@TheChezzy71 You have no idea what it feels like to have this condition. One of the hardest things for those of us with Chiari to deal with is people like you who look at us and think we are fine and just lazy or looking for attention. I only hope one day you find yourself in our sitution and fully understand what it's like to be trapped in your own body trying to fight to think and move and just exhist and have someone like you giving us crap because we don't LOOK messed up enough.
Hey Guys, THIS IS JOIE FROM THE VIDEO. Im Not able to get into that account at this time, Havent been for a while. working on it. If anyone would like to contact me you can reach me at this YouTube Or Find Me On facebook @ Joie Hawkins. I have some extremly important news on Chiari I have Discovered that no one else has seemed to link. And no, i didnt self diagnose, my malformation was recognized at 16, yet No doctor ever acknowledged that could be causing problems. Hope to Hear From you Guys.
she did not self diagnose, the DR's did not tell her or probally even know much about the disease, I know because they tried doing that to me! DR's drive around in thier mercedes and really dont give a fack! Luckily my pain mngmt DR has told me this is serious and needs to be looked into! If only I find a good neurologist like him I will be fine but not alot of DR know about or want to tx this disease! I hope all of you have found a good DR!
I had a decompression for a chiari malformation in 2006 now wow i didnt realise it was that long agao haha..... can i ask, anyone who has had a chiari and or a neuro decompression have you had any side affects of either......... i dont no if it is to do with the decompression but about 1 month after mind i woke up one day and had facial paralysis. now my presontation is very odd the paralysis is not there all the time but no1 knows why can anyone help!!!!!!! im desperate now!
In 06 I was diagnosed with Fibromyalgia, but this passed year my symptoms have gotten worse. I started doing research on Chiari, and all my symptoms, even the symptoms with my heart match to a 'T'. I hope you find help soon. I understand what you're going through.
wait a minute, she said she was diagnosed at 16 but then says at the end that she started looking into chiari and everything that she was experiencing were symptoms of "that"
Thanks for this info. A recent MRI on me is suggesting that i have Syringomyelia. I have a appt with a spine specialist on Mon Feb 11th and i am just becoming familiar with this disease.
i am 21 and also suffering from chiari malformation...i have had countless surgeries but i'm still struggling...it helps to talk with others who understand what you're going through...e-mail me, i'd love to chat
It was a pretty bad summer for my familly. after that i went back to morocco and continued wearing my prism glasses because of the double vision. 8 months later, i didn't need my glasses anymore, i could walk straight, and now i'm as normal as as anyone can possibly be!
so since i was followed by the shriners children hospital in minneapolis (minesota) for another problem, i told them what i had and they asked me to do an MRI that's where they told me i had to do the surgery, i dont remember anything about the surgery, but i remember the pain after that because my neck muscles were trying to stick back, but i was under pain killers, so it wasn't thaaat bad.
I couldn't walk straight ahead, couldn't stand on one foot without loosing balance, started having a light double vision when i was 14 and it got worse and worse, and i lived in morocco which isn't a very developed country, so my eye doctor told me to have an eye surgery, but my mom was completly against that,
I don't know where you live, but look up the WACMA chiari site and find links to neurosurgeons in your area who actually have a clue what ACM is. I know the frustration you feel in having to educate your health care providers about your condition. I have it too. The surgery may sound very frightening, but it could save your life. I wish you the best.
by the looks of u,ur symptoms are minor.get over yourself
TheChezzy71 1 year ago
@TheChezzy71 You have no idea what it feels like to have this condition. One of the hardest things for those of us with Chiari to deal with is people like you who look at us and think we are fine and just lazy or looking for attention. I only hope one day you find yourself in our sitution and fully understand what it's like to be trapped in your own body trying to fight to think and move and just exhist and have someone like you giving us crap because we don't LOOK messed up enough.
FRIENDTOPETA1 7 months ago
Hey Guys, THIS IS JOIE FROM THE VIDEO. Im Not able to get into that account at this time, Havent been for a while. working on it. If anyone would like to contact me you can reach me at this YouTube Or Find Me On facebook @ Joie Hawkins. I have some extremly important news on Chiari I have Discovered that no one else has seemed to link. And no, i didnt self diagnose, my malformation was recognized at 16, yet No doctor ever acknowledged that could be causing problems. Hope to Hear From you Guys.
ZeroToZoey 1 year ago
she did not self diagnose, the DR's did not tell her or probally even know much about the disease, I know because they tried doing that to me! DR's drive around in thier mercedes and really dont give a fack! Luckily my pain mngmt DR has told me this is serious and needs to be looked into! If only I find a good neurologist like him I will be fine but not alot of DR know about or want to tx this disease! I hope all of you have found a good DR!
jenbrinkcrazycatfan 2 years ago
I've had three surgeries. I have a video telling all about them. It sucks =(
AsHleYBaBByy20 2 years ago
This has been flagged as spam show
I had a decompression for a chiari malformation in 2006 now wow i didnt realise it was that long agao haha..... can i ask, anyone who has had a chiari and or a neuro decompression have you had any side affects of either......... i dont no if it is to do with the decompression but about 1 month after mind i woke up one day and had facial paralysis. now my presontation is very odd the paralysis is not there all the time but no1 knows why can anyone help!!!!!!! im desperate now!
x
eilrahc101 2 years ago
In 06 I was diagnosed with Fibromyalgia, but this passed year my symptoms have gotten worse. I started doing research on Chiari, and all my symptoms, even the symptoms with my heart match to a 'T'. I hope you find help soon. I understand what you're going through.
DarkandPrecious 3 years ago
new forum:
arnold - chiari . com
JaviExAmandi 4 years ago
wait a minute, she said she was diagnosed at 16 but then says at the end that she started looking into chiari and everything that she was experiencing were symptoms of "that"
so did she self diagnose??
felixr29 4 years ago
Thanks for this info. A recent MRI on me is suggesting that i have Syringomyelia. I have a appt with a spine specialist on Mon Feb 11th and i am just becoming familiar with this disease.
twohassles43 4 years ago
How did your appointment go?
felixr29 4 years ago
i am 21 and also suffering from chiari malformation...i have had countless surgeries but i'm still struggling...it helps to talk with others who understand what you're going through...e-mail me, i'd love to chat
magpie186 4 years ago
You have to read the 3rd comment first then the 2nd and 1st, sorry about that! but please contact me!
redcreme87 4 years ago
It was a pretty bad summer for my familly. after that i went back to morocco and continued wearing my prism glasses because of the double vision. 8 months later, i didn't need my glasses anymore, i could walk straight, and now i'm as normal as as anyone can possibly be!
redcreme87 4 years ago
so since i was followed by the shriners children hospital in minneapolis (minesota) for another problem, i told them what i had and they asked me to do an MRI that's where they told me i had to do the surgery, i dont remember anything about the surgery, but i remember the pain after that because my neck muscles were trying to stick back, but i was under pain killers, so it wasn't thaaat bad.
redcreme87 4 years ago
I couldn't walk straight ahead, couldn't stand on one foot without loosing balance, started having a light double vision when i was 14 and it got worse and worse, and i lived in morocco which isn't a very developed country, so my eye doctor told me to have an eye surgery, but my mom was completly against that,
redcreme87 4 years ago
I don't know where you live, but look up the WACMA chiari site and find links to neurosurgeons in your area who actually have a clue what ACM is. I know the frustration you feel in having to educate your health care providers about your condition. I have it too. The surgery may sound very frightening, but it could save your life. I wish you the best.
AlohaBec 4 years ago