Let me just start from the beginning and hope someone has the patience to read this. : chiari
So let me start by saying I’m a 38 year old recovering addict I had a real problem with alcohol and prescriptions.(pain killers and benzos) I am 2.5 years clean now. Just to get that out of the way.
So about 4 years ago I had a head injury, a skull fracture brain bleeding on both sides. I spent some time in the hospital. After a month of healing, I thought the only issue I was having from the head injury was the occasional migraine,
Fast forward 1.5 years I finally had enough and decided to get clean and live differently. I was still living with the occasional migraine taking imitrex when needed and topamax at night and everything seemed to be working for me.
Until this July. My Family (Wife and 6year old twins B/G) were on vacation in Bar Harbor, Maine. On our second day I woke up with a stiff neck like I never had before (up the center of my neck) turning into a migraine that imitrex wouldn’t help. The next day both symptoms got worse. It was about 70 degrees outside I was sweating profusely and almost felt like the flu. I tried to go to a walk in center but ended up in the ER. They kept me for two days they thought meningitis or maybe Lyme disease because I enjoy Disc golf.
After vacation I followed up with my family doctor who sent me for a MRI and blood work. I had a blood test come back positive for LYME. I took the antibiotics for 3 weeks but my symptoms continued.
This past week I followed up with my family doctor and the reread my MRI results. At the crainocervical junction the right cerebellar tonsils project 10 mm below the level of the foramen magnum and the left is 7.5 mm. The markings of the tonsils have a rounded configuration and the findings are compatible with cerebellar tonsillar ectopia.
So here are the major issues I have been having .
Cognitively, I have never felt dumb in my life. I am not sure that dumb people know what it feels like but I struggle with words/ names and sentences. Let’s forget about concentration. I typically have a very witty sense of humor and have been told I am very quick to respond (maybe a bit of a smart as sometimes not that I would cross the line) well I have lost that.
I am a union electrician by trade. Today I stopped counting after 10 but I became dizzy or light headed over 20 times. I don’t really loose my balance but I also don’t need that happening at the top of a ladder.
For the past month I have woken up with a headache had to take a imitrex every day. I never thought about it till last night but it’s the top front center of my head and it throbs and there is constant pressure.
I have right knee pain like I have never had before and constant neck pain up the center of my neck and sometimes running down the center of down my back upper back. Also joint pain in my fingers
Numbness I’m my hands feet and arms along with muscle cramps that I have to rub out when they happen foot cramps too. This all comes and goes
How about the amount of floaters I see in my vision or how often I see stars? Does it happen to anyone else?
Sometimes I feel like I am looking through someone else’s eyes if that makes any sense or if these thoughts can even be my own.
8..The fact that outside of work I struggle to find the energy to do anything that needs to be done and yes I am depressed because this shit is depressing. But that being said I have a wonderful family and great support system that I live very much my life is good.
So I don’t know how much of this is all related to the condition and how much relief the decompression surgery will help. How long and how much pain I will be in from the surgery but I cant continue to live like this.
I am so sorry for the very long read if anyone actually made it through all of this and it makes any sense to anyone and anyone can offer me any advice or words of wisdom please do.