Skip to content

Chiari Malformation

New discussion Join group Also known as Arnold-Chiari Malformation

All discussions in this group

  • crystal26235 1

    Help me!

    Hi, I am a 31 year old female just diagnosed with CM and I have severe headaches and off balance ringing in the ears etc but I decided not to go with the surgery because its a 50/50 chance and with my body it always acts up with surgeries so My Question is there anyone out there living with chiari Malformation...

    4 replies 0 votes Last reply
  • aman00351 2

    can I get some input ?? Is this chiari

    I'm desperate and severely depressed for answers as I've been suffering with these symptoms for over a year and doctors haven't been acknowledging them at all. I know Nobody on the internet can diagnose me but I would still like some input from people who are very familiar with chiari and the symptoms...

    4 replies 0 votes Last reply
  • mary39999 1

    Ideas for Care Package for Chiari Surgery

    My best friend has to do an emergency surgery for her Chiari in the next two weeks. Does anyone have any advice to offer support? I would also like to prepare a care package for her after her surgery. I would truly appreciate any advice on items that were beneficial before or after the surgery that would...

    8 replies 0 votes Last reply
  • hayleybell 3

    Chiari Decompression surgery

    Hello All...... I promised I would write again with an update after my surgery.... so, here I am! I had my Chiari Decompression Surgery 12 days ago now. Honestly, it was a hard choice to make, (I have 3 children & a wonderful husband too of course!) I suffered for more than 7 years after my first diagnosis,...

    11 replies 5 votes Last reply
  • yeltzer 3

    Recurrence of Chiari malformation

    I had decompression 6 years ago for a servere malformation. Recently I have been getting similar symptoms to those I had before my operation . Can a malformation grow again after decompression? I would not like to go through the operation again.

    169 replies 3 votes Last reply
  • clareb 2

    Can the headaches relapse and remit?

    Hi.  I am an active 50 year female with a long history of mildish lupus.  The last few years have given intermittent neurological problems with swollen eyes, drooping eyelid, mild weakness, respiratory weakness and a ghastly headache which fits all the chiari criteria.  All of these things can be blamed...

    1 reply 0 votes Last reply
  • andrewbaker1984 1

    Multiple surgerys for Chiari advice

    Hi all, My wonderful and much loved girlfriend is currently in hospital following her 2nd decompression surgery for chiari and associated syrinx's. She first had surgery 1 year ago and for the first few months it seemed successful. She had multiple syrinx's throughout her spine and the initial surgery...

    2 replies 0 votes Last reply
  • cokeguy223 2

    Anyone with Chiari suffer from constant fatigue?

    Hello I have had issues for many years now.  Headaches, dizzyness/vertigo, tinnitus, you name it.  The absolute worst thing I suffer from is chronic fatigue.  I am always tired, I cannot hold a job full-time because I will just pass out.  It doesn't matter how much or little I sleep, 8 hours or 13 hours...

    16 replies 2 votes Last reply
  • claire41358 1

    Anxious Girlfriend-Does he need to go to the ER

    Help bf has chiari malformation, syringiomyelia and a shunt. He has had a lot of pain more than normal lately but figured it was because he also hurt his back. He hasn't slept well past few days either. Earlier he flipped out on me and he was being so unreasonable and rigid and and the level of intensity...

    3 replies 0 votes Last reply
  • kathy90995 2

    I am 62 yrs an was just diagnosed with chiari malformation.

    I have been dealing with horrendous pain in my neck, shoulders and from my elbows down my arms into my hands. My neurologist is recommending removing a all piece of my skull where my spinal column passes through that opening to give more room. Has anyone else had this done. What does the 2 to 4 month...

    12 replies 0 votes Last reply
  • IrishG 2
  • Stable2309 2

    Newly diagnosed and about to see the NS

    Hi All.  Just found this site.  Its a big relief to find people who are sharing their experiences. My first diagnosis was anxiety in Feb, and was experiencing heavy headaches. My v. good GP sent me off for MRI which did come back as CM1 with 24mm herniation.  Primary issues are constant headaches from...

    3 replies 0 votes Last reply
  • madelyn53461 1

    Recent Diagnosis

    Hello, I was recently diagnosed with Chiari type 1 after a trip to the ER due to losing feeling on my right side for around 10 minutes, (I thought I had suffered a stroke). I meet with a NS tomorrow. I am a healthy 33 year old woman. I have had migraines for the past several years (the drs would give...

    2 replies 0 votes Last reply
  • Bellablueyess 2

    Newly diagnosed

    Ive been told I have chiari, low lying cerebullem. Nothing was properly explained to me nor was my mri. I was told my mri only showed having a headache. Has anyone else been in this type of situation? I've been currently suffering from a relentless migraine as nothing is working anymore and weird symptoms.

    10 replies 0 votes Last reply
  • enfrance 2
  • justin12345 2

    My 3yr old son post op severe headaches

    My 3yr old son just had the decompression surgery on 3/3 and has been having severe headaches all over his head (mostly in the front parts though) and sometimes earaches. We have him on ibuprofen and tylenol. We ended up going to the ER 2 days ago and they did an mri and said that it looks fine. His...

    4 replies 0 votes Last reply
  • vicky59618 3

    Pregablin or nortriptyline for chiari pain

    I have chiari malformation type 1 and have been really struggling with the occipital pain and pressure eye ear throat and facial pain also get neuralgia pain and sharp shooting pains I'm awaiting neurosurgeon opinion my neurologist has referred me after ruling out occipital neuralgia trigeminal neuralgia...

    12 replies 0 votes Last reply
  • brinn 2
  • shirley82247 2

    Good evening

    I have a 13 year old daughter who had surgery on her brain and spinal cord this past December. We had tryed so many med's and nothing seems to be working. Her knew med is gabapentin... how long dose it take to work...upset mom cuz I can't help her feel better...makes me sad...thanks

    12 replies 0 votes Last reply
  • AchtungCloud 1

    What questions should I ask neurosurgeon about my son's case?

    Hi,  My son is 5 years old and he has a Chiari Malformation. All we really know about it is that he acquired it when he was about 2 weeks of age. We have had him since he was 2. At ages 2, 3, and 4 we got yearly rapid MRIs and were told by the NP at the neurosurgeon's office that we will just continue...

    5 replies 0 votes Last reply
  • eben13480 1

    Chiari type 1 and mild seizures?

    My son (20) het decomppression surgery (tonsils 42mm) when he was aged 16. Of late he gets blackouts, behave differently, does not know where he is, etc. It is dangerous as he still acts rationally, bt , e.g. gets into his car and drives away and when he comes to, has now idea where he is or what has...

    1 reply 0 votes Last reply
  • claire60327 1

    hi all

    I have been having all the symptoms and all I want is for a doctor to listen to me and understand me. I have been like this for the past 3 years I've even moved city's so I can see a new doctor and still no luck. I can't Coughton without crying because of the pain in back of my head, I can laugh, pins...

    4 replies 0 votes Last reply
  • ashlee225 2
  • b2wc97455 5


    Hi there, I am chiarian and waiting for my surgery...I read this story..seems that majority of this members although they are having surgery but they still having symptom there any of you..that have symptom free at all or what you call it..SUCCESS STORY?? can you please share with us..or even...

    30 replies 0 votes Last reply
  • leneta68422 2
  • amberlenae 2
  • lisa29315 2
  • k8779 2
  • IrishG 2

    Helping my son

    Hi everyone. My son is 14 and been diagnosed with Arnold chiari malformation type 1 with syringomyelia (sryinx). Although he had previous symptoms ( I didn't know at the time were associated) it was found incidently via mri for bells palsy. He often loses control of his limbs, suffers headaches, something...

    4 replies 0 votes Last reply
  • lukergirl 2

    Since surgery.

    Since my last post, I have been through the ringer as most probably have. I finally got a NS specializing in chiari, I had to outsource with my personal ins.despite it being related to a work injury. I had so many symptoms before surgery in Jan 16. The surgery quickly esculated to 5 surgeries and...

    7 replies 0 votes Last reply
  • jayne15162 2

    Help is this normal Chairi Malformation symptoms???

    Hi everyone I'm new and I'm posting on this forum for the first time. I have recently been told that I have a hindbrain herniation from a Neurologist. To summarise my history I had a slipped disk diagnosis via MRI 2015 and have been tingle free for some time. I got married last year and had botox in...

    7 replies 0 votes Last reply
  • DFresh 2

    Can a lumbar puncture cause Chiari Type 1?

    I just got back the results from a brain MRI. "Low-lying cerebellar tonsils are noted with findings consistent with Chiari Type I malformation". The report also says: "Relative lack of cerebral spinal fluid at foramen magnum". A few months ago I endured a horrible lumbar puncture followed by a couple...

    4 replies 1 vote Last reply
  • madalyn 22940 2


    Today I went to my neurosurgeon and while I was at the office I had another MRI. He said that I would most likely benefit from the surgery. I have very brisk reflexes which is a concern for him and even my neurologist. The thought of having the surgery definitely creates even more anxiety for me but...

    2 replies 0 votes Last reply
  • Toby. 2
  • manctofu 2

    Specifics on possible types of surgery

    Hello everyone I'm new to this site, and found it after researching Chiari Type 1. I was diagnosed with it about 18 months ago, along with syringomyelia. My symptoms are mainly terrible migraines, nausea, neck pain (including a 'rice crispie' clicking noise when I shake my head), and, strangely (at...

    26 replies 0 votes Last reply
Back to top Next

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.