I was lying in a hospital bed on Easter morning, watching the live stream of the service at my home church in Monmouth, Oregon. As my pastor Joe opened the Easter program with a prayer asking God for my comfort and healing, I couldn’t hold back my emotions. I was 150 miles away and in so much physical pain that I could hardly move – not to mention I was still in complete shock from the events of the previous 24 hours. Tears rolled down my cheeks and I closed my eyes.
What happened?? How did this happen??
Just 48 hours earlier, I had been completely fine.
I’ll rewind a little bit to catch you up… just in case you don’t follow my story on Instagram.
On April 11th, I had a shunt valve replacement surgery after several months of struggling with nausea and fatigue symptoms. Everything went as planned, the surgery was fairly easy, and I had immediate relief. I was happy to be past all of it again and was determined to get things back on track.
I went to my post-op appointment in Bend on April 19th feeling good. My neurosurgeon was really happy with how I looked and felt but decided to leave the staples in my head incision for another week just to be safe. No alarms at all… all of this is pretty normal.
Since my neurosurgeon is 3 hours away from where I live, I decided to stay the night, and it turned out to be a really good thing that I did. While I was sleeping, my head wound started leaking significantly, and I woke with a soaking wet head of hair at 3am. I’ve never had a CSF (cerebral spinal fluid) leak before, but I knew immediately what was happening. My friend took me to the emergency room, where X-rays were taken, I was evaluated, and my head was stitched back up like a baseball to stop the leakage for as long as possible. I wasn’t in any pain initially, but that changed drastically over the course of the day and I was hospitalized later that night. My body was in shock from all the lost spinal fluid, I was running a fever, and was in the worst pain. There was concern that I might have an infection, so my medical team wasn’t taking any chances. They blasted me with antibiotics and tried all night to get my pain under control.
So, there I was on Easter morning, watching our church service on YouTube. Fighting the fever, the time passed slowly with 10-20 minute naps and the nurses taking vitals every 30 minutes. As I counted the hours, I kept repeating to myself a quote from the ancient stoic philosopher Marcus Aurelius. “The blazing fire makes flame and brightness out of everything thrown into it”.
Messages of encouragement and support poured into my phone day and night from time zones all over the world. The outpouring of love was comforting and humbling.
My family was amazing. My parents had rushed over to Bend the night before, when they found out I was being admitted. My mom is such trooper and an amazing mama bear… no cub of hers is going to be in the hospital without her being there to supervise-- if she can help it!! She stayed with me and slept in my hospital room for six days—well… she tried to sleep! It was a pretty restless.
My six year old twin nieces Kylie and Kolbie sent their own version of a music video from Austin, Texas. With Kylie strumming her ukulele, they sang along to the Kacey Musgraves song “Rainbow”.
I smiled as they serenaded me with these words:
“Well the sky has finally opened
The rain and wind stopped blowin'
But you're stuck out in the same ol' storm again
You hold tight to your umbrella
Well, darlin', I'm just tryin' to tell ya
That there's always been a rainbow hangin' over your head”
I’m so thankful for my parents, siblings and nieces. I know this whole thing scared them, but my family has always been able to bind together and get through the crazy episodes of life.
Like brain surgery #24 and #25, 12 days apart… and all the other stuff in between?
Yeah. That’s crazy. It’s real.
Fast forward and as I’m writing this, I’m about 10 days post-op from that second surgery. When I was finally cleared of all infection and they were able to operate (on April 23rd), they found that my shunt valve was completely blocked and fully disconnected from the ventricular catheter. While there is no way to know exactly what caused this, the theory is that the shunt valve clogged (after only 9 days) and then the resulting pressure caused the valve to blow off the end of the catheter. The catheter kept pulling the CSF from my ventricle and dumping it into the space behind my incision, which eventually couldn’t hold and caused the leak. As soon as I was out of the surgery with a new shunt valve that was properly connected, I was instantly better. Within just a couple of hours, the pressure behind my eyes and the extreme headache pain I had experienced for days was virtually gone.
So, here’s where I’m at today. There are plenty of questions.
Is this a new reality? I hope not, but I have no control of that.
Are we really going to have valves fail in less than 10 days? I hope not, but I have no control of that.
Are we now going to completely wipe my body out with antibiotics every time I spike a fever? I hope not, but I do understand why they needed to do this.
And am I supposed to be ok with this? That’s my choice.
Processing trauma of any kind looks different for every individual. For me, I’ve just tried my best to focus on only what I know for sure right now, as well as what I would like to see in the future. I often tell people, “It’s ok to be different on the other side of challenge and experiences”. There’s this overwhelming need in society to be “ok”. It seems like the end goal of each day is that you held it all together and got through the day unscathed. Even more so, we strive to be the way we perceive others to be, even though much of that perception is shaped through the curated and filtered lens of social media. When you ask someone how they are doing, how often is the answer “fine”? Every time I go through these surgeries, I remind myself that I’m going to be different… and that’s ok. It doesn’t have to be pretty. I embrace the new Amy and tell her she is ok.
My friends have been instrumental in soothing my soul and making life easier during my recovery.
One of my dear friends showed up on my doorstep the day I came home from the hospital with a bag full of groceries.
My sweet friend Ken, who I met on an airplane (see my last blog post for the story), sent me the most beautiful flowers in the hospital – with lilies and roses that made every nurse and doctor tell me how good my room smelled.
There were countless text messages.
Forehead kisses and tight hugs.
And some really hard conversations.
Can you believe that there are hundreds of thousands of little babies and non-verbal children going through this battle with hydrocephalus?
It’s not ok.
We are going to keep pushing for answers and better solutions.
While we are all relieved and thankful that I have been so carefully cared for, we are not ready to accept that brain surgery is the only option.
We need a cure for hydrocephalus.
And even on the days when it’s really hard to keep sharing my story, I’m going to stay committed to this path for as long as it is providing awareness and comfort.
In her book Brave Enough, Cheryl Strayed writes, “When you recognize that you will strive not in spite of your losses and sorrows, but because of them, that you would not have chosen the things that have happened in your life, but you are grateful for them, that you will hold the empty bowls eternally in your hands, but you also have the capacity to fill them? The word for that is healing.”
In the words of Brene Brown, I’m in the arena, getting my ass kicked.
But I stayed.
We stayed. And we got through it.
I was strong enough. I was ready.
I found peace in the midst of the chaos, by clinging to my faith and holding what I know.
My brain and heart battled hard.
My mind battled even harder.
And we won… for now.
5/6/2019 01:01:41 pm
Amy, your surgeon is a genius! How does he do such delicate surgery and save your beautiful hair time after time? As for your journey, you have chosen a wonderful solution. Stay in the arena and look to the positive for strength. Your faith and your strong bonds with friends and family have become your rock you stand on. Bless you Amy. So many are cheering you on.
5/6/2019 02:12:58 pm
thank you so much, Karen. Your support (along with Clancy and Robert) means the world to me, and I am so thankful that we get to do life together. xo
5/6/2019 04:34:52 pm
Thank you so much for sharing your story! I have an 8 year old little boy who was born with Hydrocephalus. He's had 35 surgeries, and he's on shunt #13. He's partially verbal but cannot tell me how he feels or where it hurts. Knowing what others experience really helps me to care and advocate for him properly. And I'm really happy to hear you are doing well. I hope and pray that you and your new shunt get along great for a long long while. 😊
5/9/2019 06:39:52 am
thank you Carina!! 🖤⚓️
Mary Gene Atwood
5/7/2019 07:26:06 pm
You are such an amazing strong woman. All that you deal with and continue with a positive attitude is amazing. I’m so glad that I know you. We still need to celebrate. Let’s make that happen. 😘
5/9/2019 06:41:17 am
I’m so thankful for you as well! There are no chance meetings... there’s a reason we’re here together. Love you 💗
5/7/2019 07:59:30 pm
Who is your surgeon in Bend? I want the surgeon that doesn’t shave your hair!! I think maybe I got in contact with you before on Facebook? I got my VP shunt at 16. I live in Bend and have been here for 21 years. I’ve had 5 revisions total and my last was in 2010 and previous in 2003. I have suffered with sporadic pelvic type pains since 2003 and always suspected it to be my shunt tubing because the pains arose immediately after surgery. But then I convinced myself it was something else, maybe endometriosis or something. Well just got confirmation that I don’t have endometriosis and now I firmly believe it’s my tubing. My previously retired Bend surgeon has informed me that my gynecologist can laparoscopically shorten my tubing that is most likely too long. I’m scared to mess with it but I’m eager to be rid of these pains that I’ve suffered with for 16 years!! Any thoughts? Have you ever heard of shortening the tube? Thanks for listening.
5/9/2019 06:46:04 am
Hi Barbie... my neurosurgeon is Dr. Kent Yundt— the website is on the resources page of the website. My hair hardly grows on the surgery site, it’s been cut so many times— but yeah, he’s super kind to me and doesn’t shave it all off. As far as your issues with the catheter, I’ve only had a couple of things happen with mine— and I’m sorry, it’s so painful. Another doctor you could check in with about that is Dr. Kowalski— he is a general surgeon but he is so nice, and he has operated on me to move/revise my catheter. Stay strong!
4/10/2020 10:33:00 pm
Before anything else, I want to thank you for being brave enough to share your story. I know that it took you a lot of guts to be abler to tell your survival story, but here you are and chose there right thing. Don't worry because you will heal fast. if you believe that everything will happen as fast as it could, it would happen! Your doctors will bring some good news with you, and that is something I am sure of! let's just believe that everything will be okay soon.
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My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x31), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.