So the update on my son is that he will be having decompression surgery on August 1st. He told me laying in bed the other night that he didn’t care if the surgery made him be able to read and write, but that he is just ready for the pain and the headaches to go away :(. Bless his heart! I am still soooo very thankful that I finally got answers! Prayers would be greatly appreciated!
What a trooper! He sounds so brave... will be praying for him!
Wow, that poor kid... You're both in my thoughts.
Kids are so awesome. So strong and so resilient. He’s going to do great What a brave guy! You guys are in my thoughts!
Thank you all for the prayers! He is so brave! I am ready for the surgery so we can start the healing process!
Just wanted to touch base with you, my 10 year old, Julia was decompressed 5/15/12. Julia didn't even flintch when she heard she could need brain surgery. Her response was Sign me up - if it takes away even some pain, that's great and lets make sure it doesnt get worse! If you ever have any questions, Im here and I hope your brave little one knows how many people are thinking of him and wishing him well!
Nicole that makes me feel so much better! I have so many questions I have no idea how long the recovery time is going to be, or what to expect!
I have to tell you the worst part of the entire deal was after surgery in ICU, those first few hours- Julia fought her way out of anesthesia so they administered ativan twice to call her down. That was scary, she was asking for myself and my husband and we were right there but she couldnt tell, she tried taking the iv's out, tried sitting up- all things that she should not do- but once the medicines kicked in she was better. She was only in icu for 24 hours and the constant nurse support really helped. She couldnt get comfortable and you could tell when the pain meds were wearing off. Once we were moved to a regular room I felt like the hospital just wanted us out- which scared the hell out of us! She was still in pain and I didnt think she was ready to go home but she was. So she had surgery first thing Tues morning and was home by 6 pm Thursday. Pretty incredible for brain surgery! Once she was home the healing really began, what a feeling watching her sleep in her own bed! The pain became manageable on tylenol and she started doing neck rolls and stretching and that helped her alot. She slept just ok at first now she's sleeping like a teenager! I was a nervous wreck walking behind her constantly and following her around but she was really good. She had facial swelling from the steriods and ate like a maniac for about a month- I was glad when that was over. So now we are 2 months post op and she is retuning to her "normal" self. Alot of swimming and even back to basic karate. SHe gets frustated because she is a softball player and still cant play or the fact that she is back in regular karate not the advanced classes she is used to but she has alwasy been hard on herself. We go back to the neurosurg on 8/15 for follow up spinal MRIs to see how everything looks. She hasnt had any of the classic chiari headaches but I still hold my breath when she sneezes, she does say she can feel it sometimes- I kinda hoped it would be gone but we all know the surgery is not a cure just a treatment. Julia had the decompression, c1 lamienectomy and duraplasty, she did not have a syrnx. I think we were lucky to find her herniation so quickly and getting her the surgery wasa the right decision just still trying to wrap my hands around this chiair world that we are now in- I wish I could strangle it but since we cant we just do our best. this site has helped so much so listen to all of these wonderful people. Kids really do great- Julia continues to amaze me everyday! If you feel up to it we put together a video diary of Julias hospital stay on my page under videos. It might help to see what it looked like for Julia at least that's why we put it together, thats what I was anxious about- what is she going to look like so I hope it helps. Please ask away any questions and give your angel lots of love from someone who knows what its like! So glad to have the chance to talk, it helps me alot to feel like Im helping someone else in someway! xoxooxoxo
Poor thing! I will pray the surgery takes away his pain. My son was decompressed on March 13th, his headaches are pretty much gone I think he may be having some pressure, but he doesn't seem to have the headaches he used to.
Actually the funny thing is I had googled CM recovery and Julia’s video popped up and Clayton and I watched it together like two weeks ago and last night after I commented back I put two and two together! I have watched it a lot and it helps put me at ease! I am still worried as any mother would be! Thanks everyone for the prayers and kind words!