My story is long, so I apologize ahead of time.
I have had neuro problems for the past 33 years. I was diagnosed with epilepsy when I was twelve years old. I have been on many meds and the seizures were controlled well. In 2002 I had a grand mal seizure (I was seizure free for the previous six years) and at that point my meds were changed by my new neurologist. After that seizure my body physically changed and has never been the same. It began with a constant tremor in my left arm and symptoms have progressed from there. I have the following symptoms and they exist every minute of every day: Tremor in left arm, vertigo, floaters in my vision, tingling in left arm, a deep dull ache on my entire left side, numbness on my left side, extreme ringing in left ear, occasional tachycardia, anxiety, poor coordination in my left arm and hand, poor gait in left leg, pressure behind eyes and left ear and grinding/pain in my neck. However, I do not get severe headaches.
I have kept a positive attitude and learned to laugh at my problems until this past November. The symptoms rapidly became worse and I knew it was time for something to be done. My sister has Chiari and was decompressed in 2002 with great results. Since my symptoms are very similar to the ones she had, I saw a neurosurgeon and discussed it with him. He actually listened! I cannot have an MRI because of a metal implant, so he sent me for two CT's and a myelogram. The results are Chiari1 with an 8mm herniation but he says there is "some" CSF space. I asked if "some" was enough and he didn't know. He seemed willing to pursue the option of surgery but then had a "conference" with a neurologist and they denied surgery. Insead, I now have an appointment with the neuro that he talked to and will see what he says. They feel that the tremor in my arm is not related to Chiari and I don't have headaches. I'm sure the neuro will simply want to medicate me which will only mask the symptoms, all the while permanent damage might be being done.
My sister had many of the same symptoms as I but she also had headaches. I believe Chiari is the root of my problems and so does she. My problem is that the doctors are quick to relate the symptoms to epilepsy since I have already been diagnosed with that. Also, it is easier for them because they understand epilepsy and not chiari. They just don't get it.
I told the neurosurgeon that I wished he could jump into my body and live with my pain for just one minute of his life, and if he did he would have a completely different outlook. He just gave me that blank look as though I am blowing things out of proportion. Imagine feeling as though the left side of your body is rotting away and the ringing in your ear is unbearably painful. When I run a chainsaw I can hear the ringing above that noise. When a Harley passes me on the street, the ringing in my ear far surpasses any noise that a Harley makes. It is like a constant alarm going off telling me something is wrong.
I am 45 years old and some days I feel like I'm knocking on deaths door. I have a wonderful wife and two amazing teenagers. Those are the people who keep me going. I guess I am lucky that way, they support me no matter how bad my day is.
So now the fight begins. I have Kaiser. When it comes to sniffels, sneezes and coughs, Kaiser is great. But once you throw something complex at them they aren't so great. I know I have a long fight ahead of me, and it shouldn't be that way. Living and fighting with Chiari everyday is bad enough. I really don't need to fight another war with and insurance company.
Does anybody else have Kaiser? I read online that Dr. Won in southern California treats Chiari in adults. Even though he is a Kaiser doctor I'm sure it would be a fight to see him since I live in northern California.
Okay, enough is enough. Thanks for letting me rant.