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.

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  • 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...
  • 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...
  • 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...
  • 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.
  • aims

    Vp Shunt

    Hi there,I live in the Isle of Man and 2 weeks ago I was airlifted to the Walton centre in Liverpool uk, where I was diagnosed with CM, my only symptoms were a stiff neck and slight headache. It turns out that my CM was blocking my CSF fluid draining from my brain, they didn't want to do the decompression op so fitted me with a VP shunt to drain the fluid. Has anyone else had this op for a...
  • 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.
  • doxilvr

    New to this group

    Hi - I found out two years ago that I have chiari malformation.  I had no symptoms until I was pregnant with my daughter at age 40.  After an MRI showing that I had chiari, I decided to lose weight.  My symptoms (the intense pressure headaches where my head feels like it is going to explode after I would cough) seemed to go away completely after losing baby weight.  Unfortunately, I gained it...
  • JayLee

    New Member to Group and New To Chiari Malformation

    Hello everyone!I was diagnosed with Chiari in March of this year. It took 5 years of headaches before I was given an MRI in order to find this diagnosis.  I went to the Barrow Brain and Spine Institute yesterday and spoke to the neurosurgeon. According to him, the tonsils of my brain decend about 2.5 cm. He said that he is surprised I am not having trouble with fine motor skills right now.  He...
  • 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...
  • Michra

    Diagnosed May 16

    I have been having symptoms since 2007...that was the onset, I now know..And there are many left side is very compromised. .I have drop foot which causes,me,to trip over the top of my foot...and my being left handed makes it even worse because things,that,I am holding get dropped alot! I have severe headaches in the back of my head,  always followed by my eyes going blurry..and,the...
  • dory1683

    what to expect

    I was just diagnosed this month. Today I had an mri ro check my spine for cysts. The doctor said that's common with Chiari. He wants me to consult a surgeon in case surgery is needed. At what point do they usually perform surgery? What is recovery like? My current symptoms are daily headaches and some visual problems. I've lost my peripheral vision temporarily as well as having blurred vision,...
  • aglick

    Just diagnosed with Chiari Malformation

    I have so many questions about will just tell my story for now, wondering if it's normal. About 6 years ago I fell and fracture my spine. Before that happened I had noticed I had been falling quite often, had back and neck pain, and hearing loss.i also noticed I had this foggy feeling in my head, hard for my to find the right word to say and my vision was blurry and had not been...
  • wyatthoude

    My dreams of protecting others

    I was diagnosed with chiari ten years ago and I have been dragged down by this condition ever since. My dream as a kid was to be a police officer and help those in need and keep the right people locked up and the good where they belong but I was told my whole life you cant because you have chiari. I never got to live my life for the past ten years I have had to say no to so many people because of...