I'm new and this is my story: The Aftermath

I’m new here so I’ll tell my story first…
I’ve had symptoms of chiari since I was 16, but my doctor & I assumed I had migraines because the symptoms matched. The numbness started when I was 16 as well, but I didn’t think anything of it & neither did my doctors until I was 24. When I was 24 I was originally misdiagnosed with a sinus infection, laughable considering how serious chiari is. 2 weeks later I had the correct diagnosis and was seeing a NS. I had 6 weeks of research & was resigned to the surgery 3 weeks after my diagnosis.

My recovery was slow and very painful. I didn’t know it but severe damage was done to my occipital nerve, which runs throughout your whole head and neck. I was sent to a neurologist 2 months after surgery for nerve blocks which failed to help longer than a few weeks and eventually at all. Tried a myriad of medications including fentynal, it was pulled off the market for a while because of a defect that killed people by overdosing them. I stopped taking it after realising I was costantly oding on the medication and passing out. Eventually I gave up on medication to help and turned to surgery again.

6 years ago I found an implant that sends electrical pulses to disrupt pain signals. I did a week trial and decided it was for me, it worked wonderfully. For 5 days I was in heaven. The surgery was pretty simple. The battery/implant would go in my chest under my collarbone, the wires leading into my shoulder and then into my head to the nerves. After difficulty in my recovery period it worked great and my battery was supposed to last 10 years. I found out 2 years later when I required another battery that my pain levels being so high causes the implant to be programmed higher and leads to a shorter life span of the battery. I’m on my 3rd battery now.

My last operation was a disaster. What should have been 20 minutes to replace the battery lead to 2 hours and replacing the wires as well. I’m 3 months out of surgery now and have to go back in. One of the wires wasn’t secured properly/ or enough depending on your definition and has moved. The migration of the wire has caused almost half of my head to be without pain relief besides my medications and causes pain and numbness in my ear. My doctor wants me to try taking 2 more medications before doing surgery, but they’re $300 after my insurance and I don’t have the money for them yet.

So that’s my story.
I’m sure a teacher would have a field day grammatically, but you get the idea.
<3 Z

Thank you so much! I haven’t had an EDS workup, but maybe I should now that I think about it, thanks again, for the idea.

Z, google the Brighton and Beighton criteria- a generally accepted way to diagnose EDS. With EDS can come cranio cervical instability. It is painful…the symptoms mimic Chiari. I do not have stretchy, doughy skin but I do score a 9 of 9. If you think there is any possibility of EDS make an appointment with Fraser Henderson, TCI, Rosner, or Theodore in AZ. My 2cents :slight_smile:

so sorry you are suffering. You are one strong zipperhead!


I swore to my friends and family that I was going to develop a zipper we could really put back there, because the healing process is hell! Does that by any chance include weakness in your limbs? Because if it does it would explain a lot.

Jenn, you are amazing, thank you so much!


You are one amazing zipper head :) Keep your chin up and thanks for sharing with us. And remember you are not alone.

Thanks Angelina! I have to say from what I've seen, we're all some amazing zipper heads here! Everyone has been nice and welcoming me here. 17 years is a long time to keep feelings about this stuff bottled up, but after reading through some of the discussions I knew I was in the right place. Here