When my daughter was 11, we took her to an orthopedic doctor who said she had a left thoracic curvature of her spine. The doctor said a left curve is usually associated with a spinal tumor or Chiari and that we should return in 6 months for an MRI. My daughter always had headaches in the back of her head, so I didn't want to wait 6 months. Instead, I had my family doctor order the MRI, but he ordered it of the spine only. It showed no tumors, and she hit puberty with only mild curvature progression, and I never heard of or worried about Chiari again.
Fast forward 8 years. My daughter is now 19 and lives in a dorm. The headaches in the back of her head that she has always had are now horrendous. She goes to a doctor near her university and he, over one semester, tries her on every headache medicine in the world, refers her to a neurologist 6 weeks out, and essentially stops returning her calls. She had to withdraw from college for the next semester and moves home. She wakes up with these headaches every single morning. She said she feels "seriously, mom, like my head is full of water and it's about to explode". If I push on the back of her head, she has momentary relief where the headache goes away until I release the pressure. She has been to the ER twice for pain relief while waiting for the neurology appointment, and I take her to our old family doctor hoping to get her some narcotics or something to help. He said "this sounds like normal pressure hydrocephalus or Chiari". I said, "you probably don't remember this, but many years ago we ruled that out with a spine MRI" and he said, "No, she'd need an MRI of her brain".
I am at this point really worried. She has an MRI tonight, but we still have 2 weeks before the neurologist appointment. Do the headaches associated with Chiari stop when pressure is applied and then return when the pressure is removed? Would a typical 11-year-old with a Chiari malformation or syrinx or something have only mild symptoms until she hits young adulthood? Any other things I should look for?
Everyone's Chiari HA's r different and it does sound like she may have ICP in addition to Chiari.....Once she has a cervical spine MRI , a Brain MRI w./wo contrast and a CINE MRI to check CSF flow, a thoracic and lumbar spine MRI to look for syrinx's , disk issues and tethered cord...all chiari related issues....then in addition sleep apnea, ICP, POTS< ehlers-danlos should also be ruled out.....
Stress and diff activities can cause symptoms to flare....since this is congenital many symptoms we do not recognize as a symptom and more like normal everyday sensations....we adjust and get so use to them we do not always connect them to a health issue.
Please take ur time researching Drs, find a true chiari specialist...compare them see a few...finding the right Dr is key.
Thank you so much for the speedy reply. I will have to Google a lot of your abbreviations, ICP, etc. I am disappointed that it takes so long to get into a neurologist, and I am going to feel terrible if she really does have this malformation and we missed out on finding it over the past several years.
Look for the Computer shorthand and abbreviations.....
Well things move faster now with the advent of the MRI, when I was her age there was no such device to get the dx, so I was 48 when I got a dx.....do not try to rush the answers, take ur time annd learn as much as u can.
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