My journey started December 2011 as a little tingle in my bottom lip left-hand side. I knew I hadn't been feeling well so I figured "great cold sore/ fever blister coming on" and off I went looking for my medicine. It was a Thursday evening normal stress of the holidays coming no big deal. Two days later the whole left hand inside of my mouth was numb and by Monday the left cheek up to my eye and down to my jaw were numb/tingly. I can only describe it a having a sunburn with salt water dried on your face and sand being pelted at it at a high rate of speed. It was not pleasant. By the time I could get into the doctor I had lost 15 pounds because eating was painful. Eating things like instant potatoes was excruciating.
My doctor felt it was stress and anxiety induced trigeminal neuralgia. So he started me on anti-depressants. After a month of that we went to anti-seizure medication, a low dose for a month then jumped to a higher dose a month later and then stayed at that dose until March 12th, 2015
Mother's Day 2014 while driving back from my mother-in-law's the lower part of my left leg started to tingle and burn almost like it was asleep but it shouldn't have been asleep because I was sitting upright in the car driving. I wrote it off.
As the summer progressed the tingling in my face got worse, the tingling in my leg came and went more frequently, and it also started in my arm. All on the left side.
In October 2014 I quit smoking after 20 years. Symptoms still progressed. I told my doctor around Thanksgiving about the progression and the quitting smoking. He wrote the progression of symptoms off to detoxing. I thought ok it seemed reasonable. He said give it another month and we'd go from there. Well another month went by and my birthday rolled around which was also my next appointment with him oh boy...lol. When I told him the symptoms hadn't changed he ordered an MRI. That is when they found the 6mm herniation.
My doctor still felt the chiari had nothing to do with any of my symptoms and they were still stress and anxiety induced. I asked for a referral to a neurologist anyways. That was a useless trip because I saw the PA for 45 minutes and the neurologist for 2 minutes to come out of there with a prescription for Topamax and Gabapentin for headache prevention because they didn't even acknowledge the chiari at that visit or the follow up visit.
I then took it upon myself and saw a neurosurgeon, by accident, I thought it was another neurologist( I was a little flustered at this point). It so happened I lucked out because he specializes in Trigeminal Neuralgia and Chiari Malformation.
When I saw him he told me I did not and never had trigeminal neuralgia and that all my problems stemmed from the Chiari Malformation and wants to do surgery. I saw my PCP later that day who wanted a second opinion so at this point I am waiting on another appointment in May at another hospital with another neurologist and also a neurosurgeon.
If the second neurosurgeon says surgery would be beneficial then I plan on going through with the surgery. Just in the past month symptoms have gotten worse and moved to the right hand and the memory and completing sentences and conversations is becoming very, very difficult.
As it is it has taken me three days to put this together.
I am hoping on some insight into the surgery-the good, the bad, and the ugly