Can Chiari surgery result in chronic exhaustion?

[katydee]

My daughter underwent decompression surgery for Chiari I about 18 months ago.  She still gets headaches occasionally and was diagnosed with migraines about a month ago and takes medication for that as well.  She was trying to take a full semester at college, but had to drop down to part-time due to uncontrollable daytime sleepiness.  She took Provigil (a stimulant for narcolepsy) which did nothing, and was just prescribed another stimulant like Adderal (I forget the name of it - starts with a V), which is used for ADHD.  She took a pill, then two hours later fell asleep for a few hours.  This condition is more debilitating than the pain from Chiari, and no one seems to have a clue as to the cause.  She had a basic sleep study done to rule out apnea and such, and will be having another more involved one as soon as the semester ends.  She sleeps about 8-10 hours at night, wakes up, falls asleep about 2 hours later, goes to a class, comes back to her room for another nap, then finds it hard to make it to bedtime without falling asleep.  Some of the doctors are hinting at depression, but her psychiatrist has her on Lexapro and doesn't believe it's depression either.  The psych is concerned that this is a brain stem thing or an aftereffect of Chiari surgery, or some other neurological condition.  Has anyone else experienced something like this?

[katydee]

Hi Molly,

   Just wanted to wish you luck tomorrow.  I don't know if you have another surgery scheduled after this one, but I hope this is it for a long while - or forever!  I'll be thinking of you often this week.  When you're feeling better, let us all know how you're doing.

   Hope you had a nice Thanksgiving!

[katydee]

I'm glad to hear you finally found a dr you have faith in, but sorry to hear that you have to go back so soon.  I'll definitely be thinking of you on the 29th.  It took us a long time to find the right dr who found the chiari - most of them looked right past it on mri's.  At some future point she may need neck surgery for two bad discs.  Some people think they're related - the bad neck and chiari.  Who knows.

I'm really hoping my daughter will join the chiari community.  She's turned inward lately, and I trying to get her to reach out.  There are so many great people I've heard from, including Selma.  I'll let Olivia know you're on fb too in case she likes that better for some reason.  Thanks again for posting.  I hope you have a good day tomorrow.

[katydee]

Wow, your story is remarkably similar.  DD and I were just discussing whether she should withdraw or try to make arrangements with her professors so she can finish the semester.  This is the first opportunity she's had to live on campus, and I hate for her to miss out on the college experience, as you said.  She was just starting to enjoy herself for the first time in years, but the work is just too much and she has a very difficult time staying awake.  Like you, she will probably take next semester and the summer off.

I had to laugh when you said you spent your time off learning school-related things.  DD is an over-achiever with nerdy tendencies as well.  She'll probably do the same thing.

You didn't mention how you're doing now, but I hope you're over the worst of it.  I'm amazed that you're working full time and going to school.  That's a big load for anyone.  Any you're right - Molly rocks!

[jenshead]

I'm in college - slightly different situation as I am working full time & doing my graduate degree.  It's tougher from a social perspective for someone wanting the "college experience" as an undergrad.  But Molly is right (and AMAZING)...it's OK for your DD to take time for her health.  When I first got sick, it was the middle of the semester.  I made arrangements with my professors so that I didn't have to withdraw as your DD is considering...I don't know if my experience with that would help, but happy to try.  Then I took the following semester & summer off.  College will wait!!  Depending on the program, she can probably start right where she left off and with as few or as many courses as she is comfy with.

Oh and from one over achiever to another - leaving for a while doesn't stop achievement :)  I spent my "healthy" hours learning things for when I got back to school!  Nerdy I know, but it made me feel better.

[soccero]

thank you. i deff have my days but i try to keep a positive outlook. my issues started when i was five but i wasnt diagnosed with chiari untill i was 16. the reason ive had so many surgeries first off is because i didnt have the right dr the first few times now i  with a good dr who has done my last 4 surgeries. theother reason for so many is because i have some related conditions as well as some not related lol. i hate being in the hospital but i no i need to to get better so i deal with it. um as far as friends go i have a few great close friends but i have lost some friends in the process of all this but i have also gained a whole chiari community which has been absolutly wonderful its like a place where i fit in. my latest surgery was nov 7 and my next one is nov 29. id be more then happy to talk with ur daughter and if she prefers facebook name is molly lichtenstein.thanks for all the encouragement!
molly

[katydee]

Talk about a warrior!  You have an amazing attitude for what you've gone through.  Would you mind telling me why you had so many surgeries?  It must have been so difficult being in the hospital for such long periods.  Besides the pain, noise, bad food, and lack of privacy, it must have been hard to be separated from people your own age.  That's part of what makes this situation so hard for my DD.  I imagine your troubles started when you were a freshman or sophomore - probably even earlier.  It's difficult to maintain relationships with friends when you are hurting or just plain too tired to go out.  I hope you have friends who get it.

Your opinion matters very much.  I'd rather hear from people like you, than from professionals who can only guess what living with chiari is like.  I really appreciate your taking the time to respond.  I don't know when your latest surgery was but I hope you're starting to have good days.  I'm sorry you weren't able to start college right now, but like other members have said, college will still be there.  I'm sure your family thinks no less of you after what you've been through, and if you want to pass along my DD's experience with trying too much too soon, it may reaffirm the fact that you made the right decision.  

I'd like to give your name to my daughter, Olivia, if that's ok.  She's never been on a chiari forum to my knowledge.  You've already helped me, but it would make a lot more sense for her to speak with you directly.  Thanks again - I'll be thinking of you and sending you good vibes.