Please let me clarify some issues regarding Chiari I malformation and as it
relates to 2 posts (see below)...
> Chiari I is a mild birth defect at the base of the skull,
> which, in most patients, causes NO problems at all.
>
Chiari I can be mild but it can also be very significant to symptoms. Read the
literature. There are tons of Chiari I articles published in medical journals
talking about severe problems and even death in some, usually from respiratory
failure....and these are Chiari I, not II or III.
Does it really cause no problems at all in most patients with this defect? Well,
I wonder. Yes, I've heard that there are asymptomatic people with the Chiari I
defect but I suspect this type of statement is not as accurate as it's made out
to be. Why? Well, I wonder how many patients are diagnosed with some
neurological syndrome (i.e., diagnosis of exclusion based solely on
symptomatology) when the doctors don't see a radiological problem and just
dismiss an existing Chiari deformity ("don't see" often really means "don't
know")? Probably alot and perhaps incorrectly in many. After all, it's not
perfectly healthy people who are getting expensive MRI head scans done - it's
people with medical problems. If the doctors diagnose a syndrome based solely on
symptoms and there is Chiari, perhaps it's the Chiari causing the problems - how
can one simply throw out a existing and known disorder as a possible explanation
to their problems!?
> Be VERY wary of surgeons who want to operate on you for Chiari I
> malformation. There is a small group of neurosurgeons who have made
> quite a good living by performing these surgeries on people with this
> condition.
>
Fact is that "the small group of neurosurgeons who have made quite a good living
by performing these surgeries", as you have put it, have found subtle
abnormalities on scans, which are indicators of problems, and these are not yet
understood by the vast majority of physicians. Radiological tools are great, but
they're far from perfect. So is the field of medicine - doctors say they don't
really know what causes many syndromes, but when some docs have made important
findings, rather than opening their minds to it, they simply take a cynical
view. I guess the world must be flat after all.
> Such other conditions as "fibromyalgia" have also been
> ascribed to Chiari Type I. There was a program on TV a couple of
> years ago which popularized the "cure" and it was so poorly-based
> scientifically that the national neurosurgical societies in the USA
> published a paper warning the public that surgery for this set of
> problems was unproven and not risk-free.
>
The problem here was the media. The doctors performing this surgery never
claimed they had found the cure to Fibromyalgia. The media reported it as such.
The doctors have said that there have been people misdiagnosed with Fibromyalgia
or Chronic Fatigue Syndrome when they actually have Chiari I and/or cervical
spinal stenosis and this is what they are researching. Hmmm, makes one wonder
how often this happens with other syndromes too.
> Get a good evaluation from a neurosurgical center (such as Dr.
> Patrick Kelly at NYU) before you accept this stuff about Chiari Type I.
>
Chiari I is often problematic. I've been a member of a large Chiari forum for
almost 5 years and many patients end up having to travel to see an expert and
get relief after years of suffering and being told nonsense such as the posts
listed below. In fact, we travelled extensively to see many specialists across
North America due to our child's progressive problems. Several neurosurgeons and
neuroradiologists told us there was no Chiari I; two experts diagnosed it. We
researched it after some nurses mentioned the symptoms sounded like Chiari. We
had to travel to the experts and surgery alleviated a ton of symptoms, including
respiratory problems, occasional bouts of blindness and many others. It has made
all the difference in our child's life. Oh, I forgot to mention - our child had
no herniated tonsils - they were at the level of the foramen magnum - that's
referred to as 0mm herniation. Most docs think 5mm herniation of the cerebellar
tonsils is mild or borderline and nothing to worry about - few think it can be
enough to cause problems. Many docs think even larger herniations are mild. Some
think it can only cause a very limited number of symptoms or so, such as
headaches (wong). Then there are the rest who, for whatever reason, make little
effort in learning about Chiari I and cling to the belief that it's not a big
deal. The literature says otherwise. Our experience says otherwise, as does that
of many others. Our child was misdiagnosed on several occasions and this is very
common to Chiari I patients.
There is growing acceptance that herniated cerebellar tonsils are only one
factor of many to consider when diagnosing symptomatic patients with Chiari I.
CSF flow issues and anatomical anomalies in the posterior fossa and cervical
spine are critical in making the diagnosis and considering for surgery. We had
several neurosurgeons and neuroradiologists tell us our child had no Chiari I
and surgery wouldn't help. They were all wrong as my child had such relief from
many problems! Once again, this is such a typical scenario in Chiari I patients.
There was an article published in the peer-reviewed medical journal called
Neurosurgery, May 1999, called "Chiari I malformation redefined". It lists
several factors which should be used in the diagnosis of Chiari I.
Traditionally, only the amount of herniation of the cerebellar tonsils was used.
This belief is slowly changing. As well, the authors state that "symptomatic
people with less than 5mm tonsillar herniation should not be excluded from the
diagnosis"....referring to the fact that there are other factors to consider in
making the diagnosis. The principle author of this publication was the first of
only two to diagnose my child with Chiari I. Thank God for this doctor, as well
as the other, as it potentially saved my child's life.
> Why is surgery being done for Chiari? What are the
> symptoms that justify the surgery. There are some people who are
> operating on Chiari malformations without good indications (many of
> these previously undiagnosed and asymptomatic malformations are
> picked up as "incidental findings" on scans).
>
What criteria/indicators do you use? What symptoms would you consider as
possible in symptomatic Chiari I patients? How do you know for sure they are
incidental findings? If you see people's head MRIs, it's because they are having
neurological problems - which people do you see that are asymptomatic? I wasn't
aware that neurosurgeons had a tendency to see perfectly healthy people and
their MRI scans - I'm perfectly healthy and have never had a head MRI done - why
should I?! Do you often make diagnoses of exclusion without considering these
"incidental findings" as possibly significant?
There's also been a publication called "Symptomatic tonsillar ectopia" which
discusses just that - people with minimal tonsillar herniation (less than 5mm)
who've had successful decompression surgery and alleviation of symptoms. There
are now publications coming out referring to Chiari 0. These patients are
Syringomyelia patients without tonsillar herniation. They benefit from
decompression surgery. Syringomyelia is very often associated with Chiari I. One
of the reviews of one of these publications by a Chiari expert states that the
authors should properly assess the posterior fossa to analyse subtle
abnormalities and CSF flow issues (hypoplasia of the occipital bone, steep slope
of the tentorium, volumetrically small posterior fossa, CSF flow restriction in
the cerebellar cisterns, retroflexion of the odontoid, etc). This simply
suggests that these Chiari 0 patients (also referred to as hypoplastic posterior
fossa or borderline Chiari I by the experts who know better) may actually have
Chiari I. In many, perhaps most, Chiari I patients, a small posterior fossa as a
result of an underdeveloped occipital bone simply causes compression such that
the cerebellar tonsils are forced into the spinal canal - for whatever reason,
this doesn't happen to everyone. In fact, there are other issues being found in
Chiari I patients, such as elevated ICP. There are alot of issues with Chiari I
and most doctors aren't qualified to make too many comments on it.
Chiari I is too often dismissed when it shouldn't be, too often missed and too
often misdiagnosed. We Chiari I patients and parents of Chiari I patients know
this better than anyone. ACM friends, please feel free to add your comments as
some people need to learn the truth about Chiari I malformation....for the
benefit of patients and to those reading the inaccurate posts.
ES
Here are the posts being replied to:
http://www.parkinsons-information-exchange-network-online.com/parkmail/msg00132.html
http://www.parkinsons-information-exchange-network-online.com/parkmail/msg00134.html
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