My son Ethan has an Arachnoid Cyst pressing on his brain stem. He was diagnosed at three years old but told that his cyst would never grow. We were told to have an MRI at age 8. We went to a different doctor this time and found out his cyst had grown by 30 percent. Two weeks later, my son was having brain surgery due to the symptoms he was experiencing. After surgery, a couple months later, we found out that my son’s cyst had almost grown back to the same size it was previously.

Right now Ethan’s Arachnoid Cyst is stable. I started a foundation due to the frustration and lack of research and information to help him and kids like him. As parents we felt very lonely in this process and we don’t want anyone else to experience this loneliness. We are working towards adding neurosurgeons to our Medical Advisory Board right now. This foundation is called Pediatric Arachnoid Cyst Foundation and can be found on Facebook, the web, and twitter.

During this entire process, Ethan has been strong beyond words. Yes he has been scared and anxious, but he has had to endure things that most adults wouldn’t have had to endure. Watching your child not accept pain medicine in the hospital, so he can go home faster is mind boggling. During this process everyone nicknamed him “Ethan Strong” because that is what his name means.

Ethan is my hero.

8 thoughts on “Ethan Strong, Inspiration Behind Pediatric Arachnoid Cyst Foundation”

  1. Shelly Marty says:

    Thank you for sharing your story! I have a 11 year old boy who is has this rare arachnoid cyst and autism we have the perfect storm! Any news or updates would be so appreciated.

  2. Kara D. says:

    I enjoyed reading about Ethan. His story makes me feel less alone in my quest to help my son, Erik. I was so thrilled to discover your website. Erik has an arachnoid cyst of the left posterior fossa and has had surgical fenestration. Some of his severe symptoms are greatly improved but he still experiences almost constant head pain.

  3. maureen mcgee says:

    Hi very interested in your foundation my son has an arachnoid cyst I’m having a terrible time getting doctors to listen they keep saying its not the cyst that’s causing all the problems an neurological symptoms there nothing wrong with him!!! I think the cyst swells it causes him so much pain he butts the walls and no one takes any notice especially doctors how to help an someone to listen ? Been trying for 5years !!

  4. Jessica says:

    Please follow us on facebook for updates!

  5. Mark Connell says:

    Parents don’t let the medical field sweep us under the rug. I had my first arachnoid cyst surgery in ’09, at age 37. First scan you couldn’t tell the difference between my left and right lobes, due to the pressure from #Acyst in my front right lobe. My cyst was found and a week later; I had my surgery in ’09. Fast forward to 2015, I’m going on day 50 of a constant headache, pressure, unable to sleep long and when I do the pressure is worse when I wake up. My neurosurgeon no longer does brain surgeries. We must unite in this “pursuit of happiness”, its a simple constitutional right your kids and everyone suffering with #Acyst is being denied. The antonyms to pursuit are retreat, surrender, and we must do neither. “The time to #Acyst is now”; “No cyst left behind”.
    Email me your stories at acyst@outlook.com, lets ignite the long overdue conversation. Help me worldwide trend the #Acyst, use it two fold; as in time to #Acyst is now or I vow to #Acyst.
    This invisible enemy must be seen, and I believe we can open peoples eyes. The suffering is real, I know; the frustration is real, my wife and me know.
    I’m here and ready to #Acyst.

  6. Trent l C says:

    Please follow my wife seana spaghetti @ Facebook
    My name is trent
    I have an arachnoid cyst
    And my neurosurgeon is very great
    And pain medication is the only way to become active so you can become active again
    I love the outdoors

  7. Shanoma says:

    I was diagnosed with an arachnoid cyst 7 months ago…. A head ache /pressure started out if now here and didn’t go away at all… (Never had headaches beFore) it got so bad a week later I went to the hospital 4 days in the row they said it was due to “breastfeeding” my newborn 🙄 I made them do a ct scan and they found a massiv arachnoid cyst only one surgeon would do surgery he did something called fenistration and was suppose to have an amazing outcome. Welp, last week had to have a shunt put in. 🙁 this is the brain tumor we have to live with…. I hope this nightmare goes away from anyone with this horrible thing!

  8. Christina says:

    My name is Christina… until today I felt SO ALONE. I was diagnosed with a subarachnoid cyst at age 5, by age 30 I was having full blown tonic-clonic seizures (sometimes more than 30/day) the doctors sent me home to die several times. I sought a second opinion after waking up in the hospital tied to a bed in 2015 following a 2 day marathon of status epilepticus. I am 37 years old now and look at and hug my 9mm pistol tight…Often crying and begging for the strength to keep it out of my mouth if only for that day. I have a whole team of wonderful and educated doctors who just don’t know any better, they were taught to follow the book and the book is OLD my brothers and sisters. My cyst measures 4 x 3 x 2 centimeters located behind my right eye currently. The pure HELL this demon unleashed on me my entire life has been but a beast with endless hunger and a thirst for our precious tears… accompanied by a thief stealing our time and happiness. Thank you for giving me /us a voice and not letting us feel alone. ANYTHING I can do to help our brothers and sisters would be not only a pleasure but an honor. Again I thank you and wish us all the best

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