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Take control. Flip the script. #HAM23

9/3/2023

10 Comments

 
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In June of this year, I walked into my neurosurgeon’s office in Bend, Oregon for the first time in almost three years. The distinct smell, the artwork on the walls, and the environment were all familiar, but it didn’t feel the same. It was surreal to be there for a routine check-in, and not a meeting to discuss surgery. The look on my doctor’s face when he walked into the exam room said it all. Relief, joy, and victory. After battling so hard for so many years, the idea that I could go even one full year without surgery had felt unattainable. But here we are, three years later. Things have been relatively calm, mostly quiet, and ultimately manageable for over 1,000 days. I’m so grateful. 

This period of medical stability began with a game-time decision made by my neurosurgeon to remove my VP shunt after it had completely failed in June of 2020. I already had an ETV, but had been unable to function without both the shunt and ETV for a number of years. We had racked up 30 surgeries at that point, at a pace that had become exhausting. So he took the chance that if he removed the shunt (which had been the cause of so many surgeries), my brain would figure out a way to function with only the ETV. I’m not going to pretend that this was an easy transition, but after several rough months it eventually smoothed out and I found a new normal. Over the course of the summer and fall of 2020, while the world was distracted by the pandemic, I moved aggressively towards finding overall wellness and peace. We searched and found answers for my ongoing infection issues, and I was able to get off antibiotics, antibacterials, and most medication for the first time in years. My soul found peace as one by one the things my family, friends and I had worked and prayed so hard for started to come to fruition. It’s been amazing to be able to share this part of the story - instead of the focus only being on surviving the repeated blows, and the willingness to stay in the fight. We never left the arena, and it paid off. 

As part of the @hydroassoc 2023 Hydrocephalus Awareness Month, they are asking people affected by #hydrocephalus to share their personal story, with the theme being “Take control. Flip the script.” When I got the email with this title, it dawned on me that this has always been my theme. It’s been the thread that runs through all my social media and blog posts ever since I started sharing my journey with hydrocephalus back in 2014. I was blessed to be raised by parents who instilled the value of resilience in all of us as kids, but I’ve always been aware of the importance of language and attitude. One of the only things you can control in your life is how you portray your story to the world. I’ve always tried to be realistic and open about the pain, but also hopeful and intentional about the future. In this moment, I have the privilege of using the words stable, manageable, and surgery-free. But even if someday in the future things shift again and we’re back in the battle, I will remain committed to using the words strong, ready, faithful, relentless, choice, and hope. 

Many blessings to all my fellow hydro warriors. 
Stay in the arena, it’s where the magic happens.  
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10 Comments
Wenda & Jamie
9/13/2023 10:56:49 am

Amy Thank You so much for sharing!
You doctor is also our daughter’s doctor. 2022-23 has been very tough! Two years of not good but not bad but not sure what exactly to fix but we know something is off! 1 surgery turned into 5! She has 2 shunts and 2 times the problems! and we are now accepting a new normal! Not as good as she once was but not as bad as she’s been! Jamie will be 37 next month. She got her first shunt when she was 1 month old! She’s had more shunt revisions than we can keep track of over the years! As a newborn she had a very rare type of bacterial spinal meningitis. It caused traumatic brain injury. That started our life with hydrocephalus and shunts. We have the best doctor and he and his team make Hydrocephalus easier to deal with. He has been her doctor since he first came to Bend. When the other doctors gave up and said they would not see her anymore and that it wasn’t her shunts !! .. They were wrong!!! He listened to us and had new ideas. We are BLESSED and grateful for his care. Jamie is an added challenge as a patient because of the fact that she is developmentally delayed, autistic and nonverbal she functions at a about a 2 year old level. Hydrocephalus has power over our life every day because we make decisions based on if it’s going to be a good brain day or a bad brain day!🤷🏻‍♀️ We just never know! People just have no clue what it’s like to live with a chronic condition. It was easier to manage her hydrocephalus when she was younger because it was more predictable and easier to read the signs!
I have read your story before but it’s been awhile and I just wanted to thank you for sharing because it helps me as a mom with a daughter without a voice to hear from someone that can put words and feelings to the realities of everyday life with Hydrocephalus! It’s different for everyone but also the same! We are not looking forward to the day our favorite “Brain Mechanic” decides to retire! That’s a whole new level of fear I don’t want to think about yet. As a parent getting older and our daughter not ever going to grow up is a hard reality!? Hydrocephalus is a family condition! It hurts our hearts for Jamie and for all the Hydro Warriors …
Thank You again for sharing your story! You are an inspiration! Thank you for letting me as a mom gain a better understanding because of your willingness to share your personal experiences with Hydrocephalus!

BLESSINGS
mom of a Hydro Warrior!

Reply
Amy
9/14/2023 05:13:11 am

Thank you so much for this sweet message - it made my day. We are mutually blessed to have found a neurosurgeon who is such a great human, and I wouldn't be the person (or patient) I am today without everything he's done for me. But it sounds like your daughter is a fighter!! And I love that. Hugs to you both - never give up the relentless pursuit of better.

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This is such an incredibly inspiring and powerful story! Your strength and resilience shine through every word. The way you and your neurosurgeon took a chance and flipped the script on your situation is truly remarkable. It's wonderful to hear about this period of stability and the peace you've found.

Your emphasis on taking control of your narrative, maintaining a positive attitude, and choosing empowering language even during difficult times is a valuable lesson for everyone. You've not only navigated your own challenges with incredible fortitude but also provided a beacon of hope and strength for other hydrocephalus warriors.

Thank you for sharing your journey and for embodying the #HAM23 theme of "Take control. Flip the script." Your story is a testament to the power of perseverance and a reminder to always stay in the arena. Wishing you continued health and many more stable and manageable days ahead!

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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. 

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