So, my 15 yr old daughter was seen by a NS for an 18mm herniation without a srynx...Her symptoms are headache in back of head towards neck region, fatigue, weakened concentration, and hand tremors, which all just started her Freshmen year during a recent growth spurt.
He is convinced that the headaches and fatigue are being caused by the CHiari, and feels she will benefit from having the surgery, but also kind of left it up to us. As of now, we are going to see how she does through her Fall Varsity sport and first trimester of grades. All of her test, and Drs are out of Boston Childrens, one of the best. (Incidentally, for the first time ever, turned to me in the middle of a game, pointed to the lower back of her head and told me it really hurt.) She is a tough kid!!!
We thought we would wait and see if there was a blockage in the spine MRI, and that was negative. So we now sit and ponder if we want to put her through the surgery. The Dr admitted if there was a blockage it would have made the choice much easier. (i fell guilty admitting I would not have quite minded if there was one, then it was no longer my choice)
Has anyone decided to opt out of the surgery and suffered from it? What can happen if it gets worse. Should we sit and wait? As i mentioned in a previous discussion, this is soooo hard.
I guess what I really want to know, is with the size of this herniation, do you think things will continue to go down hill if we do not do the surgery?
Hi pammyg… i can only begin to imagine how tough this decision is for you. (Even i have had the same guilty thoughts) but its me who has the chiari and not my daughter.
i think you’re right to wait for a while first and see how she copes… as the option of surgery will always be there.
maybe you could explain to her that. you will try to make the vest decision for her… but you need her help.
ask her to do a diary. even just a simple diary of "good day…bad day etc"
Then see how many good vs bad days she has.
my husband suggested this because when i have good days im like “yeah i can handle it” but on bad days im in tears and dont think i can cope.
the diary should help stop me from making a reactive decision instead of an informed decision
Youre daughter is 15… and i think she could help YOU make the decision by doing a diary.
And that way you know fully how her day to day life is… as she might say more in the diary
good luck!
Pammyg. I hope that some others on here will speak up. I have Chiari and am planning on going through the surgery. I know the longer you wait, the worse it gets and the possibility of more permanent damage can be done. I also know that there are a couple of people on here that waited almost too long and became paralyzed. It’s a tough choice and one that has taken me 3 yrs to make. Just know all your options. Also did the drs give her the ok to continue in sports? I know that I have been limited too what I can’t do. Please do a lot of research before choosing not to move forward. Also kids tend to heal easier from this then adults. Good luck!!
Hi Alyson, thanks for the response! I was wondering...what made you to finally decide to go through with it? How large was your herniation? Just curious? Its hard to say yes to the surgery, based only on the large herniation, headaches and fatigue. She goes about her normal routine, and has been cleared to play field hockey. She just seems to tire out faster than others, and almost always has dull to moderate headache. It goes in spells, sometimes none for a week, then they come back. Just the other day she said her head felt like a migraine with a knife sticking in the back base of her skull. I truly wish i could live a day or week in her shoes, so i could see how she is feeling. She is the most stouic kid I know, never lets anyone see her sweat...so she is a tough one to judge:(
make the decision by doing a diary.