Hospital Day 11

After losing so many battles this last week, it was all I could do to stay somewhat sane yesterday. I just wanted to go home and be with my babies. We'd been at the hospital eight days longer than anticipated and I was DONE! This quote so perfectly summed up my emotions. And physically, yesterday was the absolute most painful day of this ordeal since headaches started April 24th. A CT showed that my brain is swollen, I had air pockets hroughout my brain, and some intraventricular bleeding. All of those things can add up to a pretty craptastic headache, but they aren't necessarily unusual. I had he same thing happen in June, but not the revision is August. But things calmed down and I had a GREAT night and get to be discharged today with as needed follow up over the next several days, weeks, and months. But just to catch you up, here's what I been doing...

On Wednesday, Oct 12th, I came to the UofU hospital because my six-week old shunt was failing. We assumed my shunt had clogged and wasn't draining as much CSF as it should have been. The surgery would've lasted 15 minutes to replace the broken shunt and I would have been discharged the next day.

But the shunt wasn't clogged. It was obvious, though, that the shunt pressure valve setting wasn't allowing enough CSF to drain, so I still needed surgical intervention. And instead to using whatever random shunt and set it to whatever random pressure setting, we decided to run some intracranial pressure tests for a week to see the pressure at which my brain is happiest so that if I had to be shunted again, we'd know exactly what would work best.

Three days ago, we all pow-wowed and decided to take a look in the brain. The pediatric neurosurgeon who performed the last surgery I had in college that kept me brain-surgery-free for 13 years (and based on my shunt history, y'all understand why that 13 years was such a big ol' deal) came to assist my adult neurosurgeon during my surgery. Unfortunately, there is a bunch of scar tissue behind the hole made 13 years ago that is preventing the CSF a natural passageway of flow. My basilar artery is also behind my third ventricle and one nick of that vein and the surgery would have been over with a quickness.

Soooo, using the ICP data we collected last week, I was given a new shunt that we're hoping will last a lot longer than the last five.

The shunt was initially working great for several hours after surgery, but by Friday morning, we knew something was wrong. Thankfully it's an easy fix. They used an external magnetic device to adjust the pressure setting and I can also slow the flow of CSF by laying down flat. This will need more fine tuning, but I can do that on an out patient basis.

Soooo ... Buh-bye hospital! I'm coming home!!!

Intracranial Pressure

So this happened today. My six-week old shunt wasn't helping my brain lately which meant one of two things: (1) there was a blockage somewhere the shunt system preventing enough spinal fluid to drain, or (2) the pressure setting for the shunt was too high or too low and over/underdraining my CSF. Either problem requires brain surgery. Again. For those of you keeping track, this was my third surgery since June and my seventh overall.

And as it turns out, the shunt was overdraining which is crazy because I totally thought it felt like it wasn't draining enough.

The plan was that if the shunt was clogged, they'd simply ("simply" for brain surgery??) revise the shunt system and is be on my way just like the surgeries in June and August. But since it was a problem with the pressure, we decided to use an external ventricular drain (basically like a shunt, but on the outside on my brain). I'll have this EVD for a few days as we use it to try to figure out the pressure at which my internal CSF pressure feels best.

In the meantime, Glen and I are experimenting with the physics behind it all. It doesn't take much to entertain us these days. And yes, the fluid you see in this video is my cerebral spinal fluid. Totally gross, but oddly very interesting!

Recovery Day 16

I skipped a couple of days. I had nothing new to report and anything I would've posted would have been pretty whiny and/or depressing. But I definitely have a message today...

I think the most difficult part of living with chronic pain is trusting yourself after so many medical professionals have told you that you're wrong.

Until yesterday afternoon, I literally could NOT even sit or stand up for more than a few minutes without getting the worst headache you can possibly imagine because my shunt had been overdraining since the day of surgery. Those of you who have had epidurals leak after delivery or a lumbar puncture and you didn't stay down the full 24-hours or any kind of CSF leak understand the kind of headache I'm talking about.

I was almost hyper last night, giddy like a little girl walking around Disneyland, because I got to sit up and watch the Olympics trials. I coughed at one point and braced for the spike in pain only to call out, "It didn't hurt!!!" My mom and Glen were so excited! Sarah Jane was like, "is it supposed to hurt?" No sweet cakes. Coughing should not make you feel like you're going to die. I even got up several times for a snack or three because I wasn't even nauseated! I've been taking Phenergren for nausea since the middle of May. And I didn't even think to take it yesterday afternoon because I didn't desperately need it!

YOU ARE YOUR OWN BEST ADVOCATE!!! Trust your body! And if you're wrong here and there, who cares??!!! I promise that you will be right more often than not!!!

The Shunt Is "Off!"

I had my shunt adjusted again today. It was still overdraing (a LOT!) even set to a 6 out of 8 settings. So now it's set to an 8, which is virtually "off" because the pressure required to open the shunt valve is really REALLY high. I'll get another CAT scan on Wednesday to check the size of my ventricles and hopefully this will work for a while! I finally feel great! I sat up and watched the Olympic trials this evening without any headache pain! Woohoo!!! 

But the BEST part of the doctor's appointment today was that my wonderfully smart and resourceful husband, Glen, was the one who figured out how to use the shunt's magnet tools to properly adjust my shunt. This shunt valve hasn't been on the market very long and I'm our nurse's first patient with this type of valve. She was having a difficult time getting the setting to read and adjust correctly so we had to go get an x-ray to check the setting. When we got He was helping the neurosurgeon's nurse follow the manufacturer's instructions he found online in a pdf document. He's my hero!

I had my shunt adjusted again today. It was still over draining (a lot!) even set to a 6 out of 8. So now it's set to an 8, which is as close to "off" as a shunt can be. I'll get another CT on Wednesday to check the size of my ventricles and hopefully this will work for a while!

Recovery Day 12

I've discovered a problem... I can't raise my voice without inducing a ridiculously awful spike in my headache pain! This will become a bigger problem when my mom leaves on Sunday. She's been AMAZING with the kids and has kept them busy enough that the potential problems created by our little humans have been kept to a minimum!

Glen Varga will be home for the most part throughout the rest of July, so he can play referee with the kids. But this ability to raise my voice has been a mommy super power!! And I'm not even talking about yelling. That's totally out of the question because I think the pain would kill me. But I've lost the power to use my voice to grab everyone's attention because someone is about to do something ridiculously dumb that will probably hurt someone/everyone else. Or to end a loud argument mid sentence because I say the mommy magic word that shuts everyone up immediately. Or to get all of the potential A/C drainers on hinges closed at once with just a few words projected loudly. And with four little humans, it's physically impossible to be in each of their spaces all the time so that we may converse at a below normal decibel level. And even if it were physically possible, that would be a disservice to my children who are learning degrees of independence as they are taught correct principals and expected to govern themselves.

Captain Von Trapp had the solution, but I'd need a whistle that requires minimal air power. Anyone have one of those?

In other news... That moment you realize your hair part for almost 13 years needs to switch sides to cover up a few newly-created bald spots.🤔 #hydrocephalus#failedETV #newshunt #firstworldproblems

Recovery Day 11

I did my hair and makeup today! Feeling a bit better every day!

This is the shunt that is keeping my CSF in check. It's fun to see the new changes to the shunt systems, especially when I realized that I attended a meeting that showed an idea for improving shunts on a power point presentation ten years ago and those changes are now in my head!!

Codman Certas Plus Programmable Valve

Recovery Day 10

I love the Sabbath Day! Physically I've been resting all the time for weeks and weeks, but Sunday's are a more productive rest for me as I do activities that help draw me closer to my Savior. Several weeks ago, I rediscovered daily journaling as a fabulous way to process the emotional and physical health challenges with which I've been struggling. I've also been spending more and more time in the scriptures as a source for putting life's struggles into an eternal perspective.

Yesterday we learned (the painful way) that I definitely have a time limit on how long I can be up and about without my head feeling like it's going to explode. We're not sure if the shunt is draining too much or too little... The pain feels the same either way. I haven't heard it drain since yesterday morning. But maybe I just can't hear it anymore? It's all so very confusing. And it's in these moments of confusion and frustration that I remind myself that "God is not the author of confusion, but of peace" (1 Corinthians 14:33) and I turn to my Savior in prayer. And guess what? He helps still my soul every time. #BrainSurgeryRecovery #hydrocephalus #ShuntsAreWeird#SabbathDay #HeLives

Recovery Day 7

I can't believe it's been a week since my surgery! It's been an emotional roller coaster, for sure, especially as I remember how much I hate shunts. I mean I really truly hate having this pressure valve and tubing system manipulate the drainage of my CSF. Sometimes it drains too much. Sometimes it drains too little. Either way, I get an awful headache. And when my pain increases, my emotions start to overwhelm me and drag me down a path of ridiculous negative thinking. Crazy emotions are also a side effect of brain surgery. So I've been forgiving myself for this lack of emotional control. It's totally normal. But knowing that doesn't necessarily make it any easier so I simply ride it out until I'm distracted by something else.

I'm grateful for my hydrocephalus support FB groups that have been helping me keep the physical and emotional pain in perspective. One of my darling friends who's had three times the number of brain surgeries as I've had, gently reminded me yesterday that this shunt is working with my ETV to keep me alive so that I can be present with my family and live a pretty normal life. She said it might be a bit more painful, but I'm alive.

Truth.

Thanks for the encouraging words and prayers, my friends. I'm healing more and more every day.

Somebody? Anybody??

Day 40

There are only a few neurosurgeons in Utah who can perform an endoscopic third ventriculostomy (ETV). In this procedure, the surgeon creates a hole at the base of the third ventricle thus creating a pathway for CSF drainage. It takes less than ten minutes. I had this surgery almost thirteen years ago. And it seems the hole they made has either closed, partially closed, or is still open and just not draining enough CSF. The first two scenarios require doing the ETV again. The last requires the placement of a shunt.

So of those few neurosurgeons with whom I have complete confidence in doing the ETV, more importantly doing the ETV in MY brain, only one is covered by my insurance AND he's out of town until late next week "at the earliest." Yup. This means, that if my symptoms get worse, I get to go to the ER and take my chances with neurosurgeons who think they can do this procedure and maybe they'd be fine, buuuuut... It is my brain and a big ol' artery is millimeters from the tool they use to make the hole. I'd really like the best of the best in the O.R.

We're voting that my symptoms don't get worse and that I can hold out until whenever this surgeon gets back.

Original Diagnosis

Day 34. 

Awww! Look, how cute! This is an image from my very first MRI.💕

My ONLY symptoms with these enlarged ventricles were dizziness (like a mold of jello was jiggling in my head) and chronic exhaustion. My headaches didn't begin until I received my first shunt two weeks after this MRI was taken. And they didn't stop until sometime in late 2004.

Before a doctor at the BYU Health Center insisted I receive a MRI for my chronic dizziness, three doctors at Kaiser in Antioch and Walnut Creek diagnosed me with a cold in my inner ear, anxiety and stress, and absolutely nothing at all (the latter "diagnosis" was due to perfectly normal blood tests). Thankfully, the dizziness went away at the end of summer and that allowed me to return to Utah where the correct diagnosis was made when the symptoms returned a month later.

Endoscopic Third Ventriculostomy (ETV)

This is similar to the last brain surgery I had in October 2003 after my third shunt failed. It's a relatively quick procedure actually.

The question of the hour is whether or not this hole they made has scarred over and closed/partially closed and needs to be reopened OR whether or not the hole is open but is no longer draining enough CSF and I need a shunt to drain the excess fluid. Does that make sense? The MRI was supposed to show the CSF flow through this fenestration, but they didn't do that test yesterday for whatever ridiculous reason. But my symptoms suggest that either case requires surgery.

We will have a better game plan on Tuesday. So in the meantime, thank you for your prayers. I guarantee that we're feeling each and every one! #hydrocephalus #endoscopicthirdventriculostomy #etv #etvfailure #aqueductalstenosis

Keep Calm

Whatever. YOU keep calm. Extra spinal fluid is super painful!! I've gotta give more sympathy to my fellow hydrocephalus warriors because dang! This hurts!!! Not sure when we're supposed to cry "uncle," but I'm pretty sure I'm quickly getting to that threshold... Almost 13 years without this pain. The Lord blessed us immeasurably, but I guess it's time to address this problem again. #hydrocephalus #etvfailure #headache

Accept His Will

Still day 29.

It's almost been 13 years since my last brain surgery to treat my hydrocephalus. Unfortunately, it is a life-long condition that requires monitoring. And since I've been struggling with headaches, dizziness, blurry vision, and nausea for the last 29 days, we have to wonder if something is wrong with the hole they poked in my brain over a decade ago. It may have scarred over or it may not be draining as much as it should. We don't know. I'll get an MRI in the next few days to monitor the CSF flow, but it may or may not show anything definitive. We'll decide the next steps after we've seen the MRI films. Whew! So crazy!!