Today all I wanted to do was be NORMAL, get out of the house and grocery shop and be like everybody else(no migraines, no pain, no stares, no whispers)! So me and the kids took an adventure to the school supply store and was that a mistake! The kids and I were in the store no longer then 15 minutes when my little girl decided to pee on the floor and my big guy decided to knock over a turn table! I wanted to be normal because why??? LOL...you gotta love kids!
Getting to the point of the story, ever since we were told about the surgery on Monday I feel disconnected from the world(except for a few WONDERFUL people). I feel like people look at me like I'm fragile and are contagious! I DO NOT have the plague people! I am not contagious and I will not fall apart by just looking at me! Yes, I have a Malformation in my brain but I am really just exactly like you and really miss being treated like one of you! Sorry for the rant just had to get that out!
Chiari Malformation is were part of your brain has extended into the spinal canal and is blocking fluid from flowing correctly to your spine. My brain is blocking most of the fluid from exiting and entering the brain(traveling) so most of the fluid is trapped in my brain or neck, causing pain, symptoms, and migraines due to the pressure built up in my brain and neck. I hope this helps you all understand it a little better, its not something you are going to catch by looking at me or touching me, I promise! I was born with this, but just currently started having more symptoms from it due to the increase in pressure. Here is a great website to read about it if you would like to know more...http://www.chiariinstitute.com/chiari_malformation.html
I also got a phone call today from the surgery staff my surgery is scheduled for February 16th, 2011 at 7am! Hoping everything will be lined up and figured out before then!
Thursday, January 27, 2011
Tuesday, January 25, 2011
Neurosurgern Apt
After a month of waiting to see Dr. Cozzens the Neurosurgeon appointment was finally here! Nervous as heck me and my hubby drove to Springfield to see what this new part of our life would bring!
First I had to pass a neuro exam, which I had to take twice due to my big mistake of mixing up left and right! LOL. Then we got to meet the specialist Dr. Cozzens, he was the kind of Dr that you knew would do anything in his power to save you, just by meeting with him! WE instantly decided to stay with this doctor instead of finding a 4th opinion, it feels right and he really knows his stuff! He has dealt with over 1000's of cases of Chiari Malformation and has only operated on just over a 400 of them. For those of you that don't know there are around 300,000 Chiari Malformation cases known in the USA, which seems like alot but its out of ALL the people in the USA! Its considered a rare disease, but they are seeing it more and more these days.
Any who after looking at the MRI and going threw my past experiences and future symptoms the Doc told us that Surgery, he felt was a necessity for me and that my symptoms would continue to worsen from the pressure in my head! (Let me tell you what was going threw my head, here I am sitting on a bed talking to a doc I just meet with a Skull in his hand explaining the procedure to my husband and I. While I am silently freaking out! I really thought that he was gonna say "Here is your new medicine this will solve all your problems and we will see you in a year", looking at my husband I knew he had thought just what I had). The doctor stayed in the room with us for almost an hour explaining it all and tell us the chances and risks of the surgery.
We feel alot better about the surgery knowing the procedure and feeling that God is control of Dr. Cozzens hands!! Yes, we are a little scared...I mean after all it is a brain surgery!! After the decompression surgery, we will have to stay in the hospital for 2-4 days depending on how surgery goes and then I will be physically done for close to a week, then I can not heavy lift for 3 weeks and the recovery time takes up to a year to recover to your original self.
After making the a very tough decision the hubby and I decided that we would schedule surgery for the week of Feb 16. Meanwhile I will have to have another MRI on Wed. of my neck to make sure that I don't have Syringomyelia. If that is the case and we do have it then we have no choice at all on the surgery, and then the surgery will be a little more risking but have the same outcome. Until surgery I plan to really enjoy life, and celebrate my little girls 2 birthday! I have a feeling these next couple weeks are going to drag by slowly!
I am sorry if I have not returned your phone calls, texts, emails but I really needed a night to let it sink in, if you have any questions I can definitely try to help you understand it through what we have been given.
First I had to pass a neuro exam, which I had to take twice due to my big mistake of mixing up left and right! LOL. Then we got to meet the specialist Dr. Cozzens, he was the kind of Dr that you knew would do anything in his power to save you, just by meeting with him! WE instantly decided to stay with this doctor instead of finding a 4th opinion, it feels right and he really knows his stuff! He has dealt with over 1000's of cases of Chiari Malformation and has only operated on just over a 400 of them. For those of you that don't know there are around 300,000 Chiari Malformation cases known in the USA, which seems like alot but its out of ALL the people in the USA! Its considered a rare disease, but they are seeing it more and more these days.
Any who after looking at the MRI and going threw my past experiences and future symptoms the Doc told us that Surgery, he felt was a necessity for me and that my symptoms would continue to worsen from the pressure in my head! (Let me tell you what was going threw my head, here I am sitting on a bed talking to a doc I just meet with a Skull in his hand explaining the procedure to my husband and I. While I am silently freaking out! I really thought that he was gonna say "Here is your new medicine this will solve all your problems and we will see you in a year", looking at my husband I knew he had thought just what I had). The doctor stayed in the room with us for almost an hour explaining it all and tell us the chances and risks of the surgery.
We feel alot better about the surgery knowing the procedure and feeling that God is control of Dr. Cozzens hands!! Yes, we are a little scared...I mean after all it is a brain surgery!! After the decompression surgery, we will have to stay in the hospital for 2-4 days depending on how surgery goes and then I will be physically done for close to a week, then I can not heavy lift for 3 weeks and the recovery time takes up to a year to recover to your original self.
After making the a very tough decision the hubby and I decided that we would schedule surgery for the week of Feb 16. Meanwhile I will have to have another MRI on Wed. of my neck to make sure that I don't have Syringomyelia. If that is the case and we do have it then we have no choice at all on the surgery, and then the surgery will be a little more risking but have the same outcome. Until surgery I plan to really enjoy life, and celebrate my little girls 2 birthday! I have a feeling these next couple weeks are going to drag by slowly!
I am sorry if I have not returned your phone calls, texts, emails but I really needed a night to let it sink in, if you have any questions I can definitely try to help you understand it through what we have been given.
Wednesday, January 19, 2011
Janurary 19, 2011
The past weeks have been worse then the previous! I had 5 days without a migraine and then bam they hit again and worse then before! I have almost no energy to do anything..I use all my energy cleaning up and watching the kids then I find myself ready to hit the sack early! I am so thankful for an awesome hubby! He has taken care of most of the daily chores, which is huge in my book, cuz i know when he comes home he is tired and would LOVE for nothing more then to sit down! I am also very thankful for the medicines that allow me to feel normal enough to get out an about! Even tho I don't feel good, life still goes on and you still have to LIVE!!
Today I woke up early and cleaned the house!! You might think this is a small thing but the last week or so I find this a big task! Everyday, I feel like I worked out and my whole body hurts, my shoulders, my back, legs, arms, it hurts to breath, sneeze or cough! I am doing better with migraines tho, I am only experiencing one a day now which i can handle!! Although, I don't like the neck pain that I have been having for a week and the pressure behind my eyes and ears makes my head kill all day! Other then that tho life it great! I am very thankful that my kids can entertain themselves and love movies!! We have a apt with Dr Cozzens- a neurosurgeon in Springfield,IL to see what the next step is!! I was told surgery was to be expected but there are many people with ACM that have not had to surgery so we are praying that it will not be necessary and that I can find a way to live with ACM with out it!
Today I woke up early and cleaned the house!! You might think this is a small thing but the last week or so I find this a big task! Everyday, I feel like I worked out and my whole body hurts, my shoulders, my back, legs, arms, it hurts to breath, sneeze or cough! I am doing better with migraines tho, I am only experiencing one a day now which i can handle!! Although, I don't like the neck pain that I have been having for a week and the pressure behind my eyes and ears makes my head kill all day! Other then that tho life it great! I am very thankful that my kids can entertain themselves and love movies!! We have a apt with Dr Cozzens- a neurosurgeon in Springfield,IL to see what the next step is!! I was told surgery was to be expected but there are many people with ACM that have not had to surgery so we are praying that it will not be necessary and that I can find a way to live with ACM with out it!
New year! New beginnings!
2011!! Its 2011!! This year is gonna be fantastic, a year for new beginnings, friendships, unyielding faith and much more!
ACM has gave me more insight to my life then I have ever known, and boy am I gonna grab hold and enjoy the ride!
ACM has gave me more insight to my life then I have ever known, and boy am I gonna grab hold and enjoy the ride!
Xmas holidays!
After finding out about ACM(Arnold Chiari Malformation) I had another week full of migraines that made me pretty much a couch potato and the kids got to watch more movies then they EVER have! I found myself thinking Christmas is soon approaching and I have to get up and get better! NO CHOICE! After 3 weeks of numerous migraines a day I was ready for it to be over!!
It was great to see everybody at Christmas but even if I looked good at Christmas it was all I could do to make it through each gathering, by the time I got home I was wiped and my migraine meds had left me sick to my stomach so I either took a nap or slept it off! I am so thankful for family and friends but I am SO THANKFUL the holidays are over! Although, Christmas was a great day!! I had woke up with no migraine and got to spend the morning with my kids and hubby feeling great and alive again!
At this time I was still waiting to find a neurosurgeon and get an apt for another opinion! I just don't understand how someone can live with something all there life and only have minor symptoms, til one day bam they hit you and just cant function right!! I don't feel the need to ask why me cuz, I feel like god has a plan and if he gave me then I was meant for it! Whether it is to help more people understand what ACM is or to help another person with ACM feel like they aren't the only one with it! I guess it doesnt really matter because its not in my hands anymore!!
It was great to see everybody at Christmas but even if I looked good at Christmas it was all I could do to make it through each gathering, by the time I got home I was wiped and my migraine meds had left me sick to my stomach so I either took a nap or slept it off! I am so thankful for family and friends but I am SO THANKFUL the holidays are over! Although, Christmas was a great day!! I had woke up with no migraine and got to spend the morning with my kids and hubby feeling great and alive again!
At this time I was still waiting to find a neurosurgeon and get an apt for another opinion! I just don't understand how someone can live with something all there life and only have minor symptoms, til one day bam they hit you and just cant function right!! I don't feel the need to ask why me cuz, I feel like god has a plan and if he gave me then I was meant for it! Whether it is to help more people understand what ACM is or to help another person with ACM feel like they aren't the only one with it! I guess it doesnt really matter because its not in my hands anymore!!
Tuesday, January 18, 2011
The day of results-December 6th & 7th
It all started with a migraine that seemed to linger for days. Until one night we decided to go out for dinner and the migraine started to escalate to the point that I could not open my left eye and the pain was so intense that I ended up screaming in the floor board of our truck! My husband tried everything to get me to calm down (due to the fact I was frightening the kids), I ended up getting sick to my stomach but I roughed the car ride home.
The next morning we decided it was best to call the doctor to get some more migraine medicine and to get checked out, she had me come in within the hour and decided that a MRI was a must (it was scheduled for the next day)
On December 7th 2010, the kids and I drove to the MRI clinic for my scan. Yes, I said with the kids!! Thankfully I got a phone call from my mother saying she had a feeling to call me, that she knew I needed a sitter(she came and picked up the kids)! Thank you!! Once inside the building, the scan started and lasted about 45 minutes, in those 45 minutes I felt like my head would explode and my eyes started to shift uncontrollably for a couple minutes! Scariest thing I have ever felt not to be in control of my own body! I think that's when I knew something wasn't quite right! I had expected the doctor to find nothing as they had in all my other scans within the past years, but that wasn't it. I received a phone call saying that they did indeed find something they called it Arnold Chiari Malformation. This would be the beginning to a very new part of my life! This was the day everything changed!
The next morning we decided it was best to call the doctor to get some more migraine medicine and to get checked out, she had me come in within the hour and decided that a MRI was a must (it was scheduled for the next day)
On December 7th 2010, the kids and I drove to the MRI clinic for my scan. Yes, I said with the kids!! Thankfully I got a phone call from my mother saying she had a feeling to call me, that she knew I needed a sitter(she came and picked up the kids)! Thank you!! Once inside the building, the scan started and lasted about 45 minutes, in those 45 minutes I felt like my head would explode and my eyes started to shift uncontrollably for a couple minutes! Scariest thing I have ever felt not to be in control of my own body! I think that's when I knew something wasn't quite right! I had expected the doctor to find nothing as they had in all my other scans within the past years, but that wasn't it. I received a phone call saying that they did indeed find something they called it Arnold Chiari Malformation. This would be the beginning to a very new part of my life! This was the day everything changed!
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