First I would like to thank the creator(s) of this group. I’ve read many of the stories and it sounds just like me and after this ordeal I get I’m not alone or delusional.
My story begins a year after I came back from a 15 month deployment I noticed I started having really bad headaches. 2011-2012 I was referred to a neurologist and was DX’ed with migraines, Occipital neuralgia, tension headaches etc. I was give two types of nerves blocks and medication and sent on my way. That’s seem to work out fine. However, in April 2020 I started to have this headache/migraine like none other. I’ve seen my rheumatologist Lupus/ Fibromyalgia and the neurologist a few times. Weeks than months went past and nothing was working. I became almost bed ridden. 3 months in a MRI CT ordered showed nothing. So now you know they really started to blow me off. In six months I had 5 ER visits. Once again treated like I was looking for drugs. I had an appointment with my primary and she suggested I go to a place called the Diamond Headache Clinic in Chicago. ( I’m in the suburbs). On my first visit she admitted into the hospital and did another MRI. Than the news came. You have Chiari Malformation type 1 with the tonsils 1 centimeters mostly on the right. ( end of Oct)
Over the last six months I’ve been experience odd symptoms but they contributed to my pre existing conditions. I kept telling them that NO this isn’t the same. All of a sudden my face feels like fire ants is eating my hairline. I’m using the bathroom every 1 or so like I haven’t used that bathroom all day. I’m experiencing vertigo and haven help me if I bend down, cough, sneeze or anything.
To make a long story even longer I fired ALL those drs and the hospital. Even though I don’t want this condition but with the Dx I feel vindicated.
I haven’t had an appointment with a new neurologist yet because I’m researching with hospital will be able to fit my medical needs. I’m looking at RUSH or UIC. I have a multitude of issues since my return from my deployment and I’m a retired Army Vet. I haven’t made a decision one way or another in regards to surgery. I prefer not to because I’ve had many surgeries in the past and really don’t feel like going through the recovery stage.
Once again thank you for the add.