Fwd: Don't tell me Chiari is insignificant!

[Guest guest]

>From: ejfs@...

>To: parkinsn@...

>Subject: Don't tell me Chiari is insignificant!

>Date: Fri, 23 Aug 2002 07:57:07 -0400

>

>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.

> > 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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[Guest guest]

I feel this is very good information and should be read by all.

" tenacity's man "

>From: ejfs@...

>To: parkinsn@...

>Subject: Don't tell me Chiari is insignificant!

>Date: Fri, 23 Aug 2002 07:57:07 -0400

>

>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.

> > 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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