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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  • 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

    Help......

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    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...
  • Kmurphy0621

    "Newby"

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    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...
  • broderick4

    Has anyone had the surgery

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    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

    Need Neurosurgeon in Northeast: 4mm Herniation

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    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?

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    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

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    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

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    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

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    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

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    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

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    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

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    I have been having symptoms since 2007...that was the onset, I now know..And there are many symptoms..my 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...