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.

Roald Dahl and the Curious Shunt

Roald Dahl and the Curious Shunt

In other news... There's a plus side to everything. A silver lining in every bad situation. A hopeful side of a negative experience. The beauty of something that seems gloomy on the outside. So thank you Tracie Charles Wilton for helping me realize that #BrainSurgeryMeansSomeoneElseDoesLaundry
#MyMomIsAwesome

HAM 2016

And THIS is why I'm WALKing to end hydrocephalus. Our fundraising efforts helped create the antimicrobial shunt catheter draining excess CSF from my head to my peritoneal cavity. It's not a cure, but it's keeping me alive! We can do this!!!


This is fabulous!! Vicki Bell and I started the WALK events in Utah in 2007 (it was called TEAM then) to bring awareness of hydrocephalus to our community and to help raise money to fund the education, advocacy, and research efforts of the Hydrocephalus Association. And in 2010 SarahAnn Sowby Whitbeck came on board and has carried on the WALK tradition ever since! I remember the crazy stress in the days leading up to the WALK. And she even fit a TV spot into her schedule. SarahAnn, you're awesome!!!


Hydrocephalus Awareness WALK to Kick Off in Murray

Roald Dahl

This man is more than a beloved author. He helped revolutionize the neurosurgical industry with a better shunt system and gave life to countless thousands in the hydrocephalus world. #HAM2016

Roald Dahl on the death of his daughter

"Free" headaches

My mom told me after my surgery in June that I'd never have a "free" headache.

After almost 13 years of my hydrocephalus being a non-issue ("There's no way this headache is caused by hydrocephalus. No way!" said Kelly Thursday, May 12, 2016.), I stopped wondering if my nausea, dizziness, blurry vision, double vision, headaches, and/or vomiting were caused by too much spinal fluid in my head. Now, 13 days post op, I can't have even a moment of nausea, dizziness, blurry vision, double vision, headaches and/or vomiting without thinking it might lead to another brain surgery or two.

I'm not trying to be all "woe is me" on you, my friends. I just want to paint a picture that the parents of every one to two in every 1000 babies who are born with hydrocephalus will have to wonder Every. Single. Day. when/if their child ever struggles with these symptoms. Can you imagine? "Why is my six month old so fussy? Are they teething or do they need brain surgery?" And that doesn't include the individuals and families of those of us who were not diagnosed when we were in the womb. The older patients can at least practice body awareness and explain their symptoms more carefully, but really?! 

Living with hydrocephalus sucks. 

HAM Day 12

Hydrocephalus Awareness Month

FACT - Hydrocephalus is a life changing, life threatening condition.

FACT - Anyone, at any age, can develop hydrocephalus. I was 20 when I was diagnosed with aqueductal stenosis, or an obstruction between the third and fourth ventricles of my brain causing a build up of spinal fluid, or hydrocephalus, in my brain.

FACT - Hydrocephalus can mean a lifetime of brain surgeries. Dozens are common, more than 100 for a single patient is not unheard of. I've only had SIX, two of those happened just this summer.

FACT - Accurately diagnosing adult hydrocephalus would save Medicare in excess of $184M over five years.

FACT - Last year the U.S. government spent $6.2 million on hydrocephalus research (contrasted with government expenditure of $100 million for autism and $200 million for Parkinson’s disease – although all three issues affect approximately the same number of Americans.

FACT - WE NEED A CURE, WE NEED TO CHANGE THESE NUMBERS! Please join us as we WALK for a CURE!

Kelly's Curesaders

Protect your noggins!

Recovery Day 10 & a PSA...

Good news: My shunt is working FABulously well. I haven't had a too much or too little CSF headache since I woke up from surgery! The world may now rejoice! This is really exciting, friends. I've had one of those headaches almost every single day since April 24. That's a looooong time to have a headache!

More good news: My stitches and their accompanying pain are GONE because my fabulously wonderful friend loves me and responded to my frantic text asking her to take them out super late Thursday night. Our goal was to keep them in for 10 days because the incision on top of my head wasn't happy about being opened twice in as many months. But the pain from those wire stitches became unbearable and I was ready to go to the ER for relief. So THANK YOU Holli for saving me an expensive ER visit and from another sleepless night wallowing in pain.

Even MORE good news: I'm finally able to sleep! With the stitches out, the stinging and throbbing incision pain is gone! I slept a TON yesterday and today is looking to follow the same eat, read, sleep, sleep, eat, chat, sleep pattern. The only pain I seem to have now is just bone pain where they widened the burr hole in my skull to replace the ventricular catheter and that will go away soon. Hooray! I'm almost semi-normal again.

And here's my PSA: I've heard our neurosurgeons refer to April through October as #StupidSeason. It's when otherwise smart people make stupid choices like not wearing their helmets while riding their donorcycles *I mean motorcycles* or ATVs or bikes or whatever. People of the earth: Protect your noggins and don't lump yourselves in with people making stupid choices and causing unnecessary and easily preventable drama in #StupidSeason. Glen and I had a lovely chat Wednesday afternoon with a kid on his motorcycle while waiting at the on-ramp light at NB Bangerter and I-15. His helmet was strapped to the back of his seat. Glen rolled down his window and we pled with him to put on his helmet. His excuse for not wearing it: "I'm running late. I'll put it on when I head back home." I told him about the guy next to me on the post-op recovery floor who crashed his motorcycle and was writhing in post-op pain until they gave him a spinal nerve block and even then he was whimpering from the headache. I wonder what that guy's excuse was for not wearing his helmet.

#HAM2016

A matter of faith...

I've always been taught that faith is a verb, a word that describes the action of believing in that which is not seen but is real. So when I say that my body is exhausted after this summer of surgeries, it's because all this exertion of faith that everything will work out for my good has left me physically wiped out! But the cool thing about faith is that it may exhaust you physically, but it makes you super strong spiritually and emotionally!

God is at the helm. He knows the trials we need to face in life to help us grow into the sons and daughters He knows we can become. I'm just hoping that I can grow spiritually by getting to read about the next trial instead of living through every pain-filled moment the next time around. But if not...

#HAM2016

With a little help from my friends...

I have NO idea how I would get through life without my neighbors and friends. My neighborhood should be the most coveted place on earth because the people who fill these homes are some of the most wonderfully selfless and giving people I've ever known! All summer long they've served my family by bringing us meals and treats. They've dropped everything to babysit and entertain my kids and give them rides to and from school and various activities. If I need any kind of help, I know I can send out a text or two and they're all over it!

My neighbor across the street brought us cookies last week and I sent her a text asking for her oatmeal cookie recipe. She sent this text back to me and after we both had a good laugh, she posted the conversation on Facebook for others to enjoy. Haha! Tracie cracks me up!

I'm telling y'all, houses don't go up for sale here very often, but when and if they do, I recommend you buy it without question and enjoy the fabulous-ness that is our community. And Costco is only 13 minutes away. Just saying.

#HAM2016

#HAM2016

It's National Hydrocephalus Awareness Month! Be prepared for info graphics and stories and pictures that will help explain how individuals and families cope with this lifelong condition.