An update on my 13 year old daughter: she is scheduled for surgery at Phoenix Childrens Hospital on January 20. Her neurosurgeon had no doubt that her Chiari 1 malformation was the cause of most, if not all of her symptoms. In addition to the headaches and vision disturbances, she is experiencing numbness in her face, legs and arms, and continues to regularly miss school. Dr. Said he estimated an 85% chance of at least significant symptom relief! My daughter and I are feeling a bit "bipolar" since the decision to have surgery. One minute feeling like collapsing into a puddle of tears, and the next minute feeling grateful to finally have an answer - and solution! We are so scared though for surgery. Neurosurgeon plans to remove (and not replace) part of the back of her skull as well as her C-1 vertebrae. He will also open the dura (lining of the brain) and make it larger with something called a dermapatch. He will also remove the syrinx from her spine. She will spend two days in ICU, six days total in the hospital. The thought of this, and the amount of pain she certainly will be in, makes me feel like I can't breathe. How do I comfort her before surgery when I'm so scared? And how in the world will I survive those hours she is in surgery without going crazy?! I made her the Chiari pillow out of a "My Pillow" and also made several pillow cases for it. My daughter tie-dyed them all pretty colors. Other than that, what can we do to prepare ourselves for The Day and the days that follow?
Hi, Trish. I wanted to wish you and your daughter the best for surgery and recovery. I don’t have children and haven’t had the surgery, but I know we can all relate to being scared and needing comfort and reassurance during a trying time. I would’ve wanted my Mom to let me know she will be there for me through it all and loves me. I really think it’s that simple- reassurance, security and love. I am sure you will do just fine in supporting her. And for yourself, should you need a place to come to for support, this community is here for you. Reach out to any family any friends you feel can be of support as well. There are many discussions here on surgery preparations. Try a keyword search. Hopefully others will weigh in as well.
I should think your daughter may want familiar things from home for comfort and perhaps an iPad or Kindle for reading and activities as she’ll need to be on bedrest for sometime. As for her pain management, I would stay on her care team post-op to be sure they keep pain well-controlled.
Hugs!
I’ll be thinking of you both.
Laurie
Thanks Laurie! I really appreciate your support and suggestions! Especially when you said that it’s enough for me to be there, supporting and loving her through it. There’s not much else I can really do I guess, except pray. Surgery is this Wednesday. I think it will be such a relief when that day is over. The dread and waiting is torture.
If I'm not too late( I'm in a different time zone)- I could not give better advice than BaltimoreBaby did. :) I'm sure you being there for her will be the best thing to have.
I'm sending wishes of swift recovery to your daughter. Hugs to both of you.
Hi Trish
Hope she came through the surgery well, I only found this website a couple of weeks ago. My daughter had the same symptoms but she was severe with them. She's post op a year now 99% recovered, she still has the numbness, not as severe as it was but it's still there. Just be there for her, calm her when she gets frustrated (and she will).