Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

0 Online
  • Jawhara

    New symptoms and scared

    Hi Everyone,My name is Jawhara and I'm a 32 year old from Dubai, UAE.  An orthopedic surgeon diagnosed with ACM a couple of years ago but a neurosurgeon disregarded my symptoms.  When I was first diagnosed, it was 7mm.  I had an MRI done around 3 weeks ago and it showed that the tonsils have descended to 1cm and it showed that there was some kind of fluid build up in the brain.I got the...
  • Sammie76b


    I have cm1 7mm  they say  is only mild  bit they don't have to put up with the neck pain sore throat  body temperature  playing up nerve  in arm check leg playing up now I have  to go on a tilting table 
  • Diane22

    New here

    I had some back pain in Oct which led to the DR which led to x ray showing arthritis which led to an MRI or thoriatic spine and a syrinx is there. The neurologist wants me to have an MRI or my brain and my entire back w and w out contrast to rule out any serious issues but I'm afraid.  The only real problem I have is a tingling sensation in my right shoulder blade area.  
  • Laurie40

    I was just diagnosed

    Hi.  I was diagnosed about 2 weeks ago with Chiari 1.  I work in helathcare and we are the absolute worst at ignoring symptoms.  I have had headaches and dizziness for years and self managed.In june I broke a rib (fell after being dizzy) and was taken out of work to heal. But as i was home, which should be a great vacation (especially during the summer), I started feeling terrible:  always...
  • deleted_user

    Chiari and disability

    Has anyone applied for disability and won or are they giving you the run around because they think its just headaches.
  • kris278

    Need Neurosurgeon in Northeast: 4mm Herniation

    I've been "sick" (as much as I hate to use that word) for the last 12 years. There's been one diagnosis after another, but they've all eventually been disproven and I'm just left with a host of debilitating symptoms that can't be explained. All of my specialists are agreement that there's definitely something physically wrong that's causing all of my symptoms, but they just haven't been able to...
  • lgb1072

    New Here

    Hello, I have a question. Is this anything to worry about?Low lying cerebellar tonsils (9 mm below the foramen magnum) but with apreserved rounded configuration most likely related to anatomic variancerather than suggestive Chiari I malformation.That is what the radiologist put on my mri results. My PCP says it's something I was born with but nothing to worry about. I have been diagnosed with...
  • Kmurphy0621


    Hello all!  I'm so excited to have found this group with recent posts too!  I just found out in early May by sheer accident and the grace of God that I have a chiari malformation with syrinx.  My symptoms probably started noticeably within the last several months, but symptoms have rapidly progressed since my initial MRI.  I just had two MRIS done yesterday ofor my cervical and thorastic...
  • deleted_user

    Syrinx and Paralysis

    I've heard that a person can become paralyzed if the syrinx is left untreated. I worry about it a lot. My ACM and syrinx were found 5 years ago by MRI after suffering several unexplainable falls (drop attacks). That is the only MRI I've had since. The neurosurgeon I had was against decompression surgery for my 5mm herniation as he did not think the ACM was causing the falls. He said that drop...
  • Canadianchic


    Hi there my name is Elizabeth and I was diagnosed with boderline Chiari last year and I just have a question I hope someone can answer for me. In the last year I have also lost 50 pounds but i feel like I am not any stronger then I was before. In fact I have days my legs and arms don't work as great as other days while I am at boot camp. Is that normal and is there anything I can do to strengthen...
  • broderick4

    Has anyone had the surgery

    my husband was just diagnosed with CM with about 8-9mm of tonsil decention. We have an apt with a neuro surgeon in the next couple weeks. But I've been reading a lot about the recovery and finding that it's hard to find people with CM let alone that have had the surgery. If anyone here has had the surgery would you be willing to tell me how it went and how recovery was for you? I've been reading...
  • kris278

    Mayo Clinic: Yes or No for Chiari / EDS III / CCI?

    The Mayo Clinic is obviously world renowned, but I've heard many mixed reviews regarding their ability/willingness to diagnose and treat Chiari, Ehlers-Danos III - Hypermobility, and Craniocervical Instability (CCI). Some people say Mayo is great at evaluating these conditions and others say they're not. I've also heard some say that Rochester is good, but Jacksonville is not. Does anyone have...
  • deleted_user

    Chiari and air travel

    Is long air travel (about 9 hours) safe for chiari patients?Does the headache, neck pain, nausea become worse at a high altitude?
  • Tillie

    Don't lay/sleep on back

    I have chiari many years (8 mm on last MRI).  I stopped laying on my back(sitting in a lean-back seems to be OK) and my symptoms stopped. (except for the Tui na that I just had - assume this will go away and then no symptoms)
  • I am suffering from nausea for almost 24 hours now after having Tui na(I have Chiari 8 mm).  Tui na was done ONLY on my lower back, nowherenear my neck at all.  However, evidently the pushing on the spine affectedthe neck somehow.