My Wonky Brain Tail

September is the month designated to Chiari Malformation Awareness. ef5782eb529d58d6a69aa9d947ef46e4I thought it only fitting to write today’s post about my wonky brain tail. Sunday’s blog posts are usually reserved for inspiring people. I am changing up my guidelines a bit to include this little feller.

You are probably asking yourself, how in the world is her wonky brain tail an inspiration? It’s simple really and I can sum it for ya lickety split.  I’m inspired to kick its’ ass on a daily basis. There you have it.

This blost post is not only dedicated to my pesky protruding tail but to those individuals that suffer daily from this congenital birth defect. Keep on keepin’ ladies and gentleman. Wake up  with an “I’m gonna kick your ass mentality” everyday.

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Hans Chiari

Arnold Chiari Malformation was discovered by an Austrian dude named Hans Chiari in the 1890’s. Its’ namesake however, lies with Julius Arnold who further explored Chiari Malformation.

Chiari is considered a rare disorder but as of late, advances in medical imaging are making diagnosing the skull malformation easier.

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Julius Arnold Chiari

A simple explanation of the malformation is that Chiarians skulls are abnormally small which causes all kinds of issues. 51c2a6732dd66e14ef8fbb23d5269c87Some cases are diagnosed at birth, others like mine, are not diagnosed until adulthood. Many, plagued with a tiny skull are asymptomatic until early adulthood.

Symptoms vary. Common symptoms include: neck pain, balance issues, poor coordination, vision problems, ringing in the ears, weakness, slow heart rhythm, scoliosis and sleep apnea. Of the symptoms listed, I experience all but the heart thing, scoliosis and sleep apnea. There is no cure.

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Not this kind of ear ringing, silly!

I was diagnosed with Chiari in 2004 at 31 years old. The first sign I can recall was a ringing in my left ear and horrible pressure in my  head. I honestly thought I had a sinus infection. My “sinus infection” persisted for several months. I knew something wasn’t quite right when I started walking into walls and dropping things. The pressure in my head continued to progress. It felt as if I needed to have a valve stem inserted to let the pressure out.71870d2642638595706a6d85d1412ff7

Eventually, Stuart convinced me to make a doctor’s appointment. I started with  my primary care physician. He referred me to a neurologist. The appointment with the neurologist was pretty uneventful. ” Mrs. Peters what are you experiencing?” I don’t remember my exact words but I’m sure they were something like, well, doc, I run into walls. “Put your hand out to your sides and now, touch your nose. Squeeze my hands. Walk across the room.” I’m sure after watching me stumble like a drunk across the room, he knew something wasn’t quite right. An MRI was ordered STAT. I had the results within a few days. I was immediately referred to a neurosurgeon. That appointment was made and if I remember correctly I only had to wait about two weeks to get in. The surgeon explained that all he needed to do was remove a little skull to make room for my crowded brain and help get my spinal fluid flowing again. It would be a 4 to 5 hour operation and I’d go home within 48 hours if things went as planned. Without hesitation, my response was when can you do it? Two weeks later I would have a posterior fossa decompression, laminectomy of C1 and C2 followed by some shrinking of my wonky brain tail. I was getting my valve stem installed and then some, so to speak. I came across this animated video. It’s the best explanation I have found to date. It gives a brief visual explanation of the surgery that I’ve had twice. It’s not graphic in nature and it’s only five minutes long. If you’re a zipperhead, you really need to watch it. If you love a zipperhead, I think you should watch it as well. Chiari Surgery Video 

I was home within two days. unnamed (4)After healing from a little case of chemical meningitis a month into recovery, I was good to go. I still experienced headaches but nothing as extreme as prior to surgery. My balance was still a little off but life was doable again.

Ten years later, my ‘ole wonky brain tail started giving me fits again. Back to the docs and surgeons. This time, my symptoms were much more prominent. Headaches were debilitating and balance issues were amped up. A few new things started popping up. I was stuttering with every sentence and vertigo became a daily ordeal. Oh and I passed out if I laughed too hard.  The surgery from 2004 was repeated with the addition of scar tissue removal. d05ef3103048f41d5ac982e7b843b015

A little older, a little longer to heal.

In less than a year after the second surgery, I started stuttering again. My vertigo attacks were lasting from 24 to 72 hours at a time. I walked like I had suffered a stroke and I passed out multiple times a day. I will spare you all the mundane details, just know that it took almost a year of doctors appointments and fighting with the insurance company to finally get a surgeon who would diagnose the problem. FB_IMG_1523405914430

Long story short, the first surgeon didn’t remove enough skull and the second surgeon removed too much skull. The third surgeon lifted my brain out of my spinal canal with a titanium plate.

Dr. Rob Parrish was a God send. I would not have found him had it not been for two zipper sisters on a Chiari Facebook Group. I thank God for placing them in life when He did. Meg and Ashley, if you are reading, you know I love you!

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Dr. Parrish – my hero!

Today, I still have intense ringing in my left ear, severe hearing loss in my left ear, horrible pressure headaches, burning in my spine as well as, relentless and unpredictable vertigo attacks. I’m better off than I once was and for that I am grateful.

Chiari has robbed me and others of a sense of independence. I can no longer teach full time. I made the decision last year to spare students, co workers and administrators the burden of dealing with a wonky girl and that entails.

I take advantage of every single good day I have, sometimes to a fault. It’s been said that I do too much. There are days when I feel like I’m not doing enough. When I feel good, I’m on the water, fishing. I think I feel like I have to squeeze every bit out of every good day because I know what it’s  like to think there are no more good days ahead.

I’m not angry anymore. I’ve accepted my new normal and reinvented myself accordingly. I read a quote the other day that really got to me. I’m not sure who said it but it really stirred my soul. “The problem is, you think you have time.”

Chiari, chronic illness, mental illness, whatever ails you – I challenge you to get up and blow the stink off ya today and everyday. Smile though your heart and body are breaking. Gotta love it when words from one of my all time favorite movies, Hope Floats, are applicable in a situation. By the way, I love me some Harry Connick Jr.

I’ll leave you today with one of my favorite songs, Smile by Graham Johnson.

10 comments

  1. Thanks for sharing your story. My wife also had the posterior fossa decompression surgery, and the neurosurgeon took off too much of the skull. She had a CSF leak and was in the hospital again for a second surgery a few months later. We’ve sinced changed neurosurgeons, we have a someone who is Chiari aware. Last year we thought she would also need the titanium plate, but for now that’s not needed. We’re considering going to one of the few true specialists in the US, even though it’ll require a plane ride. There are only a handful around as I’m sure you know.

    • Wow. It this is not the first time I’ve heard this. I will tell you the plate has improved my quality of life immensely. I finally found someone who was more familiar with Chiari than the others I had seen over the years. He truly saved me life. I believe I was on the verge of death. Will you be going to New York? I do have a great surgeon here in Houston if y’all ever want to give him a go.

      • We were going to go to NY for a second opinion, as it’s much closer to us, but we found out that the doctor we were going to go to has a lot of lawsuits against him and one of his patients died. There’s another in NC we may be going to. Is your doctor in Houston a Chiari expert?

      • That is what I was to mention. Dr.Rob Parrish at Methodist is my guy! Expert, I wouldn’t when to say know I guess. He is however the only one who would acknowledge what had been done to me at the hands of the second surgeon. I will go to main again If ever I need to.

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