[tupelohoney]

I have recently been diagnosed with Chiari Malformation Type 1. I have had the short, yet VERY intense headaches for a little over a year and a half now. In December 2009 I went for my first MRI and was told my Cerebellar Tonsils protrude into my spinal canal, I then googled what the MRI read and "chiari" popped up everywhere. I went to my first neurologist and he confirmed my "self-diagnosis" was Chiari and reccommended I be referred to Seattle to the University for surgery as well as go to therapy to help with my swallowing and speach and hearing and he also ordered another MRI on my neck, etc..
Currently, I live in Montana but I am from the south (Im in school in montana) My family is all in down south so we asked to be referred to someone closer to home, in Alabama, Tennessee, Mississippi, Georgia, Kentucky.. etc.. (for recovery convenience/being close to home) I have another appointment in one week with my doctor to talk about who he is going to refer me to.
In my mind, I plan to get a referral to a doctor in Birmingham, Alabama and hopefully get the surgery done this summer while I am out of school and close to home with my family. Now, I am just so nervous. I am only 22 years old and I have researched Chiari more than anything I have ever researched and I have read dozens of success stories, as well as the bad. I am scared of the pain I am going to endure after surgery. I understand that everyone is different and the surgery will fix the most pain of all and that is the headaches, but im just nervous! I know its common, but I feel like I have so many questions I dont know where to begin...
How is it after surgery? How long is recovery? I know it takes a full year, but how will i be the day after surgery? 2 days after? 3 days? 4..5...10...20 days after? Do they give you pain medication BEFORE surgery? after? even with my age? I have long hair.. i understand they will have to shave some of it off... how is that? can I wear extensions/wig afterwards? driving? Will I be able to fly back to montana for school in August if my surgery is in June or July? Does anyone know of a good doctor to reccommend in Birmingham, alabama or anywhere else below the Mason Dixon line?! Is the surgery expensive? (not that it's a problem just curious!) What about smoking afterwards? Marijuana use? (I randomly, legally use marijuana for pain)
anything else you think I should know?

IM SO nervous!!!!!!!!!!!!

help...

[Alffe]

Hi tupelohoney and welcome to Neuro Talk. Here is the link to our Chiari
forum...http://neurotalk.psychcentral.com/forum71.html

You'll find a lot of good information and support there. I'm so glad you have joined us but sorry for the reason.

[azoyizes]

Hi, and welcome to NT! This is such a great place with many friendly, caring, and supportive people.

We're so glad you found us!

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[CareBear]

Originally Posted by tupelohoney

I have recently been diagnosed with Chiari Malformation Type 1. I have had the short, yet VERY intense headaches for a little over a year and a half now. In December 2009 I went for my first MRI and was told my Cerebellar Tonsils protrude into my spinal canal, I then googled what the MRI read and "chiari" popped up everywhere. I went to my first neurologist and he confirmed my "self-diagnosis" was Chiari and reccommended I be referred to Seattle to the University for surgery as well as go to therapy to help with my swallowing and speach and hearing and he also ordered another MRI on my neck, etc..
Currently, I live in Montana but I am from the south (Im in school in montana) My family is all in down south so we asked to be referred to someone closer to home, in Alabama, Tennessee, Mississippi, Georgia, Kentucky.. etc.. (for recovery convenience/being close to home) I have another appointment in one week with my doctor to talk about who he is going to refer me to.
In my mind, I plan to get a referral to a doctor in Birmingham, Alabama and hopefully get the surgery done this summer while I am out of school and close to home with my family. Now, I am just so nervous. I am only 22 years old and I have researched Chiari more than anything I have ever researched and I have read dozens of success stories, as well as the bad. I am scared of the pain I am going to endure after surgery. I understand that everyone is different and the surgery will fix the most pain of all and that is the headaches, but im just nervous! I know its common, but I feel like I have so many questions I dont know where to begin...
How is it after surgery? How long is recovery? I know it takes a full year, but how will i be the day after surgery? 2 days after? 3 days? 4..5...10...20 days after? Do they give you pain medication BEFORE surgery? after? even with my age? I have long hair.. i understand they will have to shave some of it off... how is that? can I wear extensions/wig afterwards? driving? Will I be able to fly back to montana for school in August if my surgery is in June or July? Does anyone know of a good doctor to reccommend in Birmingham, alabama or anywhere else below the Mason Dixon line?! Is the surgery expensive? (not that it's a problem just curious!) What about smoking afterwards? Marijuana use? (I randomly, legally use marijuana for pain)
anything else you think I should know?

IM SO nervous!!!!!!!!!!!!

help...

I had decompression surgery 2 1/2 years ago, age 55. The recovery went well, but I continue to struggle with neck strength and shoulder issues. I wish I'd have checked out UCLA (I know - a long way away) because they are working on a less invasive technique. Believe me, your neck and shoulders will never be the same afterward. You have your life ahead of you - check it out! Wish you the best...