I had come out of a bit of a depression. One of the lows I find myself in as being BiPolar. For those who don't know this about me, I'm sorry. Its something that has been with me so long that I figured everyone knew by now. It not something I'm ashamed of or something I hide. I'm actually kind of proud about it. Why? Because, in all honesty, I'm good at it!!! I am able to do a lot of things other BiPolar people cannot do!!! I didn't rebound to a mania... but I do like me a good mania <grin>... I did, however start planning things in my life, eating better, moving more, getting Cassie involved in it all!! Cassie? She was doing awesome in our schooling, really retaining stuff!! It was a new age and we were liking it!!!! I was going to get my BiPass surgery to get rid of my diabetes!! I bought a BIKE!!!!! I quit smoking!! I was on a roll!!!! Then the breaks screeched and every thing came to a complete halt.
Shortly after I quit smoking, the headaches started. And got worse. I noticed my exhaustion returning. But I couldn't go back to napping because when tried, I'd get restless leg syndrome all over my body and I'd have to get up and move. But then I'd get exhausted and need to sit. My sleep schedule gradually changed from going to bed at 10 and up at 6 to going to bed at 9:15 and getting up between 8 & 9. Exhaustion, complete muscle fatigue. Showering and walking to the mail box was an aerobic work out which left me wanting a nap. Then the hearing started to go. When people talked, including me, the distortion was such as it sounded like a serial killer on the phone demanding ransom. That is when I went to the doctor.
"You are suffering from Migraines. Lets just get an MRI to rule out a brain tumor and keep me from losing my license. Don't take any pain meds with blood thinners, just in case, until we get the results." Three days of pain later, I get the MRI, which induces a migraine, so I know the difference between the two types of pain.. I was told to go ahead and take an Excederine Migraine for the migraine. The pain thats left over?
Welcome to Chiari Malformation!!!!!!!
What is Chiari (pronounced Key-arrrr- eeee) Malformation? Its the bottom part of my brain (the cerebral tonsils) being pushed out of my brain, into my brain stem, and obstructing the flow of cerebral spinal fluid. Can this kill me? There are tons of other things that are going all, because the brain is the power house. My thumb hurts today. Its it the Chiari? Could be!!! A little extra pressure could pushing on that portion of my brain!!!! Brain fog, loss of memory, balance, etc, every day is something new. In less than 3 months I've gone from someone embracing life to thinking "If this is what my life will now be like, then I hope the prognosis IS death." Alas, its not. It CAN be... it can effect heart, organs, etc. The only treatment is surgery... and that is always a risk.
Surgery. I'm looking at brain surgery and I'm hoping it will help. BUT this is such a strange syndrome, there are few experts in the field. So many people have been butchered by local surgeons, that they have no hope of leading a real life. We've decided I'm worth much more than that and are saving all our money to travel to Maryland to see an internationally renowned specialist named Frasier Henderson. We have our first appointment with him in June.
Until then, I will have good days where all I have is a headache, and I will have bad days where I'll end up in the emergency room because I can't stand or walk, and I collapse in the Federal Building. All I ask is for your prayers for peace and healing. They Lord may not have healing in my future, but really need peace to keep my sense of humor and to keep from getting really grumpy.
I just want to tell you that while I did not have this condition in particular, the tumor i had was midline in my cerebellum. I had and continue to have many of the balance/coordination difficulties you are talking about. I'm very sorry that you are going through this, but putting it out there to your support network is great. Also, I had my brain surgery in portland, and I would NEVER allow drs in Syracuse to go near my head with anything more than an MRI. I'm super glad you are going out of town to a specialist. You don't fool around with this kind of thing. The effects of the brain surgery can leave you dealing with a whole host of other symptoms. You want it done right, as right as they can, anyway. I would be really honored to talk with you more about what you are going through and what my experience has been. We're an elite club :) Come over and have tea (or whatever) with us soon. We have more than enough cool stuff here to keep your daughter entertained. Really, I hope you will. Or, I am happy to come to you.
ReplyDeleteI am so sorry you have been going through this! Please keep me posted!
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