Any advice is welcomed

I go back to the doctor on January 12, 2012 to talk about what needs to be done, as in treatment. If anyone has any advice or know of questions I need to ask, let me know. I have been trying to find out as much as I can on Chiari before I go back and write down questions I need to ask so I don't forget. Also I live in Tennessee,so if anyone knows of a doctor here that specialize in this let me know please.

Thank you all in advance!!

Stefanie

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ModeratorPermalink Reply by lori on December 27, 2011 at 7:53am

Hi....Welcome to the site!!!

Ok, 1st off...what kind of doctor are you seeing on the 12th??? Neurologist? Neurosurgeon???

I take it you have already been diagnosed with Chiari through an MRI, am I correct????

I would suggest that you bring a list of all your symptoms..even those that you think are not related to Chiari...also , a list of questions you may have.

Also, have you had a FULL SPINE MRI???? That is very important due to the fact that Chiari is one of the main reasons people get a syrinx on their spine...a syrinx is a fluid filled cyst that can cause major issues.

I tried to have someone with me at my apps...another set of ears is always helpful.

My personal experiences with NL's(Neurologists) has been poor to say the least...the ones I went to ALL said the same thing ...Chiari is not the cause of your problems...however..they all said that there was indeed a physical problem ..but they just didn't know what it was!!!!

I was just waiting for 1 of the NL's to suggest the funny farm..LOL!!!! Thank God none of them did...Lord only knows what would have come out of my mouth!!!

Keep us updated and please ALWAYS feel free and ask ANY questions here....we are here to help one another.

Peace,

Lori

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ModeratorPermalink Reply by Crystal on December 27, 2011 at 8:50am

Stefanie,

I'm sorry you're going through this:( You are in the right place...we all know and understand what you're going through. Lori gave you great advice:) She is a sweet heart and you will find many other great people here:) Like she said, you really need to talk to a Neurosurgeon that specializes in Chiari. Go to "resources" on this site and you'll find a lot of useful information. Plus, you'll find links to other sites with valuable info also. There are lists of questions to ask your doctor. Some of the sites have lists of Chiari specialists also. There are links to these lists in previous discussions also. I've gone through a lot of the previous discussions and found a lot of great info, so I recommend that you do the same. Please don't hesitate to post any other questions you may have or even just vent if you need to. We will do our best to be there for you:) I look forward to getting to know you better:)

Crystal

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Permalink Reply by Cheryl Hole on December 27, 2011 at 5:20pm

hi stefanie.

my advce would be

print off the sypmtoms a chiari forum/discusson, that available, it was amazing what you would have thought was, wasnt, could, or couldn,t be connected to this condition, i was amazed. any stange insidents that happened years before that didn't really get checked but were odd. note and mention anything you can think of. :-)

make sure as someone else said, they have or will do full body scan, thats what im now having post op to see if my problems are releted to narrowing or syrinx that although wasnt there before may now be because of my symptoms post op.

take someone with you and a notebook and write down as many bits of info as you can anyhthing that your not sure of, words, phrases, you will be surprised about how much info your given about the surgery and options. you will likely have questions and discussions you may want to have again with a partner or the doc.

theres a lot to think about but go in there calm with clear information and questions, my surgeon was great because from being told i had to have brains surgery from my doc in march which i was told was hydrocephelus it changed to chiari surgery in may, something completely different. we were talking through things with my surgeon for almost 3 hrs. so don't be affraid to ask and ask and ask. they want you to feel happy with whats happening and how to treat it.

best of luck. hope they can start you on a road to recovery. :-)

keep in touch.x

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Permalink Reply by Steff on January 8, 2012 at 8:31pm

@ Lori...I am seeing a Neurologist and a Neurosurgeon. I diagnosed with Chiari through an MRI and will be going back on the 12th to talk about surgergy. I haven't been able to get on here lately because of all my pain and the meds don't seem to be working. I also bent over this week and when I raised up I had a loud pop in my back and now can't stand up straight. Been keeping a book with all my symptoms and going to bring my mom with me to the appt. Thank you so much

@ Crystal and Cheryl Hole.....Thank you so much will check out resoures and keep track of symptoms. I will keep in touch for sure. I can't stay on long bc I am hurting rt now but wanted to get back to everyone I can.

Stefanie