My Pineal Cyst

There are no medications to make this go away. There is no cure.  It's surgery or suffering.  Though extremely rare, there are incidents of sudden death. 

Hello and thank you for taking the time to read this.
A year ago, I began experiencing episodes of dizziness, weakness, lightheadedness, tingling in my head and extremities, numbness in my extremities, and an overall feeling of unwellness and that something was wrong with me.  It wasn't until a friend and coworker announced she had been diagnosed with cancer that I got the wake up call to go see a doctor and take care of my health.  I'm a single mom, raising two wonderfully amazing children, with a third child already grown, on her own, and in college and her own life.  So I made an appointment to see my general practitioner.  She ordered blood-work, x-rays, and an MRI of my brain.  The blood-work and x-rays were normal.  On June 22, I had my MRI done.  On June 26, 2 days after my youngest child's 11th birthday, my doctor's office called and told me my MRI showed an abnormality and I was referred to a neurologist.  On June 27, I was seen by a local neurologist and informed I had a brain cyst.  He claimed that my symptoms and the cyst were unrelated.  He didn't go into further detail.  Later that day, the MRI results appeared in my online medical chart.  I was diagnosed with a 7mm pineal region cyst.  Since then, I have been frantically researching all the info I can about this condition, and desperately seeking out the best doctors and neurology centers I can find.  I've reached out to an amazing neurosurgeon, Dr. Patel of MUSC, who is a supporter of those of us who have symptomatic pineal cysts, when most doctors disregard it as the cause of debilitating and daily symptoms.  I had been seeing doctors within two of the top neurology centers in the US until very recently, after my second MRI in October.  The doctors I had been monitored by at these "top" centers disregarded the cyst as being the reason for my debilitating symptoms, one actually suggesting that is all caused by anxiety.  I knew I might face this, so now I am seeking out new doctors and hope to find at least one within my vicinity who takes this seriously, or I'll be forced to seek treatment far from my locale.  There are only a few doctors in the US willing to help and treat my condition.  
Living life as I've known it has ceased to exist.  Extreme fatigue, headaches, vision impairment, numbness and tingling in my hands arms and legs, dizziness, weakness, cognitive decline including memory loss, tinnitus, heart irregularity/tachycardia and more plague me every day. I've always been an active person, but now there are days where it's a struggle to even get out of bed. My children's lives have been deeply affected by this terrible affliction.  What am I to do, I think to myself every day now...I am truly all they have in this world.  Since being abandoned by my estranged husband in 2013, life for my children and I have been a struggle. I've been mom and dad to my children.  Doing all I can to provide my children with normalcy.  I've worked every job I could get, while raising my children on my own, and homeschooling my son and youngest daughter.  I do all I can to ensure that my children have what they need.  Although we haven't had much, we've been happy.  I do everything I can to make each and every day joyful.  To appreciate each and every thing.  I want to continue to be able to raise my children to be the kind, honest, loving, caring people they are.   I just want to be made well so I can continue to be there for my children.  I just want to live.  Every day my symptoms increase and new ones present.   I regularly experience what I call "spells" where the symptoms are so strong and scary, I truly believe that I am about to die.  Surgery is my only option. There is no medication or treatment for this condition.  There is no cure except removal.  It's surgery or suffering and possibly worse.  Though extremely rare, there are incidents of sudden death.  I've lost my insurance recently and everything would have to be paid out of poxket.  Travel to one of the handful of doctors who could help me is going to be more than I can even hope to afford.  I am looking to raise the money for travel expenses and my surgery.  Please help me and my little family.   

There desperately needs to more awareness, especially by doctors specializing in the brain, that these cysts are not just incidental findings.  They are the cause of the cognitive and physical decline that I, and many others like me, are suffering from, without any hope of resuming a normal life without surgery.  Any money donated and not used toward treatment will be donated to the American Brain Tumor Association.  Thanks for your help.
Please check out the Pineal Cyst support group: 
https://m.facebook.com/groups/1250022118357103?view=about&ref=content_filter


Please sign this petition at change.org to support my cause for Pineal Cyst awareness:
https://www.change.org/p/world-federation-of-neurology-pineal-cyst-awareness-not-an-incidental-finding-but-a-debilitating-condition?recruiter=918340613&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

Thank you so much.

Donations

  • Anonymous 
    • $500 
    • 1 mo
  • Anonymous 
    • $50 (Offline)
    • 33 mos
  • Ron Griffin  
    • $25 (Offline)
    • 33 mos

Organizer

Danielle Harvey 
Organizer
East Stroudsburg, PA
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