I love my momma!

My parents left early this morning to drive back to California. Mom got here August 29 and my dad drove into town this last Sunday. He took the kids to a bagillion places these last few days and mom, of course, spent these last several weeks entertaining the kids and keeping our house running smoothly while I rested and recovered from brain surgery #6. Mom helped me make 18 freezer meals and snacks the other day. I just wish there was a way to replicate her laundry skills. I seriously have the best parents ever and am grateful that they get to go home to get some much-needed R&R time!

I'm so incredibly grateful for your continued prayers. When I say I've felt every. single. one. please understand that I'm not just saying that because it's the nice thing to say. I am VERY sincere in recognizing the strength and courage I've received because of your faith. #grandparentsareawesome#hydrocephalus #itsashuntlife #strengthcouragedetermination #faithheals

SHYMA

Truth. I was diagnosed at the start of my sophomore year at BYU and I know dozens and dozens of hydrocephalus friends who were diagnosed as a young or middle-aged adult. 

My symptoms: dizziness and taking really long naps. I didn't have headaches until I received my first shunt. Read my story HERE.

It IS Brain Surgery!

When I received the results for my very first MRI of my brain, the doctor at the BYU Health Center told me I'd just have to take a pill every day for the rest of my life. I remember thinking, "Meh, that's not that too bad!" And then I met with a neurosurgeon and he gave me a completely different treatment plan that required brain surgery. Another appt with another neurosurgeon also recommended brain surgery... immediately. urgently. post haste. My life has never been the same, since.

On another note, thank heavens they can do SOMEthing instead of letting my CSF kill me. I mean really. Hooray for modern technology!! I just wish it was a little bit better and more reliable...

Normal Pressure Hydrocephalus

Normal Pressure Hydrocephalus

This is a BIG deal. So many chronologically-enhanced individuals with Alzheimer's and dimentia actually have NPH. Learn the signs!


Normal Pressure #Hydrocephalus can look like Alzheimer's or dementia - but it is TREATABLE! #MakeWaves and spread the word! #HAM2016

Vision Improving After Shunt Revision

I'm wearing my contacts today! It's the first time since May!! My vision is finally improving after this summer's brain drama. Woohoo!!!

Hydrocephalus WALK 2016 - Salt Lake City, Utah

Fun at the WALK event last night!

Natalie Geis (kneeling) is a freaking ROCK STAR! Her husband is holding their awesome puppy.
Dr Jody Leavitt (far right) and Dr Jack Walker (on her right).
The other two are friends of Natalie supporting her in her hydrocephalus journey. 

Our cute family! The kids have processed these surgeries very well.
And Glen has been the best kind of husband even though it's been incredibly stressful. 

My fabulously wonderful neighbor, Sandy, is holding Michael as they watch the Life Flight helicopter land in the parking lot. This is the kind of fun that totally wows the kids and grown ups every year at the WALK!

My oldest, Sarah Jane, has been such a trooper and big ol' helper this year!
She's a wonderful blessing in our family!

Complications of Shunt Systems

I'll be giving and receiving hugs tonight at Murray Park at our WALK event! See you there!!

We have GOT to find a cure!!! A shunt is NOT a cure. Yes, it's better than nothing, but a shunt life is stressful and painful. 

An estimated 50% of shunts in the pediatric population fail within the first 2 years. 

Complications of Shunt Systems






THIS is so cool!!! I've watched YouTube videos of the ETV procedure (my last brain surgery in college), but these are actually my friend's ventricles! And just like Jamie, my ETV is still open but it's not enough to keep my CSF balanced well (not too much and not too little). Jamie has a shunt, too. Jamie Wright, thanks so much for sharing!!

That little crease on the right side is the opening into part of my lateral ventricle. The ventricles normally open up and stretch out as the CSF builds up (such as after having my shunt clamped for 6+ hours, as I did here). For whatever reason though my ventricles are stiff and do not enlarge significantly, even when under pressure. That fluffy stuff on the left side is choroid plexus, which produces CSF

Here they have taken the endoscope (camera) down into my third ventricle. You are looking at the floor of the third ventricle, which is where they will make the new opening for CSF to go through.

There are multiple (very small) tools you can use to make the opening in the floor of the third ventricle. He re they are enlarging the opening they made using a small balloon which they carefully pull through the opening to enlarge it. They do this to try to reduce the likelihood of the hole closing or scarring over. 

Here is an after picture showing the hole that was made in the bottom of my third ventricle. This allows CSF to flow from my lateral ventricle into my third ventricle and then directly out into the space around the brain where it is re-absorbed into the blood. This bypasses the cerebral aqueduct which is a common site of obstruction in the flow of CSF (and a common cause of hydrocephalus). In the video you could actually see pulsations as CSF flowed through the new opening. This is normally a good sign that it is working, so it is hard to say why mine ended up not working.

That red structure running along the bottom of the picture was one of my major sources of anxiety over having an ETV. It is the basilar artery which supplies blood to the brain stem. It is rare for it to be damaged during an ETV but you can see how close it is to the opening they made.

Here is another view of the inside of my ventricles. In the video I could tell they were flushing saline into my ventricles to open them up a bit. In the video you can see the ventricular space on the right open up and then collapse back down between flushes. In most cases the ventricles are relatively stretched out from the build up of CSF so that they stay open pretty well on their own.