Hi Melanie, I am sooo sorry to hear about all your trouble, but I have to say that your medical problems and length of them, remind me of myself. Even how you have questioned God about "hasn't He given you enough?" I have asked that often myself, believe me. I was born with a neurological (hereditary from my mother) disease called Charcot-Marie-Tooth. I had many surgeries on my feet up until the age of 18. I felt like that was enough...not being able to always walk good, let alone run well and balance problems. My feet always hurt, starting way back as a child. I got made fun of with my run all through elementary school which was torment for a little girl.
I have had kidney stones that I had bilateral lithotripsy for in '01, I also then had one when I came home from my shunt surgery that I had to pass on my own. The placement of the shunt knocked one loose and down the ureter. I have a right kidney full of them which I've been told are mostly big ones and if one of the big ones gets into the ureter, I could be in trouble. But I just cannot tolerate any more procedures right now. I have this brain sagging and chiari and a shunt that will eventually need replacing. I've torn the ligaments in both ankles which increases my difficulties with balance and walking. I often ask God when is enough, enough? You hear as a Christian that God only gives you as much as you can handle, and I have told Him countless times, that He is pushing it with me. lol
I needed the shunt because of where my large cyst sits (which is so large, takes up a third of my brain). Right at the base and moves up the back of the brain. But it blocks the channels for the CSF to flow down my spine. On scan you can only see part of my brain because the cyst blocks a very large portion of my brain from sight on film. It's enormous. It is pushing my cerebellum and brain stem downward, along with the top of my brain sagging, or drooping downward on top. I live with pain every day in and on my head. The sagging I have been told, causes the brain to tug on vessels and nerves up there, which causes my awful pain on top of my head.....like someone has just hit me in the head with a shovel. Especially first thing in the morn., if I don't eat enough or at all, and at night at the end of a long day. Dizziness from the chiari is horrible. I feel like I am on a boat all the time...trying to get my balance. I am weak, fatigued, and lose energy quickly. It is hard now, for me to bend to get things off the floor or anything. I have to have my boys help me a lot. I get double vision a lot and have to close one eye to get it to stop, and my right eyelid still droops. Greatly when I am tired. My husband of 13 years, just moved out last week. We have been having difficulties, and he admittingly said that he has lost compassion for my situation. So I will be trying to raise the boys, essentially on my own. I am taking an online medical billing course and am supposed to be done in May. I hope to start my own medical billing practice so I can work from home. I just hope I have the energy to do this. I freelance write from home too. It brings in a little money but not much. Writing is my passion...it's a good release. I have also written my autobiography about my situation and am almost ready to start peddling it out to publishers. Fingers crossed. I have titled it, "It's all in Your Head" because the play on words is exactly what I lived. Everyone...doctors included, used to tell me all my symptoms were just all in my head. Well, the cyst proved that yes, in fact it was "All in my Head!" : )
I wish you the best of luck. It is not always easy staying positive, but it is important because it plays a role in your recovery as well as how you view life. I will keep you in my prayers.
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Hi Melanie, I am sooo sorry to hear about all your trouble, but I have to say that your medical problems and length of them, remind me of myself. Even how you have questioned God about "hasn't He given you enough?" I have asked that often myself, believe me. I was born with a neurological (hereditary from my mother) disease called Charcot-Marie-Tooth. I had many surgeries on my feet up until the age of 18. I felt like that was enough...not being able to always walk good, let alone run well and balance problems. My feet always hurt, starting way back as a child. I got made fun of with my run all through elementary school which was torment for a little girl.
I have had kidney stones that I had bilateral lithotripsy for in '01, I also then had one when I came home from my shunt surgery that I had to pass on my own. The placement of the shunt knocked one loose and down the ureter. I have a right kidney full of them which I've been told are mostly big ones and if one of the big ones gets into the ureter, I could be in trouble. But I just cannot tolerate any more procedures right now. I have this brain sagging and chiari and a shunt that will eventually need replacing. I've torn the ligaments in both ankles which increases my difficulties with balance and walking. I often ask God when is enough, enough? You hear as a Christian that God only gives you as much as you can handle, and I have told Him countless times, that He is pushing it with me. lol
I needed the shunt because of where my large cyst sits (which is so large, takes up a third of my brain). Right at the base and moves up the back of the brain. But it blocks the channels for the CSF to flow down my spine. On scan you can only see part of my brain because the cyst blocks a very large portion of my brain from sight on film. It's enormous. It is pushing my cerebellum and brain stem downward, along with the top of my brain sagging, or drooping downward on top. I live with pain every day in and on my head. The sagging I have been told, causes the brain to tug on vessels and nerves up there, which causes my awful pain on top of my head.....like someone has just hit me in the head with a shovel. Especially first thing in the morn., if I don't eat enough or at all, and at night at the end of a long day. Dizziness from the chiari is horrible. I feel like I am on a boat all the time...trying to get my balance. I am weak, fatigued, and lose energy quickly. It is hard now, for me to bend to get things off the floor or anything. I have to have my boys help me a lot. I get double vision a lot and have to close one eye to get it to stop, and my right eyelid still droops. Greatly when I am tired. My husband of 13 years, just moved out last week. We have been having difficulties, and he admittingly said that he has lost compassion for my situation. So I will be trying to raise the boys, essentially on my own. I am taking an online medical billing course and am supposed to be done in May. I hope to start my own medical billing practice so I can work from home. I just hope I have the energy to do this. I freelance write from home too. It brings in a little money but not much. Writing is my passion...it's a good release. I have also written my autobiography about my situation and am almost ready to start peddling it out to publishers. Fingers crossed. I have titled it, "It's all in Your Head" because the play on words is exactly what I lived. Everyone...doctors included, used to tell me all my symptoms were just all in my head. Well, the cyst proved that yes, in fact it was "All in my Head!" : )
I wish you the best of luck. It is not always easy staying positive, but it is important because it plays a role in your recovery as well as how you view life. I will keep you in my prayers.
God bless-
January 15, 2010 - 4:59pmMaria
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