decompression surgery recovery

[anton3]

My 7 year old daughter had surgery in May.  SHe is still not the same child.  She wakes up everynight screaming.  she says she is scared and her head hurts.  She walks like she is not balanced.  Is this normal or is something else going on?  I am worried.  Also, the back of her neck is still very swollen.

[shanmomof3]

Hi and welcome to the forum! I am SO sorry your little one is having to go through this! That being said, the younger ones seem to bounce back much quicker and easier than us adults! I dont have a child with Chiari (i have it myself) but two of my children have been through major surgeries so i do understand some of what you are going through as a mom! The only advice i have there is to be strong and try not to let him see you upset (leave the room or turn away if you have to). As for after surgery, i can only tell you what i have learned from others (and i'm sure more will share their experiences with you). My decompression surgery is just 3 days before your son's on the 24th. Now all drs are different but most people will be in ICU for 24 to 48 hrs after surgery and then in a regular room for a few days. From all the pictures i have seen of people post op there is no change in the way they look, just a scar on the back of the head. I hope this helps and please ask all the questions you need to, we are here to help! Also, please post your son's surgery date on our surgery thread here in the forum so that we can be praying for him that day! Blessings ~ Shannon

[mominlovewiththree]

My little boy (6) will have surgery in Dallas on may 27th and I am very scared. I don't know what to expect... will he be in ICU for a while or how will he look. the surgeon was great when we met but I was not sure what a questions to ask and now we are 400 miles away. what is to be expected for my little guy. Barring all complications of course. The cerebellar tonsils are herniated 15mm which I hear is a lot. He is very symtomatic and the dr says this can't wait. Any feedback will be helpful.Thanks.

[beaglefreak]

Hi there, I"m about 2 months post op and still weep about the moment I was put under with anesthesia... I suspect because I thought I was going to die.  I wonder if that's happening to her.  My stay at the hospital was also traumatic and very painful, so maybe she also is reliving some things.  

On the physical side of things... the fibromyalgia pain I had before the surgery has worsened dramatically following surgery, which I have heard can happen.  Pain management continues to be an issue.  But the swelling in my head was controllable with prescription Advil, which I am now off of. My balance issues cleared up after getting off Percoset and Flexeril (Oxycodone and the muscle relaxant), both of which can mess with balance and coordination. I haven't had any other complications.  It sounds like your poor daughter needs some help soon.  Best of luck to you both!

Megan

[selmaS]

Hi Call the dr and express ur concerns...if he is equally concerned he may move up the appointment time and date.

I am now 2 months post op as well....and have been having acid reflux more often even tho I am on meds....and I have nausea and IBS issues that come and go.

I must admit my head does feel diff at times the scar has a burning feeling...again it comes and goes...and for a child I would have to guess very confusing as it is for me as well.

She may be over compensating bcuz she is scared...ask her how she feels about the surgery ect.....

Please keep me posted
Godspeed
"selma"

[anton3]

She spent a week in the hospital and saw the surgeon everyday,  We saw him again about 2 -3 weeks after the surgery.  He was very happy with her progress.  We have an appt with him in two weeks again.  But I am worried.  Cognitively she is okay.  Its physical.  she's slow at walking and looks like she is dizzy.  She just seems unsure of herself.

[selmaS]

Hi and welcome to the Chiari forum.

Did she have an appointment with the surgeon after surgery?....I had surgery in May also and saw my NS 3 weeks later.....my next appointment is in Dec.

U should get in touch with the dr as other related conditions can be triggered from a PFD or she may have an infection or a CSF leak.

Everyone"s rate of healing will be different, but she is approx 2 months post op, so I would get on the phone ASAP and talk with her dr.

Please keep us posted on her progress

"selma"