Thank-you for sharing your video. I am disabled at the age of 53 years from a Basal Skull Fracture and severe concussion. I slipped on the ice here in North Idaho on January 5th, 2008. I had a 6 inch break to my cerebullum and concussion. And, 6 months later another bad concussion followed from a fall. Today, I am 57 and very disabled with headaches everyday, lost 50% of my hearing, eye problems, Vertigo, etc. I can identify with you as I have pressure also on my brain. God Bless You.
I have chiari and had a surgery couple of years ago, first MRI showed significant pressure decrease in me spinal cord. Now I'm waiting for follow up check to see if I'm ok or if I need a new surgery.
I have a slight pain in my left arm and decreased sense of touch in the left side of my body. Have to eat painkillers and some sort of anti-depressants for chronic pain.
maybe i have chiari, if i do have it so it will be my diagnostician, and i not even a doctor, but i got to do one test before i really said it. i will do it.... it will be amazing if i'm right when anyone else was right.
Thanks for making this video. I was just diagnosed with chiari about a week ago and every medical report couldn't put it in simplest form... This really helped me have a better understanding of the condition.
SzChristie, how are you now? Have you gone in for surgery to correct this malformation? My cousin recently underwent surgery for this and he was doing fine and was also discharged from the hospital. But unfortunately on the way home he stopped breathing and was taken to the ICU. Died a night after that..doctors were surprised too...we are all very sad for him...died young at 22. I wish you all good health and long life. Peace.
@Badr027 Oh, I am so sorry for your cousin, dear! Yes, he was too young :( I didn't have surgery, because I don't need it. I was born with oxygen deficiency and then my parents dealt with me a lot, we did exercises and I grew up like the children at my age. Now I don't have too much symptoms, only headaches and hand trembling.
I have chiari too but I have type 1 so it's not SO bad. I just have frequent dizziness, and sometimes headaches. And I frequently feel nauseous. I just hope it won't get worse.
I have Arnold-Chiari & occipital neuralgia. It took years just to be correctly diagnosed. I live in upstate NY where good doctors are...well, not here. lol
I have to drive 1 hour each way just to go to pain management once a month. And they can barely grasp what i'm going through. Anyone in NY state who thinks they can help me, please contact me. This sucks.
my baby Valentina... Ella sufre de Arnold Chiari III de nacimiento+mielomeningocele encefálico+hidrocefalia. Es mi sol de 14 años, casi 15 y aunque no habla y tiene un retraso importante madurativo, entiende todo y se hace entender. Es mi sol hermosa! My Valentina! <3<3<3
I have just been diagnosed with chiari and was wondering if there was any link with coeliac disease? I didnt want either conditions but it explains a lot about me and my symptoms, its also very interesting area of research!
This past October my brother was admitted to the hospital in Tuscon for neurological problems after a sudden onset of mysterious symptoms. As he arrived to the hospital he went into a seizure. He lost the ability to speak and also lost muscle mobility for 2 hours. His paralysis wore off and he is better now. The doctors had a hard time diagnosing him but say he may have this.
my dad has arnold chiari and he has had 4 brain surgeries and will be having his 5th one in about 2 weeks. sometimes his head hurts so bad that when he takes a step he almost falls. i am hoping that this surgery will finally fix all of his problems and he will be better for the rest of his life
@Wiggyify ACM's symptoms are, for example: headache, tinnitus (ringing in the ears), dizziness and vertigo, facial pain, dysphagia, muscle weakness, sleep apnea... But it depends on the type of this disease. I have type 1, so I have frequent headache, and my hands tremble many times.
thank you , that was REALLY useful. i'm assming as well that it sometimes produces difficulty in breathing right? how about palpitations ( irregular heart beats?)
@Wiggyify You're very welcome! Yes, I think difficulty in breathing is one of it symptoms. I don't know about irregular heart beats, my heart beats normally. I am sure, you will be much cleverer if you check out it on Wikipedia. ;-)
@Wiggyify The earliest symptom detectable by a person involves a hi-frequency sound, which an older pair of ears cant detect. I'm 20 and occasionally I'll notice or HEAR movement of fluid at the back of my neck/head. It's very hard to ignore. The sound is similar to rice crispies cereal crackling in a bowl. If you can hear this, chances are you have chairi.
My son has Arnold Chiari Malformation and had surgery when he was 2 yrs old. he is now 10. This is a great video to show his teachers and others who do not understand.
My son has Arnold Chiari Malformation and had surgery when he was 2 yrs old. he is bow 10. This is a great video to show his teachers and others who do not understand.
My son was diagnosed in Feb. had the surgery in August and is now out of school until Dec at the earliest! The first 2 weeks after surgery he was great! Now, they have no idea what happened but the herniation has grown and we are off to see more specialist. This disease is a case by case kind of thing and whats good and works for one patient doesn't always work for another. This malformation definately needs research and awareness!
Could I point out that Type 1 of this disorder isn't as serious. It's usually an incident find in an MRI scan and many peoplw who have Type 1 have no symptoms and doesn't affect them, apart from a few headaches. I thought it was worth pointing out since it's the most common type.
I had this surgery when I was 10, they found it when I was having an MRI on my back because I was starting to form scoliosis. I had to have surgery for both.
very educational..I appreciate it...syinx's and chairis are very little known about it's a rare disorder and I have it!! It sucks balls...I've gone to 3 neurosurgeons and not ONE wants to operate on me for fear they will make me worse..ugh...living with SM and Chairi is a bitch and I wish they'd come up with a cure!!
i am soooo glad i found this video .i have Arnold Chiari n was treated 4 bad headaches n thats all.when i had my twins i kept passing out n also had so many symptoms.the doc told me it was stress!!!!!!!it was actually the optician who rushed me into hospital.If he hadnt i wouldnt be here 2day!!!!!
OMG,I`m so lucky,I see what everyone is going through,I`ve been there its horrible,I was diagnosed in 1994,operated on in 1995,and it all went great,I still stumble once in a while when I walk,but I,worked hard to regain balance,think positve,I work out ,do muay thai training and lead a good life,I HOPE ALL YOU GUYS GET WELL AND ARE AS FORTUNATE AS I AM!
Before this matter had a back injury with the lumbar spine now my Gait is really off. Arms, hands,legs feet,back,just hurts. I feel pain all over. Vision bad. BURNING TINGLING HEADACHES SWALLOWING ECT THE LIST JUST GOES ON AND ON. SOMETIMES FEEL AS THROUGH I HAVE SLOW BREATHING THIS IS SCARY TOO ME....
ive got it and my doctor says its nothing to worry about but am starting to think otherwise cause am getting more of the symtoms associted with it does anybody else have the abnormal gait???
For the past 3 years I believed i had occipital neuralgia ...and i may, but a went to a new pain mgmt doc who said one of my reports from a neurosurgeon i saw a couple years ago says i have borderline Arnold-Chiari. He never said anything to me,and my brain MRI and CT say everything is normal. Apparently they were read wrong. So now we are looking at that for the daily unbearable pain in the back of my head. I have no tingling and only have numb fingers in the cold. Trust no doctors.
This St.Patricks day will be my Anniversary,...17 years ago diagnosed with ACM,..I keep a smile on my face,..what other choice do I have?...It was the hand I was dealt,...Gotta make the best of a bad hand.. :) (keep msiling)
I finally got the magic crystal and made the malevolent Doctor Chiari go back to to the depths of hell, along with all of his victims as well as all the victims of his accomplice, Sir Hydrocephalus the 1st.
I had the surgery when I was 13. Worth it, so worth it. If you are thinking about the surgery, please get it. I have no problems of tingling and numbness anymore.
I finally got to go see a chiari specialist in Mi Wi. They told me i have moderate Chiari but it does not fit criteria for surgery. I am happy to know FOR SURE why i have all the issues i have in my upper back and neck, but now i feel STUCK!! Any Extension at all of my neck causes me so much pain that somedays it could drive me crazy. I am not sure what to do to learn to tolerate this, since i am not a canadate for surgery to repair my chiari. Suggestions?
I am watching your video again, cause its been awhile since seeing it. You sure got lots of comments on Chiari. I finally went to see a Chiari specialist in Mi Wi. They told me that i have mild chiari, but it does not fit the criteria for surgery. They also told me i have very high homocysteine which could tie in with some of the burning pain i have in my upper back and neck. Now i am undergoing all sorts of heart tests, cause high homocysteine levels can lead to heart issues. grrrr
I was diagnosed w/ACM in the 90's,...my neuro. wanted me to have the surgery 6 years ago,.I am ashamed to say,..I freaked out,and I have not been back for a check-up or anything,..(That was sooo stupid of me,)...I will be going back in for another MRI to ""see" where I'm at now,...and yes I know I will have to suk it up and have the surgery,(even though I am scared crapless,...lol)...My symptoms are getting worse,...the pain in the back of my neck and the headaches are hard to tolerate now....
I had this disease, but since I was in an action-movie type inspirational series of events I magically defeated it and had to fight the inventor of this evil, Dr. Chiari, to the death, but it was difficult because he was also the inventor of Hydrocephalus.
after a year of chronic headaches i was diagnosed with this problem. The headaches have not been as frequient as before so I dont know if i should do the surgery. Would it be worth the risk to do the surgery or man up with the pain?
This is awesome you have added to it since I last saw it, very imformatie on e of the best I have seen. yours has been watched more than the proessional vids way to go.....:)
I was just diagnosed with this today, they had thought i had it a month ago when I began to have neuro problems, they didn't know if it was due to this or my spina bifida but today told me that i have it worse then the other doctor thought and if my symptoms get worse they will operate but are concerned due to all the damage from the spina bifida im lucky as my spina bifida was mild but the surgeries caused lots of damaged, im scared out of my mind and this video helped thanks for that!
well dont b scared. yes its a big surgery,,, but its better to have the surgery than not, remember that, i had it back in 2006, only had to get it once, and also my chiari is wat caused my scoliosis, i also had to get surgery for that as well, i wish u luck and let me know the update sweety.
Hello, i love your video. Thanks for putting it out there too educate people like me. I have Syringomyelia but i cannot find as much info on it as i do Chiari. I live in a small town and doctors here do not know about Syringomyelia. So far i am just living with my condition but it is getting worse each day. My MRI reveals SM and i have a Syrinx. I am not sure if my doctors would know Chiari if they see it. Does anyone have SM without Chiari here? Any info appreciated.
If you have a very minimal chiari, maybe not a true chiari you will be more prone to getting syringomyelia, so the chiari part is often not found or diagnosed because it is not protruding wnough, but the CSF fluid flow is still blocked and that causes the syringomyelia
Only it's not that part of the cerebellum that descends. It's the tonsils. That's why they have the surgical procedure "Cerebella Tonsillectomy". That is what I had.
Hi, Lorenzo! Thank you, I'm so glad you like it. I think in the summer holiday I will make more medical videos. When I made this I was a beginner :) but I'm glad you write it.
We learned about this in Neuroanatomy as well in embryology, never really had the chance to 'youtube' the info, but more so on Kaplan/Falcon videos. lol.
Your video is very concise, plus the music background rocks. Its very enya-esque. haha!
I'm not a med student, just interested in a lot of kind of problems. I'm studying as Multimedia Developer in Tatabánya, near my hometown. And trying to show my videos to YouTube members. Now I have a lot of exams, so I'm busy a little bit. But I try my best!
I want to thank you for this video, it has helped me so much and thanks to all that has made these videos about ARC. I always thought i was alone with this. Living in this state i have not met anyone with it nor do the doctors know much about it.I had surgery 15 yrs ago and it didnt help. I was diagnosed wrong for so many years. I am 46 yrs old now and worse than i have ever been and there tis nothing that can be done. thanks again *huggers.
I was diagnosed with Chiari I in 1999, after being misdiagnosed for 11 years. I was born with Spina Bifida, and suffered a neck injury thru a car accident in 1988, which resulted in the chiari. Unfortunately, because it wasn't picked up early enuff, surgery is deemed too risky. I am looking for answers to stop the progression, without much luck. Would love to connect with someone in New Zealand with the same condition. Thanks, Michelle.
i found out i had ac when i was 7 i had the surgery and recovered if your looking for a great doctor in the chicago area go to dr. david frim he did an amazing job. one surgery and its been over 11 years since,
I too have AC1. But due to a horrible car accident in '94 (so far) the Dr. I've seen say I can Not have any type of surgery. Even though my symptoms are beyond debilitating! I am completely disabled now and can not work at all, and the pain is beyond words to describe. I am desperate to find a Dr that is willing to help me. Here in Alberta, Canada there is not enough Doctors that know enough about AC to help properly to begin with. Someone Help me Please.
I have chiari 1 and I am going in for my third surgery tomorrow morning, actually this morning haha. Ummmm you don't have to have surgery, it just depends on how bad your symptoms are and if you have syringomelia. Which is life threatening. My first two surgeries were supposedly "extremely successful" however, that is obviously not the case. I have a new surgeon and my old one moved to California due to a mal-practice law thing. He got fired in other words... so here i am again for the 3rd time.
I'm curious to chat with you about this. I have the same thing as you. I have had three surgeries and it did not fix the problem. I also have a lumbar shut that is connected to my spine and brain. My doctor left for CA too for the same reason.
i have chiari 1. m 16 i was diagnosed when i was about 15 its pretty horrible and verry painful. my aunt has the worst of it and has to take medications every single day of her life. she also has other stuff on top of that.. but not once have i eve seen her ask for help. its amazing how life can be great one moment and change the next.
i have spina bifida and ac (type 2) and have also had the corrective surgery and life has never been better!!... 3 months of recovery where not much happened in the way of recovery... a further 3 months and i was fighting fit (total 6 months from surgery)
i was diagnosed with this when i was 8. i had an operation to correct it and side effects from that operation include severeley painful headaches and migraines. the surgeon who operated on me was Henry Marsh.
7 years ago I started having paralyis in my arms and legs. The MRI showed AC. I had a 11 hour surgery. 5 years of recovery, doctors and medication. No meds for almost 3 years now. I still see black spots sometimes and have numbness and tingling in my arms and legs. I am so grateful to be alive. It was very scary. Dr. Michael Caron did my surgery and I am so glad he did a fabulous job. It is a long life battle. MRI every year just to be safe. I still get scared it will come back.
i had two surgeries for mine. Spent a week in ICU each time which is considered a quick recovery. It is five years later from my last one and I am perfectly fine.
Really? Thanks so much! I am so glad you like it. I made an other video, called 'I want to help! ~ ACM & Me'. If you have enough time, check it! ;-) I like your video of your son, I think, very touching.
i have also got chiari, and my two littlesister have got it too, i think someone told me that me and my sister, whereone of the only sisters in the world, who have the chiari. I have tried to find some info on the net, but it's many words that i can't understand, beucase i'm from sweden. None of us can operate, it wouldn't help. Beucase we havn't got the usial symtomes, we have got werry bad eyesight. Do anyone's got it too? ore is it just me and my sister's?
A family member (1 year old) is having this surgery soon. If anyone has had a young child go through this surgery and can give me any useful info, please provide. Parents have scheduled the surgery and are quite nervous.
i had the surgery from dr. ellenbogen from UW, one of the best, and it was a success. but i blew my seal in my dura!! it was hell! more pain than i thought possible! had surgery in nov, 07, and am just getting around to normal. ended up w/ massive back pain and am on oxy 80s still. they suck!! but the chiari headache is gone forever!!!! hooray!!!! thank Dr. Ellenbogen!!! u saved my life. jason 14 mm from washington state
i had my surgery a cuple of month ago, the recovery is horrible n painfulll as i got rushed back in to hospital with a block on my brain cuz i didnt drink my fluids after my op..that was bad.but now lookin back the surgery was worth it cuz i hardly get symptoms now. so hopefully all goes well for every1 else
im haveing this surgery on june 12th. im 14 ANND its my seccond sugery im a very namal girl though nobody even know except my family. i stay in the icu.
My 6-year-old son was diagnosed today with this malformation. He will have surgery on 6/10/08. Your video helped make sense of a lot of what his neurosurgeon told my wife and I today. Thank you for your contribution, and God bless you.
I am so glad I hear it that my video helped to you. I not really know Chiari because I haven't got too much symtoms, but I really hope your son is fine! God bless you and your son, too!
i lovedd ur video...i had this surgery when i was 2 and im now 13 i was the first toddler to survive the surgery.thak God that were all blessed and alive and healthy
ummm... they've been doing the decompression procedure for a lot longer than you've been alive, and they wouldn't have kept doing a procedure on toddlers that had a 100% kill rate. People of all ages have survived it for decades!
who said it had 100% kill rate I didnt notice that what a thing to say I have know of two people who did not survive the surgeries but I was never told why. There are complications with every surgery in my case I sprung a CSF leak after I was sent home and had to return and reopened and sutered back up due to the chances of having a brain infection which can be deadily but it was no big deal and I do not think it was the surgeons fault just one of those things my cervical surgery sucked...:(
i had ny surgery with the new thecnical, section filum terminale, i had a lot of symtoms around 5 years, now i´m better but some symtoms are irreversibles!
This is brilliant! I had decompression surgery when I was 12, and i'm 18 now. It's the most fabulous thing to be rid of the headaches, and be coordinated enough to do regular things. It's so amazing to find out what you can do after corrective surgery. I still get nystagmus, but it's been great. Your video has explained a lot for me. I kept the doctor's notes on my Chiari, now I can see what some of the words mean. :)
Hm, just my parents know this. I think they wanted to help me and therefore they have dealt with me a lot. As I have grown older I didn't need any treatments because I looked healthy. But last year my parents and I went to an MRI medical report and I have some photos of my brain. I will show them to a doctor.
I have Chairi. Had the surgery on Feb 26th. Its a rough rough recovery! Thanks for putting this out there so people can see what this malforamtion is all about. There are so few..even in medical feilds that know about it!
I just know I have Chiari for 2 years. When I was born I didn't get enough oxygen and I had cerebral haemorrhage. But when I left the hospital, my parents have dealt with me a lot and I live as a normal person. I will meet the doctor who helped me when I was a little baby. I didn't have surgery, I have some photos of my brain. Hope you're fine now. Blessings to you, too!
Thanks very much! Glad that my video is your favorite :P Btw, there is a relationship between Hydrocephalus and ACM, both of them in the brain and I think in the cerebellum. I thought Hydrocephalus is completely different, but maybe not...
there are several on FB groups from the uk and tey could help you
rozia50 2 weeks ago
does any european have a surgery for this ? i need to know where my wife can have a "safe" surgery....
bingofioul 3 months ago
Thank-you for sharing your video. I am disabled at the age of 53 years from a Basal Skull Fracture and severe concussion. I slipped on the ice here in North Idaho on January 5th, 2008. I had a 6 inch break to my cerebullum and concussion. And, 6 months later another bad concussion followed from a fall. Today, I am 57 and very disabled with headaches everyday, lost 50% of my hearing, eye problems, Vertigo, etc. I can identify with you as I have pressure also on my brain. God Bless You.
idahopaula 4 months ago
I have chiari and had a surgery couple of years ago, first MRI showed significant pressure decrease in me spinal cord. Now I'm waiting for follow up check to see if I'm ok or if I need a new surgery.
I have a slight pain in my left arm and decreased sense of touch in the left side of my body. Have to eat painkillers and some sort of anti-depressants for chronic pain.
Tatuks 4 months ago
i have chiari 1 and have had decompression surgery lumbar drains you name it. im so glad you made this video to help heighten awareness!
smunnal 4 months ago
thank you it's really help me
thank you again
diaamahdi 6 months ago in playlist Science & Medicine
I think you did a fabulous job and I am a Radiologist!
Good luck with your health. G-d Bless.
TheRayDoc 6 months ago
maybe i have chiari, if i do have it so it will be my diagnostician, and i not even a doctor, but i got to do one test before i really said it. i will do it.... it will be amazing if i'm right when anyone else was right.
FromDarkness100 6 months ago
Thanks for making this video. I was just diagnosed with chiari about a week ago and every medical report couldn't put it in simplest form... This really helped me have a better understanding of the condition.
paranormalmind37 8 months ago
SzChristie, how are you now? Have you gone in for surgery to correct this malformation? My cousin recently underwent surgery for this and he was doing fine and was also discharged from the hospital. But unfortunately on the way home he stopped breathing and was taken to the ICU. Died a night after that..doctors were surprised too...we are all very sad for him...died young at 22. I wish you all good health and long life. Peace.
Badr027 8 months ago
@Badr027 Oh, I am so sorry for your cousin, dear! Yes, he was too young :( I didn't have surgery, because I don't need it. I was born with oxygen deficiency and then my parents dealt with me a lot, we did exercises and I grew up like the children at my age. Now I don't have too much symptoms, only headaches and hand trembling.
SzChristie 8 months ago
@SzChristie Thanks for the reply. I'm glad to hear you're doing better now. Wish you all the best in life and good health :)
Badr027 7 months ago
I have chiari too but I have type 1 so it's not SO bad. I just have frequent dizziness, and sometimes headaches. And I frequently feel nauseous. I just hope it won't get worse.
ToxicPin 8 months ago
I have Arnold-Chiari & occipital neuralgia. It took years just to be correctly diagnosed. I live in upstate NY where good doctors are...well, not here. lol
I have to drive 1 hour each way just to go to pain management once a month. And they can barely grasp what i'm going through. Anyone in NY state who thinks they can help me, please contact me. This sucks.
humasima 10 months ago
my baby Valentina... Ella sufre de Arnold Chiari III de nacimiento+mielomeningocele encefálico+hidrocefalia. Es mi sol de 14 años, casi 15 y aunque no habla y tiene un retraso importante madurativo, entiende todo y se hace entender. Es mi sol hermosa! My Valentina! <3<3<3
laPatriar 10 months ago
This has been flagged as spam show
) Hold your breath.
2) Copy all of these steps.
3) Go to two other video.
4) Paste it in the comments.
If you can do all of this without breathing you're a good pot smoker
sgtsti9 1 year ago
ugh i have it n it sucks its so painful im just lucky i dont have it the worst,yet
XxBrodyKiowaXx 1 year ago
I have just been diagnosed with chiari and was wondering if there was any link with coeliac disease? I didnt want either conditions but it explains a lot about me and my symptoms, its also very interesting area of research!
bobbymac0 1 year ago
This past October my brother was admitted to the hospital in Tuscon for neurological problems after a sudden onset of mysterious symptoms. As he arrived to the hospital he went into a seizure. He lost the ability to speak and also lost muscle mobility for 2 hours. His paralysis wore off and he is better now. The doctors had a hard time diagnosing him but say he may have this.
beanybudd 1 year ago
my dad has arnold chiari and he has had 4 brain surgeries and will be having his 5th one in about 2 weeks. sometimes his head hurts so bad that when he takes a step he almost falls. i am hoping that this surgery will finally fix all of his problems and he will be better for the rest of his life
bugsy3609 1 year ago
so what are the symptoms of this condition?! we still havent taken it in med school, but it sounds so interesting!
Wiggyify 1 year ago
@Wiggyify ACM's symptoms are, for example: headache, tinnitus (ringing in the ears), dizziness and vertigo, facial pain, dysphagia, muscle weakness, sleep apnea... But it depends on the type of this disease. I have type 1, so I have frequent headache, and my hands tremble many times.
SzChristie 1 year ago
@SzChristie
thank you , that was REALLY useful. i'm assming as well that it sometimes produces difficulty in breathing right? how about palpitations ( irregular heart beats?)
much appreciated :)
Wiggyify 1 year ago
@Wiggyify You're very welcome! Yes, I think difficulty in breathing is one of it symptoms. I don't know about irregular heart beats, my heart beats normally. I am sure, you will be much cleverer if you check out it on Wikipedia. ;-)
SzChristie 1 year ago
@Wiggyify The earliest symptom detectable by a person involves a hi-frequency sound, which an older pair of ears cant detect. I'm 20 and occasionally I'll notice or HEAR movement of fluid at the back of my neck/head. It's very hard to ignore. The sound is similar to rice crispies cereal crackling in a bowl. If you can hear this, chances are you have chairi.
weeg91 1 year ago
ty now i know
naprbb 1 year ago
This has been flagged as spam show
My son has Arnold Chiari Malformation and had surgery when he was 2 yrs old. he is now 10. This is a great video to show his teachers and others who do not understand.
Leanne
Lavender1970 1 year ago
My son has Arnold Chiari Malformation and had surgery when he was 2 yrs old. he is bow 10. This is a great video to show his teachers and others who do not understand.
Leanne
Lavender1970 1 year ago
good job! thanks for putting this together and posting this.
mamie59 1 year ago
My son was diagnosed in Feb. had the surgery in August and is now out of school until Dec at the earliest! The first 2 weeks after surgery he was great! Now, they have no idea what happened but the herniation has grown and we are off to see more specialist. This disease is a case by case kind of thing and whats good and works for one patient doesn't always work for another. This malformation definately needs research and awareness!
mmdmdj 1 year ago
i have this condition too and got the bony decompression surgery to fix it when i was seven.
gowiththeflo05 1 year ago
Could I point out that Type 1 of this disorder isn't as serious. It's usually an incident find in an MRI scan and many peoplw who have Type 1 have no symptoms and doesn't affect them, apart from a few headaches. I thought it was worth pointing out since it's the most common type.
youboob6022 1 year ago
@youboob6022
Yeah, I'm pretty sure that's what my brother has. He never has headaches, apart from hangovers haha.
beanybudd 1 year ago
I had this surgery when I was 10, they found it when I was having an MRI on my back because I was starting to form scoliosis. I had to have surgery for both.
dontcallmedoll88 1 year ago
for the most part since my surgery I have lived a great life I just have days that well if you have Chiari you know. God bless all of you.
budutahman 1 year ago
i have this too! thanks for the additional info!
obladioblada1234 1 year ago
can you die from chiari malformation?
johncoolgun 1 year ago
very educational..I appreciate it...syinx's and chairis are very little known about it's a rare disorder and I have it!! It sucks balls...I've gone to 3 neurosurgeons and not ONE wants to operate on me for fear they will make me worse..ugh...living with SM and Chairi is a bitch and I wish they'd come up with a cure!!
flyer11234 1 year ago
Thank you very much christie, this is very well made...please go on...
rcgoze 1 year ago
I had the surgery and I think you did a wonderful job! Kudos for getting the word out about a little known and very misdiagnosed disorder!
cpenncat2 1 year ago
this is a beautiful video.. very very touching and informative too.. thank u for dis one!! helps use less of my crap imagination while studying ;)
bindi2210 1 year ago
I loved it!!!
sasaquing 1 year ago
it's a very painful condition let me tell you...I suffer from it...
flyer11234 1 year ago
I had chiari decompression surgery when I was 13. It was pretty easy (:
Hilaryisweird 1 year ago
i am soooo glad i found this video .i have Arnold Chiari n was treated 4 bad headaches n thats all.when i had my twins i kept passing out n also had so many symptoms.the doc told me it was stress!!!!!!!it was actually the optician who rushed me into hospital.If he hadnt i wouldnt be here 2day!!!!!
LOWIUK 1 year ago
OMG,I`m so lucky,I see what everyone is going through,I`ve been there its horrible,I was diagnosed in 1994,operated on in 1995,and it all went great,I still stumble once in a while when I walk,but I,worked hard to regain balance,think positve,I work out ,do muay thai training and lead a good life,I HOPE ALL YOU GUYS GET WELL AND ARE AS FORTUNATE AS I AM!
SUPERBAD007NL 2 years ago
Before this matter had a back injury with the lumbar spine now my Gait is really off. Arms, hands,legs feet,back,just hurts. I feel pain all over. Vision bad. BURNING TINGLING HEADACHES SWALLOWING ECT THE LIST JUST GOES ON AND ON. SOMETIMES FEEL AS THROUGH I HAVE SLOW BREATHING THIS IS SCARY TOO ME....
birdsid 2 years ago
I have had ACM for 5 years & had 3 ops to date. Scary at first, second nature now.
widemouthedfrog1 2 years ago
ive got it and my doctor says its nothing to worry about but am starting to think otherwise cause am getting more of the symtoms associted with it does anybody else have the abnormal gait???
jimmy2k4o 2 years ago
For the past 3 years I believed i had occipital neuralgia ...and i may, but a went to a new pain mgmt doc who said one of my reports from a neurosurgeon i saw a couple years ago says i have borderline Arnold-Chiari. He never said anything to me,and my brain MRI and CT say everything is normal. Apparently they were read wrong. So now we are looking at that for the daily unbearable pain in the back of my head. I have no tingling and only have numb fingers in the cold. Trust no doctors.
humasima 2 years ago
@humasima YES I FEEL NUMBNESS TINGLING BURNING HEADACHES BACK ACHES around the neck space... do you have trouble swallowing
birdsid 2 years ago
(bad spelling on that last comment)....KEEP SMILING EVEYONE,.If.YOU BELIEVE IN YOU,...EVERYONE ELSE WILL...(I know sounds cheesy,...but it's true!)
TheLoralee 2 years ago
This St.Patricks day will be my Anniversary,...17 years ago diagnosed with ACM,..I keep a smile on my face,..what other choice do I have?...It was the hand I was dealt,...Gotta make the best of a bad hand.. :) (keep msiling)
TheLoralee 2 years ago
Comment removed
jimmy2k4o 2 years ago
did you experience burning headaches at the brain stem . blurred vision. fatigue and trouble swallowing?
foxleyleon 2 years ago
my brain stem felt more sore like muscle pain rather than burning
jimmy2k4o 2 years ago
I finally got the magic crystal and made the malevolent Doctor Chiari go back to to the depths of hell, along with all of his victims as well as all the victims of his accomplice, Sir Hydrocephalus the 1st.
ARHGH AORGKH
Tr1pol1Samson 2 years ago
@Tr1pol1Samson lol tell him hes a asshole for me :)
jimmy2k4o 2 years ago
I had the surgery when I was 13. Worth it, so worth it. If you are thinking about the surgery, please get it. I have no problems of tingling and numbness anymore.
Hilaryisweird 2 years ago
i have chiari malformation i had it all my life but my doctor is thinking about the surgery for it i still have bad headache's
hannahgrer19 2 years ago
@hannahgrer19 please do the surgery. i did and I don't regret it a single day.
Hilaryisweird 2 years ago
@hannahgrer19
i might get the surgery when its get worser
hannahgrer19 2 years ago
I finally got to go see a chiari specialist in Mi Wi. They told me i have moderate Chiari but it does not fit criteria for surgery. I am happy to know FOR SURE why i have all the issues i have in my upper back and neck, but now i feel STUCK!! Any Extension at all of my neck causes me so much pain that somedays it could drive me crazy. I am not sure what to do to learn to tolerate this, since i am not a canadate for surgery to repair my chiari. Suggestions?
twohassles43 2 years ago
I am watching your video again, cause its been awhile since seeing it. You sure got lots of comments on Chiari. I finally went to see a Chiari specialist in Mi Wi. They told me that i have mild chiari, but it does not fit the criteria for surgery. They also told me i have very high homocysteine which could tie in with some of the burning pain i have in my upper back and neck. Now i am undergoing all sorts of heart tests, cause high homocysteine levels can lead to heart issues. grrrr
twohassles43 2 years ago
I was diagnosed w/ACM in the 90's,...my neuro. wanted me to have the surgery 6 years ago,.I am ashamed to say,..I freaked out,and I have not been back for a check-up or anything,..(That was sooo stupid of me,)...I will be going back in for another MRI to ""see" where I'm at now,...and yes I know I will have to suk it up and have the surgery,(even though I am scared crapless,...lol)...My symptoms are getting worse,...the pain in the back of my neck and the headaches are hard to tolerate now....
TheLoralee 2 years ago
I've had it twice, really not that bad, good luck
nebfan94 2 years ago
I had this disease, but since I was in an action-movie type inspirational series of events I magically defeated it and had to fight the inventor of this evil, Dr. Chiari, to the death, but it was difficult because he was also the inventor of Hydrocephalus.
Tr1pol1Samson 2 years ago
after a year of chronic headaches i was diagnosed with this problem. The headaches have not been as frequient as before so I dont know if i should do the surgery. Would it be worth the risk to do the surgery or man up with the pain?
SolidSnakeEater123 2 years ago
@SolidSnakeEater123 please do the surgery. I did.
Hilaryisweird 2 years ago
i have it im gettin another m.r.i. because of it
nebfan94 2 years ago
yo tambien tengo arnold chiari
Saludos
chiarivall 2 years ago
you done the anteriorly way?
ChuckyIsSoCute 2 years ago
This is awesome you have added to it since I last saw it, very imformatie on e of the best I have seen. yours has been watched more than the proessional vids way to go.....:)
sheilaschiarijourney 2 years ago
Comment removed
i2unforgetable 2 years ago
I was just diagnosed with this today, they had thought i had it a month ago when I began to have neuro problems, they didn't know if it was due to this or my spina bifida but today told me that i have it worse then the other doctor thought and if my symptoms get worse they will operate but are concerned due to all the damage from the spina bifida im lucky as my spina bifida was mild but the surgeries caused lots of damaged, im scared out of my mind and this video helped thanks for that!
allisunwonderland 2 years ago
well dont b scared. yes its a big surgery,,, but its better to have the surgery than not, remember that, i had it back in 2006, only had to get it once, and also my chiari is wat caused my scoliosis, i also had to get surgery for that as well, i wish u luck and let me know the update sweety.
devilchk702 2 years ago
My wife just had this surgery last week at standford Med, she is doing great! so far so good :))))
CRF916 2 years ago
who was her doctor
soloyo104 2 years ago
Hello, i love your video. Thanks for putting it out there too educate people like me. I have Syringomyelia but i cannot find as much info on it as i do Chiari. I live in a small town and doctors here do not know about Syringomyelia. So far i am just living with my condition but it is getting worse each day. My MRI reveals SM and i have a Syrinx. I am not sure if my doctors would know Chiari if they see it. Does anyone have SM without Chiari here? Any info appreciated.
twohassles43 2 years ago
If you have a very minimal chiari, maybe not a true chiari you will be more prone to getting syringomyelia, so the chiari part is often not found or diagnosed because it is not protruding wnough, but the CSF fluid flow is still blocked and that causes the syringomyelia
Jamaica4god 2 years ago
Great Video!!
ralemi 2 years ago
i have arnold chiari malformation
dawnaloveyou 2 years ago
i hjave this and got operated when i was 8 then at 10 and a last one 11-12 or so. very good and informative video thanks for posting
Arthas93 2 years ago
Only it's not that part of the cerebellum that descends. It's the tonsils. That's why they have the surgical procedure "Cerebella Tonsillectomy". That is what I had.
AsHleYBaBByy20 2 years ago
Hi Christie,
Great video, keep up the great work!
Lorenzo,
AFP785 2 years ago
Hi, Lorenzo! Thank you, I'm so glad you like it. I think in the summer holiday I will make more medical videos. When I made this I was a beginner :) but I'm glad you write it.
SzChristie 2 years ago
No problem, Christie.
We learned about this in Neuroanatomy as well in embryology, never really had the chance to 'youtube' the info, but more so on Kaplan/Falcon videos. lol.
Your video is very concise, plus the music background rocks. Its very enya-esque. haha!
I'm assuming your a med student, too?
What year?
Hey, wishing you all the best,
Lorenzo
AFP785 2 years ago
I'm not a med student, just interested in a lot of kind of problems. I'm studying as Multimedia Developer in Tatabánya, near my hometown. And trying to show my videos to YouTube members. Now I have a lot of exams, so I'm busy a little bit. But I try my best!
SzChristie 2 years ago
This is beautifully done, Kristina.
I really liked it, and all your other videos.
Good luck on studies~ study hard~ and by HIS grace, all will be fine.
:)
Lorenzo
AFP785 2 years ago
I want to thank you for this video, it has helped me so much and thanks to all that has made these videos about ARC. I always thought i was alone with this. Living in this state i have not met anyone with it nor do the doctors know much about it.I had surgery 15 yrs ago and it didnt help. I was diagnosed wrong for so many years. I am 46 yrs old now and worse than i have ever been and there tis nothing that can be done. thanks again *huggers.
heavenswhisper2u 2 years ago
I'm sorry, mate. Just be strong. God Bless,
AFP785 2 years ago
I was diagnosed with Chiari I in 1999, after being misdiagnosed for 11 years. I was born with Spina Bifida, and suffered a neck injury thru a car accident in 1988, which resulted in the chiari. Unfortunately, because it wasn't picked up early enuff, surgery is deemed too risky. I am looking for answers to stop the progression, without much luck. Would love to connect with someone in New Zealand with the same condition. Thanks, Michelle.
wheels1nz 2 years ago
I found out I had chiari when i was 12 and got surgery at 13
everything seems to have gone well, I am almost 17 now :3
Estilum 2 years ago
i found out i had ac when i was 7 i had the surgery and recovered if your looking for a great doctor in the chicago area go to dr. david frim he did an amazing job. one surgery and its been over 11 years since,
pb4life31 2 years ago
I too have AC1. But due to a horrible car accident in '94 (so far) the Dr. I've seen say I can Not have any type of surgery. Even though my symptoms are beyond debilitating! I am completely disabled now and can not work at all, and the pain is beyond words to describe. I am desperate to find a Dr that is willing to help me. Here in Alberta, Canada there is not enough Doctors that know enough about AC to help properly to begin with. Someone Help me Please.
Stevilee1970 3 years ago
If you can get to Charlottesville, VA and see Dr. John Jane, Jr. He's FABULOUS! I wouldn't recommend any one else.
crazieqt 2 years ago
try Dr. James Maxwell in Rochester, ny. He is wonderful and people come to him from all over
tinkerhelen 2 years ago
I have chiari 1 and I am going in for my third surgery tomorrow morning, actually this morning haha. Ummmm you don't have to have surgery, it just depends on how bad your symptoms are and if you have syringomelia. Which is life threatening. My first two surgeries were supposedly "extremely successful" however, that is obviously not the case. I have a new surgeon and my old one moved to California due to a mal-practice law thing. He got fired in other words... so here i am again for the 3rd time.
AshLLeyyBabii 3 years ago
I'm curious to chat with you about this. I have the same thing as you. I have had three surgeries and it did not fix the problem. I also have a lumbar shut that is connected to my spine and brain. My doctor left for CA too for the same reason.
crazieqt 2 years ago
i have chiari 1. m 16 i was diagnosed when i was about 15 its pretty horrible and verry painful. my aunt has the worst of it and has to take medications every single day of her life. she also has other stuff on top of that.. but not once have i eve seen her ask for help. its amazing how life can be great one moment and change the next.
somethingeasy89 3 years ago 2
My last comment is down there.. But thank you again for such a wonderfull video!!! God Bless Sweetie
Lollipop12104 3 years ago 2
i hate chiari. the headaches hurt really bad
xxxgatoradeboyxxx 3 years ago 6
i have spina bifida and ac (type 2) and have also had the corrective surgery and life has never been better!!... 3 months of recovery where not much happened in the way of recovery... a further 3 months and i was fighting fit (total 6 months from surgery)
incomprehensible1 3 years ago
i was diagnosed with this when i was 8. i had an operation to correct it and side effects from that operation include severeley painful headaches and migraines. the surgeon who operated on me was Henry Marsh.
sbrankin627 3 years ago
7 years ago I started having paralyis in my arms and legs. The MRI showed AC. I had a 11 hour surgery. 5 years of recovery, doctors and medication. No meds for almost 3 years now. I still see black spots sometimes and have numbness and tingling in my arms and legs. I am so grateful to be alive. It was very scary. Dr. Michael Caron did my surgery and I am so glad he did a fabulous job. It is a long life battle. MRI every year just to be safe. I still get scared it will come back.
jax101829 3 years ago
i have it to
cisco505 3 years ago
If you have AC does it mean you have to have the surgery? I'm usually not a pussy for these things but this scares the shitters out of me
XpolymerX 3 years ago
I did when i was 5 i was scared soo much i am only 11 now but i was scared to
Spoilpaige 3 years ago 2
i had two surgeries for mine. Spent a week in ICU each time which is considered a quick recovery. It is five years later from my last one and I am perfectly fine.
swimmer19982011 3 years ago
You did such a wonderfull job with this!!! Thank you soo much from the bottom of my heart, for making a video that helps people understand!!
Sincerely, Rhonda and Alex, both of us have Chiari
Lollipop12104 3 years ago
Really? Thanks so much! I am so glad you like it. I made an other video, called 'I want to help! ~ ACM & Me'. If you have enough time, check it! ;-) I like your video of your son, I think, very touching.
God Bless both of you!
SzChristie 3 years ago
i have also got chiari, and my two littlesister have got it too, i think someone told me that me and my sister, whereone of the only sisters in the world, who have the chiari. I have tried to find some info on the net, but it's many words that i can't understand, beucase i'm from sweden. None of us can operate, it wouldn't help. Beucase we havn't got the usial symtomes, we have got werry bad eyesight. Do anyone's got it too? ore is it just me and my sister's?
popkontroll 3 years ago
A family member (1 year old) is having this surgery soon. If anyone has had a young child go through this surgery and can give me any useful info, please provide. Parents have scheduled the surgery and are quite nervous.
ginan813 3 years ago
i have arnold kiari too but i have never needed surgery haha sorry about that.
marble678 3 years ago
well some people are not as lucky:( sadley to say
hiney2002 3 years ago
This has been flagged as spam show
I have added your video to:
w w w . arnold - chiari . com
Thanks for all
JaviExAmandi 3 years ago
Thank you! I am glad you added my video there, and I am glad you like it as well.
SzChristie 3 years ago
Thanks to you for your explications and your work!, i hope that you are fine.
JaviExAmandi 3 years ago
I am fine as always, you are very kind. :) Thank you!
SzChristie 3 years ago
Nooo, you are more kind, jajajaj. kisses (besos!!, i´m spanish boy)
JaviExAmandi 3 years ago
Hi my name's Cristian from italy. At my girlfriend two years ago a good italian medic was diagnosed the arnold chiari malformation,
in italy there'isnt a clinic to operate or a medic he wont to operate my girlfriend...
I love it soo much... I'm desperate...
I' need help sorry for my orrible english
cristiansegattini at yahoo . it
sps84 3 years ago
I love the first song but i love Matthew Broderick better
puppies21616 3 years ago
I Have Chiari also. I've had two surgeries and none of them have helped.
Good Luck with your Chiari!!
iwuvnickjonas22 3 years ago
i had the surgery from dr. ellenbogen from UW, one of the best, and it was a success. but i blew my seal in my dura!! it was hell! more pain than i thought possible! had surgery in nov, 07, and am just getting around to normal. ended up w/ massive back pain and am on oxy 80s still. they suck!! but the chiari headache is gone forever!!!! hooray!!!! thank Dr. Ellenbogen!!! u saved my life. jason 14 mm from washington state
jasonn1972 3 years ago 2
i had my surgery a cuple of month ago, the recovery is horrible n painfulll as i got rushed back in to hospital with a block on my brain cuz i didnt drink my fluids after my op..that was bad.but now lookin back the surgery was worth it cuz i hardly get symptoms now. so hopefully all goes well for every1 else
zobow182 3 years ago
im haveing this surgery on june 12th. im 14 ANND its my seccond sugery im a very namal girl though nobody even know except my family. i stay in the icu.
vladimiroff 3 years ago
LOQ TENJO YO
princesscolonbian 3 years ago
My 6-year-old son was diagnosed today with this malformation. He will have surgery on 6/10/08. Your video helped make sense of a lot of what his neurosurgeon told my wife and I today. Thank you for your contribution, and God bless you.
scottygator94 3 years ago 2
I am so glad I hear it that my video helped to you. I not really know Chiari because I haven't got too much symtoms, but I really hope your son is fine! God bless you and your son, too!
SzChristie 3 years ago
I was diagnosed with this today and I am doing research on the surgery! Thanks for your video!
sigmaspirit2003 3 years ago
i lovedd ur video...i had this surgery when i was 2 and im now 13 i was the first toddler to survive the surgery.thak God that were all blessed and alive and healthy
hollisterbabe998 3 years ago
ummm... they've been doing the decompression procedure for a lot longer than you've been alive, and they wouldn't have kept doing a procedure on toddlers that had a 100% kill rate. People of all ages have survived it for decades!
rfoster706 2 years ago
who said it had 100% kill rate I didnt notice that what a thing to say I have know of two people who did not survive the surgeries but I was never told why. There are complications with every surgery in my case I sprung a CSF leak after I was sent home and had to return and reopened and sutered back up due to the chances of having a brain infection which can be deadily but it was no big deal and I do not think it was the surgeons fault just one of those things my cervical surgery sucked...:(
sheilaschiarijourney 2 years ago
hi, congratulations for your video!
i had ny surgery with the new thecnical, section filum terminale, i had a lot of symtoms around 5 years, now i´m better but some symtoms are irreversibles!
JAVIKER75 3 years ago
This is so cool great job!
BenderRodriguezRox 3 years ago
Thank you so much!
SzChristie 3 years ago
This is brilliant! I had decompression surgery when I was 12, and i'm 18 now. It's the most fabulous thing to be rid of the headaches, and be coordinated enough to do regular things. It's so amazing to find out what you can do after corrective surgery. I still get nystagmus, but it's been great. Your video has explained a lot for me. I kept the doctor's notes on my Chiari, now I can see what some of the words mean. :)
askafajahadonastick 3 years ago
this is really cool. I had arnold chiari i had surgery when i was 7 and now im 17
pb4life31 3 years ago
Glad you like it! Oh, that's great! I didn't have surgery. Hope you're OK.
SzChristie 3 years ago
Why not? ;)
BenderRodriguezRox 3 years ago
Hm, just my parents know this. I think they wanted to help me and therefore they have dealt with me a lot. As I have grown older I didn't need any treatments because I looked healthy. But last year my parents and I went to an MRI medical report and I have some photos of my brain. I will show them to a doctor.
SzChristie 3 years ago
I have Chairi. Had the surgery on Feb 26th. Its a rough rough recovery! Thanks for putting this out there so people can see what this malforamtion is all about. There are so few..even in medical feilds that know about it!
Blessings to you!
peoplerstranj 3 years ago
I just know I have Chiari for 2 years. When I was born I didn't get enough oxygen and I had cerebral haemorrhage. But when I left the hospital, my parents have dealt with me a lot and I live as a normal person. I will meet the doctor who helped me when I was a little baby. I didn't have surgery, I have some photos of my brain. Hope you're fine now. Blessings to you, too!
SzChristie 3 years ago
I've watched it & it's cool! BTW my sister is studying Medicine in the 2nd year!
Still in my favorite + 5 stars!
mhhm07 3 years ago
Oh, I'm so glad! Thank you again! ;) I will make more, if I have free time... Hm, I'm sure your sister is very clever.
SzChristie 3 years ago
I knew that it will be nice before watching it so I've favorited this and I'm gonna watch it later! Thanx a lot & nice video (Before watching)!
mhhm07 3 years ago
Thanks very much! Glad that my video is your favorite :P Btw, there is a relationship between Hydrocephalus and ACM, both of them in the brain and I think in the cerebellum. I thought Hydrocephalus is completely different, but maybe not...
SzChristie 3 years ago
Good work!..
But could u tell us what the symptoms?
farawolah 3 years ago
Really? Thanks so much! This is my first vid what I made. Glad you like :)
The general symptoms are: dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination.
I have a problem with my hands, they are trembeling a lot.
SzChristie 3 years ago