The Adventure of Crazy Eric and his Goofy Family.: Klippel-Feil Syndrome

In May 2010, I woke up with a headache and it never went away. That morning started the beginning of my life changing forever.

I visited Urgent Care, Primary Care Doctor, Neurologist, Physical Therapy, and finally a Neurosurgeon.

Through a series of tests, I was diagnosed with Klippel-Feil Syndrome. I was told that I was born with it. It only took 34 years for a doctor to figure it out. It was only because my Primary Care Doctor, Dr Brian Miller was out sick. Which of course was God's provision. I saw Dr Laplant, which I saw as a child. After reminiscing that I made him feel so old, he said, "You look like my roommate in college, he had Klippel-Feil Syndrome. Let's look into that." That started the ball rolling.

I was referred to a Neurologist who ordered an MRI, but said, "it is just one of those things you have, but nothing is ever done about it." He decided that I don't need to be on pain medicine and took me off of it. After the MRI, I was scheduled for a phone consultation to go over the MRI results. However prior to that appointment, about an hour before I received a phone call from a Neurosurgeon's office. They wanted to schedule an appointment after being referred by my Neurosurgeon. That was a pretty long hour to wait to find out what was wrong.

Finally the phone call came... I had a "very dangerous situation". My brain stem was being pinched off by deformities in my spine and skull. Evidently my spine was 2 inches higher into my brain than a normal person. Because of this my spinal cord was compressed. He then put me back on pain medication, as I was not faking it. :)

So finally I went to Seattle to see my Neurosurgeon, Dr Vishal Gala. I was told of my very dangerous situation. I was to have a Cervical Lamenectomy and Cervical Spinal Fusion, c1-6. I was told how this was "VERY MAJOR" surgery. So after a few more tests, I agreed to the surgery. This was the beginning of September. I was told that the scheduler would call to schedule the surgery that would be performed by Dr Gala and his associate, Dr Lee.

Finally the scheduler called. The first available appointment is December 19th!

I couldn't believe I had to wait that long, but I was told because it was a team surgery, they had to wait for their schedules to mesh.

While I was waiting...

I went from a headache, then having a numb left hand. This a numb right hand. Then in the middle of the night I fell in the bathroom - broke a rib. :(

Then my left leg started dragging. I had to forcibly lift was left to walk, it did not come natural.

Then my left hand began to clinch and curl. Finally the weekend of Thanksgiving, I deteriorated rapidly. I could not walk, I could not unclinch my left hand.

We went to see Dr Gala right away, and he was amazed how fast I had deteriorated. Moved the surgery up to next week. Dec 2, 2010.

After a 12 hour surgery at Virginia Mason in Seattle - that was horrific, I came out of surgery in massive amounts of pain. It took them 3 days to finally get the right type and amount of pain medicine. This process is something that I would not wish anyone in the world to have.

After surgery, my walking improved dramatically, although not even close to normal. My right hand was no longer numb. My left hand began to un-clinch after being put in a customized brace. The surgery was a success, although a long recovery would begin. After 4 nights in the hospital I was able to come home. I had to use a walker to walk. Very painful. I was told after surgery that I was 2-4 months away from full paralysis that would not be able to repaired. They saved my life.

After this was the recovery and everything was getting better until one day it stopped getting better and new symptoms arrived... Which I will explained in a post to come.

Below are the pictures...