Having chiari surgery this summer..

[fearlessrachel]

Hello! I stumbled across this website while researching the chiari decompression surgery, and figured I'd ask a few of my questions.
First of all, I am seventeen years old. I've been experiencing headaches from the chiari since I was twelve, but recently they got much worse, and other symptoms gradually started to appear. I returned to my neurosurgeon, and he agreed that the surgery would be a good option for me.
I, however, am a bit terrified. I've had surgeries before, but never anything quite this serious. Basically, I just wanted to hear stories of other peoples experiences after their surgery. How did you cope? Is there anything I should know?
I'm going in for the surgery on July first, so I have a bit of time to prepare, but that also (unfortunately) means time to worry.
Also - I'm supposed to be going off to college at the end of September. I'm not sure if I will be fully recovered then, or if I'll need a couple more months of rest. Any ideas or suggestions?

Thank you!

[selmaS]

  Hi and welcome to the Chiari forum.

U will find all sorts of replies to questions like these....I firmly believe that we need more time to heal so we do not suffer a set back...and they can occur if we do too much too soon.....and we do have to look for ALL underlying related and non related conditions as they can affect how we feel and heal post op./

Make sure now that everything has been ruled out, and plan on doing nothing but resting and the basic post op exercises so u can see where ur body is....

We all heal at different rates....and handle pain differently....and fear...yup, we all have it with a surgery like this....I do encourage all the members here to write a journal on their surgical experience....so to read them all u have to do is click on the members name and that will take u to their profile page to see if a journal is there...and read ....some like myself u may need to be friends first to read it...so just send a friend request if u can see there is a journal but can't read it...

The best thing I can suggest is to read journals, and the Health Page articles we have posted ....one on Hospital tips...and rule out those conditions like ehlers-danlos.... as it is that important !!

[Mel5056]

Hi liz,  its great to see someone closer to my age on here.  May i ask how you feel now....3 years later?  I just found out i have this,  have little kids and honestly am freaking out a little.   I have never had any issues sleeping but now find i am convincing myself to relax and think of other things other than the way i feel (physically and mentally) just so i can sleep.   Anyway just curious how you are getting along now.

Thanks...mel

[ZilZil]

I can't help but say "congratulations," although it may seem weird, both for the surgery and for going off to college.

A lot of it depends on how healthy you already are.  I bounced back pretty quickly.  I teach college and my surgery was 23 Dec 2011 and I was skyping in lectures by the third week in January and was back in class by the second week in February.  In retrospect, that was probably a bit too soon, as I was still on a lot of meds and that may not have been the best state of mind for me to be leading class discussions.

I would think the hardest part for you (pulling from my own "freshman experience") would be to keep it low key.  You're going to want to do and experience a lot of different things, some perfectly innocent, some not so much.  It's college.  But you need to listen to your body.  You may be on a variety of prescriptions for some time and you really *can't* mix alcohol with those.  Whether you drink or not or think you will or not or are of age or not, you'll be faced with that...I promise.  But mixing some meds and alcohol can kill you.  Be careful.

Be aware of your sleep patterns.  You'll probably feel great at about two months post-op and reconsider that at about six months.  I did anyway.  At two months, I felt fantastic and I over-did it thinking I was all-better-glad-that's-past.  I had to back up a little and (using the words of my doc) "let myself heal" months 5-8 after my surgery.

Watch your mental health.  I love your username.  I hope you're always fearless.  But if you start feeling out of sorts, either physically or mentally, go see your doc.  There's a lot of research and precedent for depression issues after major surgeries, not just chiari.  Remember that they're moving your brain.  There's a lot of unknowns with that.

Good luck and remember that it's up to you to take care of yourself.  That's a hard lesson at 17 (or 37, when I had my surgery).  Also, you don't have to finish in four years.  Trust me.  I finished in 7, my masters in 3 and teach college, own my own business and am doing just fine.  There's no prize for finishing early at the expense of your health.  Mental or physical.

Take care,
Liz