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Chiari Malformation & Headache

One of the uncommon causes of headache is called Chiari malformation. Also referred to as Arnold-Chiari, it’s a condition where brain tissue protrudes into the spinal canal. It happens when part of the skull is extra small or misshapen and presses on the brain, forcing it downward.

As with much of the scary stuff I write about, very few people’s headaches are caused by this malformation. So don’t panic! Chiari is detected by an MRI and headache is only one of the many possible symptoms.

Anna Roberts, a medical student in the UK, was recently diagnosed with and had surgery to correct her Chiari malformation. She describes having brain surgery while a medical student — a situation where she has enough information to be scared, but not enough to know what’s really happening.

Mayo Clinic has an easy-to-read explanation of Chiari, it’s symptoms and treatments. You can also learn more from NIH‘s Chiari fact sheet.

[via Kevin MD]

58 Responses to Chiari Malformation & Headache

  1. Angel says:

    An online friend and I developed our headaches about the same time. Her daughter had surgery for Chiari, and bingo–that’s what she had as well.

    But yeah, our headaches were totally different, and I took a peek at my MRI and it didn’t look anything like a Chiari patient.

    *********
    Did the surgery help her?

    Kerrie

  2. nancy says:

    I had the surgeory in October 2002. It was one of the best things I could have done. I was so sick with headaches that it took over my life, now I am alot better.

    ********
    That’s terrific news! Thanks for sharing your great story.

    Kerrie

  3. Beth says:

    Please help! I am suffering with the god-awful headaches, other then blowing my head off, what can I do to get some relief? I don’t have any insurance and the dr wants cash up front for office visits which are 350.00. Any advice that will give me any help will be appreciated.

  4. Beth says:

    If anyone knows how I can get some relief from the headacges please email me at ConcreteAngel959@sbcglobal.net. I have taken every kind of over the counter pain reliever and use ice packs on my head, neck,temple.eye socket, etc… and nothing really helps. Any advice or suggestions will be deeply appreciated. I’ve been doing alot of reading on Chiari and to be honest, I’m scared to death. Please, somebody help me. I dont have insurance of any kind. Also, I’m wondering if this Chiari qualifies me for disability? I live in Michigan, does anyone know where I can go for medical help? It hurts so bad now that I’d like to die just so the pain will stop.

  5. Kerrie says:

    Beth,

    I’ve responded to your questions in an e-mail. I think I’ll be able to give you some good suggestions for coping with your headaches.

    It may ease your mind to know that more than 95% of headaches aren’t caused by a life-threatening or dramatic problem — like an aneurysm, brain tumor or even Chiari. I know that it is still scary, but hope you can take some comfort in this statistic.

    Hang in there. We’ll be able to figure something out.

    Kerrie

    (To everyone else who is reading this, I will post the resources that I find so you may benefit from them, too.)

  6. Tom Reynolds says:

    My 17 year old daughter was diagnosed with chiari a few years ago, when her headaches get real bad she just goes to bed. No pain meds seem to help, neurotin, topimax, otc’s.
    AT WHAT POINT DO DOCTORS THINK SURGERY SHOULD BE DONE? She has mri’s to see if there has been any change’s. Something about cerebral tonsils i think. Thanks.

  7. Tharilyn says:

    I suffer with headaches, migraines and the rest of the fun fun fun … and until I was diagnosed with Chiari Malformation 1, I was scared. What was causing them? What was wrong with me? I understand how scary this disorder sounds but, honestly, I am so glad that I now know why my headaches come so frequently. At least now when a doctor tells me its all in my head I can laugh and say, “well yes Dr.Smartypants, it is all in my head!” What is most distressing to me is the stigma and dismissal that many of us get from the medical community. It happens more and more often that as we complain of pain, headaches or whatever, we are held up for intense scrutiny. The medical community , moreover society as a whole is so focused on addiction and routing those people searching for narcotics fraudulently that those of us with viable chronic pain conditions (diagnosed and undiagnosed) are lost in the shuffle… at least that has been my experience.
    For the record I was diagnosed with Fibromyalgia, Chiari’s (15mm herniation), migraines and BPD … lucky me!!! Weeeeeeeeeeeeeeeeeeeeeeeeeeee…. LOL!
    all my best,
    Tharilyn

  8. Dianna says:

    My daughter had Chiari decompression surgery in December 2007 and has now developed daily headaches of excruiating pain. She is also severly sensitive to lights. This developed after surgery. Any suggestions for relief. Pain meds are not helping.

  9. Megan says:

    I have a chiari malformation where my brain stem terminates 11 mm below where it should (My cerebrellar tonsils are longer than they should) my neuro said that I shouldn’t worry too much until I start getting light headed and dizzy. This was about 4 years ago.

    Guess what’s started happening EVERY day now? I’m getting lighteaded and dizzy.

    I’m so scared, and I get migraines EVERY day. Thankfully I’ll be getting insurance in 90 days, so hopefully I can have something done!

  10. loretta says:

    I was diagnosed with Chiari 1 in 1993. I had the decompression surgry in 1999. I still suffer with headaches, neck & shoulder pain. I’m 50 yrs old. I take meds for the headaches at night & just lay down when I feel real bad. I don’t have any health insurance. I just trust God day by day. You can get on disability for this disorder. ASAP can help you w/information concerning chiari at:903-236-7079 or info@ASAP.org

  11. helen connor says:

    I have just found out today that I have a Chiari 1 Malformation 15mm. I have suffered with chronic migraines since the age of 12 years (now 46) and after an injury 16 years ago I am now displaying most of CM1 symptoms – too many to mention. I have just read the messages above and to those of you who are looking for something to help relieve the headache symptoms: in January 2000 my husband read a report stating that MAGNESIUM supplements 300mg RDA can help. They certainly helped me. I still get the odd one but they are less intense and less frequent. Please try them and let me know how you get on! GOOD LUCK TO YOU ALL X

  12. lisa rinehart says:

    My 14 year old daughter has been having headaches, stiff neck shoulder pain, back pain and recently cold feet and hands, numbness in fingers, dizziness and/or vertigo, sensitive to light and sound. No pain meds for maigrains help. She passed out last summer and feel and hit a tree (whiplash) and is a cheerleader and tumbles. For the past month the headache is continual (like a vice on her head) She has vision spots (she calls them sparkles of light).
    Unable to go to school can’t concentrate on homework. I just happed to come across Chiara and am wondering if anyone out there has had some of these symptoms. We have been to family doctor, ER visits, eye doctor, allergist, sports therapy, chiroprators, neurologist (peadiatric). What does any one thing? Please respond. I just want my happy, fun and virant daughter back.

  13. Erin says:

    I was diagnosed with a Chiari malformation just over 2 years ago. It explained a lot. I had been having dizziness and fainting spells for over 10 years (starting at 12) and numbness for 3-4 years. I am starting to have headaches with increasing frequency, but I am not scared. It is not that I do not understand what this might mean (there are 4 Drs. in my family); I am just not scared. I am really more annoyed. Perhaps the fear will set in later, and perhaps this is my way of not falling apart. Right now, I am refusing to let this take my power and my ability to be happy. If I have to have the surgery it will be ok, or it won’t be. Worrying and being afraid will not change the outcome.

  14. burks says:

    I have just been diagnosed with Chiari I Malformation 11mm. I was referred to a Neurologist but she stated “none of this has to do with the disease in her opinion”. So she had me try all these different types of meds to prevent migraines and stop me from being nausea but nothing has helped as of yet. I have a headache almost everyday with ear pain and my right hand goes numb. I find it really hard to function and just do simple daily activities.

  15. Mitzi says:

    I was just diagnosed with Chiari type I of 7mm. I’ve been miserable for as long as I can remember and am just glad that there is actually an answer. I think if I heard the word, “idiopathic” one more time I would’ve blown up on the spot! I’m not scared but very much annoyed. I’ve had to be stern with my neuro. to not prescribe more meds that do not work but to get the ball rolling and get me in for a neurosurgeon consult. I want my life back! I’m 25y.o. & cant enjoy anything! Wish me luck!

  16. Ryan says:

    I’m 27 years old and just got my MRI results back to confirm Chiari Malformation. They didn’t tell me what the mm herniation was, and I forgot to ask. Because of the Chiari, I have double vision (only when playing sports), Downbeat nystagmus (eyes jerk downward, but not noticeable unless under magnification), sever headaches (but only last about 10 seconds) and happen once or twice per day, sometimes less and sometimes more. Usually caused by strain due to sneezing/coughing, etc. I also have a slight balance problem, but very acute. I also think I have sleep apnea, but not sure if it’s caused by the Chiari, or my deviated septum (both are common causes of SAS) I’m scheduled to see a neurologist in a couple days, and am trying to avoid the decompression surgery. I’ve read some blogs about people who have had this surgery, and it’s made things worse. If anyone has any information about this, please email me at sundevil211@hotmail.com I greatly appreciate it!

    Ryan

  17. calvin says:

    in the beggining light and sound were very aggrevating to me as well i was also forgetful ,i have had both the Chiari malformation an the syrix surgery in 2001,there is still days that the headachs will burn more than just hurt. alot of this pain comes from not staying hydrated. the long term effects that im exsperiancing is the lost of muscle and strenght in both arms. the only medicine that seems to work is advil.
    this was the worst pain i have ever exsperianced in my life. but it is still better than being paralized which can also happen if your not careful.i hope i can help some one , i know my comments sound scary but im just being truthful, good luck God Bless you all

  18. Julie says:

    I was diagnosed with migraines that worsened dramatically. I had an MRI and was diagnosed with a Chiari I, but that was it. The dr never said or did anything about it. Now I take daily anti-seizure drugs that help with the day to day migraines, stopped eating wheat (which helped a lot), and gave up any sports involving running (which caused migraines that were unresponsive to any medicine). Maybe I should get a second opinion about this Chiari diagnosis….

  19. Murdoc says:

    My fiance was diagnosed with chiari malformation 5mm.She’s been having headaches or should i say headache.she say it never stops.Just non-stop pain & pressure.I feel so helpless when we’re in bed and she’s crying from the pain.And i know it must really hurt.cause she’s good with pain.She has been through so much.At 15 she was diagnosed with thyroid cancer,had surgery on her neck to remove it.In 2003 her car was hit by a drunk driver,she broke her back in that accident.In 2007 the cancer came back.And now this,and she’s only 26.We have a 6yr old son who is autistic and was diagnosed with adhd & pdd-nos.So you know he’s very energetic and full of life.I’ve been looking online to see if there was something that would ease the pain and pressure a little.Does anyone know of anything that might help.If so can you e-mail it to me at. murdoc_515@hotmail.com

  20. Dawn says:

    Last year I had an accute loss of vision/double vision with severe pain at the base of my skull. I felt alot of pressure in my ears. I went to an eye dr who sent me to an retina dr who sent me to an neuro optomolygist. None had any answers .I had 2 mri’s.Eventually I found myself at a neurologist who saw on my Mri a Chiari malformation he wasn’t that concerned.He ordered a sleep study.only found that I snore alot. I constantly have a stiff neck and have had neck and shoulder pain since I was a small child.The double vision has subsided.Is this condition something that comes and goes? I am convinced that Chiari is the root of all my symptoms.I also have spinal stenosis and my spine curves in an opposite direction then normal.I have burning in my hands and arms,shins also tend to have very cold hands and feet.Any suggestions? I know I am not crazy !

  21. Jess says:

    I am a chiari patient. I had my surgery in Dec. 2003. I lived with the migraine for almost a year and it took over my life. The surgery cured all the major symptoms i had (complete lack of balance, slurring my speach, ringing in the ears, “white-outs” when i stood up) but i still get the migraines. My Dr. has me on Propanolol for a daily medication and it worked great for a while to keep them at bay. Anymore though, I’m getting migraines llike 4 times a month and i dont know what to do. He wont give me any regular pain killers (I would like percocet just to not care about the pain) but he insists on neuro pills to stop it from happening. any suggestions??

  22. Jess says:

    btw. I was 16 when i had my surgery and it went PERFECTLY. they told me it would be 5 months to recover and i had to do physical therapy to learn to walk again. However 2.5 months after the surgery i was playing softball. 2 days after the surgery i could stand up again. My neurosurgeon was Dr. Lechner. she WAS a Metro Health in Cleveland. However my mom (yeah she had the surgery too, its completely genetic) said she’s moved hospitals. But if you need a good one, i suggest finding her. She told me i was the “poster child” for the decompression surgery. And for anyone afraid of the surgery…it was described as “more painful than childbirth”. And yes, you’re going to be in a lot of pain for a few weeks, they cut through all your neck muscles. But they sent me home with percocet and flexeril for the pains and muscle aches. For women, you will probably start your period when you are in the hospital or shortly after. Your hips will hurt from laying face down on the table for so long. DO NOT FOR ANY REASON let them rip the bandages off the back of your head. FORCE THEM to use the anti adheasive pads that they have. if they rip it off (like some stupid assistant did to me) you will be in the hospital for a few more hours because of the INTENSE muscle spasms it will give you. If the internal stitches start popping out of your scar do not panic. its really ok. they just pull them out with tweezers and it feels funny. OOOHHH if you get a HUGE lump on the back of your head that looks like its half the size of a baseball its spinal fluid pulling. dont worry unless it starts leaking…thats an issue. Yes, they do use a bovine patch to increase surface area, so you will now and forever be “bull headed”. OOHHH and regular Drs. and ER drs are full of crap. NO, you have never heard of chiari before, stop lying. I KNOW you just went out there and looked it up online so that you could recite everything back to me that i already knew. So be prepared with some knowledge that they might not know if you want them to shut it and help you. if your migraines are absolutly horribly my family dr used to have me into the office and give me a darvacet and a shot of demerol at the same time (couldnt make it to the car afterwards cuz i was so tired). For all you chiari patients who are expecting, this is genetic as i said before. we didnt know when i was a baby but horrible collic is a symptom of chiari. i busted blood vessels in my face and my ear when i was an infant from screaming so hard. I’ve read a bunch of posts here from mothers who have daughters with this condition and wonder if they should have the surgery done. I say YES. like i said i was 16 when i had it done. The schools will dismiss you, they have to send them a tutor, and they will be more than happy to work with you and your child when it comes time to go back into school. I missed 3 months of school by the time it was all over and still graduated with a 3.8. and try to get them into the pediatric ICU when they come out of surgery, they are wonderful with kids there and parents can stay with the kids 24/7, not to mention they usually have a parent room with bunk beds.

    Im so sorry this was so long but a lot of people on here seemed scared and not sure what to do. I figured i would tell you what to expect if you decide to go through with it. if you have any other questions i am on AIM. my name is JMillX45. thanks for listenin

  23. JENNY says:

    I am so frustrated. My regular GP will write my script for diamox, but refuses to write for anything else. She’s insisting that I see a Neaurologist, which I can’ affort since I have no insureance and haubby and I only work part time. Does anyone have any suggestions about pain frelife thats either natural or orver the counter? I”ve tried exedrine, tylenol, and advil.

  24. Sheree says:

    I have a 17 year old daughter that was a varsity cheerleader and was kicked in the head while performing a cheer stunt and her flyer kicked her in the side of the head. Since that time she has had instances of passing out, severed daily headache, neck pain, and pain going down her arm. I’ve taken her to neurologists, ear nose & throat, optometrist, pain doctor, and neurosurgeon. She’s tried approximately 25 different medications and nothing helps with her daily pain. She has also undergone temporal nerve injections, cervical injections, and stellate ganglion injections that also didn’t help. Because of the level of daily pain she is in and because of the ongoing doctors appointments we have had to home school her the last year. She recently had a MRI of her brain and they found she has a Chiari I Malformation with stenosis as the foramen magnum. She is in the process of being scheduled for a brain decompression and we are praying that this is the answer that will solve her pain issue.

  25. Flowers says:

    I was diagnosed with Chiari in 2005 and in 2006 I had surgery. For the first yr things were great I was able to be with my husband and kids. In 2008 I started having alot of fluid build up, spinal taps became my friend again. Now I am suffering from the dizziness and migraine daily. I dont know what to do. I am looking for a neurologist but I am not sure where to look who is good. I live in Arlington Tx please help if you know of any. I really cant take living like this again, no medication is working.

  26. Scarlet says:

    My 14 year old daughter was experiencing episodes of severe headaches, back pain and neck pain as well as neurological problems like gait ataxia and near-fainting spells. The episodes happened every 3-6 mo and lasted 1-2 weeks at a time. She finally had an MRI of her brain done after being referred to an amazing neurosurgeon at a Children’s Hospital in California. The MRI showed a Chiari Malformation (16mm herniation I believe) & surgery was recommended. I really thought the surgery was a blessing that would help return her to normal. Boy was I wrong!!!

    She had the Chiari Decompression w dural graft in 2/09. She recovered ok and was doing well for about 7 months then she developed symptoms of acquired hydrocephalus (apparently a result of her Chiari Malformation and/or the surgery done to correct it). She required a L/P Shunt in 9/09 which healed poorly and required a blood patch (lumbar puncture is done then your own blood is injected into the site) to repair the CSF leakage coming from the lumbar spine surgical site. It was excruciatingly painful. She has had 4 subsequent shunt valve revisions, with the last being in 1/10. She will need another surgery in the next month or so and will be having a shunt tap as well (think amnio for those of you who have been pregnant). She now has severe chronic daily headaches (8/10 pain level) that can’t be relieved by OTC pain meds, migraine meds or even large doses of Narcotics (we’ve tried Oxycodone, Fentynal, Morphine, Vicodin, Demerol). Maybe she is just a very rare case of things gone very wrong, but I would gladly trade what she is like now for the was she was before surgery. Please do the research before deciding to have the decompression surgery and prepare yourself for the possibility of a less than wonderful outcome. The surgical correction of 1 problem can leave you with all sorts of other, unexpected issues. From one parent to another…

  27. VJ says:

    I had Chiari decompression surgery when I was 46 years old after suffering severe headaches for over a year. The malformation was between 9-11mm and the surgery was “normal”. Within a week of the surgery, I had a spinal tube placed for in for 8 days due to spinal fluid buildup. From that time, the headaches have gotten progressively worse, I’m often extremely tired, and the doctor has wanted a second surgery to “see what might be wrong”. I have refused, yet going to Cleveland Clinic and UK has not yielded new information. I’m very frustrated and tired of the on-going pain and fatigue. I can sympathize with Scarlet and her daughter, but hope she finds someone who can help her soon.

  28. barbara says:

    jess, my friend just had surgery on may 12th, a week later she needed another surgery to correct a leak, it has been 4 days and she is a mess,suffering with really bad headaches, did this happen to you?

  29. Suzie Whornham says:

    I have many of the same symptoms your daughter has and in reading the numerous stories above I was original diagnosed with many of the other problems as well, fibromyalsia, polymyalgia rheumatica, tension headaches, migraines, etc. – even a “nutcase” until an MRI showed a 21 mm Chiari. I am still trying to be a single mom with 2 kids and work a full time job. Daily headaches and very little sleep is making my daily routine very difficult. I am seeking the advise of a second neurosurgeon and appreicate all the comments – good and bad in helping me make my decision.

    I would like to know if anyone has had any difficulty walking? My legs stiffen up to the point that I have trouble getting them to move and have severe pain in my hips/buttocks. They tested for multiple sclerosis but they said that the MRI came back as negative.

    It has left me unable to walk any distances or use stairs and now have a disabled permit for my car. I am wondering if this is an unusual symptom of the Chiari that anyone has heard of?

    Thank You!

  30. mary w. says:

    If anyone can help me, I need answers. I had Chiari Decompression & arachnoid microsurgery in L.A. March 2010 and am starting to fall again and have head pressure and headaches again. Neck muscles haven’t really recovered yet. Do these things get better over time, or is this the best I can expect?? I also heard that roller coasters are out now, that I shouldn’t dive more than 9 feet down, and that flying, skydiving, etc… are all on the “out” list also. True? What else do I need to know? Where is there a concise resource for planning the rest of life? Should I be wearing a helmet?

  31. Mindy B. says:

    I had the decompression surgery on June 21. I had a 20mm herniation. When the surgeon got into surgery he found that part of my brain had been so compressed it had died and needed to be removed. I am glad for that reason I had the surgery! However since that time, I got spinal meningitis and had to have a blood patch from the spinal tap. My cerebellum is dropping some again and they think it might have been from the leak. I am experiencing lots of spinal pain and still lots of headaches. Has anyone else had the same kind of pain in your spine?

  32. Tina says:

    I have suffered with chronic headaches and migraines for as long as I can remember (I’m now 42). Also the spinal pain started in my early teens..parents even took me to a chiropractor to see if that would help. In my mid 20s I started complaining of right side extremities numbness and tingling also and was basically sent to physical therapy which ended up causing me to hurt more and in places I hadn’t hurt before. I have had 6 kids and gained a lot of weight with each so of course the prejudice doctors just look at you and say ‘if you lost weight you will feel better’. Ugh! In my early 30s I went to a new PCP and explaines my life long romance with headaches and migraines and also the pain and numbness and inability to even get out of bed sometimes without rolling out and crawling…he just wanted to throw more meds at me and as for the pain and numbness, without even examing me or running tests suggested I probably had an impengement and handed me a sheet with exercises to do and of course, suggested I lose weight…I’ve been 240lbs at my worst. I did lose 60lbs and tried to exercise but I was in tears constantly from the pain. Early 2009 I saw a new doc…same story..hears migraines and just throws meds at me..Earlier 2010..she did listen a bit more and also diagnosed my depression and fibromyalgia and started me on meds for that..still wasn’t helping with the pain…migraines, neck and back and shoulder burning pain, muscle weakness and coldness in my right extremities, numbness and tingling..inability to walk or sit or stand for any length of time…all this progressively got worse…I switched to a new doctor…this time I insisted she listen..she started running tests to eliminate or confirm diagnosis and worked with trying to find the meds that would help give me some relief. Had an xray, CT scand then MRI of my cervical spine, and xray of my T-spine (showed paraspinal spasms and a loss of lordadic curvature) but nothing to really explain the excruciating pain. Scheduled me for the Pain clinic but appts are months out, referred me to a Rheumatologist, then after a head MRI indicated possible demyelinating disease (MS) I was referred to a Neurologist. He reviewed the MRI and couldn’t confirm MS but said I had lesions but they may also be from my migraines…then he saw something the Radiologist did not report…Chiari malformation…didn’t explain to me what it was or meant, just said he was referring me to a neuro-surgeon…had to wait a week to see the surgeon…imagine all the things running thru your mind when you are told to see a BRAIN SURGEON! Anyway, I go in, he confirms the diagnosis but says I have to come back for another MRI (flow study) to see if surgery is an option…they schedule it another 4 weeks out…I go Oct 8th…so now I’m reading everything I can about Chiari and trying to decide if I try to live with this pain for the rest of my life or take the chance on the surgery if they give it as an option. I am a single parent with my 3 youngest (8,10 and 17) still at home. I haven’t worked in 5 mos cause the symptoms have been getting worse and the meds I take really knock me out so now I’m on the verge of losing my home and having my utilities shut off (my ex hasn’t paid any support in 4 years)…I’ve filed for disability but that’s a long process…what’s a person supposed to do? At least reading everyone elses posts I know I’m not crazy and others have the same issues…I’m not alone :) …can email me: tina.wsb@gmail.com…thanks and God Bless

  33. Bethany says:

    Hi I was diagnosed with Chiari 1 about 3 years ago but I didn’t have any symptoms. I now have these horrible headaches, but in the back of my head and neck. The only medicine that works, makes me fall asleep. Does anyone else have these kids of pains? And what kinds of things helped you with the pain.
    My MRI shows 5mm for cerebellum tonsils, syringomyelia, and also basilar invagination. Does anyone else have basilar invagination or know how to help the headhaches?

  34. Vickie says:

    June 13 2007 I had my surgery. Having the surgery made a great difference in my headaches. WHich I am so very thankful for, However I can still have some terrible headaches. They are not everyday like before but I can get them and they can last for a few days. Then I have a day to recoupe from the headaches. I have yet to find any meds that will help with these headaches. If anyone has had anything that works for them please send me the name so I can shcek it out.

  35. Vanes says:

    Thank you for all the information and may GOD bless you all for helping others.

  36. Vanes says:

    I was hospitalized on Feb 06, 2011 Like at 1 a.m this huge headache woke me up, the pain started from the back of my head and radiated to the front, all my left side was paralyzed also blurry vision with my left eye. My MRI showed I have Chiari 1. I have more than 35 diff symptoms. I am currently going to therapy at The Balance Center here in Nevada. I am also going to Accelerated Rehab & Pain Center. I get shots for the pain & vitamins. It helps for about 2 days and my pain eases a little, then all the pain return. I am also going to see a Neurosurgeon, but quite frankly I am very scared. I pray for all of us walking on this journey, and for our families.

  37. Wow, these stories are enough to scare anyone out of surgery, which I am scheduled for in one week. My headaches are not that frequent and I have no complications beyond Chiari 1 Malformation. My main symptoms are lightheadedness, excesssive saliva, bilateral numbness and tingling, etc..

  38. Cathy says:

    Wow! I just came across this site and feel so bad for all who have suffered. I too have Chiari Malformation Type 1. There is help available. Please refer to WACMA.com. My symptoms hit in 2005 and I was misdiagnosed for 18 months which is typical. Bitabutol works wonders for my headaches which are now few and far between. Hugs to all.

  39. Aleshia says:

    Hi my name is Aleshia. Im 32 and live in New Mexico(yes its in the US).I had surgery for Malformation I in May of 2010. Its now June 2011 and was told that within a year my symptoms should have deceased. But that is not the story. They have only gotten worse and now I do not have insurance and i applied for disablility in Oct 2010. I was denied and now denied again after an appeal. What are my chances of getting Disablilty and where can I possibly get insurance to help me to get the surgery again? Is there a certain Chiari surgeon you recommend? Because I have seen a few online. The pain is really unbearable now. I need help asap. It really sucks trying to get help when you cant even stand to be on the phone or to look at a computer screen. Please help?!?

    **********
    Aleshia,

    I don’t know much about Chiari, but I think the Migrainepage forum would be very useful for you. When you go to the site, search for Chiari and you’ll find some helpful posts. I also suggest contacting the user named Anna’s Mom — she is very knowledgeable on the subject. http://migrainepage.forumotion.net/

    I wish you all the best.

    Kerrie

  40. Lisa says:

    has anyone had their surgery at UCLA ?

  41. Lisa says:

    chiari 1 malformation. You posted your upcoming surgery. Where r u having it done?, and keep us posted. We r praying for you.

  42. Torie says:

    I was diagnosed with type 1 chiari malformation with a 16mm herniation that wraps around my brain stem. I am 13 weeks pregnant and the headaches are getting worse- almost daily I have excruciating pain that leaves me unable to function. My neurologist will only give me lortabs for pain but that doesn’t even touch it. I have also been getting dizzy more and my arms go numb at times. I cant take this anymore!!!

  43. Melissa says:

    My name is Melissa.. i am 17 years old & i was diagnosed with chiari malformation type 1 in Dec. 2009. I recently had surgery in Dec 2010. the dr said it was caused from the pushing of giving birth to my son.(it is very rare and i didnt know this was possible) I had migranes before the surgery they have gotten worse since ive had the surgery to the point that they come everyday!! i have been taken out of school because of them every year since the 7th grade. I have no clue what to do for my migraines because i have been onn every medicine you can think of and nothing has helped. My doctors dont even know what they can do for me either. i dont want migraines to take over my life!!! any suggestions?? you can also contact me @ mad_14@sbcglobal.net if there is any suggestions i would love them!! thank you

  44. Christy says:

    I was diagnosed with a chiari I malformation in 2001. I have had headaches since I could remember age 12. I had a severe car accident at age 10, so I am unsure whether or not I was born with this or it was caused by that accident. ADVIL is the only thing that helps the headaches, and sometimes it just isn’t enough but headaches were my only symptom until 2004 when I woke up with the left side of my face paralyzed. It was bells palsy. Hospital gave me meds and told me to wait it out. They had no answers for me beyond that. Of course heavy narcotics do help headaches, but I can’t live on those. In 2008 my head was injured and everything went hay-wire after that. Chronic neck, back, left hip, left leg, left buttock pain persisted for 3 solid years. Numbness in the left leg, arm, and hand also. Eye twitching alternating from one side to the other. With each episode I get sent to a Dr. for that and make no progress b/c they’re are ignoring the obvious. I have told my Dr. about the Chiari and he sent me to a neurologist who hardly spoke English and mumbled something about a brain surgeon referral. I have yet to see that referral and that was 5 months ago. He’s convinced my headaches are migraines and gave me maxalt. I tried one, as he begged me to, and it seemed like it got worse at first, so I took advil and it lightened up. He was so interested in knowing if my headaches had any part of migraine in them. Why is this???? Does he want to prove or dodge the chiari I MRI findings? He seems like he’s in disbelief about the chiari. In fact when I first told him I had one, he asked if that was something I just guessed or how would I know that. I told him I had an MRI in 2001 and it revealed it. Still in disbelief he asked me for the proof of that, to bring the report in and so I did. This all happened before I knew this Dr. No PT did not help except for my neck a little. Been passed around to over 20 Dr’s through HMO, told that the pain must be in my head from the injury. :/ Dead EVIL & DEAD Wrong. I’ve explained that the Dr’s are making me upset and depressed, otherwise I am very happy and try to remain positive no matter what we are going through in life. There’s no way I’d be able to hold a job more than 3 days a week. I tried a full day once as a groomer and I was in pain for two weeks following that long, arduous day of hell. I’ve tried everything from Eastern medicine to Western medicine approaches. I know that I need this surgery but my HMO is running me around from Dr. to Dr. and nothing gets done. It wasn’t until last year that I decided to research what “chiari I malformation” meant on one of my old brain MRI’s. Learning about this serious condition was like winning the lottery. It explains all of my symptoms. In 2008 insult was added to the chiari and that’s what set it off. I do have to say that after rehabilitating myself from the injury, my headaches have decreased but they are far from gone. They are also debilitating at times.
    I don’t have a measurement for my chiari but I am begging my HMO primary care to get me a brain MRI. I suppose if he keeps passing me around, I may go to the ER some day with one of these insane headaches that I get, and have them do it? My co pay is 100.00 so that’s not a problem. I have vomited from the headaches as well. I’m sure I have more symptoms but I currently have a headache and can’t think straight enough to type them all out. I just hope this info. helps someone else out there. And yes the newest virus of Dr’s telling patients that their PAIN is “all in your head” is sickening to say the least. It’s how your primary care Dr. gets out of paying for you to see the specialists. I don’t know if I’d rather have the surgery and risk being worse than this, but then again, I can’t imagine being worse. Everything that can go wrong has. Even frequent urination at night, pelvic pain, constipation, memory loss, dizziness, I’ve literally walked to the left at times, and into the walls. How much worse can it get?
    I’ve heard the the chiari inst. in NY and Wis. are good. Anyone else heard about them? Who has had great success with surgeries, can you tell us how you chose your Dr. and what to look out for?
    Thank you and I wish everyone the best of luck in dealing with this horrible condition.

  45. Sunshine09 says:

    I have been diagnosed with chiari malformation l! I have had the surgery an then started leaking spinal cord fluid an had to have a lumbar drain an that still didn’t work so I had to have a shunt put in an I still have migraineheadaches! I know that I still have some healing to do but never thought I would be in so much pain! I have 2boys an I can’t even do thing with them that I want to do bc of this! I am considering applying for disability! But I know that is a long process to! Do any one have any suggestions on what I can do for pain an disability! :(:(:(:(:(

  46. Matt says:

    I was first diagnosed with a Syrinx which is a fluid (CSF) filled cyst in the spinal column. Mine is small and is located in the Cervical spine. A Syrinx can be caused by a few things and one of them is a Chiari Malformation however; the neurosurgeon I first saw indicated that if I had a Chiari malformation at all, it was negligible. That was nearly 6 years ago. I’ve suffered for years from terrible chronic and debilitating headaches that no one can seem to explain. Different doctors try to tell me it is for different reasons and I do have many injuries and much wear and tear after 20 years in the military so it’s understandable. What I’ve come to believe is that the Syrinxe probably was caused by the Chiari malformation (just saw Nuero again last week) and that the headaches are from the same. I wasn’t sure because I have some degenerative discs in my C-Spine as well (C-3, C-4, and C-5) and I did get some relief from traction. This made me believe that, when applying the traction (lifting the weight of my head off my neck bones) if I received some relief, than it must be the discs after see the doc the other day I’ve formed a new theory.
    So, to the point and more specifically, for those looking for some temporary relief (hopefully) from their headaches. I believe that the type of traction I was placing myself in was actually allowing my brain to make space in the cervical canal that becomes blocked or partially blocked by a Chiari malformation. Can’t hurt to try and it’s free. I simply lay on a bed or a bench on my back with my head slightly over the edge, allowing the weight of my skull (average head is about 8 pounds) to provide some traction on the cervical spine. I lay in this position for about 5 minutes. Try not to hang upside down! Too much blood rushes to your head, this is not the intent. Just let your head rest like you are looking upside down at someone and if you feel some relief, take a break (getting up slowly so the blood doesn’t rush out of your head and you get dizzy and fall over) than later in the day, repeat.
    This isn’t the end all and I have much sympathy for all those out there suffering. I read all I can, when I can stand to get on the computer for any length of time. Hopefully this could help one person one time. Please don’t risk your health for this technique. If it hurts, don’t do it.

  47. Doug says:

    Just wondering if any body can suggest a medication that can help with the pain???

  48. Alicia says:

    Burk—Get a new Dr! Thats insane that your Dr would tell you its unrelated to your ACM! Mine was at 11mm and I had to have a sub-occiptal brain decompression (crainetomy)with removal of
    c-1 and duraplasty. Any Dr who says its not related to the ACM is not educated enough about the condition itself, in my opinion. Ive been dealing with it for 10 years so I can relate. I had the surgery in 2010 and it did help quite a bit. Pain returned a little bit but not too bad, and my numbness on the right side didnt return! I was rearended at a complete stop by a girl going 40 mph 2 months ago and my whole side started going numb again and I wanted to cry! Sure enough my malformation had dropped another 4-5 mm…The pain is unbearable. I go to my neuro in a few weeks but until then I decided to go to a chiropractor (even though Ive always been a skeptic) and it has been helping trmendously. I know its just a quick fix, but it helps until I can get in to see my Neuro.

  49. Amy U says:

    I have Chiari and it took 38 years of extreme pain to get the confirmation I was not a Psychiatric case. Needless to say I have had two decompression surgeries which help for a while and then the symptoms are back. It is a crappy life to live and I can’t stand the people who say things like “must be cool to have such a rare disorder” or “I wish I had what you have, it would be nice to have so many days off!” Why can’t people accept this is a true SERIOUS disorder???

  50. Torie says:

    My 5 yr old daughter and I were diagnosed a few months apart in 2011. We both suffer from agonizing headaches. We are being followed by 2 different neurosurgeons. Mine recently did a cine MRI which showed abscense of the 4th ventricle and marked impedance of CSF flow at the cysterna magna. I am scheduled for surgery next month and am pretty scared. I’ve dealt with the headaches for as long as I can remember but since the birth of my 3rd child 10 months ago my symptoms seem worse. My short term memory is HORRIBLE and I never use to have to even write lan appt down I always remembered. Now when they call to remind me I’ve already forgotten I had an appt! One day I was driving and all of a sudden it was like a switch went off- I was confused didn’t know where I was or where I was supposed to be going. I get aches and pains everywhere, I gag all the time to the point now I can’t eat without gagging or puking. Depression and anxiety with panic attacks plague me daily. It takes me awhile to start to urinate. I getting crushing pain on the top of my foot for no reason and goes away after a several hrs. I feel Luke my body is failing me. Oh and let’s not forget the heart palpitations and crushing chest pain. My herniation is 15mm with the tonsils wrapped around my brainstem and spinal cord. I pray my older daughter doesn’t suffer like I do although her herniation is 16mm no cine MRI yet. She also has cervical instability and something about the cysterna magna I believe being at an abnormal angle? My 13 yr son was spared and I pray my new daughter was as well. I’m glad I found this website, it’s nice to talk to people who understand bc most people think crazy!

  51. Erica says:

    I feel for everyone that is living with Chiari. I was diagnosed in 2009 with a 20mm herniation, but I have chosen not to have the surgery until I have a syrinx. I have been to a local neurosurgeon who was ready and willing to throw me on the operating table right then and there! I chose to go to a neurosurgeon at the Cleveland Clinic and get an expert opinion and proper tests. Because Chiari comes with so many symptoms, it’s difficult to make the decision to have surgery until it’s absolutely necessary. For pain relief, I take Vicodin, Celexa, Diazapam, Topamax and Sumatriptan. Flexeril also works great for the muscle tightness and pain a lot of us get in our shoulders and neck. Good luck and best wishes to all of you!

  52. Stephanie says:

    Hello. I was Diagnosed in 2008 and had surgery in 2009. First year was great but ever since i have really bad headaches and have to take alot of time off work. It is very hard to deal with while trying to keep my job. I have been to and from doctors because of it but they cannot understand why i still have the headaches and there is no reason i should be having them. I dont know what to do as at the moment i have had 2 headaches this week and still can shake the one i have now. I have had it for about 10 hors and no pain killers are working. I so dont know where to go from here as when i go to the doc i feel as thogh i making it u.
    Does anyone else have simular problems
    thanks stephanie

  53. THERESA says:

    My daughter was diagnosed with syrinx excuse spelling syromalegia she is 20 and now after the mri find the cause is chiara they need to opp but as yet we not on medical aid so this will only be done in a few months as a mother i need all the advise and understanding you that has been through this can give me pictures ect.I would so much appreciate your support thank you.

  54. Lynn says:

    I was diagnosed accidently last summer of having Chiari Malformation due to another situation going on. I am 56. I opted not to do anything about it & just live with it. I researched the diagnosis and have had many of the symptoms for years & never knew what was causing the headaches. I was told my headaches were due to a hormonal imbalance years ago. They gave me a prescription for 5 mg. Zomig. I use my pill cutter & make 4 pills out of it. When I get my headache. I take one of those, put ice on my head & neck and fall asleep for about an hour & it goes completely away. This small pill causes my pain to just relax, I start sneezing after about an hour, and my nose starts running and I am good to go again until the next headache. They come daily every once in awhile. I could go 6 mths with nothing and then I get them daily for a few days. Normally, I wake up to them in the morning. On a scale of 1 to 10…the pain is a 10, until the Zomig kicks in. Sometimes, I have to take 2 pieces. Zomig has been my life saver for me :)

  55. Hi I have had cranial decompression surgery, your stories are so similar to what I have suffered. Going from one doctor to another, it is very frustrating as you feel very let down by the doctors. As some doctors don’t know a lot about ACM1. After the decompression surgery I was in a lot of pain. I was sick a lot, so it was a terrible time. But I thought after the surgery that would be it, no more headaches. But I returned to work after seven mouths of being off recovering. I went back to work far to soon, as a result of that I went off sick months later. The bending forward, coughing, sneezing etc. I just knew there was something wrong, so I went for a second opinion the surgeon has been doing surgery for years, he deals with this condition. So he looked at my old scan which was sent from my other hospital where I had my surgery. The surgeon said, that he could see a crowded area in the back of my head where I had, had my previous surgery. So he sent me for an MRI scan, I went back to see him. He said, the CSF is getting restricted so this would mean more surgery. So I am on a waiting list for more surgery. I have done it once before so I think I can do this again. As the surgeon is experienced and this has gave me hope again as I have no life. As the headaches stop you doing a lot of things. I am positive that this is going to help me. To Teresa and anyone that has got to go through this with a family member or has to have the op. You will find the strength to go on and make sure you get an experienced surgeon I think this is the main thing to do. Talk about the options that you have, do you need surgery? Does the decompression need doing at this moment in time. A good surgeon will tell you what he thinks, also he will listen to you and see what your quality of life is like. I know that I couldn’t cope with the pain any longer and that I am at that stage again where I will do this op again, just so I can have a little bit of life back. I am 47 I have got 4 children that 2 of the eldest have got children. So I am a nanny and I love the 5 of them I am due another grandson in a few weeks. I cant wait. My daughter is 29 she has got ACM1 as well but the tonsils haven’t gone into her spinal canal yet. This may never happen, I hope it doesn’t, all I know is that I would rather have the op than any of my children. So if you are suffering I hope I have helped you as having the surgery you have to look at your life and see every day you are suffering headaches. Its not fun at all. Thank you for reading. from Michelle.

  56. wendy says:

    My 17 yr old son just diagnosed with chiara and is a keen sportsman can he till do sports

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