What Chiari Is and How it Affects Me

There are many websites that you can search and find all the medical jargon you want about ACM1.  I'm going to give you the "plain english" version.  In simple terms, people with Chiari have skulls that are not large enough for their brains (or brains that are too large for their skulls)... This causes pressure in the skull and makes the brain herniate down into our spinal canal, which in turn puts pressure on our spinal cord and brain stem.  It is this pressure that causes our symptoms.  Just like with any hernia, physical stress will cause symptoms to be worse.  Sneezing, coughing, laughing or straining will make me feel as if my head is going to explode. 


There are many symptoms reported with Chiari.  Here is a list of my symptoms:

• Headache/Neck Pain
• Tinnitus
• Fullness/Pain in my ears
• Nystagmus (involuntary eye movements)
• Blurred Vision
• Balance Issues
• Dizziness/Vertigo
• Breathing Difficulties
• Swallowing Difficulties
• Drop Attacks (falling for no reason)
• Muscle Weakness & Pain
• Gait Problems (unable to walk)
• Memory Problems/Difficulty Finding the Right Words
• Hand Tremors (thank goodness for spell checker and backspace) 

 The original symptoms that had my doctor sending me for the MRI was nystagmus and severe headaches.  It was the MRI that showed the Chiari.  My Chiari is 15mm.  That is the length that my brain is herniated.  15mm is a large herniation, though they say size doesn't matter... it is symptoms.


Here is a picture from my MRI.  I have drawn a white line to show you where the brain should have been contained.  You can see the part that is herniated down past that is putting pressure on the spinal cord.

When my ACM1 was found I was referred to a Neurosurgeon who is a specialist on Chiari.  I had a very long visit with him and we decided at the time (one year ago) that I did not need surgery.  In the last 4 months my symptoms have become much worse and I am now unable to walk, perform anything that requires fine motor skills, and I have pain all the time.  At the time my doctors suggested my problems were related to my lupus (I have SLE) so they suggested I go to an inpatient physical rehabilitation facility. I was there for 3 months while they tried to get my muscles built up and get me walking again.  It was towards the end of that 3 months that my rheumatolgist (I also have lupus) suggested that perhaps my worsening symptoms were due to the Chiari and not lupus as we had originally thought.  He then called my neurosurgeon to request that he see me again and reevaluate the situation.  The neurosurgeon said before he sees me again he wants me to have more MRI's.  They scheduled 3 days worth of MRI's and so far I have completed 2 of them.  Once he sees them they will make me an appointment.  My next MRI is a thoracic MRI on Wednesday at 1pm.  I am extremely claustrophobic and hate those studies!