My daughter is 28 yrs. old.. She was diagnosed with hydrocephalus due Dandy Walker Syndrome(cyst) at 3 weeks of age. She was shunted at 8 weeks. She had a shunt revision at 5 and no problems after that until last year in June or July. Her distal tubing had come dislocated from her valve but no one felt it medically necessary to do surgery. We finally got shunt revision in February of this year. She has been dizzy, numbness in her legs and feet from time to time, muscle weakness, abdominal pains, horrible headaches, can't stand or sit for long periods of time, nausea, very fatigued, scoliosis, insomnia, very frequent urination, she can no longer run normal either, is forgetful, doesn't do well with noise and has moodiness. We recently had an MRI done and the neurosurgeon pointed out that her cerebellar tonsils are in the spinal canal but not pressing on the brain stem yet. She also has a herniated C5/6. He said he wasn't going to say she had CM but to follow up with our neurologist. The neurologist put her on amatriptyline(spelling) and she'll have a Brain EEG tomorrow.
Anyone have any of these symptoms that has been diagnosed with CM??
The neurosurgeon said if she has hand weakness then we should worry about it being CM. looking for answers. My child is miserable...


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Hi sorry to hear about your daughter feeling that way, I am 26 and have chiari malformation and my symptoms are much the same as you daughter's with variations here and there. Although I have numbness in my hands at time and this condition can make life hard for me also with having youngsters too, so my neurologist has placed me on the waiting list for decompressive surgery. I really hope you get to the bottom of what is causing these health issues for your daughter, but I have found a massive challenge in having a chiari is not just the malformation itself but the awareness of it... Most doctors I tell about it have no idea what it actually is and the symptoms can be mistaken for many different things so it is hard to diagnose without the MRI.

Good luck and best wishes,
Chantelle