lilschaumie06
03-05-2008, 07:46 PM
Hey everyone,
As some of you know I am 20 years old and I HAD craniosynostosis when I was a baby and I had a craniectomy when I was 3 months old (1988) to repair both of my lambdoidal sutures and for my other two (I am not sure which ones the were I just know it was the left front of my head) well needless to say they spun down the blood my mom donated for me and ran out of blood of hers to give to me so they stopped the surgery when they were done repairing both of my lambdoidal sutures because my mom would not allow any other blood but hers to be donated to me. Ok so I am saying all that again to say that when I was 11 I started having horrible migranes and nobody could figure out what was going on and well my mom took me to one of the best pediatric neurologists in Houston at the time and he had me get an MRI and told us that I have a Chiari I (type one) Brain Malformation. Now there are many theories on why I have this but I am pretty sure it is between genetics and it was cause because of the premature closure of my lambdoidal sutures. Basically what happens is that my brain has no more room to grow so my Cerebellum tonsils grows down into my spinal colum and in turns puts pressure on my spinal cord and blocks or hinders the flow of my cerebrospinal fluid (CSF). Many people even know that they have a Chiari but I have been suffering from MANY symptoms due to this. I have sleep apnea (they think and if so I have lived just fine with for um 20 years), my esophogus nearly closes atleast once a week, my eardrums vibrate and make crazy noises, my eyes shake from side to side, obviously I have sever migranes, and a few other symptoms that are cause by pressure on my sympathetic nervous system. My problem is that I have lived with all these symptoms for years and I am not sure why they are such a big deal now!? I continually get surgery thrown at me like it is no big deal just because I had a craniectomy when I was 3 months old! I don't get why Doctors think this is not such a huge difference!! I now know and understand what will be going on with me and it is frightening! During the surgery they will remove a part of the back of my scull and a part of my spine and I THINK clip my cerebellum tonsils (from what I am understanding). I just can't get pass the thought that I may not be able to walk move my arms, feed myself, dress myself or even talk when I wake up if the doctor slips or something when he is "in" there. But then on the bringht side I could be SYMPTOM FREE! How amazing would that be! I don't know what to do I know what my mom wants and my dad is on the fence about it b/c I am his baby and he doesn't want to see me go through that. My other hesitation is that my family is going through a lot with my older brother (he has a traumatic brain injury from a car accident in 2004 and is now and alcoholic) and I don't want to put any more stress on my parents. I know this is a lot to ask, while most of your babies are in much more need of prayers than I am but if you find the chance in yalls prayers please pray that I make the right decision. Thank you very much and all of yalls families are in my prayers! Who would've thought that I would be back at a neurosurgeons office right when my life is finally falling into place!
:banghead
As some of you know I am 20 years old and I HAD craniosynostosis when I was a baby and I had a craniectomy when I was 3 months old (1988) to repair both of my lambdoidal sutures and for my other two (I am not sure which ones the were I just know it was the left front of my head) well needless to say they spun down the blood my mom donated for me and ran out of blood of hers to give to me so they stopped the surgery when they were done repairing both of my lambdoidal sutures because my mom would not allow any other blood but hers to be donated to me. Ok so I am saying all that again to say that when I was 11 I started having horrible migranes and nobody could figure out what was going on and well my mom took me to one of the best pediatric neurologists in Houston at the time and he had me get an MRI and told us that I have a Chiari I (type one) Brain Malformation. Now there are many theories on why I have this but I am pretty sure it is between genetics and it was cause because of the premature closure of my lambdoidal sutures. Basically what happens is that my brain has no more room to grow so my Cerebellum tonsils grows down into my spinal colum and in turns puts pressure on my spinal cord and blocks or hinders the flow of my cerebrospinal fluid (CSF). Many people even know that they have a Chiari but I have been suffering from MANY symptoms due to this. I have sleep apnea (they think and if so I have lived just fine with for um 20 years), my esophogus nearly closes atleast once a week, my eardrums vibrate and make crazy noises, my eyes shake from side to side, obviously I have sever migranes, and a few other symptoms that are cause by pressure on my sympathetic nervous system. My problem is that I have lived with all these symptoms for years and I am not sure why they are such a big deal now!? I continually get surgery thrown at me like it is no big deal just because I had a craniectomy when I was 3 months old! I don't get why Doctors think this is not such a huge difference!! I now know and understand what will be going on with me and it is frightening! During the surgery they will remove a part of the back of my scull and a part of my spine and I THINK clip my cerebellum tonsils (from what I am understanding). I just can't get pass the thought that I may not be able to walk move my arms, feed myself, dress myself or even talk when I wake up if the doctor slips or something when he is "in" there. But then on the bringht side I could be SYMPTOM FREE! How amazing would that be! I don't know what to do I know what my mom wants and my dad is on the fence about it b/c I am his baby and he doesn't want to see me go through that. My other hesitation is that my family is going through a lot with my older brother (he has a traumatic brain injury from a car accident in 2004 and is now and alcoholic) and I don't want to put any more stress on my parents. I know this is a lot to ask, while most of your babies are in much more need of prayers than I am but if you find the chance in yalls prayers please pray that I make the right decision. Thank you very much and all of yalls families are in my prayers! Who would've thought that I would be back at a neurosurgeons office right when my life is finally falling into place!
:banghead