Chiari Malformation 1

[Guest guest]

I am a wife and a mother of three small children ages 3, 4, and 6. I was

diagnosed with having a 10mm chiari malformation 1 in December of 2009 by my

physcician during an MRI. Before the MRI I was complaining of nauseating

headaches, loss of balance, memory problems, pressure in the head, neck pain,

and tingling in the arms and hands.

Not knowing what chiari was myself or having it explained to me I decided to get

a second opinion so my physcician referred me to a neurologist. My neurologist

told me that he believed my symptoms had nothing to do with my chiari and that I

was just suffereing from tension headaches. He started me out on 25mg/wk1,

50mg/wk2,75mg/wk3 topamax and 4 weeks of physical therapy three times a week. I

did about a week and a half of physical therapy cause when it came time for my

massage I could feel tingling shoot up and down my arms worse than ever and it

wasn't making me feel any better. With the Topamax I ended up getting really

sick and lost 20 lbs and my mood had changed from the start. I went back to my

neuro and he suggested that we give topamax one more try since we aren't at it's

working level (100mg) and then I would try the DHE IV infusions and then that

will end the cycles of these horrible pains. Well I sat through the DHE

infusions and I increasesd my topamax to 100 mg one week before the infusion

like he told me to and neither one helped me. Two days later he tells me to stop

taking the topamax altogether and now I don't know where to turn. To keep

putting my trust in him or find someone who knows more about chiari that who

could tell me exactly if my problems are chiari related. I'd like to live a

normal life again. I'm missing out on a lot of important things that I wish I

could be doing. Somebody please guide me or at least let me know that you've

been there and understand.