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.


Rachel Schnelker said...

Hey Hilary,
My Mom's friend Elizabeth Lanier told her about your blog. I was recently diagnosed with Chiari, and also have Intracranial hypertension (chiari and IH are linked). I would be very interested in talking to you about your experience with your decompression and chiari. I'm looking at getting a decompression surgery likely in January, I've had three neurosurgeries already this year for the IH and I'm scared for more! I hope to hear from you soon and have a Merry christmas! :)

Rachel Schnelker

BluedoorRedgate said...

I am so glad you are doing well! I just got some new glasses myself and I feel so great about turning 60!

Wildflower Weaving said...

Wow~Chiari~In a hurry to leave for a Thanksgiving trip to MI, I hit my head on the corner of my bureau, staggered a bit, got into the car and 12 hours later arrived, needing to rest, feeling like I was on a boat~ headaches followed for two years, worsened by laying down. Then a huge icicle catapulted when I opened the front door, smashing the top of my head; I blacked out, saw sparks of light and had another year of headaches. I thought I had brain cancer, turned out I had breast cancer, and that was another whack in the head but it took my mind off my headaches. Eventually they got better, mostly!Glad you solved the mystery; it takes a woman warrior to maneuver the medical gauntlet!

Betty said...

I have the "exploding" HA's.
Today I am a 3-4. I would say
for the past 6 months I stay about
a 3-4. There are times it might
spike but, generally it goes back
to the 3-4.

I suffered a chronic 8-10+ for over
a year. I too did the 2 treatments
for sinusitis. Didn't help. I went to the Chiropractor and this didn't help either. An ND gave me
3 different shots of B vitamins and
twice weekly injections of B-12. This helped. I started a diet called the Fail-Safe diet. This diet eliminates foods that are higher in food toxins. This too helped. I now eat whatever I
want and, take B vitamins not shots.
I just this week went to an ENT. They say my sinuses are free of infection. But, I should start a nasal steroid spray. I guess I'll
give it a try.

I did hit my head hard before this, but nothing like your accident. So, I don't think that is it for me. I haven't had an MRI.

I like you have always been able to sleep through the pain, even if it was a 10+. I dreaded opening my eyes the next morning to the pain. I hated life and, was suicidal. I still live in fear of the pain coming on full throttle again. I can live with the 3-4. Yet, not truly happy. This experience has changed me.

This has greatly affected my relationships.

I hope your surgery proves to be a great success!


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

C-ingspots said...

Wow...I've never heard of this condition before. My thoughts would be to assume that the fall was the cause, no matter what anybody else said. I cannot imagine such a headache, and one that didn't go away would be excruciating. Life altering. I will pray for you, for your doctors and hopefully you find a definitive cure. I am so sorry. It's just so amazing to me, that in a moment, a life altering event can change everything. Life really is a precious gift. Something to be treasured and always to be thankful for.

EvolvedSungod said...

I am 25 and have been going through similar issues. For me though it might just be chiari from birth or an early unrecorded accident. I have always had severe migraines and very little has ever helped. I am now facing the option of living with it or getting decompression surgery. I am terrified since all I read is bad news or crippling side effects. I feel like this pain, nausea, and randomly decreased mental ability is bad, but the high risk of other issues associated with any brain/spine surgery might be worse.

Valerie said...


I am sorry that you have had such a struggle. My husband has had the same tormenter for almost 3 years. He is 2 months out from a C1, C2 Fusion, and the Chiari surgery. His headaches are slowly coming back, and we are scared to death. Did the second surgery help you?


Go With the Flow said...

Thanks for your Chiari chiari chiari post and account of your saga. I'll be forwarding this to my lovely daughter Elysia and I'm sure she will contact you. THank you for being YOU!
Debra Wolf

CD said...

Hilary, This post may have explained some issues that I have been having. I fell in February while flat on my face with my head taking the brunt of the impact. I also, went to the ER and many test later was told I had a concussion. Many headaches later was sent to PT. I thought because of all the test given in the ER there were no other issues, but still the headaches and my vision is not the same. Thanks for sharing this and any more info you can suggest would be appreciated. And I just love my pot holder loom! My email is Thanks, Cindy

Sally said...

You poor thing; all those tests not to forget all pain.
I pray you're better now. xoxo

Unknown said...

How are you doing now? I had decompression surgery in August 2013 and it was a disaster. :-(
Is there any advice you can give me how to cope better than I have been?

Sierra Yeager

Unknown said...

Did you get relief?! I am going through the same thing. My headaches stem in the back of my neck in my occipital and I have massive pressure in my temples. They started after a cervical manipulation of my neck and then I had a c1 c2 fusion and they came back a few months after surgery. I would find it hard to believe it was scar tissue as you had the headaches before the surgery without the scar tissue.

Unknown said...

I've never commented on a blog before, but my mother printed your post and gave it to me today to give me hope for my daughter's headache. On March 1st she was given an overdose of anxiety medication at the hospital, lost consciousness while in the bathroom, and, we can only assume, hit her head on the way to the floor. From that time she has had a constant pressure in her head. Her best day is a 3 and her worst is a 9. She has had every test the hospital knew to do without any conclusive results. The head pain is so bad that she is severely depressed, hasn't been able to attend school and hasn't been able to do her homework or run like she used to.
Your entry was hopeful, but I don't know what kind of doctor to send her to next. Do you know what to look for or have any specialists to recommend in Utah?

Welcome to my world.

Because every thread counts

Because every thread counts