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?

[motherofher]

My daughter had  surgeries for the tonsils and the neck and the tethered cord and now she has "a sleeping disorder" where she blacks totally out - twice in her car - resulting in hospital stays.  I am concerned that it is something that is totally related to Chiari and can find no definite answers.  Many doctors and hospitals are unaware of how Chiari's affect the body and the mind. I am afraid of this rush to judgement and if diagnosis is correct then how to relate it to Chiari.   Do any of you have any information.  I have offered to send her to New York to again undergo surgery or at least get tests run years ago because I knew something was not right and now the narcolepsy after a short time in hospital. She is not receptive to another surgery.

[Viva001]

I just noticed the part about your DD's neck--that could be it!  I had a laminectomy first, 12 yr ago; I was not fatigued (nor dizzy) after that surgery.  I am 3 mo post op from posterior fossa decompression, same NS.

My NS said that the 2 problems go together ~40-50% of the time.

[selmaS]

Hi and welcome to the Chiari forum.

How long the surgery takes depends on ur Dr and what they find when they get inside and what all is planned...it can be ne where from 3 hrs up to 7.5 hrs....

Same thing for how long it takes for u to recover it depends on u, and how u deal with pain and healing....if u typically heal slower, then it will take longer then some of the people....the biggest problem I see people have post op is the feeling great post op and rushing to do too much and then have set backs....rest, and remember the meds r hiding a lot of the pain post op...and as u heal and get off the meds u may feel some of the symptoms as part of the healing process.....

U will need help...there is a list of what not to do  post op.....and u can not do house work, lifting , pushing, pulling .....bending ....

Recovery also depends on how long the symptoms have been affecting u and if u have ne other related conditions.....

  May we ask where u r going?

   Post ur surgery info on the surgery date thread and do have someone post updates on ur progress : )

[Viva001]

I wish your DD well.  I was just finishing up my degree in college counseling at 45, when I became very ill.  From my perspective as a college counselor and a Chiari patient, I agree that she is probably taking on too much.
If the counseling dept doesn't take her needs into consideration, then IMO, the college is not living up to their mission.  There IS a way to drop out or drop back due to poor health.

As per advice above, she needs to take as good care of herself as possible.  I'm fortunate in that my NS recognizes the seriousness if this condition and does not expect me to bounce back in 6 wk.  (if anything, he is overprotective; how sweet is that?!)

My major symptom was fatigue, not pain--I was sleeping ~20 hr/day for > a yr--so I was Dxd with chronic fatigue syndrome.  This is what I have learned:  sometimes the body interprets (or disperses) pain to help us continue to stay function, or at least stay alive.  I think if she needs that much rest, then she needs it.  She may also still need pain meds, the right kind, if her body is protecting her from pain.

Also, sometimes w\Chiari, it takes a long time to heal from that compression.  Think of a hose that has a kink in it--it never goes away, does it?  I suspect that some of us don't heal as well because we still have that kink (as well as underlying conditions).

I have a Rx for Ritalin from my pcp that I have used only a couple times, when I had to drive for several hours. My NS is very opposed to frequent usage of stimulants to override fatigue or attention deficit for our condition.

I hope I was of help, in addition to the good advice you received above.

[lulu313]

Hi I am 38 years old and scheduled for surgery Oct 17th. Im really scared and worried, I have a 17,16&11 year old and I was wondering how long it will take for me to recover and if I need to find help after the surgery and for how long? Also how long does the surgery itself take? And how long does it take to get back to normal? Thank you

[soccero]

thanks a lot i really appreciate it! i hope olivia is doing better!
molly