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Old 12-22-2011, 10:55 AM #1
ny jenn ny jenn is offline
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Default Borderline Chiari Malformation question:

i am a 29 yr old female and was just diagnosed with borderline chiari malformation. I am freaking out!!! my gp says my symptoms do not co-inside with what the mri said..At first he gave me an apt w a neourolgist amd after the mri sd cancel the neurologist....u need a neour surgeonn. I have had headaches all my life. I was in 3 car accidents in the past 3 yrs. one was pretty bad whiplash. anyway, i got menengitis last oct and was very sick. Ever since then my symtoms have been soo bad i keep goin to my gp and telling him there is something wrong{thats why he ordered the mri}. I am an alcoholic in recovery and pain meds for the rest of my life is just not an option. i am scared and feel very alone! i havent seen the surgeon yet but i wonder should i seek help at the chiari institute instead?? how serious is this?
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Old 12-22-2011, 03:27 PM #2
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Quote:
Originally Posted by ny jenn View Post
i am a 29 yr old female and was just diagnosed with borderline chiari malformation. I am freaking out!!! my gp says my symptoms do not co-inside with what the mri said..At first he gave me an apt w a neourolgist amd after the mri sd cancel the neurologist....u need a neour surgeonn. I have had headaches all my life. I was in 3 car accidents in the past 3 yrs. one was pretty bad whiplash. anyway, i got menengitis last oct and was very sick. Ever since then my symtoms have been soo bad i keep goin to my gp and telling him there is something wrong{thats why he ordered the mri}. I am an alcoholic in recovery and pain meds for the rest of my life is just not an option. i am scared and feel very alone! i havent seen the surgeon yet but i wonder should i seek help at the chiari institute instead?? how serious is this?
do oyu havae these symptoms
http://chiarione.org/symptoms.html if you are in NY the chiari institue is the place to go if you have insurance ....
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Old 12-22-2011, 04:03 PM #3
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Default Hi Jenn

I tried to post to you awhile ago, but I lost the thread somehow. I didn't know what chiari malformation is, so I looked it up. I am sorry you mayhave this condition. You can also post the MRI results, and somebody will be able to help you understand them. You do need to do all the research you can on the condition, even before you go see a specialist. You want to be educated on the language of your condition so you will know what they are talking about. It is my understanding your neurologist was cancelled, and then you were referred to a neruo surgeon? Is that correct? No matter who you decide to go to, with this condition, I would want another opinion from a neurologist. Have both of these specialists look at your MRI would be a good idea. One may approach it differently than another. Surgeons like to operate, that is what they do the most of. You want to make sure that your condition warrents a surgery. I know you are scared, you have every right to feel that way. Just take some deep breaths and then start some homework and get your appointments in order. Does your family know about this? Do you have a good support team? Are you by yourself? I sure know how scarry medical problems can be. There will be people that respond to you that may know much more than I do about your situation. Looking up one site sure doesn't make me an expert. I just know if it were me, I would do some research and get all the facts you can. So sorry this is happening in your life, especially around the holidays. Hope you get more responces to your questions. ginnie
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Old 12-23-2011, 02:07 PM #4
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thank you for your kind words. I know it could be alot worse. Honestly i want the surgery. I cannot live w this pain! I read someone said you will know if u need the surgery and i havent even seen the nerou surgeon yet! I am not alone. I have a fiance and 4 children. i do however feel very much alone. the thought of someone cutting my skull open and messing w my brain scares the crap outa me
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Old 12-31-2011, 03:26 AM #5
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Try not to be to scared it is freaky news to get. But I thought to myself I gave birth to two children with this condition,have worked hard and lived a norml life until these symptoms kicked up , do alot of research, get more than one opinion on surgury and read all you can from people who have had the surgury they can give the best feedback.
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