What It Was Like to Have Chiari Decompression Surgery

First, a little background on what Chiari malformation is. Its proper name is Arnold-Chiari malformation and it’s a birth defect that affects the bottom of the brain – the cerebellum. The cerebellum is herniated through the base of the skull putting pressure on both the cerebellum and spinal cord.

The brain produces cerebrospinal fluid which has several functions. It’s basically the brain’s messenger for the spinal cord nervous system that’s made of nerves that communicate with the rest of your body. With the cerebellum herniated through the base of the skull, it prevents the CSF from flowing properly, causing your body to malfunction, resulting in numerous “weird” symptoms.

 

CM is rare and often misdiagnosed as other conditions because the familiar symptoms can be the cause of many other things. A brain or neck MRI can detect CM and determine the depth of the herniation. After diagnosis comes the hard part of finding a doctor who can actually help. There is no proper treatment or cure yet except for surgery. Chiari decompression surgery is where they widen the base of the skull to relieve the brain pressure and to allow the CSF to flow properly. It’s supposed to keep the symptoms from progressing but there is no guarantee it will, so the prognosis varies.

In my case, I had a five-mm. herniation and a lot of fluid buildup. My symptoms progressed rapidly and my body felt like it was shutting down. I was told I needed to have decompression surgery and did in September 2016. Recovery for me was awful. I lost a lot of CSF when they opened me up so my brain was like a dry sponge after. I was warned headaches after surgery could be bad but no words could have prepared me for that experience. I laid in bed for two weeks barely able to move because any unwanted brain pressure would send me over the edge. The CSF takes forever to produce, but eventually I got relief and the headaches lessened.

Not quite a year since the decompression and still healing, I do feel a difference. The headaches aren’t as bad as pre-surgery and even if they were, it’s a walk in the park compared to my recovery headaches. With my brain and CSF communicating better with the rest of my body, I’m able to do more now, just not pain-free. Chronic pain, body weakness, insomnia, tingling and brain fog still linger with new symptoms: shortness of breathe, palpitations, joint pain/stiffness, night sweats, forgetfulness, constant muscle spasms, leg pain, etc.

From what I understand, CM can bring “friends,” other illnesses, and I’m hoping to find out if there’s anything else. Believe me, I don’t want more to deal with, but the unknown is scary and I need to know. It’s definitely a medical puzzle and my doctor said, “Piece by piece we’ll figure it out.” As much as I hate it, it gives me piece of mind knowing I’m being helped and makes it a tad bit easier to accept this painful journey.

The information I provided is based on my own research, my doctor/patient visits and how I understand CM to mean to me. It’s meant for sharing purposes only with hope to shed some light on your journey.

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Thinkstock photo via ZoranMilisavljevic83.