Hi sweety! I was just watching your video. I wanted to let you know that their is an awesome support group on facebook. Just search Chiari Malformation
Hi sweetie...how are you feeling?? did they insert a shunt by chance? i have sm (and a tumor) and have a permanent spinal cord shunt (inside/outside the cord). Blessings to you & yours (and all of us suffering from this) :-)
Hi great video, (explanation wise) hope your feeling better and I hope your recover is speedy, a few question from one chiari person to the other, the ringing in the ears, mine are blaring, after tour surgery (2nd) did your ringing go away or was the nerve damage already permanent, also, before any surgery did you have emotional trouble like looking depressed or gloomy? I do, you don't have to answer but I'm desperately seeking them. Thx.
my son is 5 and has had 12 surgerys realted to chiari/syringomyelia.Mikeys chiari journey,mikeys chiari journey2010, mikeys chiari journey video clips
i know im late on this video but i was just diagnosed with chiari malformation and i also have a syrinx in my spine i already had the surgery and i feel much better but im worried the syrinx didnt go away but ill find out in two months pray for mr plz oh yeah im 13 and me my mother my sister and cousin have it also
i have chiari malformation to i have migraines,headaches,and weird habits and twitches to,i aslo have a ubsetion for games video games not board games
hello everybody, i am daryn brehio, i am a 22 year old male, i was dignosed with this very rare and very serious disease on april 10,2009 on my birthday, i under went the surgery on may 20,2009 and my surgery has failed and the doctors have done my procedure wrong so i am seeing all new surgeons in maine, if anyone can help me with support please e-mail me or call me at: 207-549-5199
today i was diagnosed with borderline chiari type 1,i'm veryscared because of what the diseasemeans,i already have someof the symptoms.I found out from getting an MRI because i was hit by a van last yr and still going to phys.therapy.they told me that my cerebella tonsils extend 1-2mm below the level of the foramen magnum.they said "this is feltto represent a borderline chiari type 1 malformation and there is no cervical syrinx....I really need helpin understand what is happening to me.
I also had the spinal decompresion surgery February 25,2009. I actually canceled the original surgery three weeks earlier by playing sick. I mean i was really scared. To have the back of your head cut into, a big piece of my skull removed and also cuuting into my neck to reach the spinal chord for the tonsillectomy, put all that together and it will make you never wanta fall asleep.I now have a 10" scar from top of my head to the bottom of my neck. It has now been 7 months.still recovering.
Hi...I have only one descompression, well four months ago....and I feel worse too much pain, in my shoulders, back and legs. some depressions by medications but I try to see the life on the correct way. The doctors said may be I will have, is not sure .... a normal life but the real truth is my truth all wath I see each day. I know each case is very very different so....
Wait... why did you have another decompression? You mean you have to get a chiari redo? Lol. You can only get the compression once since everything that they did the first time was already done. I had the decompression first then a redo then the cerebellar tonsillectomy.
hey everyone, i have just been recently diagnosed with arnold chiari malformation 1 as of april 10th 2009 and i just met with the neurosurgeon on april 30th 2009 to discuss the procedures and discuss the risks, can anyone who has this malformation help me understand more and help me to relax and would anyone like to call me and discuss this information with
i have had this surgery in 2006, everyhting went ok, only i still have sum symptoms, so i hope that doesnt mean another surgery in my future, i wish u luck, and just know its better to get the surgery than not to, ask me anything if u need too GL!
I have had 3 surgeries. In 2005 then 2007 and most recently one in 2009. It sucks hence the name of my video, lol. If you would really like to understand it extremely well you should research the shit out of it. I did that when I got diagnosed in 2005. I will tell you it sucks to have it and it's very painful.
For some reason you have touched my heart and I would like to know how you are doing.
My own daughter might have this also. She is 15, but we are still doing the testing. We will know for sure on Friday Oct. 2nd. We are scared also. Please write back if you want to. I will pray for you as well.
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!
Hi my husband for the past 5 years the's had numbness on one leg,passedout,thenhisarms and hands kind of crampupandlookdeformed thenhesays my face is numb onedaythishappenedwhile driving and he wasdroolingandstuff.Forthe past 2 yrstheydidacomplete physical,mri,ct andsupposedlyeverything is fine...doc said losesomeweightandde-stress. well last week theydiagnosed him wtih C.M.1...I just wanted to tell u of his symptoms, we're gonna get a 2ns opinion before scheduling surgery...maybe 3.
Hello ,I also have ACM . My surgery was April of 2004. My symtoms were severe vertigo,migraines, limb numbness and distorted hearing. The symtoms were alleviated by the surgery well enough for me to return to work 4 mos. later. 3 yrs. ago I became symtomatic again and struggle daily. I still however feel for you and all others afflicted with this. God bless you and keep your chin up.
my surgery fixed the vertigo/dizziness and helped the headaches a lot,although my hearing has never improved.nearly 5 years later and the signs are coming back..although slightly different this time and im waiting a consultation with my surgeon..to much csf(hydrocaphelus)is a possibility after decompression and a shunt is a possible second op for me..keep ur head up and i wish you all the best,if i had to do it all again? i would..the last 4 years post op have been a dream come true
hi michele,i had decompression surgery 4 years ago and i leaked csf all over my bed and had 2 spinal drains for a week at a time and was in hos for 4 weeks..my worst symptom was dizziness apart from the headache..really bad vertigo and ringing in the ear which has now caused deafness in the right ear..the trapped csf fluid causes pressure which i believe causes the dizziness and ringing in the ears.proper surgery can change your life
Hi Michele! I wanted to tell you that I sincerely appreciate your time spent making these video blogs. I'm studying CM type 1 and it's great to have a patient's perspective. I happened to watch your sky diving video and I wanted to tell you that there have been several reports in the New England Journal of Medicine that shows a correlation between skydiving and the incidence of syringomyelia. This might be something of interest to you. Thank you, stay positive, and good luck!
i got chiari malformtion but i get headaches and neck pains and swollowing prombles too i don't have ringing in my ears im 19 but i still got chiari malformtion still
My wife had the decompression surgery yesterday. One of the hardest things I had done as a husband was to watch the nurses take her to the O.R. On the other hand your video did give me a great deal of relief seeing another human face that had already gone thru it. Thank you.
thanks for your video, wanted to inform you that your permission is included on our website w w w .arnold-chiari . com to serve your experience to others. You can send other than your wish that we will be found to include them on our website if you want. thank you very much for everything
Hi Michele. So awesome to see your courageous journey. My girlfriend Katie, had surgery the same month you did in 07. Her C-1 is gone as well. She returned to the hospital, really no answers at this point. Severe pain causing her body to shake, uncontroled vomiting. It's a mess. I will email this to her and maybe she and her husband can view it. Also, r u able 2 share yur doctor u used? I noticed n your 2nd video, you went to Cedars. We're also here in SoCal. How are you doing after your 2nd?
Your videos made me feel so inviting because I felt so alone especially before diagnosis! At least my symptoms have a name now. I appreciate your courage and strength in doing these videos! Update everyone on your progress.
I am 14 years old and I have been sufferingwith horrible head aches and dizzyness for about three months now and they found that I have Chairi. now i have to go and get another MRI and see a nerosegeron. They will then tell me if I need segery or not but this was helpful to see that someone else has gone through the same thing and they hae made it fine. Is there anything you suggest that I do/don't do to prepare myself for whatevers ahead??
Just stay positive no matter what. It will be hard at times but it does help in the end. Make sure if you have any questions at all ask your doctor even if you feel like it's a stupid question. Make sure that if they say yes you need surgery, that the doctor has done this exact surgery b4..
i've had it for almost 3 years, and a few symptoms even before that, but i didn't find out till last year. Now i am finally having surgery next month.
I feel for you. I beleive I am heading down the very same path. My decompression was nearly 2 months ago and I have fluid in my ear so badly i cant hear, The headaches and vomiting have not subsided..though not as bad as prior to surgery and I have a leak from the incision. Surgeon wants me to WAIT ...but says i can try going back to work in 3 weeks or so???? I dont understand!
I'm sorry to hear that your having problems.. It's kinda scary when you realize the doctors are guessing on what's going on. I just new and my first doctor wouldn't listen to me. You know he even told me I needed to learn to be stroger. Truns out I was right I needed surgery again. I have been going through all this from start to finish has been 7 months. Any way thanks for your post
I have arnold chiari II malformation (ACM) and syringomyelia as a result, which means as well as the usual symptoms, I have syrinx(cysts) all the way down my spine, which have suficated my nerves and has made me numb over 90% of my body, I was 12 when I was diagnosed and 14 when i went in for decompression surgery. I am now 23 with no improvement on my situation. ACM isn't fatal, it's not as bad as some people make out, it's easily treatable with 1 surgery, and most cases the symptons stop.
i also have the same thing but im so scared to have the surgery... but i have to do something because i cant take the pains anymore....
boop471 2 months ago
Hi sweety! I was just watching your video. I wanted to let you know that their is an awesome support group on facebook. Just search Chiari Malformation
PTavolino 3 months ago in playlist Chiari Sufferers
Hi sweetie...how are you feeling?? did they insert a shunt by chance? i have sm (and a tumor) and have a permanent spinal cord shunt (inside/outside the cord). Blessings to you & yours (and all of us suffering from this) :-)
missamelie17 3 months ago
Hi great video, (explanation wise) hope your feeling better and I hope your recover is speedy, a few question from one chiari person to the other, the ringing in the ears, mine are blaring, after tour surgery (2nd) did your ringing go away or was the nerve damage already permanent, also, before any surgery did you have emotional trouble like looking depressed or gloomy? I do, you don't have to answer but I'm desperately seeking them. Thx.
TheFakeGhost 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
i know im late on this video but i was just diagnosed with chiari malformation and i also have a syrinx in my spine i already had the surgery and i feel much better but im worried the syrinx didnt go away but ill find out in two months pray for mr plz oh yeah im 13 and me my mother my sister and cousin have it also
brandonmbush8 1 year ago
i have chiari malformation to i have migraines,headaches,and weird habits and twitches to,i aslo have a ubsetion for games video games not board games
70MrKitty 1 year ago
Im headed in for my first decompression surgery within the next 2 weeks. I hope you're doing better
URCNFUN 1 year ago
vol die scheise
hartungking96 2 years ago
hello everybody, i am daryn brehio, i am a 22 year old male, i was dignosed with this very rare and very serious disease on april 10,2009 on my birthday, i under went the surgery on may 20,2009 and my surgery has failed and the doctors have done my procedure wrong so i am seeing all new surgeons in maine, if anyone can help me with support please e-mail me or call me at: 207-549-5199
daryncyrilbrehio 2 years ago
today i was diagnosed with borderline chiari type 1,i'm veryscared because of what the diseasemeans,i already have someof the symptoms.I found out from getting an MRI because i was hit by a van last yr and still going to phys.therapy.they told me that my cerebella tonsils extend 1-2mm below the level of the foramen magnum.they said "this is feltto represent a borderline chiari type 1 malformation and there is no cervical syrinx....I really need helpin understand what is happening to me.
TheLastVampireChild 2 years ago
I also had the spinal decompresion surgery February 25,2009. I actually canceled the original surgery three weeks earlier by playing sick. I mean i was really scared. To have the back of your head cut into, a big piece of my skull removed and also cuuting into my neck to reach the spinal chord for the tonsillectomy, put all that together and it will make you never wanta fall asleep.I now have a 10" scar from top of my head to the bottom of my neck. It has now been 7 months.still recovering.
metalmikegg 2 years ago
Hi...I have only one descompression, well four months ago....and I feel worse too much pain, in my shoulders, back and legs. some depressions by medications but I try to see the life on the correct way. The doctors said may be I will have, is not sure .... a normal life but the real truth is my truth all wath I see each day. I know each case is very very different so....
CammhyTomassini 2 years ago
Wait... why did you have another decompression? You mean you have to get a chiari redo? Lol. You can only get the compression once since everything that they did the first time was already done. I had the decompression first then a redo then the cerebellar tonsillectomy.
AsHleYBaBByy20 2 years ago
hey everyone, i have just been recently diagnosed with arnold chiari malformation 1 as of april 10th 2009 and i just met with the neurosurgeon on april 30th 2009 to discuss the procedures and discuss the risks, can anyone who has this malformation help me understand more and help me to relax and would anyone like to call me and discuss this information with
marine21213 2 years ago
i have had this surgery in 2006, everyhting went ok, only i still have sum symptoms, so i hope that doesnt mean another surgery in my future, i wish u luck, and just know its better to get the surgery than not to, ask me anything if u need too GL!
devilchk702 2 years ago
I have had 3 surgeries. In 2005 then 2007 and most recently one in 2009. It sucks hence the name of my video, lol. If you would really like to understand it extremely well you should research the shit out of it. I did that when I got diagnosed in 2005. I will tell you it sucks to have it and it's very painful.
AsHleYBaBByy20 2 years ago
Hi Marine,
For some reason you have touched my heart and I would like to know how you are doing.
My own daughter might have this also. She is 15, but we are still doing the testing. We will know for sure on Friday Oct. 2nd. We are scared also. Please write back if you want to. I will pray for you as well.
Sincerely,
Teri
britbrat951 2 years ago
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
Hi my husband for the past 5 years the's had numbness on one leg,passedout,thenhisarms and hands kind of crampupandlookdeformed thenhesays my face is numb onedaythishappenedwhile driving and he wasdroolingandstuff.Forthe past 2 yrstheydidacomplete physical,mri,ct andsupposedlyeverything is fine...doc said losesomeweightandde-stress. well last week theydiagnosed him wtih C.M.1...I just wanted to tell u of his symptoms, we're gonna get a 2ns opinion before scheduling surgery...maybe 3.
soloyo104 2 years ago
Hello ,I also have ACM . My surgery was April of 2004. My symtoms were severe vertigo,migraines, limb numbness and distorted hearing. The symtoms were alleviated by the surgery well enough for me to return to work 4 mos. later. 3 yrs. ago I became symtomatic again and struggle daily. I still however feel for you and all others afflicted with this. God bless you and keep your chin up.
SBflogirl 2 years ago
my surgery fixed the vertigo/dizziness and helped the headaches a lot,although my hearing has never improved.nearly 5 years later and the signs are coming back..although slightly different this time and im waiting a consultation with my surgeon..to much csf(hydrocaphelus)is a possibility after decompression and a shunt is a possible second op for me..keep ur head up and i wish you all the best,if i had to do it all again? i would..the last 4 years post op have been a dream come true
elviswessley 2 years ago
hi michele,i had decompression surgery 4 years ago and i leaked csf all over my bed and had 2 spinal drains for a week at a time and was in hos for 4 weeks..my worst symptom was dizziness apart from the headache..really bad vertigo and ringing in the ear which has now caused deafness in the right ear..the trapped csf fluid causes pressure which i believe causes the dizziness and ringing in the ears.proper surgery can change your life
elviswessley 2 years ago
Hi Michele! I wanted to tell you that I sincerely appreciate your time spent making these video blogs. I'm studying CM type 1 and it's great to have a patient's perspective. I happened to watch your sky diving video and I wanted to tell you that there have been several reports in the New England Journal of Medicine that shows a correlation between skydiving and the incidence of syringomyelia. This might be something of interest to you. Thank you, stay positive, and good luck!
EimeriaTenella 3 years ago
i also have chiari malformation but i had mine repaired when i was 5 but now theres crouding so lets hope i don't need it repaired again
Jonhson32 3 years ago
i got chiari malformtion but i get headaches and neck pains and swollowing prombles too i don't have ringing in my ears im 19 but i still got chiari malformtion still
hannahgrer19 3 years ago
My wife had the decompression surgery yesterday. One of the hardest things I had done as a husband was to watch the nurses take her to the O.R. On the other hand your video did give me a great deal of relief seeing another human face that had already gone thru it. Thank you.
aofarrell123 3 years ago
Hi Michele:
thanks for your video, wanted to inform you that your permission is included on our website w w w .arnold-chiari . com to serve your experience to others. You can send other than your wish that we will be found to include them on our website if you want. thank you very much for everything
JAVIKER75 3 years ago
Hi Michele. So awesome to see your courageous journey. My girlfriend Katie, had surgery the same month you did in 07. Her C-1 is gone as well. She returned to the hospital, really no answers at this point. Severe pain causing her body to shake, uncontroled vomiting. It's a mess. I will email this to her and maybe she and her husband can view it. Also, r u able 2 share yur doctor u used? I noticed n your 2nd video, you went to Cedars. We're also here in SoCal. How are you doing after your 2nd?
lilredzmom 3 years ago
Your videos made me feel so inviting because I felt so alone especially before diagnosis! At least my symptoms have a name now. I appreciate your courage and strength in doing these videos! Update everyone on your progress.
sigmaspirit2003 3 years ago
I am 14 years old and I have been sufferingwith horrible head aches and dizzyness for about three months now and they found that I have Chairi. now i have to go and get another MRI and see a nerosegeron. They will then tell me if I need segery or not but this was helpful to see that someone else has gone through the same thing and they hae made it fine. Is there anything you suggest that I do/don't do to prepare myself for whatevers ahead??
fsc3384 3 years ago
Just stay positive no matter what. It will be hard at times but it does help in the end. Make sure if you have any questions at all ask your doctor even if you feel like it's a stupid question. Make sure that if they say yes you need surgery, that the doctor has done this exact surgery b4..
raulandmichele 3 years ago
ok thanks
fsc3384 3 years ago
@fsc3384
i've had it for almost 3 years, and a few symptoms even before that, but i didn't find out till last year. Now i am finally having surgery next month.
Metallica102938 1 year ago
I feel for you. I beleive I am heading down the very same path. My decompression was nearly 2 months ago and I have fluid in my ear so badly i cant hear, The headaches and vomiting have not subsided..though not as bad as prior to surgery and I have a leak from the incision. Surgeon wants me to WAIT ...but says i can try going back to work in 3 weeks or so???? I dont understand!
My prayers are with you!
peoplerstranj 3 years ago
I'm sorry to hear that your having problems.. It's kinda scary when you realize the doctors are guessing on what's going on. I just new and my first doctor wouldn't listen to me. You know he even told me I needed to learn to be stroger. Truns out I was right I needed surgery again. I have been going through all this from start to finish has been 7 months. Any way thanks for your post
raulandmichele 3 years ago
Hey chele you look hott and I like your haircut :) love ya!
TLoc413 3 years ago
hi michele. i hope you gett better!!!!
1JonasSistersMusic1 3 years ago
I have arnold chiari II malformation (ACM) and syringomyelia as a result, which means as well as the usual symptoms, I have syrinx(cysts) all the way down my spine, which have suficated my nerves and has made me numb over 90% of my body, I was 12 when I was diagnosed and 14 when i went in for decompression surgery. I am now 23 with no improvement on my situation. ACM isn't fatal, it's not as bad as some people make out, it's easily treatable with 1 surgery, and most cases the symptons stop.
simples22 3 years ago
I'm sorry to hear that your syrinx is so large. Mine is only from c2 - c4. So its nothing to yours.
raulandmichele 3 years ago
Thank you, but any size syrinx is still annoying lol I hope you get better and make a full recovery x
simples22 3 years ago