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?

[soccero]

hi! my name is molly and im 18 i am the person selma is talking about. im so sorry to hear about ur DD and whats happening. i had my first surgery in aug of 09 for chiari and on nov 7 just had my ninth surgery. i was suppose to go to college this fall at salisbury university. after being in the hospital for the month of july and the first two weeks in aug i had to make the decision that i just could not manage in college right now. i was so afraid of what my parents would think and my older brother who is a senior in college. but i no i made the right decision for me and i have come to the conclusion that this is all that matters. ur DD is NOT a failure she is a WARRIOR and she is not letting anyone down but just taking care of her health which is most important! people will see how strong she really is and if they dont then they were not a good friend in the first place. please no this is all my opinion and i am not a dr just a kid living with chiari eds ect.
best wishes,
molly

[linnielou232]

Just wanted to let you know I am on here all the time.  It's good therapy, and if I can do anything to help I am here for you.  This forum has helped me make decision with surgery, has helped with recovery, and if I can help any one deal with this I would love to.  Just let your daughter know she is not alone and she definetely is not a failure.  She will just have to celebrate her graduation a little later than usual.  Something for her to look forward to.  I know how quilty she is feeling.  I dealt with that with having to quit work, but with the blessing of Selma and her unconditional understanding and reaurrance it has gotten me through so far and so will your daugher.

[katydee]

Thanks again.  Please send my best wishes to the student who just underwent another surgery.  I'll be praying for her.

This forum is invaluable both for chiarians and their families who don't understand what they've just gone through.  I wish I had discovered it a year ago.  My hope is to get DD to make the connection herself, but right now she's too distraught to talk to anyone.

[katydee]

Thank you for sharing your story and for the encouragement.  I read your reply to DD as she was walking back to her dorm, but it probably wasn't the best timing because it make us both emotional.  It does help that there are people who feel exactly as she does, though she continues to be hard on herself and feels guilty when she has to sleep rather than do homework.

I wish I could ask you more about your own experience, but I have to go out shortly.  Thanks again, and hope you have good days ahead.

[selmaS]

  I know of a member that is young and supposed to be in college and ur words  sounded just like hers...it echoed what she felt when she made the decision not to go this fall.I agree it is an emotional choice and we all tend to feel like we r looked upon as lazy as u can not see what is wrong with us, we look fine...but do not have the energy to do what we would like.

  This member just had more surgery and I am not sure if she is up to posting, but I will ask her to pop on when she is up to it.

   "selma"

[linnielou232]

I am reading your post and I got really emotional, because being a chairian and having  surgery sounding like same as your daughter I can totally relate.  I am 49 so I am a lot older, but I know the flustration.  With me I had to have acturally 4 surgeries in 4 months.  3 of them on the head.  It really set's us back having surgery.  I never had surgery before having decompression surgery.  It's a major surgery that I think for people who were active, people before being diagnosed has a big problem with.  As Selma states and I have found out that having surgery isn't a cure.  It help's and I don't regret it for a minute, but it is a life altering.  I am dealing with not being able to return to work.  A job that I loved and I hated to leave, but I know in my heart I can't do any more.  Please tell your DD that she is not alone and she should only do what her body allow's.  I know how flustrating this is.  Thing's I used to be able to do I can no longer do.  With your daughter with school I would think her having her head bent while studying, looking up at board at school,  thing's like this still give me headaches and she should avoid for a while.  She is not a failure, she just need's to take time for her self right now.  School will still be there.  She will just finish a little later than planned.  It's o.k. to look out for our self's and she will learn it doesn't matter what other's think.  You just worry about you and your family.  As I said I am 15 month's post op and I am dealing with the same issue's.  It is flustraing, but having this forum to come and talk to has helped me so much, no one else understand's.  The healing process is a difficult one.  I was a person that though ok I'll have this surgery and get back to my life.  God had different plan's and it's for the same for your daughter.  It's good that she listen's to her body and when she need's to rest, rest.  My NS told me the #1 key for recovery with chairian is Patient's.  Your DD dealing with school, the pressure of it all just isn't worth is.  Ask her to try to lay her head back and rest it why reading, same as looking up while in school.  I don't know if these are things that still bother her, but these are the issues I deal with.  Also I can't be around a lot of noise.  I don't think we realize the seriousness in having this surgery and also just having anestia.  I never realized what it did to our bodies.  It's ok please tell your daughter that for me, and you are in my chairian prayer's.  I know how you are feeling, but just take one day at a time.  Maybe your daughter need's to take 1 class at a time.  Only she know's.  I wish you the best. Your not alone in this jouney.