I just need some advice, 10 year old daughter was diagnosed on Tuesday

General
1

I guess we are lucky because my 10 year old only started complaining about neck pain about 2 months ago and she was diagnosed on Tuesday. She was diagnosed so fast because she besides the neck pain she started vomiting on a regular basis (couple times a week), so Her doctor thought it might be a brain tumor and found the chiari 1 malformation. she also is recovering from mono.

I’ve read a million websites and I’m sick over this. We have an appointment next week but there are a lot of things I haven’t seen anything mentioned.

  1. why does the pain come and go? At first her next only hurt a couple times a week. Now, their are times of the day she is fine and other time she is in pain.

  2. she never says her head hurts, it’s always her neck.

  3. she is clearing starting puberty, is there anyway her brain could be growing faster than her skull and eventually her skull catch up and everything go back?

  4. I understand the surgery, anyone have it and become symptom free?

  5. can she fly on a plane?

  6. she had MRI. Is there any other diseases that sometimes get read as chiari but are something else?

Please if someone can help me. I would be so grateful.

2

Hi moonsunsky,
I myself are very new to this and older then your daughter
But have a read of my page and story. I don’t know if it will help out.
The pain definately came and went for me but no answers for why
I suspect starting puberty is when it all started for me but not knowing
Always treated it at a chiro/Physio neck pain and headaches.
I don’t believe that it can ever catch up that we are born this way.
I am now 9 days post surgery and things are still progressing really
Well and extremely improved but it is early early days but very very positive.
I spent January in Vietnam flying from Australia. Got a little sore and stiff
In the neck but just figured squishy from international flight
Managed with pain relief and no other side effects…
Hope this may of helped, or feel free to message me if I can help
Answer more questions. I too am learning xo