Quote:
Originally Posted by res5562965
I was diagnosed with Chiari I Malformation at age 48. I started having "strange" symptons probably about 5 years prior to that. Although the Chiari (tonsils of the brain herniated through base of skull) did not appear to be severe my symptons only worsened. If she is already having problems with sleep and balance her Chiari may not be as simple as your doctor thinks. The first neurologist I went to actually told me that my problems were not neurological and referred me back to my primary physician. I had gotten to the point that if I sneezed, gagged, or coughed I would fall down and not be able to raise my head and I slept ALL the time. My primary physician LISTENED to me and he diagnosed the Chiari. He immediately sent me to another neurologist and I had shunt placed in my brain that allows my spinal fluid to move from my brain. That fluid build up was causing pressure on my brain and the correct diagnosis and shunt probably saved my life. I did however end up having the Chiari Surgery (Feb 2011) where the opening at the base of my skull was enlarged therefore preventing the pressure of the herniated tonsils of my brain causing unmanageable pain. The point of me telling you all the above is to advise you to find a doctor that will listen to YOU. I have also read that physical therapy can actually be dangerous to someone with Chiari, but I have not had a neurologist agree with me on that. I refused physical therapy. I still have some pain but I am prescribed pain medicine. My memory has been affected but am doing pretty good right now. Hope my experience helps you find the information you need to get your daughter the attention she needs. (I am in Georgia)
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Hi, I am a 48yo female from Melbourne, Australia and i too have a similar story to tell as the one above. I've only recently been diagnosed with Chiari Malformation after symptoms beginning about 5 years ago, tho thinking back now, they probably began earlier than that. After being tested for carple tunnel syndrome, arthritis, even had heart checks, xrays, ct scans, it was only after finally having an MRI scan that it showed what was wrong. Other than Chiari, i also have something else wrong which causes extreme pain. Tho i cant remember what it's called. Is it the Syrinx??
The pain is every day, some days better than others, tho sick of taking pills. My fingers are numb too, headaches, memory loss at times, hard to concentrate, ears ringing, tired most of the time, grumpy, no life, i've had to stop work and my daughter who is 17, i worry for her in case she has it as well, as she has shown signs
I want to be a better mother for her, be able to do things together instead of her coming home and me being in bed, pretty much most of the time
Anyway, i'm still waiting for my surgery. Not much gets done here with our Health System unless you are literally at death's door. I'm going to see Neurologist in just over a week again, to discuss more about my 'condition' and surgery.
I do sympathise with all who have this condition, as i wouldn't wish it on my worst enemy.
Keep smiling, cos at least we are still here to talk about it.
I also lost a daughter to Biliary Atresia, tho that's another story
Love and best wishes to you all.
Meggsy xoxoxo
