Crazy as a Loom


Or better: Chiari, Chiari, Chiari.

Why do I repeat myself, you ask?  Because I want the search engines to find it, if some person like me is online looking for it.
My story started last August, the 11th to be exact.  My father's birthday.  I was hiking with my daughter and two grandchildren.  I put my foot into the lake, and the slippery, slimy rock that met me, threw my body backwards through the air, and  I landed flat on my back on a huge rock as big as a room, my head snapped back in a whiplash action, and struck same rock so loudly I heard it myself.
I have never hit my head that hard.  My first thought was that I must have a fractured skull.

I did not pass out, but I was confused.  I spent about 5 hours in the Emergency Department, where they did a CT scan of my neck, and cleared me to go home, diagnosis: concussion.

After a week or so, my head began to feel better, and I seemed to have no residual.  I hiked in Acadia, I did a lot of weaving, I worked, and kayaked.
Then in about 8 weeks, I got the headache.  It centered behind my eyes, from temple to temple, from hairline to the tip of my nose. I had this headache 24 hours a day, 7 days a week, for 10 and 1/2 months.
I will list the things I tried:
treatment for sinus infection X 2, antibiotics, steroids.
Motrin, Fioricet.
Then an MRI showed that I had a Chiari Malformation I, which was thought to be incidental.
Saw a neurosurgeon who want to do decompression surgery on the back of my head for Chiari.
Went to a second neurosurgeon, who could not pull my MRI up on his computer.  He pretty much blew me off as far as Chiari.
He said," You've had this your whole life, if it never bothered you before, it will be normal again.  Forget the Chiari."  He promised to look at my MRI on a computer at the hospital.  He never did.
His diagnosis: post concussion syndrome.  Referral to a neurologist.
Went to the neurologist, who did not look at my MRI.  He also said that it could NOT be Chiari, and that he was so glad that I had not pursued that course of action.  He ordered Physical Therapy, and put me on another NSAID for the pain.
I started PT.  This was the only time I was pain free in the whole 10 and 1/2 months, and that happened when I was put in head traction.  Unfortunately, as soon as the head traction was taken off, the headache came back with a vengeance.
On my own, I had massages.  I did acupuncture for weeks.
Some weeks, I would get a break, my headache would recede to a 3-4, and it would be like heaven.  But mostly it was a 6-7, and 8-9, and often a 10.  I came home from the weaving studio that I love many, many days by noon.  I stopped doing the things I loved.  Most events, family gatherings, things that should have been fun, were not so much.
Finally, I went to a headache clinic.  The neurologist there said he could help me.  He looked at my MRI, and said, NO, not Chiari.  That was most certainly not the problem.  He did 13 trigger point injections in my spine, before I finally had had enough.  They were incredibly painful, I never got one moments relief from any of them.   The clincher was the last injection, that inadvertently hit my laryngeal nerve.  I couldn't swallow my own spit, a very scary thing.  I had to sit for 3 hours, until it went away.
That was enough for me.
Through all this I kept going back to my primary, and saw the same PA every time.  He called the Chiari Institute, and had me send my MRI, and make out a lot of paperwork.
They called and accepted me.
My appointment at the Chiari Institute in Great Neck, N.Y. was on the 22nd of August.
My doctor was Dr. Harold Rekate.  He is the kindest, doctor I have ever met.
Right away, he told me that it was 'complicated'.  He sat my daughter and I in front of my MRI, the same MRI that I had been dragging around since November 2011.

Here, in a nutshell, is what he said to me:  I was not born with Chiari.  When I fell last August, I damaged the ligament that holds the tip of my C spine up straight.  So my C spine flopped down, and pushed into my brainstem, which in turn pushed the brain in the back of my head back and down into my spinal canal.  Voila: Chiari. Because Chiari is simply a herniation of the brain, and Dr Rekate says that it ALWAYS has a reason.
My floppy Cspine and resulting Chiari is called basilar invagination.

He also told me that most other neurosurgeons, would in fact, just do the decompression on the hernation of my brain, and nothing about the C spine, but in his opinion, I would be back in 3 months, with a headache.
So I decided to have it all fixed.
On August 28th,2012,  I had decompression surgery at Northshore University Hospital in Manhasset, NY, and at the same time, I had fusion of C1, C2, C3 with two rods and screws.
My head is very sore from the instruments they used to immobilize my head.  My neck muscles hurt a lot, they spasm on occasion.  But the pressure behind my eyes is not there.
I am hoping for a full recovery.
The CT after the surgery was "perfect", and I am scheduled for an MRI in two weeks.

To hear a lecture by my very own doctor on basilar invagination with Chiari, here is the LINK

And by all means, if you have questions about my experience, leave a comment with your email address, and I will get back to you.


My headaches returned slowly, and were by 6 months after surgery once again intolerable.
After MRI and Ct scan, it was determined that scar tissue was the issue.
I had another surgery, 3 hours this time, to clean out the bone overgrowth (possibly caused by a bone morphogenetic protein they used to  help fuse my spine) and tons of scar tissue.
I am two weeks post op right now, and feel better than I have in a year and a half.
I am hoping this is the fix.

1 comment:

Nancy said...

I have been away from blogging so didn't know the outcome of your terrible, constant headache. I am so glad to hear you finally had surgery and relief! Best wishes for good, pain free, health! Nancy

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