Hello, my name is Dana and I was diagnosed with a posterior fossa cyst and
an acquired Chiari 1 malformation (5mm) last year at 28 years old. My
symptoms starting off a numb/frozen feeling in my left arm. I let it go for
a week or so and then after it didn't go away I called my GP.

She had me
come in and did a once over and said it was probably a pinched nerve and I
should see a chiropractor. I scheduled an appointment with a Chiro and after
my 2nd appointment I started having all this tingling in my head and my left
side of my face would feel frozen for seconds at a crack. I stopped going
to the chiro immediately and called my doctor and she told me to come back
in and after 3 pints of blood tests, told me I was completely healthy. So I
went back home and copped with the tingling for a few weeks until my legs
started to feel strange and my muscles were twitching everywhere. My doctor
ordered an MRI telling me she was looking for MS, on my birthday a fews days
later, she called to tell me that there was no sign of MS, but they had
found something interesting. That is when they told me about the cyst and
the Chiari. Obviously I had never heard of either of these things. She
recommended going to a neurologist for further evaluation. The first
2 "doctors" I saw sucked! They had no more answers for me than I did. A
family friend recommended I see a doctor out of Froedert that was supposed
to be fantastic. I clicked with him right away, unfortunately he told me
that I was 1 in a million and that I would be better off with a different
neurosurgeon who had experience with my condition. I went to see Dr. Wade
Mueller who turned out to be just as fabulous as the other doctor. He put me
through a battery of neuro tests and came to the conclusion that it's not
affecting the function of my brain, but it doesn't mean that it won't. He
monitors me with MRI's every 4-6 months and so far no change. My symptoms
haven't gotten any worse, but they haven't gotten any better. They include:
burning in my head and sometimes my arms, dizziness (very sporadic), muscle
twitching (everywhere-didn't know your bum could twitch), feeling of weak
muscles (mostly in my left leg), chronic ear popping or whoosing sound,
headaches (more like pains or the ones you have when you drink something
too cold), nausea, blurred vision (only when I look at certain things), neck
& back aches, etc. The symptoms come and go and really haven't interfered
with my life to the point or having surgery. I think once you find a doctor
that you connect with and that validates your concerns, half the battle is
won right there. Thanks for reading my story and hope it helps someone. This
is an extremely valuable site for information. Please feel free to email me
at This email address is being protected from spambots. You need JavaScript enabled to view it. with questions or just to vent.

Thanks - Dana