Fighting Chiari Malformation: A Journey of Hope and Healing

My name is Derek Crosby, and I'm facing the fight of my life. I'm battling Chiari Malformation, a rare neurological condition where my brain extends into my spinal canal, pressing against my brainstem. Recently, I've also been diagnosed with congestive heart failure.

These diagnoses have turned my world upside down.

In the coming months, I face critical surgeries:

Recovery will be long and uncertain. Some functions may never fully return, but I refuse to give up.

With my health insurance expiring soon and uncertainty around government assistance, I'm deeply concerned about affording the medical care and basic living expenses I need to survive.

I'm humbly asking for your support.

Every contribution, no matter the size, becomes a lifeline. Even a donation of $10 can make a significant difference.

From the bottom of my heart, thank you for your kindness and compassion. With your help, I believe there's a light at the end of this tunnel.

Chiari is stealing my life. I'm fighting back.

Keep reading below if you want to learn more.❤️

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My name is Derek Crosby and I'm facing a challenging battle against Chiari Malformation, a rare neurological condition where a portion of my brain extends into my spinal canal and presses on my brainstem.

This diagnosis has significantly impacted my life, causing a cascade of debilitating symptoms that have taken a significant toll on my physical and mental well-being and those trying their best to help me in any way they can.

There is a real possibility I could stop breathing if the herniation causes too much brainstem dysfunction. It’s a very scary and utterly unpredictable situation to be in.

For over a decade, I poured my heart and soul into my career as a Technical Product Manager at a non-profit. I believed in making a difference, and I was passionate about the work I did.

But last year, my world began to unravel. I spiraled into a deep depression, crippling anxiety, and eventually, I was forced to leave my job due to a worsening condition I didn't even understand.

Living with an Invisible Disease

Every day presents a new challenge, or ten. I suffer from so many different symptoms it is impossible to list. The main ones are

The Road Ahead

I have surgery next month to remove a precancerous lesion, and it is likely I will then need to undergo Chiari decompression surgery shortly thereafter if the current treatments fail to keep my symptoms at bay and most don't even work effectively. Even when they do, taking a ton of pills is no way to live.

I am tired of just surviving. I want to thrive again. But, one thing at a time...

Chiari decompression surgery involves relieving pressure on the brain and restoring normal fluid flow. With this technique, the surgeon removes a small section of bone in the back of the skull.

The covering of the brain is then opened and a patch is sewn in place to enlarge the covering and provide more room for the brain, thus restoring the normal flow of spinal fluid.

The kicker is this may not be the only surgery I require. Depending on the outcome of the initial procedure and the progression or regression of my symptoms, further surgeries may be necessary.

Recovery will be a long and challenging process, requiring extensive physical and speech therapy to repair any neurological damage as much as possible. Some functions may never fully return. This significantly impacts my ability to work and has left me with no income, with a homeless situation constantly looming like a dark cloud.

I am lucky and grateful that my family helps where they can but it's not fair to them to have to carry this burden and help me all alone.

My mental health is a wreck and at most times, life seems hopeless and impossible to endure. I get angry a lot and am extremely irritable most of the day. I just remember the fight must go on.

Facing an Uncertain Future

My current health insurance coverage expires in March. The uncertainty of securing government benefits like SSDI or SSI is causing immense stress and anxiety.

I am deeply concerned about how I will be able to afford the ongoing medical care I need, including potential surgeries, therapies, medications, not to mention just surviving with a roof over my head.

A Call to Action

Your support is crucial in helping me navigate this challenging journey. Even if you are unable to donate, please consider sharing my story.

Chiari Malformation is often misdiagnosed and/or dismissed by most medical professionals. Most doctors simply are not trained to handle this disease because they do not understand what the patient really goes through on a day-to-day basis.

Their condition just worsens and it wreaks havoc on not only their lives but the lives of loved ones that try their best to understand them, support them, and try to give a helping hand. These people are angels in disguise and a godsend for someone that wants to just give up.

Many people suffer in silence for years, their symptoms ignored, their emotions, feelings and pain dismissed as not being real. I assure you, it is all very real.

Even for the patient, describing the myriad of symptoms to anyone is just to challenging, taxing and next to impossible. The feeling of hopelessness is a very real threat to seeing a light at the end of the tunnel for people affected by this disease.

Everyone suffering from this disease has a journey that is different and that makes it very hard for others to understand the pain their loved ones are going through.

By sharing my story, you can help raise awareness of this debilitating condition and offer hope to others who may be struggling and just want to throw in the towel and simply give up. Maybe you will change a decision, help them for just for a moment, and possibly even save a life.

Your generosity will help me cover medical expenses, rent, and basic living costs and my hope is, it will help me see the light and maybe help others see theirs. Sometimes just a little hope is all you need.

Any contribution, no matter the size, will provide immense relief and allow me to focus on my health and recovery.

Even $10 will go a long way and I will be eternally grateful.

I know there is a light at the end of the tunnel, even if I can’t yet see it. I just believe with every fiber of my being that it is there. I have to believe in the rainbows and unicorns, even if no one else does.

Thank you from the bottom of my heart for taking time to learn about my struggles, my journey and giving me a glimmer of hope. I truly appreciate your support and compassion. And so do the others.

CHIARI IS STEALING MY LIFE. I’M FIGHTING BACK.

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