My Story

Here is my story that was used at the CSF Dinner Dance for a Cure.

My name is Melinda and every day I fight to end Chiari.  Not only for myself but for my 2 children.  As a family we know how devastating Chiari is. There is not one day in my life that I do not feel the effects of it, and detest the very word.  My story started a long time ago, but I was only recently diagnosed.

As a child I was always sick.  I never felt good and my head always hurt. I can remember going to school and praying for the day to end.  I hated school. The classrooms were hot and made me feel icky.  My head ached, and I wanted to play but most days watched as my friends played.  Learning to read was a challenge.  I tried to explain how the words danced about on the page and made me sick, but everyone said my eyes were fine.  I struggled but pushed onward.  I remember many nights laying in our living room, the scratchy couch under my cheek, the cool darkness of the room, my mom chatting in the kitchen while washing dishes.  I wanted desperately to get up, but I could not.  I hated riding in the car.  Some days were so bad when my mom even moved the car my eyes would shut and the tears would run down my cheeks.

As a teen I struggled with not being able to keep up with my friends.  Getting sick at the worst moments like on trips with friends.  I begged the doctors to help me. My mom took me to one specialist after another.  I was finally diagnosed with Endometriosis and Migraines.  None of the treatments really helped.  I was still in pain.  In college, my symptoms were awful!  I was taking a full load at school and working 3 jobs.  I never stopped. And my body felt it.  I pushed through pain and kept going.  At this point, I was done with docs.  I figured I would just drink lots of caffeine, not sleep, and keep myself so busy that I would not dwell on how bad I hurt.
This worked for awhile until my body would just crash.  Then I would take a week to recuperate and go right back to the craziness.

Then in my late 20's I felt pretty good.  I had several years of health.  I married and was pregnant with my first child.  During the pregnancy I developed horrible headaches again, and kidney stones.  After a 26 hour labor, my son was born.  I felt ok for a few years, until I was pregnant again.  While pregnant with my daughter the sickness and pain was horrible.  I had kidney stones that blocked the exit of my kidney.  I had to have a stent placed while pregnant.  I was terrified.  The stent helped and I made it through the last 2 months.  After my daughter was born I had surgery to remove stones.  My last pregnancy several years later also took a toll.  I lost feeling in m right leg and dragged it for the last few months.  Only 6 months after my son was born, my daughter underwent brain surgery.  She needed to be lifted and carried.  Then 6 months later she had spinal
surgery.  Six months after this we moved, and this is when my body spiraled out of control.  I could no longer ignore how much pain I was in.  I needed answers.  I had 3 kids who needed their mom.

I started researching my symptoms.  I had many of the same symptoms my daughter had.  I found a few docs I thought could help me.  One was a spine surgeon and one was a geneticist.  They both confirmed I had a Connective Tissue disorder called Ehlers Danlos Syndrome.  The geneticist also diagnosed me with Postural Orthostatic Tachychardia Syndrome.  I underwent surgery last September to fuse my c1-c2 vertebra.  But the pain has not stopped.  I saw my daughter's neurosurgeon in June of this year.  He confirmed that I had Chiari I Malformation.  He also felt I had flow issues because the base of my brain is so large at the opening of my skull.  He recommended a decompression surgery on my brain.  I am also on a waiting list to see a heart specialist about my POTS and possible Mast Cell diagnosis.

Every day is an uphill climb.  I try to do the climb with grace and love.  Even though I hurt every moment the pain varies.  Some days I can push onward, others it is hard to even get out of bed.  But as a mama and wife my job is never over.  So for their sake I do not give up.  I will keep looking for answers and a way to make it!