Headaches again

[Tracy16]

Hi, my 16 year old daughter had a chiari decompression on Jan. 2nd 2013.  It was a very rough recovery and so when she finally started to feel better around the 19th we were thrilled! She is a sophmore in high school and was released to go back on the 22nd of Jan. She was able to attend for 2 days before the migraines made their return. She had one start Wed. eve ( the 23rd ) and it has not let up since. She is taking ibuprofen around the clock and it helps very little. She said these are worse than they were pre-surgery. I have called her doctor on Thurs., Fri. and today and have been directed to two different PA's that know nothing about my child or her case. We are so frustrated. She has been through enough and we thought the worst was over. Any suggestions would be much appreciated! Thanks!

[frankie_rush]

She has been back to early.  She does need to rest and let her body heal.  She is younger but a body is a body.  It will take time for to do this if not it will and can hender her recovery.  

[abbey3268]

I feel like the doctors don't know how to prepare you. So many of them don't fully understand the extent of the recovery or the extent of the malformation itself. It's difficult to find a good doctor that's able to do more than just cut. Websites like these are a great place to gather information to arm yourself for the Chiari battle. Just remember that you and your daughter are not in this alone!

[Tracy16]

oops typo! God bless you all!

[Tracy16]

Thank you all so much for your responses. There is so much the doctors don't prepare you for!  You have brought me to tears by just having someone who understands what we are going through. I will not be sending her back to school. I agree that it is too much and we are exploring options for home and cyber school. Gos bless you and I wish you the best! Thank you!

[klharmon]

This is the first day I have found this great community so I'm new..but I did want to say that her returning to school so soon is def a bad idea!! I didn't return until the following semester..I was home schooled which sucked because I was 15 when I had surgery...missing out on high school..but she needs to be resting and easing back into her routine over months! Even when I returned to school (I want to say I missed 5 months? But 2 months was spent in hospital for stomach issue..turned out to be Crohn's..then mono and when they did my first Lp they found meningitis) followed by chiari surgery...point is that's 3 months home recovering and healing..get her on homebound at her school and REST :) tell her I am terribly sorry...I hated the surgery and the stuff I missed out on..but really the rest is worth a couple months of high school

[wnzday]

oh my,
She definetly should be home resting.I know she is younger than alot of us here, but even so, she just underwent a HUGE surgery, her body and most importantly her brain, muscles, etc. need time to heal. She will only set herself back if she pushes too hard. I was off work 3 months after my surgery before able to return to work, and even then it was only 1/2 days for a while.
I think she will find that she will wear down much quicker now, even if she doesn't admit it, she needs rest. Pushing herself to go back to normal so soon, can and will be frustrating and cause relapses. I found that too much stimulation from people, noise, everyday life happening all around me was way too much for my brain to absorb for at least the 1st two months.  This is a tough recovery.

[abbey3268]

I agree, going back to regular activity that soon is going way beyond what the body is capable of. I had my surgery during my senior year of high school and was out for at least a solid month and a half. And even when I did go back, it was a very gradual return. The body needs time to heal and the muscles need time to return to normal. From someone who has had different types of surgeries in the last 4 years (including lumbar spinal fusion), recovering from decompression is the by far the most difficult and painstaking of them all. I know my family had a difficult time watching me go through that process, but really the only answer is more time and enough pain meds to stay comfortable.

Another piece of advice I have is... stay strong for her! This is a difficult process to go through, especially so young. I was diagnosed at 17, right when you think you're invincible and capable of anything, life throws this curveball at you and shows you just how fragile life can be and it's not easy. Emotional support is a big part of this whole deal that I feel some of us tend to overlook because we like to think we're tough enough to make it through on our own.

[selmaS]

  Hi and welcome to the Chiari forum.

It is FAR TOO SOON for ur DD to go back to school....she should home school when she is up to it and allow herself to heal.....at this point post op many of us were just stepping down on the strong pain meds.....for her to be off and back to a reg schedule is not right.

It can take up to 2 yrs for the nerves to heal....doing too much post op can cause set backs...she has to listen to her body...lifting is a BIG NO NO so how can she carry books and climb stairs...

Was she checked for related conditions b4 surgery....syrinx, tethered cord, ehlers-danlos, ICP, POTS?

Ur DD needs to slow down and rest, and possibly get back on her meds the stronger ones to get this pain under control....

She may only be able to do a class or 2 to start when she is ready, but it is far too soon.

BTW-many of us have symptoms reoccur at 3 months post op as we heal....so there is more to come and it is best to be resting and allow the body to heal...there is some exercises that should be done...but we can also push and do too much.