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What Is Arnold Chiari Malformation?

Updated on November 13, 2011

Meet My Friend, Arnold

It all began with a headache. Not just any headache, a H-E-A-D-A-C-H-E. A headache so unbelievably painful that it woke me from a dead sleep because the intensity of the pain made it hurt to breathe. Now that's a HEADACHE! And when the same excruciating pain awoke me four nights in a row, I knew that I had a problem.

So began my membership in the world of neurological diseases and my journey down the path of coping with an Arnold Chiari Malformation.

Please, grab something to drink and maybe a snack, plop down on a comfortable chair, and join me on my journey down the Zipperhead Road.

Before you leave, please take a moment to give me a thumbs up if you enjoyed your visit. And, if you do any shopping here, please know that 100% of the proceeds go to the March of Dimes.

Living with a Brain Fart

"I am a sick man. ... I believe my liver is diseased. However, I know nothing at all about my disease, and I do not know for certain what ails me." -- Notes from the Underground, Fyodor Dostoyevsky

Unlike Dostoyevsky's Underground Man, I do know what ails me, and it isn't my liver; it's my brain. I have a progressively degenerative condition called Arnold Chiari (key-AH-ree) Malformation I, or ACM I for short. The image above shows and describes the problem quite well. In medical terminology, ACM I is a herniation of the brain, but I prefer to call it a brain fart. What it means for those of us who suffer from it (and I do mean suffer!) is that a portion of the brain has poked through (herniated) the dura mater, the protective membrane, and migrated south into the spinal canal where it competes for space with the spinal cord.

Probably because of its importance, the brain gets three layers of protection. Of the three layers, the dura mater is the outermost and toughest, so just imagine the pressure required to push the brain out of its triple-strength cover! It's like squeezing a piece of meat through the cellophane wrapping on the package. Most people who have ACM don't know when their brain breached the walls of its fortress because it's not until the brain actually begins its vacation in the south that they become aware of a problem.

The spinal canal is just wide enough for the spinal cord, so when a hunk of brain takes up residence there, all sorts of unpleasant things begin to happen: headaches, dizziness, vertigo, balance problems, disequilibrium, coughing, sneezing, loss of fine motor control, neck pain, muscle weakness, double vision, hearing difficulties, tingling sensations in the limbs, and headaches. Did I mention headaches? It was after a series of paralyzing headaches so painful it hurt to breathe that I decided something must be wrong and went to see my doctor, who ordered an MRI.

"Carleen," my physician said, "I've got good news and bad news. Which do you want first?"

"Let's start with the good news because it will soften the bad," I replied.

"The good news," he said as he looked the radiologist's report, "is that the MRI is proof that you have a brain. The bad news is that it has a problem." Thus began my entry into the world of neurological diseases.

Thanks to Google, I was able to learn a lot about the condition and to find others who have it. Even better for me, the information that I had gathered about Chiari allowed me to begin linking symptoms that had gone on for years, but were misdiagnosed as often happens, to the disorder. It also enabled me to prepare a series of questions for the neurologist. After a whole new battery of tests, the neurologist recommended surgery to ease the symptoms and slow the progression of the brain seepage.

ACM will worsen over time, and since the contest for space between my brain and spinal cord was already causing misery, decompression surgery was necessary. Did I mention that if left untreated, ACM can cause paralysis or death? Since neither of those options took much consideration on my part, I had lots more tests and had surgery in February 2006.

I am now an official "zipper head," the nickname that Chiari patients call themselves. The three part surgery -- craniectomy (opening the skull and removing a piece of the bone), duraplasty (opening and repairing or replacing a piece of the dura with a patch -- mine is made from bovine pericardium), and laminectomy (removing bones in the neck -- I had the C1 and C2 taken out)-- has improved my symptoms considerably. The headaches aren't gone, but they don't happen nearly as often and seem now to be triggered by stress more than anything else.

Most Chairi patients experience symptoms on one side of the body almost exclusively and for me, they happen on the right side. I still have vision issues with the right eye despite having corrective surgery. I can go up a flight of stairs but my balance and vision are so bad that I can't walk down them without falling. Even stepping off a curb can cause me to fall! One symptom that worsened instead of improving was an almost constant tingling sensation in the right arm and a feeling of spacing out.

A follow-up visit to the neurosurgeon prompted an EEG which revealed scar tissue and seizure activity in the right parietal lobe. Evidently I had been having partial-complex seizures for quite a while without realizing it! The politically correct term for this problem is "seizure disorder," but it is nothing more than epilepsy. Although I lost my driver's license for 18 months, I did have a chauffeur who took me to and from work. Husbands come in really handy sometimes!

My life has changed dramatically since I first got the Chiari diagnosis, but it hasn't been all bad. I choose not to sit on a pity pot and let life pass me by in the process. Instead, I do what I can when I can and go on from there. Yes, I get funny looks from people when I get into the elevator on the second floor to go down to the first, but I don't care what anyone thinks. It's kind of hard to avoid curbs, so I just step down sideways to avoid falling. Doing anything that requires me to stand on one leg at a time is just about impossible thanks to the balance problems, but I compensate by leaning on something or sitting down whenever possible. Nope, no pity parties for me! I am lucky enough to have received a diagnosis and treatment before the brain fart paralyzed or killed me, so why complain about tripping over curbs?

ACM I is classified as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that ACM I affects less than 200,000 people in the US population.

Common ACM Symptoms

The cerebellum, called "the brain with a brain" because of the functions it performs, is about the size of a peach and is located at the base of the brain. Its responsibilities include controlling things like sensory perception, coordinating movement, planning, on, and motor skills. It sends information to the body about maintenance of equilibrium, balance, regulation of muscle tension, and coordination of limb control.

In Chiari patients, the mid-brain, pons, medulla and cerebellum are crowded together, often with the cerebellum pushing down into the spinal cord column. With these areas of the brain being squished and with a displaced cerebellum, the normal functions that these sections of the brain perform become impaired or compromised. Additionally, the protrusion of the cerebellum into the spinal canal can block the even flow of cerebrospinal fluid which creates increased pressure in the brain and around the spinal cord.

So, what happens when the brain gets squished? Well, we get things like:

  • headaches

  • dizziness

  • neck pain

  • tiredness

  • stiffness

  • vomiting

  • difficulty swallowing

  • poor balance

  • gagging

  • muscle weakness in the head and face

  • involuntary rapid eye movements

  • double vision

  • ringing in the ears

  • inability to coordinate movements

  • sudden pain around the eyes

  • leg weakness

  • weakness in arms and hands

  • shortness of breath

  • word finding problems

  • vertigo

  • loss of peripheral vision

  • hoarse voice

Celebrity Zipperheads

Roseanne Cash, daughter of the late Johnny Cash, had decompression surgery in December 2007 for ACM I. Read all about it.

Types of ACM

As if one isn't bad enough, there are four different types of ACM and the higher the number, the worse the condition.

ACM I

Characterized by protrusion of the brain tissue below the opening of the base of the skull. Patients may also have an abnormal fluid "blister" called a syringomyelia and/or a greater accumulation of CSF (cerebrospinal fluid) in the skull, also called hydrocephalus.

ACM II

This type is diagnosed when both the cerebellum and the brain stem protrude down into the spinal column. These patients may also have syringomyelia and hydrocephalus. ACM II is most often associated with spina bifida, a congenital disorder in which the vertebrae fail to completely encircle the spinal cord.

ACM III

Includes all of the signs of the other two types PLUS a bulge in the spinal cord caused by a sac (myelomeningocele) that contains CSF. This type causes severe neurological defects.

ACM IV

The last type of ACM involves an incomplete or underdeveloped cerebellum, also called cerebellar hypoplasia. In this rarest form of ACM, the cerebral tonsils are located further down in the spinal canal, some parts of the cerebellum are missing, and portions of the skull and spinal cord are visible.

Discovery Health Channel's "Mystery Diagnosis"

Because the myriad symptoms make it difficult to diagnose ACM, many patients suffer a long time without treatment. See one patient's journey to diagnosis on an episode of Mystery Diagnosis by clicking here:

Discovery Health Channel.

You don't need to download anything; the show is available online.

My husband says that I sleep like a cat. You know how cats nap for an hour or two and then get up to play or eat? That's been my sleeping pattern for a few years now. It is frustrating, debilitating, and most of all, exhausting! I count a good night's sleep as one where I've managed to stay asleep continually for at least 3 hours. They don't happen very often. Is it any wonder that my neurologist has classified me as someone with chronic sleep deprivation?

Because I don't get enough sleep, I go through life looking and feeling exhausted all the time. In order to function, I have to nap during the day. And sometimes, when my body decides that it has had enough and needs some sleep, it will knock me on my fanny for a day or two while it plays catch up.

Of the myriad symptoms associated with ACM, sleep deprivation is the one that bothers me the most. In addition to developing the habit of snoring, I struggle with heart palpitations and seizures during the night -- none of which is conducive to sleep. I'm not alone in my misery, though.

A study published in the December 2003 issue of the Journal of Neurosurgery indicates that sleep apnea is a common cause of ACM patients' persistent tiredness. Since the respiratory control centers are located in the portions of the brain under assault by ACM, it would make sense that Chiari patients would have a higher incidence of sleep disruption than the control group. In fact, we beat the control group by a significant margin: 64% of the patients in the Chiari group had, on average, 18 episodes of sleep disruption in a single night as compared to 12% of the control group whose sleep was disrupted an average of 3 times in the same time frame.

It's no wonder I sleep like a cat and can count chronic sleep deprivation among the numerous diagnoses that accompany Chiari!

Boy, aged 3, sleeps for first time in his life!

Rhett Lamb's ACM I has kept him from sleeping all his young life. Following an experimental surgery, the little guy slept for the first time ever! Read his story here and here.

Chiari Patients' Blogs - Enter Our World in Our Words

There's nothing better than getting information about something straight from the horse's mouth, so I've collected blogs written by Zipperheads about ACM and their struggles with it.

After reading some of these entries, I was immediately reminded of how very grateful I am that my own trial with ACM isn't any worse than it is. There really are people in the world whose situations are far worse than mine.

Food for Thought

Women have a higher incidence of ACM I than men, although nobody in the medical field knows why. I think I have the answer: women naturally have bigger brains than men because they are smarter! ;)

Partial Complex Seizures

As I mentioned, decompression surgery didn't eliminate or significantly reduce an almost constant tingling sensation in my right arm or a feeling of spacing out. An EEG revealed seizure activity in the right parietal lobe of my brain, along with plenty of scar tissue indicating that I had been having seizures for quite a while without ever realizing that's what they were.

A partial-complex seizure, which is the type that I have, isn't quite as scary as the grand-mal type that most people associate with Epilepsy. I don't black out or lose consciousness, I just kind of daydream for a while. I am fully aware of what is going on around me, but I am completely powerless to respond or react to it until the seizure is over.

Most people who have partial-complex seizures have an aura, or a warning sensation that lets them know in advance that the seizure is coming. Lucky for me, I have two: the smell of something burning and an immediate, overwhelming feeling of nausea. Because I live in an area that has a fire season and wildfires occur every year, the first aura can sometimes cause confusion for me. Am I going to have a seizure or is there really a fire somewhere? In any case, when that aura happens, I have no idea when the seizure will hit me -- just that it will. With the nausea one, though, I know that it's just a matter of seconds before I'm right in the middle of the event.

Please exercise caution around people who have seizures. Don't try to restrain the person unless they are behaving violently or are in immediate danger of hurting themselves. Jumping in to "help" someone in an active seizure could cause them to accidentally hurt you.

The BIG Picture - Add your smiling face! People like to read pages by real people.

If you learned something about ACM or found this lens informative, please let me know. If you already know about ACM and have suggestions for improving this lens, please let me know that, too!

Thanks for stopping by! - Please share your thoughts

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    • kristensup profile image

      kristensup 8 years ago

      Interesting lens!

      I've never heard of this before.

      5*!

    • chefkeem profile image

      Achim Thiemermann 8 years ago from Austin, Texas

      A SquidAngel Blessing and thank you for sharing your story! :)

    • ElizabethJeanAl profile image

      ElizabethJeanAl 8 years ago

      Welcome to the Totally Awesome Lenses Group

      Lizzy

    • profile image

      anonymous 8 years ago

      I must give you credit, not only for a very informative and nicely laid out lens, but for the courage to not give up and not dwell on the bad things life continually throws at us. What an amazing story and I wish you all the best. - Kathy

    • profile image

      anonymous 8 years ago

      Ada gurl,

      This is not just a lens it is Hubble Telescope.

    • profile image

      melody1961 8 years ago

      this is my hero, my sister! I am amazed at how she copes with this disease and though her life goes on she is in the best of spirits. instead of getting depressed about it we laugh it off and just complain like the rest of the people in the world. This lady is smart,kind,giving and very smart! All I CAN SAY IS I LOVE YOU SISSY- life with out you is unthinkable! here's to you xoxoxoxo

    • profile image

      Joan4 8 years ago

      No one can describe an illness as well as one who suffers from it. You have done an amazing job explaining your condition. This lens is excellent, informative and helps us all to understand. Your courage, humor and positive attitude are an inspiration.

    • profile image

      Joan4 8 years ago

      No one can describe an illness as well as one who suffers from it. You have done an amazing job explaining your condition. This lens is excellent, informative and helps us all to understand. Your courage, humor and positive attitude are an inspiration.

    • SusanDeppner profile image

      Susan Deppner 8 years ago from Arkansas USA

      I've heard of ACM but didn't really know anything about it. Now I do, and about you. SquidAngel blessings to you for sharing your life with us, and with such a magnificent attitude. Excellent!

    • profile image

      anonymous 8 years ago

      Thanks for commenting on my blog and sharing a bit of your story on your blog. Keep in up ~ getting the public educated about chiari and related disorders is only half of this uphill battle. Keep in touch ~ lace

    • profile image

      Zion 8 years ago

      Wow! Your lens is fantastic! I really like it so I gave you 5*. Keep up the god work!..

      Please try to stop by my lens. I would really much appreciate if you could rate mine too!

      Thank you so much!

      Zion

      http://www.squidoo.com/legitimatehome-basedbusines...

    • ElizabethJeanAl profile image

      ElizabethJeanAl 8 years ago

      Merry Christmas from the Totally Awesome Lenses Group.

      Lizzy

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      tdove 8 years ago

      Thanks for joining G Rated Lense Factory!

    • profile image

      anonymous 7 years ago

      Great Article! My daughter was diagnosed and decompressed in January. I've learned so much in such a short time. I'm still learning.

    • profile image

      anonymous 7 years ago

      Has anyone experienced non-epileptic seizures, my daughter has been having what looks just like a seizure but she just finished a 23 hour study with muliple episodes but no abnormal EEG activity. Thanks--

    • profile image

      anonymous 7 years ago

      Hey gilrfriend!!

      Come on by and pick up an award, a 'Premio Dardos', that I have given you!!

      xoxoxo

      Shauna

    • RaintreeAnnie profile image

      RaintreeAnnie 7 years ago from UK

      Thank you for sharing your story and for an informative well written page. I am sure it will help many other people both who have ACM and those who don't but want to understand it. I know I learnt a lot today.

    • profile image

      anonymous 7 years ago

      join us at www.asap.org great site

    • profile image

      anonymous 7 years ago

      the key chain is no longer available

    • profile image

      anonymous 7 years ago

      could this be what they cal convulsive syncope?[in reply to peggy]

    • profile image

      anonymous 7 years ago

      i had chiari I surgery in 1999 it took three years to find out what was wrong with me i was told i had everything from a hemorrhage to post traumatic stress syndrome they were wrong so i now too bear the scar of a zipper head and have been recently told that i might have to have the surgery again because something is wrong so we will find out on monday after my mri results but i keep going because live as we know is fragile. good luck to you

    • profile image

      anonymous 7 years ago

      I love the way you use the sense of humor words!! big fan of trying to lighten the situation a little, but still getting the information across in a very informational way!! I have recently been diagnosed with ACM 1 also, and feel the frustration of doctors dismissing the seriousness of the symptoms, like saying it's just anxiety!! MY a**!!! hopefully I can get them to truly understand what the hell is going on with me before I wake up dead!

    • profile image

      anonymous 7 years ago

      well, once again, went to a doctor, not a neurologist today, to see what was going on that I keep waking up unable to breathe, and have a lump in my throat and it's hard to swallow. The Dr, LAUGHED AT ME--and said it's nothing serious, it's just anxiety!!!!!!!!!!!! I am so sick of this crap!! I even brought my test results from MAYO CLINIC to show her. She made copies, but didn't take me seriously anyway.I don't get it. Who the heck do these people think they are disrespecting their patients and their very serious concerns? My Mother almost died from the same thing!!!! She was in the hospital for a while damn near dead!! But this is funny to the Dr.????!!! Can anyone help with some good info, please?? (My mom doesn't have ACM, but she woke up not able to breathe) ARG!!!!

    • profile image

      anonymous 7 years ago

      Thank you for putting all this information together. I was diagnosed in September and hope to have surgery in December or January. Your site is very helpful to the newly diagnosed.

    • profile image

      candynich 7 years ago

      i was diagnosed with chiari 38 days ago, the reason being on the 18th 0ctober i had an almighty pain in my head which felt like a million volts going through my brain..which lasted more than 2 hours, it turned my eyes pure red, my heart felt like it was going to explode..i must have passed out with the pain. The next thing i knew i woke the next morning, but when i put my feet on the floor it felt like i was walking on marshmallows. The pain was gone. By tuesday i decided to go see my gp and told him about the episode, had a CT scan on the wednesday and diagnosed with ACM. I was told i would need a MRI scan which i had on the 6th November. I have to giggle at this letter that is sat in front of me which is from a Dr who discharged me from the hospital...i quote..."there was a chance finding of something that was probably a chiari malformation.This is something we find from time to time and is probably how you have been since you were born. THIS IS UNLIKELY TO BE RELATED TO THE HEADACHE. Iam not an expert on chiari of which there are a number of types.i will write to my colleagues in neurology to ask them to discuss this with you". i've suffered years with some of chiari's symptoms...headaches, daily, back and neck pain, dizzy, weakness in my arms, floaters and pain behind my left eye. i now have to wait for an appointment to see a neurologist for a true confirmation of ACM. on reading my notes at my Gp's it also said that my cerebellar tonsils were 11mm below the obision opithion line (don't think i've spelt it right). i'm a little confused at the moment...cos i'm not really sure if i have ACM or not.

    • profile image

      bobmatnyc 7 years ago

      One of our clients is a great group of neurosurgeons at Columbia University Medical center: http://www.columbianeurosurgery.org -- may be worth checking them out.

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      anonymous 7 years ago

      hi - just wanted to add my comment for anyone with newly diagnosed chiari. I have hydocephalus, syringomyelia, epilepsy and chiari of 6mm. have had surgery. not much at all improved. some things worsened or stayed the same.

      coordination, numbness, very bad chills(always ALWAYS cold), seizures(temporal lobe), leg weakness and mental impairment pretty much have stayed the same. headaches, leg pain, swallowing difficulties, joint/muscle pain and soreness, stabbing pain in head, sudden painful cramp in legs and hands, what feels like veins twisting in my legs with sudden very painful vein swelling and breaking/bruising along with the extreme fatigue, uncontrolled dry heaves have increased. I lost my liscense (for 5 years now), no longer work and lead a very quiet albeit full life. sometimes limited but happy for the most part.

      I have no idea why i have the vein/bruising problem. doc says it's chiari but honestly it seems like anything i mention gets shoved off to chiari. i do not NEED another problem with ANYmore health related issues however, I do want to at least mention things to my doctor so as not to be pushing everything off onto chiari. so please don't do that either. the vein problems along with bruising, also involves shortness of breath after standing or climbing a few stairs. How can this be related to chiari? I don't like to diagnose but come on! It doesn't fit.

      I have always been fit and active but once diagnosed, I started a very healthy exercise system and started on many kinds of vitamins. I am vegetarian and wanted to make sure I had ALL nutrients to keep up strength for exercise. I believe this has helped (or at least slowed progression) with coordination, mental clarity and maybe self esteem issues?

      all i am trying to say is, take care of yourself as much as YOU can. That way, you have more backing when it comes to having other things checked out with your doc and not everything gets brushed off as a symptom of chiari. Oh and don't ever stop laughing. It gives me a terrible TERRIBLE headache...but it's worth it!

    • profile image

      anonymous 7 years ago

      I just underwent decompression surgery on February 22, 2010. I'm 1 week post-op and getting better every day. I saw the post recommended the nuerologist and nuerosurgeons at the University of Missouri Columbia Hospital. I absolutely agree! After visists to other nuerologist who spent just 2 - 5 minutes making a diagnosis, which was not Chiari, I found Dr. Burger at the UMC Hospital. He spent over an hour with me and sent me to see the nuerosurgeon who did decompression surgery for an 8mm Chiari. After a year of degenerating symptoms, the doctors at UMC had me in surgery within a month. Already the tingling is gone, the headache I do have is from surgery, nothing like the Chiari headache. I feel very positive about my recovery and my advice is don't stop trying to find the right doctor.

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      anonymous 6 years ago

      when i was two my mother exhibited many of these symptoms, myfamily thought it due to overwork, she was a single mother and wanted her children to be educated. i know little of how her symptoms progressed. what i do know is that she went to the hospital, had brain surgery and went blind.... a short time later she died. this was in mexico around 1970. i learned of chiari through a facebook friend that i knew in school.

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      Indigo Janson 6 years ago from UK

      Without wishing to interrupt the useful discussion here, just wanted to let you know this lens has been Squidoo Angel blessed.

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      anonymous 6 years ago

      Hi - I just recently had decomp surgery in Utah. Found a magnificent neurosurgeon who writes on chiari malformations and the myriad of symptoms which go along with them. I find that I'm 8 weeks out and that rest and Physical Therapy have been enormously helpful. I think stressing the importance of demanding your surgeon write for a PT consult within 2-3 weeks of discharge from the hospital. Rehabing the upper body and neck muscles are really helpful even if they don't remedy every symptom, and it seems like from the blogs I'm reading, many decomp patients don't ever try or get recommended to PT. I'm glad I'm an RN and knew to ask, and that my surgeon is a proponent - I hope as chiari's are dealt with more and more, a more standard line of rehab care will come into play instead of each surgeon reinventing the wheel so to speak. Thank you for your info site and may you continue to educate those of us newly decomp'ed or diagnosed with a chiari

    • Caravansarai profile image
      Author

      Caravansarai 6 years ago

      @anonymous: Niki, finding a neurosurgeon who understands Chiari and all that Chiari patients have to deal with is a MUST, I agree! Like you, I had PT for the neck following surgery and found it quite helpful. I never knew that my neck was such an important part of my body until it had been cut open and stitched back together, LOL!

      I hope that your recovery continues to be positive and that it alleviates as many of your symptoms as possible!

      --*--Carleen--*--

    • profile image

      anonymous 6 years ago

      Wow! Thank you so much for your page! My 3 year old was diagnosed with chiari after his first birthday & also has epilepsy but no one here knows much about the chiari so it's pretty well ignored! I'll be taking a copy if this to his next neuro Appt! He also doesn't sleep - which no one believes so it's nice to know we're not alone. Thank you!

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      anonymous 5 years ago

      I have a Chiari Malformation with a syrinx. I had decompression surgery in 4/06 and am going to have it again on Tuesday. If you have symptoms look up the Chiari Institute. That is where I am having my surgery. They specialize in Chiari's. There are 8 procedures that should be done if you are having surgery, my first surgeon only did 3 so more problems have occurred. I now have scoliosis because of the pressure on my spine and it is now effecting my bladder. Make sure you are seeing a doctor that deals with chiari's.

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      anonymous 5 years ago

      What great insight and information. I was diagnosed in 2007 with ACM 1 at the age of 37 years old. I have a mild case. I also have my C5 and C6 discs that displace my spinal chord. My mom has scoliosis. I know that there is some connection with scoliosis and ACM. I have contacted other ACM sufferers and they have someone in their family with scoliosis. I have a 21 year old and a 13 year old. I wonder if they have it? After reading this, I am thinking of of having the neurologist look at them and see if they have it. Thanks again for this site!

    • profile image

      anonymous 5 years ago

      @anonymous: hi donna - this is tracy and i commented earlier as tajh. just wanted to reply to you and let you know that yes indeed scoliosis is tied to chiari. I was diagnosed with scoliosis when i was 13 and wore a cast and metal brace from my chin to my hips for 3 years.(never had any dates haha!).

      anyway, I have always looked for signs of scoliosis on both my daughter and my son. You can sometimes tell if you look at the line at the back of their jeans that goes along the middle of the bum. if it slants to one side..... I have actually noticed this on my daughter but she is now 29 and it's too late to intervene. they both know what i have so they also know what the symptoms would be if ever they developed symptoms for chiari. my great grandmother had a very crooked spine however, not sure if it was scoliosis. but to my knowledge no one else has it in my family.

      anyway, just my two cents.

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      anonymous 5 years ago

      hello im karen from liverpool england and was diagnosed with acm january 2011 and underwent treatment for hydrocephalous just 3 weeks ago. i enjoyed your lens as it was straightforward, to the point and didn't descend into self pity at any point. i must admit being diagnosed 'out of the blue' has come as a shock and researching the condition on the internet can be both a good and bad thing in equal measure. Your style is great and your symptoms very similar to mine.....did you have any problems with hydrocephalous and are you able to continue working without problems? karen

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      anonymous 5 years ago

      @anonymous: Hello Karen - I was diagnosed with Hydrocephalus at the age of 16. I was shunted and I returned to school. I thought everything was good and I felt normal. However, looking back I do know that some things that I experienced back then weren't really normal. I would get silver lines in my peripheral vision, I still remained unsteady when I walked etc. They were minor except the pressure headaches which would eventually be attributed to the chiari but I just thought it was normal, so life went on as usual until I was late 20's. That was when the epilepsy kicked in and then in my late 30s the chiari was diagnosed. However, you specifically asked about the Hydro so the answer would be "no I never had any real problems". I went on disability a few years back and I am 47 now but up until that time I raised a family and worked full time,(all while being a single parent!! yah for the singles parents!!!). But no all was good but it just slowly went downhill over quite a few years. The fact that I am no longer working doesn't have much to do with the Hydro, but of course it's effects are different for everyone.

      Yes the internet can be a blessing and a curse but I for one attributed it to very good success in my own recovery. knowledge is knowledge. If it doesn't apply or is out of date or unnecessarily scary, you'll figure it all out in the end. At least that has been my own experience!!! take care Karen for Liverpool!!

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      anonymous 5 years ago

      i'm due to have the opertion on monday

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      anonymous 5 years ago

      Surgery can be a last resort for those with the Chiari Malformation syndrome. But nonetheless, surgery in general can be frightening.

      I have had a DePuy Pinnacle hip implant in the past and by no means ever had a dilemma with it post-operatively. But what's bothering me now are the reported complaints from people who have been injured by the identical device. A lot of professionals foresee a possibility of a recall. I'll do more research about this on the DePuy Pinnacle Recall resource internet site.

      What are your thoughts on the possibilities for a recall?

    • profile image

      anonymous 5 years ago

      wow! I truly loved this & it made me giggle! It's the giggling I can handle as an ACM1 fighter...not so much those belly laughs!! I think the more stories we share, the more knowledge we spread! Thank you for brilliantly sharing yours! I will be joining the Zipperhead club myself on June 27, 2011 after 4 years of being misdiagnosed and being put off...and straight out lied to about the size of my herniation (8mm BTW!)...Ah, the Great Chiari Run-Around!

      Honestly, I'm not really nervous about the surgery or the recovery. I have led a life of headaches and dizziness & forgetfullness, weakness, ear ringing...blah blah blah for so long...that I'm most nervous about life after PFD. I'm used to my miserable normal, that I'm unsure of what my new normal will be like. Does that make sense?

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      anonymous 5 years ago

      I've been living with acm 1 symptoms for 7 yrs now and am terrified of the decompression surgery. So I try to be strong daily and it gets really hard sometimes. Is there any home remedies you can try for relief of all these horrific symptoms instead of taking all the sedating meds the doctors want you to take?? Thank you

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      anonymous 5 years ago

      I am a mother of a 1 year old that has swallowing problems, hearing problems, speech problems, balance problems, breathing problems, sleep problems, movement disorder and is legally blind. He had an abnormal EEG and after just having and MRI was found to have ACM 1 with 7mm tonsils. He cries often as if he is in pain. He has been having symptoms for many months and he seems to be getting worse Just found out about ACM today. Anyone know where i can find some additional info on symptomatic infants and their prognosis for relief of symptoms? thanks

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      anonymous 5 years ago

      Hi, after being dismissed from the docs and being treated for depression my husband finally had an MRI and was told in January 2011 that he had suffered a stroke, fortunatley other than being tired he seems to have made a full recovery. He has had various tests to find out why at 29 years old he suffered a stroke but to this day they still haven't found out. However on an MRI at a later date he was told that he had Chiari Malformation and also a syrinx, but told by his neurologist that she didn't have to see him again however should he start to developed any new symptoms i.e headaches, numbness etc that she needs to see him "straight away!" He does have headaches daily, numbness in his feet but at the end of the day, his work involves lifting extremely heavy equipment which going by internet research is a definite no no, but he has not been given any information by his neurologist, we are kinda left in limbo, what are typical daily aches and pains and what should he be concerned about. A lot of the symptoms of chiari malformation are the same as the symptoms when he had taken the stroke, so where these symptoms stroke related or CM? We have also noticed a bit of a lump at the back of his neck, is a syrinx visible? So many questions that we need answered and just feel as if we have been left to fend for ourselves!

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      anonymous 5 years ago

      I was Diagnosed with AMC in August 2010 and I will be going into Charing cross hospital to see a neuro surgion on 11th November 2011 to finally discuss Decompression surgery. After reading through your blog I almost feel like I have read my entire life story. For the last 20 years I have suffered the most hurendous headaches, dizzy spells, muscle weakness, depression, blured vision etc. I have been told over the years that this was down to Migranes and then 10 years ago I was told it was epilepsy after I started sufferering from seizures.

      I had numerous visits to the hospital for EEG's and CT scans of my brain to find out the cause of my seizures and it was last year when they discuvered that I had ACI. To FINALLY have a diagnosis after 20 years was a releaf in itself, but to know that I can also have treatment that can help with the symptoms makes me feel so much better. there have been times when my headaches have been so painful i feel as though my head it being squeezed so tight that my skull is being crushed from the inside and my eyes are on fire. swollowing becomes impossible. Once I have had my appointment in November I should have a better outlook on the future and know if and when I will be having the decompression surgery. Fingers crossed.

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      anonymous 5 years ago

      @anonymous: Appologies for my bad spelling in my last post. I wrote it after being awake for 37 hours as i was un able to sleep because of the headaches I had been suffering which is why I was online reading up on ACM Type 1.

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      anonymous 5 years ago

      Well i got my ACM diagnosis about an hour ago and me being me i had to research, and i must say thank you this page, it made me smile and laugh as strange as that sounds! It helps to know why some of the crazy things i experience happen and ive known all along there was something wrong with my brain!

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      anonymous 5 years ago

      Thank you for the valuable information. I will ask to be examined. I thought I had migriane headaches constantly. I also have sleep apnea. Hmmm?

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      anonymous 5 years ago

      Hi Guys. So I had my appointment yesterday and have been booked in for decompression surgery on the 5th December. I wan't expecting that result. I thought they would want to do more tests but they are confident with the current scans and symptoms that decompression surgery is the right thing to do and now is the time to do it.

      So I guess in just over 3 weeks time I will become a zipper head and hopefully on the road to a normalish pain free head!

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      anonymous 5 years ago

      I am now recovering after surgery which so far seams to be successful. I have had a few issues such as complete loss of balance and quite a lot of spinal fluid leaked throughout surgery.

      I was discharged from hospital just over a week ago but returned about 2 days later when my condition deteriated and my symptoms became worse and more painful than before surgery. I was sent for an emergency CT scan which shows what my brain has started to swell and was causing increased pressure inside my skull.

      I have started a high course of steroids to help reduce the swelling and I am currently pain free and hope to be home this weekend for Christmas with my family

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      anonymous 5 years ago

      Thanks! This is super helpful I am having my second decompression surgery next week. The first procedure just wasn't aggressive enough 7 years ago. My symptoms have gotten worse over the years and I am looking forward to getting better and moving forward.

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      anonymous 5 years ago

      This was amazing. You write very well. I have Chiari Malformation and Syringomyelia. I was diagnosed at 15 years old in 2003. I had decompression surgery the same year. I found your blog while googling and found this.

      .

      http://chiari-life.blogspot.com

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      anonymous 5 years ago

      You've done a lot of homework in a short amount of time. Great job.

      I've known about my CM for about 10 years? A long time.

      But my decompression wasn't until June 11, 06. This is a good source of info. while still being easy to read!

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      anonymous 5 years ago

      Great Website! Did you know that you can add JB Holmes to the celebrities with Chiari list?

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      anonymous 5 years ago

      Love you Carleen! Glad to learn so much about this disease. Wish we could see you soon :-)

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      anonymous 5 years ago

      Hey girlfriend!!! Whaaaatss Upppp

      I miss you, and wonder if you are writing anything that I don't have a link to, I always want to update my blogroll and make sure the people I adore and their thoughts are always available as a link on my blog. :)

      I have always loved your tenacity, drive, and understanding of life in pain. I think of you a lot Ms. Carleen.....

      Gentle Hugs-----<3

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      anonymous 5 years ago

      Thanks for the great read! I was diagnosed with Chiari zero/borderline, by Paolo Bolognese at the Chiari Institute in 2005. Finding that clinic was a Godsend, because until then many docs and MRIs missed this. My primary symptoms include horrible head pain that I feel rise up mid spine and land in my temples, chronic tinnitus, some palpitations with change in position or activity. From time to time I get back online to research symptoms...lately a new base of skull pain and severe vertigo. Maybe it is time to ask for some PRN pain pills? (Lol) anyway, reading about other's issues kind of serves to remind me that most of my *junk is probably Chiari related. And being hypothyroid likely exacerbates the fatigue and brain fog...(sigh)...thanks for the read!

      Ps..it is really not considered that rare any longer, with increasing MRIs, and there is a study by Dr. Thomas Milhorat that further explains that the size of herniation isn't hat matters, the question is, 'do the symptoms fit the diagnosis!' Best wishes.

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      anonymous 5 years ago

      Thank you for the information. I have been diagnosised with ACM1 and recommended to have decompression surgery with dura plasty and removal of partial of the c1. I am very nervous and afraid due to the doctor only saying the headaches may get better and nothing else. I know the recovery process is long but...if it outweighs me getting worse I guess I should not think to long. I had been sick since 2004 and they just diagnosied me in 2009 with ACM1. I have severe problems with it. My primary sent me to a neurologist in their clinic the other day and he said I did not have it being it was not more than 5mm and my symptoms were in my head! I can't express my thoughts but you could imagine. Do you have any other advice? Thanks so much

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      anonymous 5 years ago

      Get a copy of your MRI and report and get it to The Chiari Institute in Great Neck NY. They will get a questionnaire to you and hopefully you can get to see one of their docs. They do more decompression surgeries than anywhere else in the world. Don't let anybody else operate or tell you your symptoms don't matter. Finally, introduce your current doctor to Dr. Thomas Milhorat's study about how to diagnose Chiari 1 Malformation.

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      anonymous 5 years ago

      I was diagnosed with ACM I in 2009. I worked for a pain management physician and was able to look at the results of the MRI prior to my appointment with my family doctor. I cried when I read that there was a 11 mm herniation of the cerebral tonsils and brain stem. Growing up my mom suffered from dibilitating migraines and after years of tests was told that she had ACM I. She was not able to work because of her symptoms and could not have surgery due to severe complications with anesthesia. I have watched how ACM took the joy from my mothers life and I did not want that to happen to me. I immediately made an appointment with a neurosurgeon recommended by the physician I worked for. After the initial visit with Dr. Schmidt and a new MRI with CINE was completed we found that my brain was performing a "piston-like" motion each time my heart would beat, pushing the tonsils and brain stem 20 mm below the magnum foramen. Dr. Schmidt recommended decompression. I waited 10 months before having the surgery due to the amount of time I was told to take off of work, 8-10 weeks. I officially became a zipperhead on March 14, 2011, one year ago today. I was at the University of Utah Hospital for 5 days. At my 90 day follow-up I was told how great everything was doing (even though I was still battling nausea daily) and was released to full activity. I went wakeboarding, water skiing, everything I was not able to do prior to surgery. Two months ago I started feeling pressure in the base of the skull when I would stretch, yawn, sneeze and cough. Also, I was having headaches daily and migraines weekly. I made an appointment with Dr. Schmidt. I had another MRI and we found that the tonsils and brainstorm have dropped once again. I am currently treating my symptoms instead of having the surgery again. As all of you know the surgery is not cheap and I just happen to be a single mom to a curious 8 year Los little girl. Today brings me sadness and gratitude and a small amount of despiration. Sadness because my expectations were not met. Gratitude to my family and friends and despiration because I feel like I have to move forward with the surgery but cannot financially. Each day is a trial but I still want to have a normal, headache/ nausea free life. I appreciate hearing everyone else's stories and I home that mine will help someone else!!!

      Thank You

      Raelynn Jackson

      Salt Lake City

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      anonymous 5 years ago

      @anonymous: Hi Raelynn - I am also a U of U patient - Schmidt did my decomp in 2010 :) I had some issues with tonsilar herniation and cerebellar herniation both side to side and up and down. It was actually blocking the area of the brain where CSF is produced and put into play - I was experiencing some serious effects. Schmidt and his team (did you work with residents named Ramin or Chad?) did a fantastic job and I am happy to say I am highly functional, headache-free (mostly) and better than my old self now because of their expertise. It took a while to get there (about 16 mos after surgery) but it DID happen! I actually put in a word for them to Blue Cross (premera) because they were paying for patients to go to the Mayo clinic from Idaho, MT, etc. I gave a word to schmidt's team because he is really one of the experts in chiari's in the country. Yet he flies under the radar so much of the time. Anyway, it's great to 'meet' you and I wish you much success! Tell Dr. Schmidt NIcole Walden says Hi :D He'll remember me....

      email me if you ever want to chat - nicolejwalden@gmail.com!

      Take care, Nicole

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      anonymous 5 years ago

      @anonymous: Neurologist are mostly clueless about ACM's. So are radiologists ( and I say this as a NURSE!) - go find a good neurosurgeon. The ones I recommend are in Seattle (Dr. Elenbogen), Salt Lake City (Richard Schmidt), and there's a female in Baltimore that is amazing. Be wary of the so called 'Chiari' Institutes - they aren't as great as you think. And they usually cost a whole lot more money. You could get the same care in Seattle or Utah for a quarter of what you'll pay at an institute. Your fears will subside somewhat when you have a doctor you can trust taking care of you. And don't let your fear get the best of you! Get this taken care of...it'll be a tough journey initially - but after a year or so, you'll be damned glad you got it taken care of!

      Best of luck,

      Nicole Walden

      zipperhead alumni - September 20, 2010 - University of Utah Neurosciences Center and patient of Dr. Richard Schmidt

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      anonymous 5 years ago

      @anonymous: Neurologist are mostly clueless about ACM's. So are radiologists ( and I say this as a NURSE!) - go find a good neurosurgeon. The ones I recommend are in Seattle (Dr. Elenbogen), Salt Lake City (Richard Schmidt), and there's a female in Baltimore that is amazing. Be wary of the so called 'Chiari' Institutes - they aren't as great as you think. And they usually cost a whole lot more money. You could get the same care in Seattle or Utah for a quarter of what you'll pay at an institute. Your fears will subside somewhat when you have a doctor you can trust taking care of you. And don't let your fear get the best of you! Get this taken care of...it'll be a tough journey initially - but after a year or so, you'll be damned glad you got it taken care of!

      Best of luck,

      Nicole Walden

      zipperhead alumni - September 20, 2010 - University of Utah Neurosciences Center and patient of Dr. Richard Schmidt

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      anonymous 5 years ago

      My Neuro surgeon at USF says I would only have to have one surgery. They say if the surgery is done correctly the first time I would only have to have it once. I keep reading people having to have more than one. It is really scary. I am sorry you are having to have another one. I have three children and my 24 year old is very concerned she has seen my health deteriorate.

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      anonymous 4 years ago

      Thank you so very much Carleen, for letting me know that I am not alone. It's my left side that is affected and it has been 7 years of doctors telling me that my symptons were not related. I wasn't crazy when this started, but these doctors might get me there. Where did you have your surgery?

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      anonymous 4 years ago

      Thanks for all the info.I don't have a clue what ails me.I stumbled on your story while looking up my own symptoms.You have a great attitude and seem upbeat and funny.The more i read about other peoples pain i realize i don't have it so bad.Is that your picture in the graduating cap?If it is,that makes me even happier.Killa edger inshaAllah.Remain patient and await your reward.No one is without trials.Best of blessings to you and your family.

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      anonymous 4 years ago

      Well, to answer my own question, for me, the thyroid and chiari stuff are totally different. I started playing with my thyroid meds the past couple months, and finally feel like my hair is not falling out so much, my skin isn't as dry and the cold sensitivity isn't as bad. The brain fog never leaves though, nor the fatigue... :(

      There has been no change to the chronic head pains, palpitations, tinnitus, vertigo...etc. They hit out of nowhere and even after the acute pain subsides, I'm left with a dull intense ache at the back of my skull. Sometimes I have the dull head pain without the severe temple stabbing...after I feel it creep my spine. The more stress I'm under, the worse they get/frequency increases.

      At what point do most of you decide to have the surgery? Some days I feel good enough to do some stuff for myself, but it generally doesn't last the whole day. I don't like relying on people but sometimes it is the only way anything gets done I'm very scared due to having a young child, being a single parent; and can't risk becoming more incapacitated!!!

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      anonymous 4 years ago

      @anonymous: JGOLDSBURY - I decided to have surgery when the pain got so bad I couldn't work anymore.

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      anonymous 4 years ago

      Hi from the Uk

      My 13 year old daughter has just been diagnosed and i'm on my quest for as much knowledge as i can consume. This is what lead me to your page which i found both informative and uplifting.

      One question, all reports on the condition state sleep apnea, wheras my daughter could sleep 24/7. She came straight in from school today and went to bed, i couldn't even rouse her for dinner! In addition to that she's showing signs of depression.

      I'm so helpless as she seems to want to deal with this in her own time her own way. Any advice?

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      anonymous 4 years ago

      mumof3 - she could be so tired b/c of sleep apnea. it interrupts the sleep cycle & makes you feel like you've only slept "part" of the 8 hours you've been laying there. but not everyone w/CM has sleep apnea - i don't. good luck! (the rain & impending rain really do me in...i've come to hate the changes in weather!)

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      anonymous 4 years ago

      mumof3 - she could be so tired b/c of sleep apnea. it interrupts the sleep cycle & makes you feel like you've only slept "part" of the 8 hours you've been laying there. but not everyone w/CM has sleep apnea - i don't. good luck! (the rain & impending rain really do me in...i've come to hate the changes in weather!)

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      anonymous 4 years ago

      I never understood what was wrong with me and that depressed me for years. The headaches, tiredness, vertigo, neck pain, stiffness, muscle weakness, difficulty breathing and also constant nose bleeds (which is not so common with ACM patients). I was diagnosed last year and I'm having surgery in a few days. I must say though, I hate the thought of surgery. But I can no longer allow ACM stop me from enjoying life.

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      anonymous 4 years ago

      I am really impressed by this lens! Very clear explanation of issues is given and it is open to everyone. http://www.all-generic-drugs.com

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      anonymous 4 years ago

      Nicely set out - thank you. My Mom has just been diagnosed and I was searching the web, looking for info on this weird sounding name of a disorder. I am glad you could be helped...but also wonder how many times you were fobbed off with anti-depressants or placedbo's until some bright spark though to do an MRI.

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      anonymous 4 years ago

      @anonymous: I thought I was the only one to feel like a human barometer. Every time the weather changes - especially with rain I know I'm in for a long day or two!

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      anonymous 4 years ago

      Carri Hampshire england. My 4 yr old son Tye got diagnosed with ACM and syringomeilla last yr he had decompression surgery this yr as he got so ill he was losing his sight and was losing feeling in his arms and legs he would wake from sleeping screaming that his bones were on fire he even woke up several times screaming that he couldn't see . He was very weak dizziness cramps and body tremors the information was very easy to understand im very worried for my sons future as decompression hasn't stopped all his symptoms how he's learning to cope With Mr brain as we call it is Amazing . He tells me that mr brain is playing me up to day mummy I feel so helpless it breaks my heart to watch him in so much pain and discomfort .

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      anonymous 4 years ago

      Enjoyed your information and light humor! I was diagnosed with ACM I 7 years ago after a ski accident, yes, I should not have been skiing but really didn't know that at the time! I was 47 and told to go home and forget I have it, since I was born this way and didn't really have any problems! I can always remember hearing sort of a marching sound in my ears when I would lay down to go to sleep my nickname is Calamity Jane because I was always tripping or running into things and have experienced pains down my arms in my early adulthood. Vertigo is the current symptom. I have been fortunate to find a holistic Chiropractor who is very familiar with ACM. Have not had surgery and so far he seems to keep me in order! Thanks for sharing your experience & your info!

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      anonymous 4 years ago

      i really enjoyed reading this as i was recently told that i have arnold chiari malformatin and it has given me a better understanding of what is ging on in my head thanks a million!

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      anonymous 4 years ago

      I'm glad I read your article I was diagnosed nearly 10yrs ago and had surgery at first I felt a difference but slowly symptoms started to appear I wasn't given much info on my condition and still find it hard to cope sometimes feel no-one understands so I'm so grateful too you don't feel so alone anymore Thankyou

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      anonymous 4 years ago

      my little boy got diagnosed with this two years ago when he was 4 he is being monitored has to go back in aweek or so im a bit worried as he hasn't ad it checked since then and it was at 10mm last time he has hearing defects also school have noticed also have i it has affected his motor skills and always falls over nothin which i didn't realize was any of the symptoms x so thank u

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      anonymous 4 years ago

      A great article just glade there is more information about this now . spread the word! I had some symptoms since I was a child it had only gotten worse even homeschooled but going to various doctors and test done they just told my mother I was faking it till a chance visit getting a back mri he also did my head it wasn't in the papers to get head mri but he just did it cause I was there I now had 3 surgeries (2 because of complications shortly after first )it only helped a little but just knowing what causing this pain such a relief. Telling my story just to friends and family just even a handful more people knowing about it, helped someone else my mom told her nurse and one of there sisters had a lot of same symptoms she made her get a brain mri (she had several head mri's before but made doctor look for this one thing she also had it .I'm just glade people are telling there stories raising awareness of this

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      anonymous 4 years ago

      I was diagnosed with chiari 1 in August this year (2012) I have had ongoing issues for 5 years consultants gave up looking for the cause of my hugggge list of problems until I started to get pain and numbness in my arms and legs. I was sent for an MRI of my brain being told they though I had MS. When the results came back I was relieved it wasn't MS until I googled chiari 1 malformation. I'm 26 years old with a vast array of issues and two young children I see a surgeon next week and I know surgery is my only option especially now I can't eat my throat refuses to allow food downand if I force myself to swallow it my gag reflex forces it up it's so embarrassing especially in public but that's how it is. It's good to see and read other peoples stories. Finally figured out some of diagnosis today I was apparently born with underdeveloped T1/2 vertebrae and my spine curves the wrong way at the top hopefully that can be sorted while they are sorting my brain out. Wish u all well

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      anonymous 4 years ago

      I am fighting with the Government are saying my ACM is a mental illness I say it's a physical impairment not mental-help me

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      anonymous 4 years ago

      @anonymous: Hi hope all is well I was diagnosed in 2006 with CM 1 and syringomyelia, had a VP shunt put in late 2006, that didn't help so had decompression surgery in 2007 things are much better now then before.Still have numbness in the right side of my face and all of right arm all the way down to my fingers. Found a real good surgeon in NY nothing can be done with syringomyelia, just monitoring of its size and how I feel. I'm very lucky to be able to function pretty well, my body temperature is always up so I'm hot all the time,even in the winter i could walk around in a tee shirt. Lately I need little power naps during the day in order to be able to function properly I still work full time and carry Advils everywhere I go just in case a headache pops up... Good luck best wishes ..John.

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      iSophie 3 years ago

      This is great, it really helped me understand what chiari was. I found out last year that I had a mild form of chiari. I made a lens about my concussion journey, (that is how I found out I had chiari) and maybe out could read it!!

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      anonymous 3 years ago

      @anonymous: This is perhaps one of the worst things about an ACM, it seems odd that those in the government, or anywhere else, continue to use the A-C-M, the M obviously standing for the word, MALFORMATION, an individual, (typically either a person with NOTHING TO LESS THAN NOTHING, about medicine, anatomy, biology, even reading comprehension) will argue that this is a strictly mental, apposed to physical, biological, incurable, CONDITION THAT IS CAUSED BY A CONGENITAL MALFORMATION, IDIOTS!!! I notice that it infrequently is misidentified as a DISEASE, ALSO WRONG, it doesn't in any way make it worse OR better than either a disorder, mental or otherwise, or a disease, it is simply an unfortunate 'birth defect', even though is an almost POLITICALLY INCORRECT phrase, I sometimes find when, in the often exhaustive chore of explaining it to another person, it helps the other person (frequently a doctor) to understand it better. I have the Type II, I was diagnosed in 1997' (May 18, but who's keeping track), at the age of 26. I have learned so much about the ACM, had over 20, brain or spinal surgeries, & somedays feel like I don't know much more about it today than I did on the May 17, 2013, also referred to as my

      Last day as a free citizen!

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      anonymous 3 years ago

      @anonymous: BY THE WAY, JUST WONDERING, YOU DON'T HAPPEN TO BE FIGHTING OVER THIS DEFINITION WITH THE GOVERNMENT BECAUSE YOU ARE PETITIONING FOR SOCIAL SECURITY DEFINITION DO YOU? Not just being nosey, but I have been there & done that, DON'T GIVE UP & DON'T GIVE IN. I went all the way to the fourth appeal step, without a lawyer, & I finally won, if I can be of any help, you an reach me at monkins23@iCloud, or Facebook Page Go Away Arnold C. Beat of luck!

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      anonymous 3 years ago

      This is an amazing resource. The links & info makes me feel like im not alone. Thanx so much

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      lindsey p. 2 years ago

      I enjoyed this quirky read! I was diagnosed with ACM 2 4 years ago, it has progressed to an ACM 1 with acute syringo myelia present day. I am consulting for surgery this spring. I'm not only a zipper head, but will be a conquerer!

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      Renee Dittmer 8 months ago

      I actually found this by using google to find a picture of Chiari with Diagnosis for my Conquer Chiari Walk Fundraiser. I saw the picture above with definition with bleeding spot and hernination. I found interesting because I Had a Subarachnoid Brain Hemorrhage in Jan. of 2013 and months later after not healing but getting worse I received the diagnosis of ACM I. I had decompression Sept. 2013. It has been my life saver. Before I was losing my vision from the pressure, paralysis problems on the right side of my body which was also the same side affected by the Hemorrhage. Pain lots of pain. Now I get diagnosed with new problems every 3 months or so and my life is ruled by good days or bad days. I work part time, am a single parent, and am finally going back to school to finish my associates degree. My life is forever changed but I am alive! I just wonder if my hemorrhage actually caused my Chiari or was it always there like the doctors said questionly???

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