About Me: Female, crystal lake, IL, member since Nov 2008
had all the symptoms of Chiari for many years but no diagnosis but low lying cerebral tonsils. Finally got the diagnosis but the neurosurgeon says I have a normal brain so she doesn't want to do the decompresion surgery. I was sent to a migraine clinic and have been tre
[More]ated with topomax for the headaches. So far so good. Update.... topomax had too many side effects so dr took me off it along with the pain meds. She sent me back to the NS dx not migraines (what a surprise)
i know how that is. im in a travel softball league and i tried to put off surgery until after the season but it got so bad that i couldnt play anyway so i went in, but all i wanted to do was lay in bed all day too. im not sure if it was the intensity of the pain completely its just that it was there all the time non stop and was getting more intense. but like i said my surgery was a success, i hope yours goes just as well, good luck!
sorry ur having so much trouble. last year i was having bad symptoms too, the dr put me on topomax and it made things incredibly worse, but when i saw the surgeon he said that surgery would be a good idea considering the extent of my headaches. if u dont mind who are u seeing?
I got your message. I'm sorry your Chiari is giving you so much trouble. I hope your trip to the Neurosurgeon is coming to produce something other than another headache. I have been doing o.k. Same old stuff. Not having as many severe headaches lately. I can't sleep in a bed anymore. I can't last more than 5 mins. before I feel a headache coming on. As long as I get up and sleep in my chair the headaches are managable. Still pee all over myself. Got sick of hauling around a bag of pee so I haven't had my cathiter in for about 3 wks. Sometimes I make it to the bathroom and sometimes I don't . Stephen is doing fine. He is still in Iraq, unsure of when he will come home. Christina has settled for a short while in Oregon She says it's beautiful there but very cold. san
Hi sis, It's been long but I'm here now. I hope you are doing well. I was told that you have been back to your Neurosurgeon. I don't know what came of that. I will be on this site more often now since the holidays and my illnesses have settled down. I love you and miss you. I hope the Chiari isn't giving you major problems. Get in touch soon ok
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