Story about Arnold Chiari , Dysautonomia / POTS, Cluster Headaches.

My Story

Dec 2, 2

By: Sandy


I started getting extreme headaches when I was in the 9th grade. Of course back then they didn't have the technology like they have now, so on medications was my only support from the doctors.  As I got older those headaches got more worse and the medicines started to stop working. So many things started happening in/at the same time! I passed out while driving when I was 30, and 3 weeks later in the hospital I was given a "tilt table test" and passed out again! Ugh! On top of migraines I now added Neurocardiogenic Syncopy. I was 26 when I was diagnosed with Hypoglycemia, 34 when I was diagnosed with Endometriosis (had a complete hysterectomy in 2005), I have had 2 bouts of cervical cancer and a grapefruit sized cancerous tumor in my uterus. In 2012 all meds stopped working! I was spending so much time in ERs for pain until after battling a 3 day mean migraine I was sent for a MRI and it showed I had a 10mm herniation and the newest addition is Chiari Malformation.  My 1st decompression surgery was 2013 and the surgeon (was a idiot) did a shady job and refused to help me when more symptoms started happening. I was told "my job is done, you'll need to find a neurologists to help you". Finally found another NS who was willing to take my case and was willing to approve another MRI approx 10 months later! (Irreparable damage). I had a large hole in the patch to my dura that was clearly seen! Had my 2nd surgery in 2014, 2nd NS fixed the patch to my dura, enlarged the area around my C1 and removed a substantial amount of skull along with a excessive amount of scar tissue.  I was told that he couldn't guarantee it would make me all better, but he knew he could correct what the 1st NS failed on. I was told of the dangers of a 2nd or even more surgeries (less than 25% was what I was given).  I will never be the person who I used to be! I have a list of things I no longer able to do that is so much longer than the list of can do's! Chronic pain is something that is very difficult to deal with, but I know how blessed I am that my eyes open everyday. God only gives his strongest soldiers the hardest tasks! 

May add more later....

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