My Life with Chiari Malformation

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Do you feel Tired of going to the Doctor? Feel free to share it with us! 

I have had pressure migraines my entire life. Pressure when I laugh, cry, weather changes and of course just the normal ones. In September 2016 my new PC ordered a CT scan which found Chiari Malformation 1. I was referred to a neurologist in Brunswick since not many doctors are familiar with the condition.

After oral medication and injections were not helping with the pain, I was referred to a neurosurgeon.

Read more: Diagnosis – Chiari Malformation

In July 2017 I had a bone only decompression and my C1 removed to make remove for my cerebellum. Unfortunately, the surgery was not successful and within 4 months of surgery, all my symptoms have returned plus some. I know have neuropathy in all limbs, nerve damage in both arms and have to wear wrist braces to bed.

There are days in my life where I can almost forget about my condition, I live a good full life. Most of the days are not as good. I know that I can fight this condition and that I am stronger than this. Nevertheless, it’s hard going to the doctor and not knowing what else they are going to find.

AT THIS POINT, IT FEELS AS IF EVERY TIME I GO TO THE DOCTOR I GET A NEW DIAGNOSIS. ON TOP OF DEALING WITH A MIGRAINE AND NECK PAIN ALMOST DAILY.

Read more: The Downfall of my Migraine Medication

There are only so many medications and injections you can do.

Do you feel Tired of going to the Doctor? Feel free to share it with us!