Spoonie Story: Heather

My name is Heather, and I am currently 30 years old. I suffer from Chronic Pelvic Pain, some chronic bilateral knee pain, IBS-C (C for constipation), migraines, and worst of all, Chiari Malformation. My Chiari is not formally diagnosed yet, but the MRI evidence and symptoms are there.

spoonie story heather

My Chronic Pelvic Pain started when I was still 26 and still Active Duty Army. No cause was ever found, despite extensive work-up. My knee pain also started in the Army while I was 22. My right knee has a partial ACL tear, and my left knee has some early degenerative arthritis, but that didn’t start until 2 years later. My IBS and migraines started in my teens. My Chiari symptoms likely started in the summer of 2013 when I was around 28 (my birthday is in the middle of summer).

My migraines weren’t responding to Excedrin as well as they did before, but it wasn’t until after I was medically retired in early 2014 that I had imaging done on my brain and the cerebellar tonsillar ectopia was found. They haven’t diagnosed is as Chiari Malfomation because most medical providers still go strictly by the old measurement criteria. I finally got my doctor to put in a referral for me to see a specific specialist, so hopefully I can find better treatment options.

I still try to do what I can despite my symptoms, including fun things like attending a Like A Storm concert last night. I knew what to do ahead of time so that I could enjoy the whole night… and yes, I do have a jar with spoons in it on one of my necklaces there. I also made a small poster for the concert last night too. Didn’t hold it up, as it was a small venue, plus I don’t care for too much extra attention, but I did at least get my husband to take a pic of me holding it up before the show.

spoonie story heather2

2 Replies to “Spoonie Story: Heather”

  1. Heather, my name is also Heather and I too have Chiari Malformation. I was aware of Chiari Malformation as one of my best friends from high school has it really bad and she formed a non-profit organization for those suffering from Chiari Malformation. She has TONS of info in it and referrals to the top Chiari specialists in the country. Please get in touch with me if you would like her information. I know she’d be happy to help you in any way possible. You can reach me at mizzhiz@gmail.com. In the meantime, hang in there. I know all about the good days and the bad.

    1. Hi Heather! I originally wrote this story in November 2015 , then was finally diagnosed on January 25th. I had a decompression done on April 6th, and recovery has been rough so far. Then again, it’s the most invasive surgery I’ve had so far in my life. I did a lot of research on Chiari before I was finally diagnosed. So far, the surgery has helped, but I still have a long way to go with my recovery. I hope your journey is going well.

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