Stearnzie

Chiari 1 Malformation Story

***Please note, this post was from my original gofundme page, my goal has been reached and surpassed so there is no need to give. I post this only for the purpose of helping inform those who have yet to hear my Chiari diagnosis.***

“You MUST have brain surgery, not just for your symptoms, but to save your life … if you do not have the surgery, you will eventually become paralyzed”

Hi Friends….

First of all, I apologize if you are just now hearing about this for the first time. The statement above is true, and I’m going to need help – spiritual and financial. GoFundMe is a great site but I never wanted to need it. But I do now, and I have no choice but to swallow my pride and ask.

I’ve written the whole story below, hopefully you can take a few moments to read it. (If you do, then thanks!)

A few years back, I was diagnosed with central (brain related) sleep apnea in Seattle. When I moved back down to California last May, I connected with a new sleep doctor who wasn’t convinced I had Central Apnea because of my health and age. He ordered a sleep study which did in fact confirm that I have Central Apnea.

During my post sleep study appointment, my doctor was still perplexed as to why I might have it as it is usually found in older people who have suffered something like a stroke. No strokes for me, so like a good doctor, he began to investigate.

Doctor: Do you have any type of headaches or abnormal symptoms?

John: Well, I have this strange pain in the back of my head and neck if I cough hard, laugh too hard, sneeze, hold out a high note singing, stand up to fast… I’ve had it for as long as I remember. I’ve looked up the symptoms online and they go hand in hand with something called Chiari 1 Malformation, however, whenever I used that term with past physicians, they would ignore it and say something like “there’s no way that’s what you have, it’s too rare,” so I’ve just managed it.

Doctor: Let’s order an MRI to rule it out. If you do have it, I beleive that is what might be causing your central apnea.

Well… 2 weeks later I received a call from my Doctor who had a chance to review the results from my MRI. He told me that I do in fact have Chiari 1 Malformation (Learn more about Chiari here) and that I need to meet with a Neurologist right away.

It turns out Neurologists are busy people, but I was finally able to see him on 7/19/17. He happens to be the Program Director for skull based surguries at Hoag Hospital. My mom was very insistant that I take someone with me, and I’m so glad I listened (Listen to your mothers people, they know what you need). I was grateful to have one of my best friends Alex Jones there with me, especially when my doctor emphatically said: “You MUST have brain surgery, not just for your symptoms, but to save your life … if you do not have the surgery, you will eventually become paralyzed”.

Breathe John…God is in control… You’ll be okay…These are things I was telling myself to remain calm. At the same time I was thinking: holy crap, brain surgery? is this happening? what is going on?

The good news? The surgery is not very complicated and my neurosurgon has performed it regularly and it has a less than 1% chance of complications. Phew.

Bad news? It’s REALLY painful. He will need to tear muscle in my neck near the base of my skull to perform what is called a Posterior Fossa Decompression surgery. In layman’s terms – small portions of my skull will be removed to give my cerebellum more room. The doctor did not sugar coat this at all. He said the pain will be pretty unbearable, but once it’s done, my quality of life and risks of damage to my brain and spinal cord will be eliminated.

The actual surgery is around 3 hours long. Post opp will be a few days in the ICU and then a long road of recovery and physical therapy.

Thankfully I have insurance! My max out of pocket for participating providers is $6,750.00 and $9,750 for non participating providers. These dollar amounts are MUCH better than the six figure number this surgery will cost.

This is where the ask comes in. And truthfully, this is really hard for me, which is why I know I need to do it. Every time I’ve given to a GoFundMe cause, It brings me so much joy to be able to help someone in need.

I’ve heard it said that you can rob people of the opportunity of being a blessing if you refuse to ask for help. So I’m swallowing my pride and looking to my community of friends to help me in this journey as I will be out of commission and unable to work for at least 3 months, maybe longer.

Your giving will go to all of the medical bills that will not be covered by insurance and will help provide for basic needs while in recovery. Any additional funds will be secured for future medical costs in 2018 and beyond as there are a lot of post opp appointments and a potential second surgery to install a metal shunt to help relieve any pressure of fluid accumulation (less than 5% chance of this happening).

I also ask for your prayers. I realize that my community includes people of faith in Jesus, spiritual people, agnostics, atheists, etc. I happen to believe in the healing power of Jesus whether it is through miraculous touch or through the hands of the surgeon. If you are one who prays, I would so appreciate you joining me in prayer thorughout this process. If you are not a person who prays, I ask that you join me in believing for my complete recovery.

Specific Prayer Requests:

– Successful Surgery (August 22nd 2017)
– ZERO Complications post operation
– Abnormally successful recovery
– Sanity (not be able to work is going to prove difficult for me)

Those who I’ve had a chance to speak with ask me how I’m doing with this news, and truth be told, it is a lot to take in. However, I am BEYOND greatful that this was revealed before the damage would be irreversable.

Thank you again for taking the time to walk through this with me. I will post updates as I get closer to surgery and will have one of my family members keep this page updated during and post surgery.

John

3 Replies

  1. Theresa Reply

    I will keep praying for you. And watch this fire for updates.
    I will bring food when you are out of surgery.
    Hugs!

  2. Loretta Grapes Reply

    We are praying for you John.

  3. Debi Fettig Reply

    You will be in prayer by me and my church John. I have known your Mom since high school days. We lost touch along the way and social media brought us back. God Bless you and I will follow your progress. God is good!

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