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My 14 year old daughter has been having a myriad of symptoms that have progressed to the point she cannot make it through the day at school. She has nausea every time she eats, constant headache, headache worsens with certain position changes, neck and shoulder pain, extreme fatigue, dizziness on standing and randomly, blurry vision with the dizziness, hot and cold flashes with sweating, cold and sweaty hands and feet, heart palpitations, short of breath on exertion – even singing(she has always been in good physical condition), clumsiness and some loss of dexterity, a little trouble with balance, weakness in her legs where it feels as though they will give out if she doesn’t lock her knees sometimes, joint pain, one episode of passing out in the shower, sore throat, weight loss. There is so much going on, and I’m sure I left some things out. Her pediatrician suspected chiari (and checked for numerous other possibilities that came back negative: lyme, autoimmune, mono, thyroid, diabetes, strep, slow gastric empty, ekg & echo) and ordered an MRI. The radiologist report indicated 8mm of tonsillar ectopia and crowding at the foramen magnum, calling it chiari malformation. The neurosurgeon her pediatrician referred her to disagreed with the radiologist and my daughter has been referred for counseling. I am taking her to counseling because we can’t rule anything out and at the very least she needs someone to talk to about how bad she feels. The counselor told me to keep looking for a cause of her symptoms and I totally agree. I am so frustrated! I know something is wrong with my daughter but now that she’s been dismissed by this neurosurgeon it is difficult to get her doctor to look for anything. I am attaching some images of her MRI. Any input or ideas would be appreciated.
I’m so sorry to hear about your daughter’s suffering and wanted to toss out a thought.
She does show Chiari and I find that most Chiari patients who are symptomatic have abnormal intracranial pressure. If it is high, Diamox can lower the pressure, relieve symptoms, and even reverse Chiari.
Do you have a copy of The Driscoll Theory to help you through this?Hi, I can relate to this story as my son suffered from the same disorder in the past. I just want to tell one thing to people like Dr. Diana, who doing everything to make the world a better place to live, Hats off to Diana’s efforts!!!
Hi Kat4,
I see a Chiari Malformation too, with her cerebellar tonsils (lower part of the hind brain) protruding though her foramen magnum (hole in the bottom of her skull) as indicated by the amount below the red line.I see two other potential causes of your daughter’s symptoms also:-
1. She has a retroflexed odontoid (see the orange dot) this is where the C2, the peg bone near the top of the neck is bent backwards towards the brainstem. People can have this and have no symptoms but ……..
2. She MAY also have cranio-cervical instability (see the length of the green line, this distance seems greater than it usually is) but a series of other measurements would need to be carried out to be sure. Cranio-cervical instability allows abnormal movement at the cranio-cervical (head/neck) junction, which in people without Chiari may go unnoticed but, in those who have Chiari with their hindbrain herniated into this area, head movement and position can cause many problems, as subtle pressures are applied to this part of the hindbrain and subsequently the brainstem area.
The combination of the two (retroflexed odontoid and cranio-cervical instability) can cause a ‘pincer’ movement on the soft tissue of the herniated hind brain or the brainstem.
Has your daughter had a head or neck injury ?
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