Hooray for Monday!

Day 36. 

I think I may be the only person excited that the weekend is over. Haha! Neurosurgeon's office opens at 8:30 this morning. Hopefully we can figure out our game plan before lunchtime!



In other news, this kiddo told me he's my own personal superhero protecting me from awful headaches...
 

Different times. Different life.

Dude. How did I manage lectures, papers, grades, and tests when I felt like this 13-14 years ago?! I'm not whining about it to get sympathy votes. I'm just honestly astonished that I managed to graduate from college with a decent GPA after four brain surgeries and almost always feeling like crap.

Feeling the love

Day 36. 

Feeling the love and prayers from friends and family. Thank you everyone!!

Failed ETV Protocol

I came across this article today as I was googling "failed ETVs." I was halfway through it when I realized that it was authored by the neurosurgical team with which my new neurosurgeon is partnered at the University of Utah.

This paragraph, in particular, is the protocol for failed ETVs, but I'm just so frustrated that if all the "regular" tests can produce false-negative results, WHY are we having to wait for surgery?! I feel like crapola!! 

"Determining whether reclosure of the fenestration and recurrent hydrocephalus has developed can be clinically difficult, especially in the adult population presenting with chronic compensated hydrocephalus. In these patients, a return of symptoms may be fairly subtle and slow in onset. Because the ventricle size may change only minimally in these patients, this is not always a reliable indicator. If obstructive hydrocephalus has recurred, a diagnostic lumbar puncture may not reflect pressure within the ventricles and could also be potentially unsafe. Cine-flow magnetic resonance imaging may be helpful to demonstrate CSF flow through the ventricular fenestration; however, technical difficulties with such studies may yield false-negative results. If the return of clinical symptoms is compelling and diagnostic studies yield equivocal results regarding the status of the ventriculostomy, endoscopic reexploration is recommended."

Endoscopic Third Ventriculostomy in a Series of 36 Adult Patients

Ask for Guidance & Be Patient

Elder M. Russell Ballard of the Quorum of the Twelve Apostles shared this story on his Facebook page two days ago and it's a great reminder of patience and relying on the Lord's will and strength.

I have a dear friend who was dying of severe bone cancer. We served missions in Europe 65 years ago.

“Russ,” he said, “tell God to let me die.”

I replied, “I am not going to tell God to do anything, and neither are you! It doesn’t work that way. But I will give you a blessing to see what Father will have you do at this time.”

He said, “Well, if that is all you are going to do, then OK.” Shortly thereafter, he died.

My point in sharing this story is that we should never tell our Father what to do. I happen to believe that God must have a glorious sense of humor. People order Him around in prayers all the time! I often hear those prayers and think God must smile and think, “Someday they will understand.”

We should ask God for guidance and be patient. Move forward step by step in the plan of salvation and perform whatever He asks you to do. It is simple: have faith in the Lord Jesus Christ and in His plan for you.

Hymns Heal

I love Mack Wilberg's arrangement of "Come Thou Fount of Every Blessing." Here's the Mormon Tabernacle Choir and the Orchestra at Temple Square conducted by Mack Wilberg. 

You're Welcome.

Continuing on my kick of sharing fabulous hymns... Here is my ABSOLUTE favorite arrangement of "Nearer My God to Thee" by James Stevens featuring Brigham Young University's Vocal Point and Men's Chorus. 

Fear Not

Day 35. 

I love hymns and the sustaining messages they share. "How Firm a Foundation" is one of my favorites! #hydrocephalus #hydrowarrior #DaughterOfGod #HeIsMyStrength

"I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, upheld by my righteous,
Upheld by my righteous, omnipotent hand."

https://www.lds.org/mu…/library/hymns/how-firm-a-foundation…

All is Well

My momma is here. 💕



I think the most difficult part of dealing with my hydrocephalus now, as opposed to thirteen years ago, is that I'm a mother and a wife and each of those relationships needs my love. But when all I can do is lay on my bed in the darkness of my room and every little noise makes the pain a million times worse, I can't do my job.

So thanks dad for lending us your wife while we work on fixing this brain of mine. Everything is better when mom/grandma is in town to help bring happiness and cookies to an otherwise stressful situation.

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.

Faith - Hope - Happiness

Even facing the potential of brain surgery #5 in the coming week(s), even as my sweetheart and I navigate the waters of life with ever-growing and learning children in our care, even through the murky waters of political and social tensions, we stand tall with faith, hope, and happiness because "[we] can do ALL THINGS through Christ which strengtheneth [us]." #faith #hope #happiness #hydrocephalus #ventriculostomy #failedetv #foreverfamily

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

Bowling Ball Head

The Nurse called just now to tell me that my dr left to go out of town this weekend. He looked at the MRI just before he left to see if surgery was needed immediately. He concluded that I can suck it up over the weekend and that we'd come up with a game plan on Tuesday. Nurse said he acknowledged that my ventricles are enlarged, but not excessively so. But Based on our conversation on Monday, I'm pretty sure he'll do surgery because I'm symptomatic.

My friends on the ETV Facebook page think that the hole is probably still allowing fluid to flow but not as much as it should. And since many of them have had ETV revisions, I trust their interpretation of the symptoms and brain scans more than anyone else except my neurosurgeon.

Hope & Faith

Day 33. 

Really dizzy and nauseated this morning. Headache isn't too bad. Hoping for answers this morning!



EDIT: So the Nurse called just now to tell me that my dr left for an out of town conference this weekend. He looked at the MRI just before he left to see if surgery was needed immediately. He concluded that I can suck it up over the weekend and that we'd come up with a game plan on Tuesday. Nurse said he acknowledged that my ventricles are enlarged, but not excessively so. Based on our conversation on Monday, I'm pretty sure he'll do surgery because I'm symptomatic. 

My friends on the ETV Facebook page think that the hole is probably still allowing fluid to flow but not as much as it should. They all recommend surgery. And since I'm the only one in the FB group who hasn't had a revision of the ETV (out of 300 who have had at least 2, but mostly 3 or more), I trust their interpretation of the symptoms and brain scans more than anyone else except my neurosurgeon.

My Brain!

Hey look! It's my brain!!! Unfortunately, the neurosurgeon didn't call tonight. So no definitive answers until tomorrow. We can see the ETV, but we can't tell whether or not there's flow through the hole aaaaand the technician didn't do the right CSF flow study. I wish I was making that up. We believe the third and lateral ventricles are slightly enlarged (compared to my previous scans... always compare to the patient, not other people's normal). So that's all we know at the moment. I'll keep you updated as we learn more.

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.

The Details of Our Lives

Day 31.

Mom Life Goes On...

My poor kids. Even in pain, I'm still coherent enough to have them find copies of the original vital records (or as close to the original that is available online... I'm allowing derivative sources for famous people) for biographies they're assigned. Can you tell from this Massachusetts death record who Katie chose for her wax museum project?

"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!!!

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

A Sincere Letter

Dear Brain,

Calm the crap down!

Love, 
the rest of your body

Day 30.

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!!

The Lord's Timing

Day 29.



I'm meeting with a new neurosurgeon this afternoon... Dr. Joel MacDonald. He's on the neurosurgical team from the University of Utah but he has an office at Intermountain Medical Center, a hospital covered by my insurance. Unfortunately, Dr MacDonald isn't a preferred provider, so we'll be paying for this appointment out of pocket. I'm still hoping that this headache is caused by too much estrogen or something easy and dumb like that...

Trust the Power of God

Day 27.

Patience = Happiness

Day 27.

God's Timing

All I could post on FB for an update on my headache situation was this...

Day 26.

"You've Got to Go Dig Those Holes"

Two of my friends (wonderful gals just living their lives as normally as possible... one is an amazing interior designer and another is a stinkin' smart medical student) are facing upcoming shunt replacements to treat their hydrocephalus. One of them posted this meme today as she faces the very real possibility of yet another brain surgery in only so many months. The meme made me laugh at first and then I cried. 

I was living this life almost fourteen years ago and I've been serving the hydrocephalus community since 2007, raising money for research, patient education, and advocay, and helping families find hope and teams of health care professionals to help them navigate their care and healing from multiple brain surgeries. But every time I talk with my friends and their families who struggle with failing shunts and treatments, I've always had the quiet, little thought in the back of my mind, "I'm SO blessed that I don't have to deal with this anymore!" 

But today is day 24 of a never-ending headache. And other symptoms with this headache and treatments that haven't helped have us leaning toward the idea that it's probably time to rule out hydrocephalus as the contributing factor of this pain. I really, REALLY don't want this meme to become my reality again. 

We used to joke that the neurosurgeons should just create a zipper on the side of my head so that closing up my skull would be easier than stapling or sewing it up every time. (Having 23 staples removed from your head reeeeeally hurts, btw!)

Regardless the cause of this headache (I'm rooting for hormone imbalance, or some such nonsense like that), I'm praying for my friends who have faced this reality for years and years and years. Y'all are my heroes and I look up to your strength and determination and courage. 

Oh! And just for the record, people struggling with hydrocephalus often find themselves in CRAZY pain from storms like this one that rolled on through the Salt Lake Valley today... And guess what? This was the first time in almost 13 years that the intensity of my headache was in direct correlation to the intensity of the change in barometric pressure. My hydro friends in Arizona must absolutely HATE monsoon season! 

Caffeine Cocktail Headache Remedy

Headache Day 18.

Several of my friends are BIG believers in two Excedrin, a coca cola, 50 mg Benadryl, and two red Sudafed to cure many a headache. And I was SO done with this headache that just wouldn't go away so I was willing to try ANYthing, even a remedy that included lots of caffeine. But within the hour of filling my system with more caffeine than I'd probably had in a year, I posted this to Facebook...

I can't handle my caffeine. I took two Excedrin a few hours ago and I'm jittery and shaking like crazy and I STILL have a headache. #sideeffects #medicineisdumb #headache

Seriously though. I've never been a big soda drinker and usually avoid anything with caffeine. I don't like the jitters I get with it. And this remedy was a big ol' headache relief FAIL and actually made me feel worse.

One of my friends commented on this post and offered advice on using essential oils to help my headache. I explained that I love essential oils and have a ton of them for various symptom relief, but that we'd ruled out tension as the cause of this headache. She asked if it could possibly be related to my hydrocephalus and I said, "I'm no where near the craziness that goes on with hydrocephalus, so we're really hopeful that it's hormone related.

Oh! Had it only been an issue of hormone imbalance!