i have this condition too, i just learned i have it and i wanted to know if i can drink/smoke weed while on it? i know i probably sound stupid but i'd really llike to know if you know
Hope your doing well! I have a question! Do you still have that pressure like feeling in your head after the surgeries? And, are your ears still ringing? And if yes, as they as loud or louder than before? Please help, please answer, thx
I never had a pressure like feeling really - neither before or after the surgery. I had some migraines with pressure a month after the surgery but it was underneath my eyes.
As for the ringing in my ears, I never had that in the beginning. After the surgery and all, I have a very high pitch noise that happens and then I will go deaf in my ear and just hear the high pitch tone. It will only last for 15-20 seconds though. I have had one last for a minute+ though.
thank you for telling your story. I am a 42 year old female who came down with a constant headache in august of 2009. The local doctors kept telling me it was a migraine. 4 months later I was diagnosed with having Chiari 1. It has been a year and a half since the Doctors said that i needed the decompression surgery. I have no medical insurance to get it and the Hospitals say that they won't do it because its not terminal. So where does a person like me go for help??? Anybody got any ideas.
I have this severe headache when bending. Or sometimes when turning my head left. The pain is between my left ear and my back neck. Very painful as if my head will explode. Do you think i have "Chiari Malformation"?
@JumboSquid No i dont think that this sounds like chiari. Chiari affects most of the lower neck and the whole head in general. Remember chiari is somewhat rare so i highly doubt that becuase u possibly have 1 symptom you have this malformation.
my son is 5 and has had 12 surgerys realted to chiari/syringomyelia.Mikeys chiari journey,mikeys chiari journey2010, mikeys chiari journey video clips
what discomforts did you experience? i have a son who has chiari malformation 2. he's 2 months old when he underwent VSP insertion. i just want to know what am i going to expect as he grows older. he's 10 months old now and healthy. he still has meninggocele at the lumbar part.
I am so sorry it took me so long to reply - first off.
Secondly, some symptoms I had before the surgery was back pain (pain fluctuates) and headaches. Then again he may have more or less symptoms then me. I have had trouble most of my life with finding a comfortable backpack. Rolling ones, side straps, or good old fashioned double straps. Chairs never seemed comfortable enough in school.
I had seizures after my surgery. I take a daily medication for it. Works fine. :)
I am having my decompression surgery done on fed 19, I have dr, Weingart as my dr....I live within 10 mins of hopkins and I am very very worried..... I am hoping and praying for the best...i am worried because for me right now, I have no "real" symptoms....just dont want to go in and come out having more or worse complications
i had a vp shunt on dec 18... going for a decompression in feb... did anyb0dy g0 f0r physical therapy after this... im t0ld i have t0 wear a neck brace f0r 6 wks n d0 physical therapy.. and n0 w0rk f0r 6 m0nths... agggh
i am 13 and just had a chiari decompression last month december 11. i still have head pains but my doctor said it's just recovery pains. i had so much fluid in the spinal cord that my doctor was surprised i wasn't in much more pain. but i hope anybody who has it gets better(: and know that there are other people who went through the same thing out there in the world.
i did and still do experience blurred vision at times, fatigue all the time and pain throughout my body. i have also been diagnosed with fibromyalgia so its very frustrating when i have severe episodes of body pain and extreme fatigue. i have also had episodes where i feel paralyzed and i cant get out of bed. i wish i knew of a dr. locally here in hfd. calif. any suggestions?
i did and still do experience blurred vision at times, fatigue all the time and pain throughout my body. i have also been diagnosed with fibromyalgia so its very frustrating when i have severe episodes of body pain and extreme fatigue. i have also had episodes where i feel paralyzed and i cant get out of bed. i wish i knew of a dr. locally here in hfd. calif. any suggestions?
@foxleyleon I experienced all of those with mine. The first thing I noticed when I woke up and started drinking fluids was that I could swallow like normal again!
hello everybody, i am daryn brehio, i am 22 years old, i had my surgery on may 20,2009. they say my surgery was successfull but believe me it wasn't. i have had manigise 3 times. i had a high white blood cell count on my spinal type all 4 times. i have spent most of my summer in the hospital. the headaches,nausia,vomiting,fainting,sleeping,and the sever electrical shocks in my head still hurt me today. my number is: 207-549-5199 please call and ask for DARYN
First time I knew something was wrong? My head wanted to explode! After 7 days of severe pressure migraine type headaches - daily - I went to my doctor. My diagnosis: Chiari 1 Malfromation. I delt with these daily headaches for 59 straight days. They had become so bad at times, I had to sometimes lock myself in my room in the dark with no noise. While there's no cure for Chiari, my treatments with medication has made some of my symptoms more manageable. Looking forward to living life again!
We found a center in Barcellona (Spain) where he had a surgery 2 years ago. Simple surgery, without touching the brain. They only had to cut the "filum terminale". Surgery was only 1 hour and recovery was 24 hours.
After 1 year we had the control and he is completely "normal" now. (Sorry but I'm italian and my english is not good, so sometimes I don't know what kind of words I need to use).
I know very well all that pain. If you want, contact me.
I was diagnosed in 2006 with chiari as well. I had the decompression surgery in June. I also was diagnosed with hydrocephalus, & my body wouldn't accept the shunt. I had 5 total shunt placements then ended up in mayo hospital where they took the shunt out. I had a third ventriculostomy to remove the spinal fluid in December 2006. I have also had six neurolysis surgeries btwn 07 & 08. 14 surgeries later, I still have constant, extreme head pain and I was told I will have to live with it.
There are a lot of success stories but there are also a lot of people who live with getting the surgeries every so many years. Me, I have it every other year 2005, 2007, 2009. I unfortunately have the growth problem and not the absorbing fluid problem that comes along with having syringomelia (forgive me if I spelled it wrong) I have type two also. However I was supposed to already be dead by now, apparently that's not the case I guess. They told me they didn't know how i wasn't dead.
You do know that the death rate for these surgeries are only at 10% now right? Yes these surgeries are very dangerous but every surgery is, even something simple as foot surgery. People do not die from these surgeries at all pretty much, if they do it's not that common.I have had 3 of these surgeries 1) Chiari Decompression 2) Re-do(plate moved) 3) Cerebella Tonsillectomy <that was kickass. haha. Unfortunately... you live with this,
sweetie reply, my girlfriend had chiri, i know how to fix and know what needs to be done.. no joke, she had like 8+ sugreys.. spelling
dankk31 1 month ago
I went to weinguard!
chrisbrown18andup 4 months ago
I have the type 1, and I am getting in to surgery hopefully in a couple of months. I really hope that it will help.
SCAREDBANANA 7 months ago
i have this condition too, i just learned i have it and i wanted to know if i can drink/smoke weed while on it? i know i probably sound stupid but i'd really llike to know if you know
IrishHerbsnSpices 7 months ago
Hope your doing well! I have a question! Do you still have that pressure like feeling in your head after the surgeries? And, are your ears still ringing? And if yes, as they as loud or louder than before? Please help, please answer, thx
TheFakeGhost 7 months ago
@TheFakeGhost
I never had a pressure like feeling really - neither before or after the surgery. I had some migraines with pressure a month after the surgery but it was underneath my eyes.
As for the ringing in my ears, I never had that in the beginning. After the surgery and all, I have a very high pitch noise that happens and then I will go deaf in my ear and just hear the high pitch tone. It will only last for 15-20 seconds though. I have had one last for a minute+ though.
Hope that helps?
Jennaration09 7 months ago
thank you for telling your story. I am a 42 year old female who came down with a constant headache in august of 2009. The local doctors kept telling me it was a migraine. 4 months later I was diagnosed with having Chiari 1. It has been a year and a half since the Doctors said that i needed the decompression surgery. I have no medical insurance to get it and the Hospitals say that they won't do it because its not terminal. So where does a person like me go for help??? Anybody got any ideas.
ashlyissiik 9 months ago
i had my chiari surgery last year...had no symptoms really except trouble swallowing and migraines. i was only 13 :D
p.s i also had seizures which may or may not be relevant to this illness.
SargeantEggsalad 10 months ago
i had my chiari surgery last year...had no symptoms really except trouble swallowing and migraines. i was only 13 :D
SargeantEggsalad 10 months ago
I have this severe headache when bending. Or sometimes when turning my head left. The pain is between my left ear and my back neck. Very painful as if my head will explode. Do you think i have "Chiari Malformation"?
JumboSquid 10 months ago
@JumboSquid No i dont think that this sounds like chiari. Chiari affects most of the lower neck and the whole head in general. Remember chiari is somewhat rare so i highly doubt that becuase u possibly have 1 symptom you have this malformation.
SargeantEggsalad 10 months ago
@JumboSquid
I have no idea. All I will tell you is this, I am no doctor, so go see one. :)
Find a neurologist, when you see them, tell them your symptoms and you'll go from there. (They will probably get you to get an MRI or CT scan.)
Jennaration09 7 months ago
my son is 5 and has had 12 surgerys realted to chiari/syringomyelia.Mikeys chiari journey,mikeys chiari journey2010, mikeys chiari journey video clips
hollimagolli123 1 year ago
@hollimagolli123 Twelve surgeries? poor little tike.
mitch19636 1 year ago
My son is 5 and is on his 12th chiari/syringo surgery his you tube videos are
hollimagolli123 1 year ago
is it true chiari malformation can cause death?
johncoolgun 1 year ago
what discomforts did you experience? i have a son who has chiari malformation 2. he's 2 months old when he underwent VSP insertion. i just want to know what am i going to expect as he grows older. he's 10 months old now and healthy. he still has meninggocele at the lumbar part.
sweetlemon2010 1 year ago
@sweetlemon2010
I am so sorry it took me so long to reply - first off.
Secondly, some symptoms I had before the surgery was back pain (pain fluctuates) and headaches. Then again he may have more or less symptoms then me. I have had trouble most of my life with finding a comfortable backpack. Rolling ones, side straps, or good old fashioned double straps. Chairs never seemed comfortable enough in school.
I had seizures after my surgery. I take a daily medication for it. Works fine. :)
Jennaration09 7 months ago
I am having my decompression surgery done on fed 19, I have dr, Weingart as my dr....I live within 10 mins of hopkins and I am very very worried..... I am hoping and praying for the best...i am worried because for me right now, I have no "real" symptoms....just dont want to go in and come out having more or worse complications
noneyourdamnbusiness 2 years ago
i had a vp shunt on dec 18... going for a decompression in feb... did anyb0dy g0 f0r physical therapy after this... im t0ld i have t0 wear a neck brace f0r 6 wks n d0 physical therapy.. and n0 w0rk f0r 6 m0nths... agggh
hithere00000 2 years ago
i am 13 and just had a chiari decompression last month december 11. i still have head pains but my doctor said it's just recovery pains. i had so much fluid in the spinal cord that my doctor was surprised i wasn't in much more pain. but i hope anybody who has it gets better(: and know that there are other people who went through the same thing out there in the world.
imheleneeeeeeee 2 years ago
did you experience burning headaches at the brain stem . blurred vision. fatigue and trouble swallowing?
foxleyleon 2 years ago
@foxleyleon No, I didn't. Non of those syptoms, sorry.
Jennaration09 2 years ago
@foxleyleon
i did and still do experience blurred vision at times, fatigue all the time and pain throughout my body. i have also been diagnosed with fibromyalgia so its very frustrating when i have severe episodes of body pain and extreme fatigue. i have also had episodes where i feel paralyzed and i cant get out of bed. i wish i knew of a dr. locally here in hfd. calif. any suggestions?
hartnsoull 1 year ago
@foxleyleon
i did and still do experience blurred vision at times, fatigue all the time and pain throughout my body. i have also been diagnosed with fibromyalgia so its very frustrating when i have severe episodes of body pain and extreme fatigue. i have also had episodes where i feel paralyzed and i cant get out of bed. i wish i knew of a dr. locally here in hfd. calif. any suggestions?
hartnsoull 1 year ago
@foxleyleon
i have all those problems
Metallica102938 1 year ago
@foxleyleon I experienced all of those with mine. The first thing I noticed when I woke up and started drinking fluids was that I could swallow like normal again!
SarahDawn1987 9 months ago
hello everybody, i am daryn brehio, i am 22 years old, i had my surgery on may 20,2009. they say my surgery was successfull but believe me it wasn't. i have had manigise 3 times. i had a high white blood cell count on my spinal type all 4 times. i have spent most of my summer in the hospital. the headaches,nausia,vomiting,fainting,sleeping,and the sever electrical shocks in my head still hurt me today. my number is: 207-549-5199 please call and ask for DARYN
TheViperkid22 2 years ago
First time I knew something was wrong? My head wanted to explode! After 7 days of severe pressure migraine type headaches - daily - I went to my doctor. My diagnosis: Chiari 1 Malfromation. I delt with these daily headaches for 59 straight days. They had become so bad at times, I had to sometimes lock myself in my room in the dark with no noise. While there's no cure for Chiari, my treatments with medication has made some of my symptoms more manageable. Looking forward to living life again!
Goldtube2 2 years ago
My 4 years old boy had Chiari malformation.
We found a center in Barcellona (Spain) where he had a surgery 2 years ago. Simple surgery, without touching the brain. They only had to cut the "filum terminale". Surgery was only 1 hour and recovery was 24 hours.
After 1 year we had the control and he is completely "normal" now. (Sorry but I'm italian and my english is not good, so sometimes I don't know what kind of words I need to use).
I know very well all that pain. If you want, contact me.
17ott1977 2 years ago
I wish no one had to go through this pain. Good luck to you!
blueydblondie06 2 years ago
I was diagnosed in 2006 with chiari as well. I had the decompression surgery in June. I also was diagnosed with hydrocephalus, & my body wouldn't accept the shunt. I had 5 total shunt placements then ended up in mayo hospital where they took the shunt out. I had a third ventriculostomy to remove the spinal fluid in December 2006. I have also had six neurolysis surgeries btwn 07 & 08. 14 surgeries later, I still have constant, extreme head pain and I was told I will have to live with it.
blueydblondie06 2 years ago
You will BE FINE ^_^ =D
AsHleYBaBByy20 2 years ago
There are a lot of success stories but there are also a lot of people who live with getting the surgeries every so many years. Me, I have it every other year 2005, 2007, 2009. I unfortunately have the growth problem and not the absorbing fluid problem that comes along with having syringomelia (forgive me if I spelled it wrong) I have type two also. However I was supposed to already be dead by now, apparently that's not the case I guess. They told me they didn't know how i wasn't dead.
AsHleYBaBByy20 2 years ago
You do know that the death rate for these surgeries are only at 10% now right? Yes these surgeries are very dangerous but every surgery is, even something simple as foot surgery. People do not die from these surgeries at all pretty much, if they do it's not that common.I have had 3 of these surgeries 1) Chiari Decompression 2) Re-do(plate moved) 3) Cerebella Tonsillectomy <that was kickass. haha. Unfortunately... you live with this,
AsHleYBaBByy20 2 years ago