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Neurology (Expert Forum)
Just a 'little' Chiari
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Just a 'little' Chiari
by amy_elton, Oct 04, 2005 12:00AM
When I was 10 years old, an MRI at one of the Shriner’s hospitals revealed a congenital Chiari Malformation, though no measurement of it was indicated. A referral to a neurosurgeon was given, but my mother, for whatever reason, refused to allow me to have “brain surgery.” The symptoms that got me to Shriner’s in the first place (ataxia, gait irregularities, general “clumsiness”) were treated as Cerebral Palsy with physical therapy and the whole thing was swept under the rug.
Currently, I am 24 years old and have been experiencing severe, crushing headaches in the back of my head for at least 9 years. Numerous doctors have evaluated and treated me for hormonal imbalances, migraines, triggered-reactions/allergies, cluster headaches, vision problems and tension headaches with no success. The ataxia and clumsiness have persisted as well.
In frustration, I requested an MRI last Friday. There appears to be a 3mm Chiari malformation with no signs of Syringomyelia. (The hospital where the MRI was read is very, very rural, which concerns me, but that’s a whole other can of worms!)
What are the odds of 3mm CMI being the root cause of such severe headaches and ataxia? Is there disparity in the measurement of a MRI (where one is horizontal) to one’s usual daily position (sitting or standing)? Could this CMI have shrunk overtime? Can it grow and result in worse symptoms? Can CMI be a symptom of, or a partner-in-crime with, another neurological disorder?
Are we barking up the wrong tree here?
Currently, I am 24 years old and have been experiencing severe, crushing headaches in the back of my head for at least 9 years. Numerous doctors have evaluated and treated me for hormonal imbalances, migraines, triggered-reactions/allergies, cluster headaches, vision problems and tension headaches with no success. The ataxia and clumsiness have persisted as well.
In frustration, I requested an MRI last Friday. There appears to be a 3mm Chiari malformation with no signs of Syringomyelia. (The hospital where the MRI was read is very, very rural, which concerns me, but that’s a whole other can of worms!)
What are the odds of 3mm CMI being the root cause of such severe headaches and ataxia? Is there disparity in the measurement of a MRI (where one is horizontal) to one’s usual daily position (sitting or standing)? Could this CMI have shrunk overtime? Can it grow and result in worse symptoms? Can CMI be a symptom of, or a partner-in-crime with, another neurological disorder?
Are we barking up the wrong tree here?
Doctor's Answer
by CCF-Neuro-M.D.-PW, Oct 06, 2005 12:00AM
It is commonly difficult to prove that headaches are due to a Chiari malformation, and you do not want to have brain surgery if you do not need it
It is more likely that the Chiari is causing symptoms 1) if there is evidence of lower brainstem dysfunction - this may be the cause for your ataxia, more may be apparent on a good neurological examination
2) the headaches are posterior and may have a postural component
3) the chiari is >3mm below the level of the foramen magnum
4) if resolution occurs after surgery - this is obviously not possible to ascertain now
It may also be a good idea to image the rest of the spinal cord as well to excluse other causes of your ataxia, and things sometimes associated with Chiari like a tethered cord (the spinal cord 'tied' to the bottom of the spinal column) or a myelomeningocele (connection between the spinal cord and the back) in the lower back area.
I cannot give you a clinical diagnosis, but an opinion from a specialist experienced in Chiaris might be a good idea. At the Cleveland Clinic, Dr. Edward Benzel or Dr. Marc Luciano are very experienced in this regard
It is more likely that the Chiari is causing symptoms 1) if there is evidence of lower brainstem dysfunction - this may be the cause for your ataxia, more may be apparent on a good neurological examination
2) the headaches are posterior and may have a postural component
3) the chiari is >3mm below the level of the foramen magnum
4) if resolution occurs after surgery - this is obviously not possible to ascertain now
It may also be a good idea to image the rest of the spinal cord as well to excluse other causes of your ataxia, and things sometimes associated with Chiari like a tethered cord (the spinal cord 'tied' to the bottom of the spinal column) or a myelomeningocele (connection between the spinal cord and the back) in the lower back area.
I cannot give you a clinical diagnosis, but an opinion from a specialist experienced in Chiaris might be a good idea. At the Cleveland Clinic, Dr. Edward Benzel or Dr. Marc Luciano are very experienced in this regard
Best of luck to you, ck out that web site!
jadedawn,ny
surg 1/03
chiari 20mm
geniculate neuralgia 10 years
2 children with chiari and basilar impression as well
Also, jadedawn - how old are your children and how did you know to get them checked for Chiari? I am 45, with 3 children 22,24,and 28 and have suspisions with my youngest but nothing concrete. Just wondering.
Thanks for any help.
I think Im pretty sure the reason your neuro is suggesting an MRI of the spine. It is to make sure that you dont have a syrinx. Which really should have been checked to begin with when they found you had chiari. Think of chiari as a wine cork in a btl. What your brain was doing was herniating down into your spine and acting like a cork does in a btl, this for many causes flow issues, which can lead to developing a syrinx in your spine.
Now if i did a hack job of explaining that I suggest you go to the wacma.com page for a better explanation! lol
I had my children tested because they showed a lot of the symptoms I did when i was the same age. Headaches, seeing spots, numbness in arm, dizzy and vertigo, hearing popping noises, headaches esp when bending over or straining...well you have chiari so you probably know the rest.....I didnt test one of my sons as he wasnt showing symptoms at the time....however its been a couple years since and he shows signs now.....I just feel it wouldnt change anything to know at this pt and may hurt his future to find out.......long story.
If your child has insurance have them get an mri....its not a big deal and she or he can just mention it is in the family.
Best of luck to you....also,,,,if your Dr is too busy for you that He cant answer your questions then perhaps your going to the wrong DR. Im blest to have found the Drs I have now but they were not my first believe me. I kept on looking till I found one that respected me and one that i could respect and get along with. They are amoung the most important people in my life.
jadedawn