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

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

Recovery Day 8

My first three shunts in college were all placed posteriorly on the right side of my head. This current shunt has an anterior placement on the top right of my head. Not sure how much of a difference it will make, but I was ALL for not waking up from surgery with the back right side of my head completely shaved. Instead I just have a little patch shaved on top where the shunt pressure valve sits and then a bit behind my right ear where they created an incision to help feed the catheter down my neck to my abdomen. When we got home last Friday, my sweet Katie Lynne was SO happy I still had so much hair. She cried and cried every night leading up to the surgery about the potential loss of my hair and was overjoyed when she saw that it wasn’t that bad! 

Not Just For My Good

Day 37

The LAST thing a neurosurgeon wants to do is perform brain surgery. They want to double and triple check everything else before they jump to the conclusion that something is structurally wrong with the brain that requires an invasive operation. My last surgery required the neurosurgeon to use a tool that had to work millimeters away from my basilar artery which, if nicked, would cause immediate death. I totally understand and am kinda grateful for the reluctance!

Soooo, when my surgeon tells me that he wants to rule out everything else that might be causing these symptoms, then I get to swallow my frustration and work through the process so that everyone involved feels confident that we're choosing the best path that leads to my good health and healing. And if I need to be shunted again, then we know, for sure, that the shunt is the ONLY and BEST option.

In the meantime, please send your happy and healing thoughts and prayers our way. We're trying to put together an awesome health care team who can work together to come up with answers and solutions in a collaborative way.

And as I navigate through this journey, I'm taking notes!! Our hydrocephalus health care community in Utah is fantastic on the pediatric level and it's beyond time that we make our adult medical community just as amazing! And you KNOW I'm all over that!! I'm convinced that this journey isn't just for me and that everyone in Utah's hydrocephalus community is going to benefit from all of this!

Chocolate & Money

Day 32.



RIGHT??!!! Haha! 

I actually woke up today feeling pretty good. It was awesome... and very short-lived. 

We're all just waiting to see the results of the MRI I'm getting Tuesday morning (unless there's a cancellation and they can get me in before then or my symptoms get worse). If the MRI shows that the ETV is closed/closing, then it's an easy fix of just reopening the hole. If the ETV is still open and CSF is flowing, then we have to start exploring the idea that it might not be allowing enough CSF to drain out of the ventricles. At that point we'd be looking at getting a shunt again. Bleh. We'll keep you updated.

"Waiting for the shoe to drop..."

Still Day 30.

Compared to Jen, my four (almost five) brain surgeries are nothing! She's our hero! And so is Dr Walker. His texts this week have helped me stay positive and hopeful. Our hydrocephalus community is amazing! I love working with all of them!!!