little red cheroke
NAXJA Forum User
- Location
- Nashville TN
I want to say thanks in advance for reading....
I am posting this because I am an avid Jeep enthusiast, love to wheel, love my Jeep, and love my fellow Jeepers. I have spoken with Kevin at kevinsoffroad.com. He has agreed to help me spread awareness and help out with charity stuff that I am currently putting together. He recommended I share my personal story rather than just a post about what the disease is. Please visit www.conquerchiari.org if you would like to learn more.
what is not mentioned in my story below is the affect this has had on my wheeling. during both of my surgeries the doctor had to cut through my neck muscles, now i live with pretty bad neck pain brought on more when ever i am active. i love the rocks, love to crawl, but the bumps, twists and turns give me sever head and neck pain. last trip i went on i only wheeled one day because i could barley get out of bed the next morning. I still love to wheel, and as of now the pain has just shortened my trips, not stopped them.
------ ------ ------
For my entire life I have dreamed of becoming an airline pilot. I didn't care who I worked for or how much I was paid as long as I got to fly. I've always loved planes and anything to do with aerospace. I started MTSU in the fall of 2007 and started my flight training in the spring of 2008. Little did I know my life would be turned upside down and my dreams would be ruined in the blink of an eye.
For years I've suffered from sever headaches and chronic back pain. I was always told it was because I grew so fast that I had back problems and I just figured everybody had headaches.
It wasn't until I fell snow boarding and got a concussion that the symptoms of what I had got worse. I started to lose my balance easily, began to have vertigo, and started to have tingling in my finger tips. In late March I went to see Dr. Clark at MTSU and was referred out for an MRI. On March 31st I received the news.
I was told I have Arnold Chiari type I and Syringomyelia and that I would have to have brain surgery. I was referred out to a neurosurgeon, Dr. Schettolee in Nashville. I dropped my classes at MTSU and began to prepare for surgery.
On April 16th 2008 I went in for my pre op and surgery. I waited in the waiting room for what seemed like days before they came to take me to the OR. Once they came for me I was taken to a room where they placed my art line and other IVs just before my surgery. The last thing I remember before going under was being wheeled to the OR and seeing the bright lights above the operating table.
The surgery I had required the removal of a portion of my skull and the top two pieces of my spine. This would allow for room for CSF to flow freely around my cerebellum and prevent my syrinx from getting bigger.
When I woke up I was in the worse pain I’ve ever experienced. My body had a tolerance to morphine and it had no affect on blocking the pain from surgery. The next 14 hours would be the longest 14 hours of my life. I had no pain killers, and the pain I experienced was un describable. My surgeon had gone home and the nurses couldn’t give me anything stronger than morphine until he came back. My neck was frozen in position from swelling. The surgeon had to cut through my neck muscles to get to the portion of my skull that he needed to. When he came in the next morning he gave me a pain pump I could control with hydro morphine. This finally gave me some relief from the pain. I spent two days in the ICU before being moved to a regular room where I spent another 3 days.
After being discharged I was only home for a few days before things took a turn for the worse. On the night of April 25th just before going to bed I came down with a sever headache and a spot on the back of my head swelled to the size of a golf ball. I was taken to the ER at Centennial by ambulance where they ran a CT scan that reviled a leak from the first surgery. They gave me hydro morphine to block the pain and sent me home. The next day I went to see my neurosurgeon where he took off some of the access fluid from my head and had me wait a few days to see if the leak would stop. When I went back things had only gotten worse. He sent me to St. Thomas hospital to have an epidural placed in my back to drain off excess spinal fluid. I had the drain placed and it was left in for several days, all of which I couldn’t move, at all, because if I did I could have caused nerve damage. Several days later the Dr. Schettolee came to check on me and the leak showed no sign of improving and he said I would have to have a second surgery to stop the leak. Several friends from my church came and prayed over me for a successful surgery. There prayers were herd and the second surgery was a success.
After being discharged from the hospital I spent several days in bed before starting to walk again. After I started to gain my strength back I began to get ready to start school. I had planned to resume my flight training at MTSU and get my life back to normal.
I didn’t get a medical certification in time to fly in the fall of 2008 so I planned on flying in the spring of 2009, until I got a letter from the FAA stating that I would not be eligible for anything above a 3rd class medical for a few years.
This leads to where I am now, taking general education classes at MTSU, still in and out of the doctor on a weekly basis not knowing if I am getting better or what is going on in my head. The doctors say I will make a full recovery in about a year. I still suffer from sever headaches everyday and they show little sign of easing up. I can not fly anymore and have to re plan my life. I’m thinking pre med and going into neurology or working in the ER. I’ve also thought about being a firefighter or paramedic. I’ve always loved to help people and I think these professions would allow me to do that.
I would one day like to find a real cure for this debilitating illness or find a way to prevent it from forming in the first place. I am now determined to finish school and have more drive than I’ve ever had. I now see how short life really is and that you can lose it all in a matter of seconds.
Thanks for reading,
David
Chiari Survivor
www.conquerchiari.org
--- --- --- --- --- --- --- ---
that being said, i am raising awareness and helping others with this illness. i have hooked up with a guy, Jeff D. who has the worse case of arnold chiari in the US. he is not able to work due to the pain, many doctors refused to operate because his condition was so sever. we are teaming up to start a non profit to help patients. conquerchiari.org is a great foundation, they help fund research and help educate patients. what we want is to help patients on a more personal level. we want to council them, be there for a shoulder to lean on, help with bills (I currently have around $150,000 in medical bills), help them with anything they need.
we are putting together a web page and getting our tax exempt status. ANY one with ANY type of company that is interested in helping or spreading awareness PLEASE contact me at [email protected]. in return for your help I will list you as a supporter on our facebook page, our myspace page, and the foundation web page once it is up and running. We will take all the help we can get. if you cant help, please just educate yourself and help spread the word to family and friends.
this illness is rare and many doctors have NO clue what it is. i went un diagnosed for 20 YEARS. it was not untill i found a doctor that actually has chiari that i was properly diagnosed.
THANK YOU for reading! even if you cant help the fact that you read this means the world to me and others with Chiari.
-David Kiely
www.conquerchiari.org
I am posting this because I am an avid Jeep enthusiast, love to wheel, love my Jeep, and love my fellow Jeepers. I have spoken with Kevin at kevinsoffroad.com. He has agreed to help me spread awareness and help out with charity stuff that I am currently putting together. He recommended I share my personal story rather than just a post about what the disease is. Please visit www.conquerchiari.org if you would like to learn more.
what is not mentioned in my story below is the affect this has had on my wheeling. during both of my surgeries the doctor had to cut through my neck muscles, now i live with pretty bad neck pain brought on more when ever i am active. i love the rocks, love to crawl, but the bumps, twists and turns give me sever head and neck pain. last trip i went on i only wheeled one day because i could barley get out of bed the next morning. I still love to wheel, and as of now the pain has just shortened my trips, not stopped them.
------ ------ ------
For my entire life I have dreamed of becoming an airline pilot. I didn't care who I worked for or how much I was paid as long as I got to fly. I've always loved planes and anything to do with aerospace. I started MTSU in the fall of 2007 and started my flight training in the spring of 2008. Little did I know my life would be turned upside down and my dreams would be ruined in the blink of an eye.
For years I've suffered from sever headaches and chronic back pain. I was always told it was because I grew so fast that I had back problems and I just figured everybody had headaches.
It wasn't until I fell snow boarding and got a concussion that the symptoms of what I had got worse. I started to lose my balance easily, began to have vertigo, and started to have tingling in my finger tips. In late March I went to see Dr. Clark at MTSU and was referred out for an MRI. On March 31st I received the news.
I was told I have Arnold Chiari type I and Syringomyelia and that I would have to have brain surgery. I was referred out to a neurosurgeon, Dr. Schettolee in Nashville. I dropped my classes at MTSU and began to prepare for surgery.
On April 16th 2008 I went in for my pre op and surgery. I waited in the waiting room for what seemed like days before they came to take me to the OR. Once they came for me I was taken to a room where they placed my art line and other IVs just before my surgery. The last thing I remember before going under was being wheeled to the OR and seeing the bright lights above the operating table.
The surgery I had required the removal of a portion of my skull and the top two pieces of my spine. This would allow for room for CSF to flow freely around my cerebellum and prevent my syrinx from getting bigger.
When I woke up I was in the worse pain I’ve ever experienced. My body had a tolerance to morphine and it had no affect on blocking the pain from surgery. The next 14 hours would be the longest 14 hours of my life. I had no pain killers, and the pain I experienced was un describable. My surgeon had gone home and the nurses couldn’t give me anything stronger than morphine until he came back. My neck was frozen in position from swelling. The surgeon had to cut through my neck muscles to get to the portion of my skull that he needed to. When he came in the next morning he gave me a pain pump I could control with hydro morphine. This finally gave me some relief from the pain. I spent two days in the ICU before being moved to a regular room where I spent another 3 days.
After being discharged I was only home for a few days before things took a turn for the worse. On the night of April 25th just before going to bed I came down with a sever headache and a spot on the back of my head swelled to the size of a golf ball. I was taken to the ER at Centennial by ambulance where they ran a CT scan that reviled a leak from the first surgery. They gave me hydro morphine to block the pain and sent me home. The next day I went to see my neurosurgeon where he took off some of the access fluid from my head and had me wait a few days to see if the leak would stop. When I went back things had only gotten worse. He sent me to St. Thomas hospital to have an epidural placed in my back to drain off excess spinal fluid. I had the drain placed and it was left in for several days, all of which I couldn’t move, at all, because if I did I could have caused nerve damage. Several days later the Dr. Schettolee came to check on me and the leak showed no sign of improving and he said I would have to have a second surgery to stop the leak. Several friends from my church came and prayed over me for a successful surgery. There prayers were herd and the second surgery was a success.
After being discharged from the hospital I spent several days in bed before starting to walk again. After I started to gain my strength back I began to get ready to start school. I had planned to resume my flight training at MTSU and get my life back to normal.
I didn’t get a medical certification in time to fly in the fall of 2008 so I planned on flying in the spring of 2009, until I got a letter from the FAA stating that I would not be eligible for anything above a 3rd class medical for a few years.
This leads to where I am now, taking general education classes at MTSU, still in and out of the doctor on a weekly basis not knowing if I am getting better or what is going on in my head. The doctors say I will make a full recovery in about a year. I still suffer from sever headaches everyday and they show little sign of easing up. I can not fly anymore and have to re plan my life. I’m thinking pre med and going into neurology or working in the ER. I’ve also thought about being a firefighter or paramedic. I’ve always loved to help people and I think these professions would allow me to do that.
I would one day like to find a real cure for this debilitating illness or find a way to prevent it from forming in the first place. I am now determined to finish school and have more drive than I’ve ever had. I now see how short life really is and that you can lose it all in a matter of seconds.
Thanks for reading,
David
Chiari Survivor
www.conquerchiari.org
--- --- --- --- --- --- --- ---
that being said, i am raising awareness and helping others with this illness. i have hooked up with a guy, Jeff D. who has the worse case of arnold chiari in the US. he is not able to work due to the pain, many doctors refused to operate because his condition was so sever. we are teaming up to start a non profit to help patients. conquerchiari.org is a great foundation, they help fund research and help educate patients. what we want is to help patients on a more personal level. we want to council them, be there for a shoulder to lean on, help with bills (I currently have around $150,000 in medical bills), help them with anything they need.
we are putting together a web page and getting our tax exempt status. ANY one with ANY type of company that is interested in helping or spreading awareness PLEASE contact me at [email protected]. in return for your help I will list you as a supporter on our facebook page, our myspace page, and the foundation web page once it is up and running. We will take all the help we can get. if you cant help, please just educate yourself and help spread the word to family and friends.
this illness is rare and many doctors have NO clue what it is. i went un diagnosed for 20 YEARS. it was not untill i found a doctor that actually has chiari that i was properly diagnosed.
THANK YOU for reading! even if you cant help the fact that you read this means the world to me and others with Chiari.
-David Kiely
www.conquerchiari.org
