let us know gently that this wasn't a small band-aid situation, but that the surgery was 'minimally invasive' with a potential for side effects.  He asked if I wanted to have surgery.  I suppose I could've chosen the other option of likely blindness and worsening symptoms, but was quick to say yes.

After that we entered a whirlwind of preparation for the coming surgery and recovery.  We explained to our sweet kids in all the ways we could think of that Mommy was about to have her brain fixed, but of course they didn't get it.  The feeling that my body was going to pieces all too young plagued me.  My husband and I had only been married for 8 years, and we had 3 little kids.  This was no time to be falling apart.  I couldn't help but worry about how my little family would fare, especially if something went wrong in surgery.  I went between feelings of utter confidence and being prepared to feeling totally untethered in a wind storm.

I suppose the gravity of the situation set in when I was at my pre-op appointment.  After gathering all the blood samples (like 15) and information they could about my history, my wonderful nurse teared up and told me she wished that hard things didn't happen to good people like me.  But to my surprise she also reassured me and said God would help me through this.  Her kindness touched me and knowing she dealt with brain surgeries all the time, I was really moved that she felt for my family.

The day of surgery was there quickly and I found myself in a gown in a waiting room.  My husband was especially sweet and gentle, and my mom (who insisted on being there to help my Husband should any sticky decisions need to be made - and to support him) was encouraging and kind.  We said a prayer together, and I felt ready for it.  Until the attending physician came.  He had to read the risks of the surgery and then the anesthesiologist did too.  I tucked those possibilities aside, and they wheeled me away.

Read part 2 - the continuation of this post here (coming very soon)

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