Nina’s Story

Site created on April 2, 2009

Welcome! This is the best place to get updates while I'm in Miami.  Please DO NOT feel you need to donate to CaringBridge... We have, and I am disappointed by how overwhelming their asks are.

Visit often to read the latest journal entries & look at photos, and please scroll all the way to the bottom of this page to send me "Thoughts & Well Wishes" -- I will download them when this is all done and save them in a scrapbook to be treasured. Thank you for your loving support!  I am so grateful.

Click on "Keep Reading" for the story of what brought me here...

Long, long ago, in the summer of '82, a 7 year old girl ran across the highway to get a butterscotch dipped cone, her yellow pigtails flying.  If she had looked both ways (like her much smarter big brother did) she might have seen the line of traffic fast approaching.  But it was too late. A car going around 50 mph struck her, and Jed watched in horror as his sister did 3 flips in the air and landed on her (very hard) head.

Thus this story begins (maybe).  No broken bones and barely a bruise.  I was loaded into the ambulance unconscious, but soon started chatting up the EMTs and was sent home with a minor concussion.  Had to stay up all night eating... ice cream.  Exactly what I'd wanted all along!

In 2004 I started feeling pain in my ribs and back.  The local docs checked me for kidney problems and then told me it was all in my head.  Almost a year later, as the pain worsened and began to significantly impact my life, I went to a great doc in Seattle.  He sent me for an MRI, and lo and behold I had a syrinx.  He made a phone call and 15 minutes later I was face-to-face with Dr. Ellenbogen, Chief of Neurosurgery at Harborview and one of the country's leading experts on syringomyelia (SM).  He sent me for an SSEP (50% motor neuron deficit on right side) and a cranial MRI ("Damn.  Too bad you don't have Chiari, 'cause then I could fix you.  As it is, there's nothing to be done but manage your pain as it progresses.")

I wanted a second opinion, so Dr. E sent a letter to The Chiari Institute in NY and I got a private session with their founder, Dr. Milhorat.  Dr. M thought scar tissue was tethering my cord (possibly from that long ago car accident), but believed it was too diffuse to ever be able to be fixed.

I sent my records to doctors all over the country, asking for opinions.  They all turned me away with a simple "Good luck." -- including Dr. Green in Miami.

Brendan wasn't going to let it go at that.  He had to deal with the daily pain I was in.  So he scheduled for us to attend the 2006 ASAP National Conference in Denver (see "Resources" tab for more).  Terry & Lo came along for the ride (I still believe they thought we were too dumb to figure it out on our own -- and maybe we were).  Our friends Aaron & Jocelyn from Portland, OR, were also there.  Lots of fascinating and depressing and inspiring information.  When it all wrapped up, Terry had the answer:  Dr. Green, who had told him that he loved to solve mysteries.

I was pretty sure this was a ruse to get us to visit Key West, and I happily played along.  Until Green's office replied with another "Good luck in life" letter!  I'd had it.  I was drugged to the hilt, unable to do any of the things I love to do, and minor activities led to days of excruciating pain.  Brendan sent a follow-up letter clarifying that Dr. Green had personally told us to get in touch.  That got things moving for a bit, but no one would help schedule an appointment.  I needed it to fit into one of my school breaks and there was no response. I gave up again.  I focused my energies on going for one final hurrah vacation instead.  At the last minute, Lo sent an email directly to Green saying, "How are you going to solve my daughter-in-law's mystery if she can't get in to see you?" He forwarded that to his staff and they got jumping!

I went through another 2-day round of testing -- it felt like the same old stuff and I imagined the same old outcome.  Brendan, Terry, Lo, and Matthew all drove up from Key West for the actual appointment.  We waited for hours.  I lay there, expecting nothing, and then Dr. Green entered saying, "I can fix this.  I'll have you breakdancing!"  I think I screamed.  I can't remember.

Being pushed around in a wheelchair after that felt just fine.  Because all of a sudden I could let the tiniest ray of hope in -- maybe this misery wouldn't be permanent!

I scheduled surgery for the minute summer break started.  June 21, 2007.  Solstice.

It was living hell.  They removed the spinous processes of 6 vertebrae, opened the dura, and micro-dissected scar tissue that was tethering my spinal cord and the surrounding nerves.  As soon as it was over I said, firmly, that I would never go through that again.

Yet the results were stupendous, as anyone who saw me in spring and summer of 2008 can attest.  Despite going through a heart-wrenching divorce, I was on cloud 9!  I hiked, I swam, I walked and danced and played.  I even took a breakdancing lesson, courtesy of Terry & Lo.   I had my life back!

Then the pain started creeping in and by mid-winter 2008 I was back on meds.  It progressed quickly and I was scared of permanent damage.  Dr. Green performed a second surgery on cinco de mayo, 2009. Again, it worked wonders... but the healing was a bit slower, and got interrupted by a car accident in 2010 that broke 4 of my transverse processes. I did some traveling -- to Mexico, Guatemala, and Nepal -- but not with the same abandon as before.

So here I am. Grateful to be alive, grateful to have another opportunity to untether my cord, and grateful to all of you for being in my life.

Hugs and love,
Nina

Newest Update

Journal entry by Steve Page

Dear CaringBridge friends of Nina -- In the last week of her life, Nina recorded with Dr. Deborah Giles (Giles) a number of wonderful podcasts to share her life memories, thoughts, values and opinions with the rest of us.
The audio files are now at www.ninadreamer.com. 

Click on the Podcasts link and scroll down. Nina instructed there is no 'order' to these recordings, which total almost seven hours in eight sessions. Although they are titled, they ramble in a delightful way on a river of her laughter.  In her words, "Enjoy!"
Patients and caregivers love hearing from you; add a comment to show your support.

Comments Hide comments

Help Nina Stay Connected to Family and Friends

A $30 donation to CaringBridge powers Nina's site for one month. Will you make a gift to help ensure that this site stays online for them and for you?

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top