Re: cerebellar tonsillar ectopia of 7mm??

[Guest guest]

It seems to me that the term C.T. Ectopia is an attempt to disambiguate

and avoid the confusion around the term Chiari. Chiari is not a good

word because nobody can agree on what it means. CTE is better because

it's more accurate, more focused and describes what it is: measured

tonsillar herniation. We could say that CTE is a subset of Chiari. As

such, they are related but not the same.

grams2faith wrote:

>

>

> Hello,

> I recently read a report from an mri I had done in 2009 and it says I

> have this ectopia of 7mm. I was told this in 2009 and was told it was

> no big deal. I saw my neurologist again and questioned him about this

> and he said it was no big deal and that it has nothing to do with

> chiari. The reason I am questioning this now is because my 5 year old

> granddaughter whom I've adopted was diagnosed with chiari type II

> recently and we have many similarities. I have chronic migraines, neck

> pain, lower back pain, lumbar scholiosis, bladder issues, sinus issues

> and occasional numbness /weakness in my left leg. Is this neurologist

> right? Is tonsillar ectopia different from chiari and should I just

> ignore it? I'm really confused so any help would be appreciated.

> Thank you!

> Amy

>

[Guest guest]

Long ago I found this, as far as I understood, Tonsillar ectopia is when

your tonsils descent not because you were born with it but because you

adquired it in an accident or something like that, but at the end both have

the same symptoms, however in some cases the treatement is not necesarily

surgery, like if you have a tonsillar descent just because you have a huge

CSF leak due to a car accident, they can correct the leak and with this the

tonsills will go up. So the question here is why do you have a tonsillar

descent? Did you born with it or not? If you were like that since you are

liittle it perhpas it is Chiari, if not then it is a tonsillar descent.

* Performing your original search, tonsillar ectopia, in PubMed will

retrieve 93 records

<http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

estion> .

Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

Feb;22(1):229-36.

Tonsillar ectopia and headaches.

Arnett BC

<http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

Source

South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110, Flossmoor, IL

60422, USA. bridgette@...

Abstract

Tonsillar ectopia, encompassing slight descent of the cerebellar tonsils and

Chiari I malformations, are disorders observed routinely in older children

and adults and are believed to be an acquired form of the Chiari

malformations. This entity is different from the other Chiari malformations

in that hydrocephalus plays no role in its evolution. More likely it is a

disorder of para-axial mesoderm, characterized by posterior fossa hypoplasia

and content overcrowding, and not an embryologic anomaly of neuroectoderm.

The prevalence of tonsillar ectopia to my knowledge has not been studied.

The incidence of Chiari I malformations ranges from less than 1%to 3% at

various tertiary centers. The occipital and exertional headache associated

with this malformation can be observed in subjects who have new-onset

tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

intracranial hypotension, lumboperitoneal shunting, or spontaneous

development [34-36]. This new-onset headache can remit with return to normal

tonsil positioning. These findings support the proposal that pressure

dissociation gradients and perhaps traction of pain-sensitive tissues play a

role in generation of the headache observed in this malformation. In

accordance with this idea, the extent of tonsillar descent is irrelevant

alone,and the degree of posterior fossa hypoplasia and decrement of CSF flow

velocity are better defining factors for determining the clinical

significance of tonsillar ectopia.

PMID: 15062536 [PubMed - indexed for MEDLINE]

Publication Types, MeSH Terms <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

De: grams2faith

Responder a: < >

Fecha: martes 8 de mayo de 2012 18:29

Para: < >

Asunto: cerebellar tonsillar ectopia of

7mm??

Hello,

I recently read a report from an mri I had done in 2009 and it says I have

this ectopia of 7mm. I was told this in 2009 and was told it was no big

deal. I saw my neurologist again and questioned him about this and he said

it was no big deal and that it has nothing to do with chiari. The reason I

am questioning this now is because my 5 year old granddaughter whom I've

adopted was diagnosed with chiari type II recently and we have many

similarities. I have chronic migraines, neck pain, lower back pain, lumbar

scholiosis, bladder issues, sinus issues and occasional numbness /weakness

in my left leg. Is this neurologist right? Is tonsillar ectopia different

from chiari and should I just ignore it? I'm really confused so any help

would be appreciated.

Thank you!

Amy

[Guest guest]

Well it looks like I'm going to have to disagree with those that say its not the

same because otherwise it will mean that both my daughter and I were

misdiagnosed by a chiari specialist and I had surgery for something I didn't

have....

Before I ever heard of chiari, when the neurologist and PCP I had at the time,

were telling me I was just way too stressed and could find nothing wrong with

me. I read my MRI report and saw that I had cerebullar tonsillar ectopia. I

didn't know what this meant but knew it couldn't be a good thing. The doctors

never even mentioned this finding to me. All searches led to chiari 1. And

everything I found about chiari explained all my symptoms. So I then searched

for a doctor who knew about chiari. It was this site that I found found my

specialist right here in Wisconsin only 45 minutes away from me!! I immediately

sent my records to Dr. H who then confirmed that I did indeed have chiari. I did

find out however that the radiologist was wrong on the measurement and it was

greater than what was reported.

So when my daughter started to present with symptoms (at this point I knew there

was a genetic link) I begged and pleaded with the PCP to do an MRI. He finally

agreed. Her follow up with the PCP wasn't for a couple weeks so I got the films

and report and was devastated when I read cerebullar tonsillar ectopia of 4mm. I

immediately sent her records to Dr. H who once again confirmed that she had

chiari. When we went to the PCP I said nothing at first. I wanted to see if

after him missing mine if he learned anything. He sat there and told me

everything was normal. I could of screamed!! But I didn't, I just told him I

disagreed. That I had already gotten confirmation that she did have it.

Now that being said. Most places don't follow the proper protocol when the MRI

is being done and/or don't measure it properly. So my daughters MRI was repeated

following the chiari protocol and the result was that instead of it being 4mm it

was 7mm.

So, in conclusion, I would suggest you send your records to someone who is very

familiar with chiari and see what they say. I would be very surprised if they

did not diagnose you with chiari.

Debbie

Sent from my iPhone

[Guest guest]

thank you for helping us understand that in earthly terms!

Bea

> Long ago I found this, as far as I understood, Tonsillar ectopia is when

> your tonsils descent not because you were born with it but because you

> adquired it in an accident or something like that, but at the end both have

> the same symptoms, however in some cases the treatement is not necesarily

> surgery, like if you have a tonsillar descent just because you have a huge

> CSF leak due to a car accident, they can correct the leak and with this the

> tonsills will go up. So the question here is why do you have a tonsillar

> descent? Did you born with it or not? If you were like that since you are

> liittle it perhpas it is Chiari, if not then it is a tonsillar descent.

>

>

> * Performing your original search, tonsillar ectopia, in PubMed will

> retrieve 93 records

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

> estion> .

>

>

>

>

>

>

>

> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

> Feb;22(1):229-36.

> Tonsillar ectopia and headaches.

> Arnett BC

> <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

> Source

> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110, Flossmoor, IL

> 60422, USA. bridgette@...

>

> Abstract

> Tonsillar ectopia, encompassing slight descent of the cerebellar tonsils and

> Chiari I malformations, are disorders observed routinely in older children

> and adults and are believed to be an acquired form of the Chiari

> malformations. This entity is different from the other Chiari malformations

> in that hydrocephalus plays no role in its evolution. More likely it is a

> disorder of para-axial mesoderm, characterized by posterior fossa hypoplasia

> and content overcrowding, and not an embryologic anomaly of neuroectoderm.

> The prevalence of tonsillar ectopia to my knowledge has not been studied.

> The incidence of Chiari I malformations ranges from less than 1%to 3% at

> various tertiary centers. The occipital and exertional headache associated

> with this malformation can be observed in subjects who have new-onset

> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

> intracranial hypotension, lumboperitoneal shunting, or spontaneous

> development [34-36]. This new-onset headache can remit with return to normal

> tonsil positioning. These findings support the proposal that pressure

> dissociation gradients and perhaps traction of pain-sensitive tissues play a

> role in generation of the headache observed in this malformation. In

> accordance with this idea, the extent of tonsillar descent is irrelevant

> alone,and the degree of posterior fossa hypoplasia and decrement of CSF flow

> velocity are better defining factors for determining the clinical

> significance of tonsillar ectopia.

>

> PMID: 15062536 [PubMed - indexed for MEDLINE]

> Publication Types, MeSH Terms <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

>

> De: grams2faith

> Responder a: < >

> Fecha: martes 8 de mayo de 2012 18:29

> Para: < >

> Asunto: cerebellar tonsillar ectopia of

> 7mm??

>

> Hello,

> I recently read a report from an mri I had done in 2009 and it says I have

> this ectopia of 7mm. I was told this in 2009 and was told it was no big

> deal. I saw my neurologist again and questioned him about this and he said

> it was no big deal and that it has nothing to do with chiari. The reason I

> am questioning this now is because my 5 year old granddaughter whom I've

> adopted was diagnosed with chiari type II recently and we have many

> similarities. I have chronic migraines, neck pain, lower back pain, lumbar

> scholiosis, bladder issues, sinus issues and occasional numbness /weakness

> in my left leg. Is this neurologist right? Is tonsillar ectopia different

> from chiari and should I just ignore it? I'm really confused so any help

> would be appreciated.

> Thank you!

> Amy

>

>

[Guest guest]

I agree with Debra.

Tonsillar ectopia means your brain is hanging out of your skull.. It doesn't

matter how far it is hanging, the point is. your brain fell out of your

head!

Tonsillar ectopia is idiot doctors' way of saying " Borderline " Chiari

because they still believe it has to fall a certain #mm to classify as

Chiari.

Borderline Chiari and/or Tonsillar ectopia is the same thing as saying you

might be a " little bit pregnant " . Last I checked. you either were or you

weren't.

You have Chiari. and you need to fire your idiot doctor.

Aimee

Dallas, Texas

Symptomatic since 1986

Misdiagnosed for 19 years

Even with a diagnosis, got to fight with 9 neurologists and 5 neurosurgeons

before I found one that would help me.

Surgery 12/15/09. 80% improvement in symptoms

Organizer. Conquer Chiari Walk Across America 2012 Dallas / Fort Worth.

From:

[mailto: ] On Behalf Of Debra

Metz

Sent: Wednesday, May 09, 2012 7:22 AM

To:

Subject: Re: cerebellar tonsillar ectopia of

7mm??

Well it looks like I'm going to have to disagree with those that say its not

the same because otherwise it will mean that both my daughter and I were

misdiagnosed by a chiari specialist and I had surgery for something I didn't

have....

Before I ever heard of chiari, when the neurologist and PCP I had at the

time, were telling me I was just way too stressed and could find nothing

wrong with me. I read my MRI report and saw that I had cerebullar tonsillar

ectopia. I didn't know what this meant but knew it couldn't be a good thing.

The doctors never even mentioned this finding to me. All searches led to

chiari 1. And everything I found about chiari explained all my symptoms. So

I then searched for a doctor who knew about chiari. It was this site that I

found found my specialist right here in Wisconsin only 45 minutes away from

me!! I immediately sent my records to Dr. H who then confirmed that I did

indeed have chiari. I did find out however that the radiologist was wrong on

the measurement and it was greater than what was reported.

So when my daughter started to present with symptoms (at this point I knew

there was a genetic link) I begged and pleaded with the PCP to do an MRI. He

finally agreed. Her follow up with the PCP wasn't for a couple weeks so I

got the films and report and was devastated when I read cerebullar tonsillar

ectopia of 4mm. I immediately sent her records to Dr. H who once again

confirmed that she had chiari. When we went to the PCP I said nothing at

first. I wanted to see if after him missing mine if he learned anything. He

sat there and told me everything was normal. I could of screamed!! But I

didn't, I just told him I disagreed. That I had already gotten confirmation

that she did have it.

Now that being said. Most places don't follow the proper protocol when the

MRI is being done and/or don't measure it properly. So my daughters MRI was

repeated following the chiari protocol and the result was that instead of it

being 4mm it was 7mm.

So, in conclusion, I would suggest you send your records to someone who is

very familiar with chiari and see what they say. I would be very surprised

if they did not diagnose you with chiari.

Debbie

Sent from my iPhone

[Guest guest]

Sent from my LG phone

Yung wrote:

>thank you for helping us understand that in earthly terms!

>Bea

>

>

>

>

>> Long ago I found this, as far as I understood, Tonsillar ectopia is when

>> your tonsils descent not because you were born with it but because you

>> adquired it in an accident or something like that, but at the end both have

>> the same symptoms, however in some cases the treatement is not necesarily

>> surgery, like if you have a tonsillar descent just because you have a huge

>> CSF leak due to a car accident, they can correct the leak and with this the

>> tonsills will go up. So the question here is why do you have a tonsillar

>> descent? Did you born with it or not? If you were like that since you are

>> liittle it perhpas it is Chiari, if not then it is a tonsillar descent.

>>

>>

>> * Performing your original search, tonsillar ectopia, in PubMed will

>> retrieve 93 records

>> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

>> estion> .

>>

>>

>>

>>

>>

>>

>>

>> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

>> Feb;22(1):229-36.

>> Tonsillar ectopia and headaches.

>> Arnett BC

>> <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

>> Source

>> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110, Flossmoor, IL

>> 60422, USA. bridgette@...

>>

>> Abstract

>> Tonsillar ectopia, encompassing slight descent of the cerebellar tonsils and

>> Chiari I malformations, are disorders observed routinely in older children

>> and adults and are believed to be an acquired form of the Chiari

>> malformations. This entity is different from the other Chiari malformations

>> in that hydrocephalus plays no role in its evolution. More likely it is a

>> disorder of para-axial mesoderm, characterized by posterior fossa hypoplasia

>> and content overcrowding, and not an embryologic anomaly of neuroectoderm.

>> The prevalence of tonsillar ectopia to my knowledge has not been studied.

>> The incidence of Chiari I malformations ranges from less than 1%to 3% at

>> various tertiary centers. The occipital and exertional headache associated

>> with this malformation can be observed in subjects who have new-onset

>> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

>> intracranial hypotension, lumboperitoneal shunting, or spontaneous

>> development [34-36]. This new-onset headache can remit with return to normal

>> tonsil positioning. These findings support the proposal that pressure

>> dissociation gradients and perhaps traction of pain-sensitive tissues play a

>> role in generation of the headache observed in this malformation. In

>> accordance with this idea, the extent of tonsillar descent is irrelevant

>> alone,and the degree of posterior fossa hypoplasia and decrement of CSF flow

>> velocity are better defining factors for determining the clinical

>> significance of tonsillar ectopia.

>>

>> PMID: 15062536 [PubMed - indexed for MEDLINE]

>> Publication Types, MeSH Terms <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

>> LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

>>

>> De: grams2faith

>> Responder a: < >

>> Fecha: martes 8 de mayo de 2012 18:29

>> Para: < >

>> Asunto: cerebellar tonsillar ectopia of

>> 7mm??

>>

>> Hello,

>> I recently read a report from an mri I had done in 2009 and it says I have

>> this ectopia of 7mm. I was told this in 2009 and was told it was no big

>> deal. I saw my neurologist again and questioned him about this and he said

>> it was no big deal and that it has nothing to do with chiari. The reason I

>> am questioning this now is because my 5 year old granddaughter whom I've

>> adopted was diagnosed with chiari type II recently and we have many

>> similarities. I have chronic migraines, neck pain, lower back pain, lumbar

>> scholiosis, bladder issues, sinus issues and occasional numbness /weakness

>> in my left leg. Is this neurologist right? Is tonsillar ectopia different

>> from chiari and should I just ignore it? I'm really confused so any help

>> would be appreciated.

>> Thank you!

>> Amy

>>

>>

[Guest guest]

Tonsillar ectopia is anything smaller than a 5mm herniation. It is the

pre-Chiari 1. Chiari 1 is anything larger than a 5mm herniation. Has

nothing to do with whether or not it is acquired or congenital. Hope

this helps.

>

>

> Sent from my LG phone

>

> Yung <mrsbrendayung@...

> <mailto:mrsbrendayung%40gmail.com>> wrote:

>

> >thank you for helping us understand that in earthly terms!

> >Bea

> >

> >

> >

> >

> >> Long ago I found this, as far as I understood, Tonsillar ectopia is

> when

> >> your tonsils descent not because you were born with it but because you

> >> adquired it in an accident or something like that, but at the end

> both have

> >> the same symptoms, however in some cases the treatement is not

> necesarily

> >> surgery, like if you have a tonsillar descent just because you have

> a huge

> >> CSF leak due to a car accident, they can correct the leak and with

> this the

> >> tonsills will go up. So the question here is why do you have a

> tonsillar

> >> descent? Did you born with it or not? If you were like that since

> you are

> >> liittle it perhpas it is Chiari, if not then it is a tonsillar descent.

> >>

> >>

> >> * Performing your original search, tonsillar ectopia, in PubMed will

> >> retrieve 93 records

> >>

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>

> >> estion> .

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

> >> Feb;22(1):229-36.

> >> Tonsillar ectopia and headaches.

> >> Arnett BC

> >>

> <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

> >> Source

> >> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110,

> Flossmoor, IL

> >> 60422, USA. bridgette@... <mailto:bridgette%40hotmail.com>

> >>

> >> Abstract

> >> Tonsillar ectopia, encompassing slight descent of the cerebellar

> tonsils and

> >> Chiari I malformations, are disorders observed routinely in older

> children

> >> and adults and are believed to be an acquired form of the Chiari

> >> malformations. This entity is different from the other Chiari

> malformations

> >> in that hydrocephalus plays no role in its evolution. More likely

> it is a

> >> disorder of para-axial mesoderm, characterized by posterior fossa

> hypoplasia

> >> and content overcrowding, and not an embryologic anomaly of

> neuroectoderm.

> >> The prevalence of tonsillar ectopia to my knowledge has not been

> studied.

> >> The incidence of Chiari I malformations ranges from less than 1%to

> 3% at

> >> various tertiary centers. The occipital and exertional headache

> associated

> >> with this malformation can be observed in subjects who have new-onset

> >> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

> >> intracranial hypotension, lumboperitoneal shunting, or spontaneous

> >> development [34-36]. This new-onset headache can remit with return

> to normal

> >> tonsil positioning. These findings support the proposal that pressure

> >> dissociation gradients and perhaps traction of pain-sensitive

> tissues play a

> >> role in generation of the headache observed in this malformation. In

> >> accordance with this idea, the extent of tonsillar descent is

> irrelevant

> >> alone,and the degree of posterior fossa hypoplasia and decrement of

> CSF flow

> >> velocity are better defining factors for determining the clinical

> >> significance of tonsillar ectopia.

> >>

> >> PMID: 15062536 [PubMed - indexed for MEDLINE]

> >> Publication Types, MeSH Terms

> <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> >> LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> >>

> >> De: grams2faith <grams2faith@...

> <mailto:grams2faith%40yahoo.com>>

> >> Responder a: <

> <mailto:%40yahoogroups.com>>

> >> Fecha: martes 8 de mayo de 2012 18:29

> >> Para: <

> <mailto:%40yahoogroups.com>>

> >> Asunto: cerebellar tonsillar ectopia of

> >> 7mm??

> >>

> >> Hello,

> >> I recently read a report from an mri I had done in 2009 and it says

> I have

> >> this ectopia of 7mm. I was told this in 2009 and was told it was no big

> >> deal. I saw my neurologist again and questioned him about this and

> he said

> >> it was no big deal and that it has nothing to do with chiari. The

> reason I

> >> am questioning this now is because my 5 year old granddaughter whom

> I've

> >> adopted was diagnosed with chiari type II recently and we have many

> >> similarities. I have chronic migraines, neck pain, lower back pain,

> lumbar

> >> scholiosis, bladder issues, sinus issues and occasional numbness

> /weakness

> >> in my left leg. Is this neurologist right? Is tonsillar ectopia

> different

> >> from chiari and should I just ignore it? I'm really confused so any

> help

> >> would be appreciated.

> >> Thank you!

> >> Amy

> >>

> >>

[Guest guest]

>

> I agree with Debra.

>

>

>

> Tonsillar ectopia means your brain is hanging out of your skull.. It doesn't

> matter how far it is hanging, the point is. your brain fell out of your

> head!

>

>

>

> Tonsillar ectopia is idiot doctors' way of saying " Borderline " Chiari

> because they still believe it has to fall a certain #mm to classify as

> Chiari.

>

>

>

> Borderline Chiari and/or Tonsillar ectopia is the same thing as saying you

> might be a " little bit pregnant " . Last I checked. you either were or you

> weren't.

>

>

>

> You have Chiari. and you need to fire your idiot doctor.

>

>

>

> Aimee

>

> Dallas, Texas

>

> Symptomatic since 1986

>

> Misdiagnosed for 19 years

>

> Even with a diagnosis, got to fight with 9 neurologists and 5 neurosurgeons

> before I found one that would help me.

>

> Surgery 12/15/09. 80% improvement in symptoms

>

> Organizer. Conquer Chiari Walk Across America 2012 Dallas / Fort Worth.

>

>

>

>

>

> From:

> [mailto: ] On Behalf Of Debra

> Metz

> Sent: Wednesday, May 09, 2012 7:22 AM

> To:

> Subject: Re: cerebellar tonsillar ectopia of

> 7mm??

>

>

>

>

>

> Well it looks like I'm going to have to disagree with those that say its not

> the same because otherwise it will mean that both my daughter and I were

> misdiagnosed by a chiari specialist and I had surgery for something I didn't

> have....

> Before I ever heard of chiari, when the neurologist and PCP I had at the

> time, were telling me I was just way too stressed and could find nothing

> wrong with me. I read my MRI report and saw that I had cerebullar tonsillar

> ectopia. I didn't know what this meant but knew it couldn't be a good thing.

> The doctors never even mentioned this finding to me. All searches led to

> chiari 1. And everything I found about chiari explained all my symptoms. So

> I then searched for a doctor who knew about chiari. It was this site that I

> found found my specialist right here in Wisconsin only 45 minutes away from

> me!! I immediately sent my records to Dr. H who then confirmed that I did

> indeed have chiari. I did find out however that the radiologist was wrong on

> the measurement and it was greater than what was reported.

> So when my daughter started to present with symptoms (at this point I knew

> there was a genetic link) I begged and pleaded with the PCP to do an MRI. He

> finally agreed. Her follow up with the PCP wasn't for a couple weeks so I

> got the films and report and was devastated when I read cerebullar tonsillar

> ectopia of 4mm. I immediately sent her records to Dr. H who once again

> confirmed that she had chiari. When we went to the PCP I said nothing at

> first. I wanted to see if after him missing mine if he learned anything. He

> sat there and told me everything was normal. I could of screamed!! But I

> didn't, I just told him I disagreed. That I had already gotten confirmation

> that she did have it.

> Now that being said. Most places don't follow the proper protocol when the

> MRI is being done and/or don't measure it properly. So my daughters MRI was

> repeated following the chiari protocol and the result was that instead of it

> being 4mm it was 7mm.

> So, in conclusion, I would suggest you send your records to someone who is

> very familiar with chiari and see what they say. I would be very surprised

> if they did not diagnose you with chiari.

> Debbie

>

> Sent from my iPhone

>

>

It seems we have a few different opinions. I've seen tonsillar ectopia used when

the herniation is less than 5 mm. I use Chiari 0 when the herniation isn't long

enough, but there is a herniation, and many have symptoms.

Dr. Milhorat wrote a study on this in 1997, called (Chiari Redefined " . It is on

our website.

I will ask the experts when I return.

Kathleen

>

>

>

[Guest guest]

Hi guys...

I'm coming in a little late on this, so sorry if I have missed something.

From everything I know about tonsillar ectopia, much depends on who exactly

is using the phrase: a radiologist...who may or may not have a lot of CM

experience, or may be using older guidelines; a neurologist with possibly

very limited CM knowledge.....etc.,etc.

I always believed it to be any measurable cerebral tonsil below the foramen

magnum. The question of how this is then interpreted or evaluated is up to

the doctor involved.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2169970/ Here is one study where

it is definitely described as below 5mm. They termed this " slight descent " .

Bottom line, it is not " normal " .

You have to also understand that doctors have been trained by different

medical schools, work under specific hospital guidelines,etc. Their

" definitions " can vary quite a bit. This is why getting to a

knowledgeable/experienced Chiari doctor is so important to get the help that

is needed with this condition. Semantics are only part of the issue.

Hope this helps a little.

Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

pretty good on NO meds in Bethlehem,Pa

Re: cerebellar tonsillar ectopia

>> of

>> 7mm??

>>

>>

>>

>>

>>

>> Well it looks like I'm going to have to disagree with those that say its

>> not

>> the same because otherwise it will mean that both my daughter and I were

>> misdiagnosed by a chiari specialist and I had surgery for something I

>> didn't

>> have....

>> Before I ever heard of chiari, when the neurologist and PCP I had at the

>> time, were telling me I was just way too stressed and could find nothing

>> wrong with me. I read my MRI report and saw that I had cerebullar

>> tonsillar

>> ectopia. I didn't know what this meant but knew it couldn't be a good

>> thing.

>> The doctors never even mentioned this finding to me. All searches led to

>> chiari 1. And everything I found about chiari explained all my symptoms.

>> So

>> I then searched for a doctor who knew about chiari. It was this site that

>> I

>> found found my specialist right here in Wisconsin only 45 minutes away

>> from

>> me!! I immediately sent my records to Dr. H who then confirmed that I did

>> indeed have chiari. I did find out however that the radiologist was wrong

>> on

>> the measurement and it was greater than what was reported.

>> So when my daughter started to present with symptoms (at this point I

>> knew

>> there was a genetic link) I begged and pleaded with the PCP to do an MRI.

>> He

>> finally agreed. Her follow up with the PCP wasn't for a couple weeks so I

>> got the films and report and was devastated when I read cerebullar

>> tonsillar

>> ectopia of 4mm. I immediately sent her records to Dr. H who once again

>> confirmed that she had chiari. When we went to the PCP I said nothing at

>> first. I wanted to see if after him missing mine if he learned anything.

>> He

>> sat there and told me everything was normal. I could of screamed!! But I

>> didn't, I just told him I disagreed. That I had already gotten

>> confirmation

>> that she did have it.

>> Now that being said. Most places don't follow the proper protocol when

>> the

>> MRI is being done and/or don't measure it properly. So my daughters MRI

>> was

>> repeated following the chiari protocol and the result was that instead of

>> it

>> being 4mm it was 7mm.

>> So, in conclusion, I would suggest you send your records to someone who

>> is

>> very familiar with chiari and see what they say. I would be very

>> surprised

>> if they did not diagnose you with chiari.

>> Debbie

>>

>> Sent from my iPhone

>>

>>

> It seems we have a few different opinions. I've seen tonsillar ectopia

> used when the herniation is less than 5 mm. I use Chiari 0 when the

> herniation isn't long enough, but there is a herniation, and many have

> symptoms.

>

> Dr. Milhorat wrote a study on this in 1997, called (Chiari Redefined " . It

> is on our website.

>

> I will ask the experts when I return.

>

> Kathleen

>

>>

>>

>>

[Guest guest]

SIZE DOESNT MATTER!!! It is Chiari if it is 2mm or 29mm

--

Sent from my Android phone with K-9 Mail. Please excuse my brevity.

Sara Eaton wrote:

Tonsillar ectopia is anything smaller than a 5mm herniation. It is the

pre-Chiari 1. Chiari 1 is anything larger than a 5mm herniation. Has

nothing to do with whether or not it is acquired or congenital. Hope

this helps.

>

>

> Sent from my LG phone

>

> Yung <mrsbrendayung@...

> <mailto:mrsbrendayung%40gmail.com>> wrote:

>

> >thank you for helping us understand that in earthly terms!

> >Bea

> >

> >

> >

> >

> >> Long ago I found this, as far as I understood, Tonsillar ectopia is

> when

> >> your tonsils descent not because you were born with it but because you

> >> adquired it in an accident or something like that, but at the end

> both have

> >> the same symptoms, however in some cases the treatement is not

> necesarily

> >> surgery, like if you have a tonsillar descent just because you have

> a huge

> >> CSF leak due to a car accident, they can correct the leak and with

> this the

> >> tonsills will go up. So the question here is why do you have a

> tonsillar

> >> descent? Did you born with it or not? If you were like that since

> you are

> >> liittle it perhpas it is Chiari, if not then it is a tonsillar descent.

> >>

> >>

> >> * Performing your original search, tonsillar ectopia, in PubMed will

> >> retrieve 93 records

> >>

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>

> >> estion> .

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

> >> Feb;22(1):229-36.

> >> Tonsillar ectopia and headaches.

> >> Arnett BC

> >>

> <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

> >> Source

> >> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110,

> Flossmoor, IL

> >> 60422, USA. bridgette@... <mailto:bridgette%40hotmail.com>

> >>

> >> Abstract

> >> Tonsillar ectopia, encompassing slight descent of the cerebellar

> tonsils and

> >> Chiari I malformations, are disorders observed routinely in older

> children

> >> and adults and are believed to be an acquired form of the Chiari

> >> malformations. This entity is different from the other Chiari

> malformations

> >> in that hydrocephalus plays no role in its evolution. More likely

> it is a

> >> disorder of para-axial mesoderm, characterized by posterior fossa

> hypoplasia

> >> and content overcrowding, and not an embryologic anomaly of

> neuroectoderm.

> >> The prevalence of tonsillar ectopia to my knowledge has not been

> studied.

> >> The incidence of Chiari I malformations ranges from less than 1%to

> 3% at

> >> various tertiary centers. The occipital and exertional headache

> associated

> >> with this malformation can be observed in subjects who have new-onset

> >> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

> >> intracranial hypotension, lumboperitoneal shunting, or spontaneous

> >> development [34-36]. This new-onset headache can remit with return

> to normal

> >> tonsil positioning. These findings support the proposal that pressure

> >> dissociation gradients and perhaps traction of pain-sensitive

> tissues play a

> >> role in generation of the headache observed in this malformation. In

> >> accordance with this idea, the extent of tonsillar descent is

> irrelevant

> >> alone,and the degree of posterior fossa hypoplasia and decrement of

> CSF flow

> >> velocity are better defining factors for determining the clinical

> >> significance of tonsillar ectopia.

> >>

> >> PMID: 15062536 [PubMed - indexed for MEDLINE]

> >> Publication Types, MeSH Terms

> <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> >> LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> >>

> >> De: grams2faith <grams2faith@...

> <mailto:grams2faith%40yahoo.com>>

> >> Responder a: <

> <mailto:%40yahoogroups.com>>

> >> Fecha: martes 8 de mayo de 2012 18:29

> >> Para: <

> <mailto:%40yahoogroups.com>>

> >> Asunto: cerebellar tonsillar ectopia of

> >> 7mm??

> >>

> >> Hello,

> >> I recently read a report from an mri I had done in 2009 and it says

> I have

> >> this ectopia of 7mm. I was told this in 2009 and was told it was no big

> >> deal. I saw my neurologist again and questioned him about this and

> he said

> >> it was no big deal and that it has nothing to do with chiari. The

> reason I

> >> am questioning this now is because my 5 year old granddaughter whom

> I've

> >> adopted was diagnosed with chiari type II recently and we have many

> >> similarities. I have chronic migraines, neck pain, lower back pain,

> lumbar

> >> scholiosis, bladder issues, sinus issues and occasional numbness

> /weakness

> >> in my left leg. Is this neurologist right? Is tonsillar ectopia

> different

> >> from chiari and should I just ignore it? I'm really confused so any

> help

> >> would be appreciated.

> >> Thank you!

> >> Amy

> >>

> >>

[Guest guest]

Good grief people, I was simply stating what it written in the medical

literature referencing the terms of tonsillar ectopia verses Chiari 1.

I know first hand size doesn't matter. My child was decompressed at 17

months of age with a 7mm herniation. She had one of the best

neurosurgeons in the country who performed the surgery. To date, my

child still does not walk, does not talk and cannot feed herself nor can

she eat orally. My child is terminal.

I will no longer answer questions on this forum. I do not need to be

talked to with capitalization.

>

> SIZE DOESNT MATTER!!! It is Chiari if it is 2mm or 29mm

> --

> Sent from my Android phone with K-9 Mail. Please excuse my brevity.

>

> Sara Eaton <eatonfam1@... <mailto:eatonfam1%40msn.com>> wrote:

>

> Tonsillar ectopia is anything smaller than a 5mm herniation. It is the

> pre-Chiari 1. Chiari 1 is anything larger than a 5mm herniation. Has

> nothing to do with whether or not it is acquired or congenital. Hope

> this helps.

>

> On 5/9/2012 9:02 AM, teamlasota@... <mailto:teamlasota%40MSN.COM>

> wrote:

> >

> >

> > Sent from my LG phone

> >

> > Yung <mrsbrendayung@... <mailto:mrsbrendayung%40gmail.com>

> > <mailto:mrsbrendayung%40gmail.com>> wrote:

> >

> > >thank you for helping us understand that in earthly terms!

> > >Bea

> > >

> > >

> > >

> > >

> > >> Long ago I found this, as far as I understood, Tonsillar ectopia is

> > when

> > >> your tonsils descent not because you were born with it but

> because you

> > >> adquired it in an accident or something like that, but at the end

> > both have

> > >> the same symptoms, however in some cases the treatement is not

> > necesarily

> > >> surgery, like if you have a tonsillar descent just because you have

> > a huge

> > >> CSF leak due to a car accident, they can correct the leak and with

> > this the

> > >> tonsills will go up. So the question here is why do you have a

> > tonsillar

> > >> descent? Did you born with it or not? If you were like that since

> > you are

> > >> liittle it perhpas it is Chiari, if not then it is a tonsillar

> descent.

> > >>

> > >>

> > >> * Performing your original search, tonsillar ectopia, in PubMed will

> > >> retrieve 93 records

> > >>

> >

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>

>

> >

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>>

> > >> estion> .

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

> > >> Feb;22(1):229-36.

> > >> Tonsillar ectopia and headaches.

> > >> Arnett BC

> > >>

> >

> <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

> > >> Source

> > >> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110,

> > Flossmoor, IL

> > >> 60422, USA. bridgette@...

> <mailto:bridgette%40hotmail.com> <mailto:bridgette%40hotmail.com>

> > >>

> > >> Abstract

> > >> Tonsillar ectopia, encompassing slight descent of the cerebellar

> > tonsils and

> > >> Chiari I malformations, are disorders observed routinely in older

> > children

> > >> and adults and are believed to be an acquired form of the Chiari

> > >> malformations. This entity is different from the other Chiari

> > malformations

> > >> in that hydrocephalus plays no role in its evolution. More likely

> > it is a

> > >> disorder of para-axial mesoderm, characterized by posterior fossa

> > hypoplasia

> > >> and content overcrowding, and not an embryologic anomaly of

> > neuroectoderm.

> > >> The prevalence of tonsillar ectopia to my knowledge has not been

> > studied.

> > >> The incidence of Chiari I malformations ranges from less than 1%to

> > 3% at

> > >> various tertiary centers. The occipital and exertional headache

> > associated

> > >> with this malformation can be observed in subjects who have new-onset

> > >> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

> > >> intracranial hypotension, lumboperitoneal shunting, or spontaneous

> > >> development [34-36]. This new-onset headache can remit with return

> > to normal

> > >> tonsil positioning. These findings support the proposal that pressure

> > >> dissociation gradients and perhaps traction of pain-sensitive

> > tissues play a

> > >> role in generation of the headache observed in this malformation. In

> > >> accordance with this idea, the extent of tonsillar descent is

> > irrelevant

> > >> alone,and the degree of posterior fossa hypoplasia and decrement of

> > CSF flow

> > >> velocity are better defining factors for determining the clinical

> > >> significance of tonsillar ectopia.

> > >>

> > >> PMID: 15062536 [PubMed - indexed for MEDLINE]

> > >> Publication Types, MeSH Terms

> > <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> > >> LinkOut - more resources

> <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> > >>

> > >> De: grams2faith <grams2faith@...

> <mailto:grams2faith%40yahoo.com>

> > <mailto:grams2faith%40yahoo.com>>

> > >> Responder a: <

> <mailto:%40yahoogroups.com>

> > <mailto:%40yahoogroups.com>>

> > >> Fecha: martes 8 de mayo de 2012 18:29

> > >> Para: <

> <mailto:%40yahoogroups.com>

> > <mailto:%40yahoogroups.com>>

> > >> Asunto: cerebellar tonsillar

> ectopia of

> > >> 7mm??

> > >>

> > >> Hello,

> > >> I recently read a report from an mri I had done in 2009 and it says

> > I have

> > >> this ectopia of 7mm. I was told this in 2009 and was told it was

> no big

> > >> deal. I saw my neurologist again and questioned him about this and

> > he said

> > >> it was no big deal and that it has nothing to do with chiari. The

> > reason I

> > >> am questioning this now is because my 5 year old granddaughter whom

> > I've

> > >> adopted was diagnosed with chiari type II recently and we have many

> > >> similarities. I have chronic migraines, neck pain, lower back pain,

> > lumbar

> > >> scholiosis, bladder issues, sinus issues and occasional numbness

> > /weakness

> > >> in my left leg. Is this neurologist right? Is tonsillar ectopia

> > different

> > >> from chiari and should I just ignore it? I'm really confused so any

> > help

> > >> would be appreciated.

> > >> Thank you!

> > >> Amy

> > >>

> > >>

[Guest guest]

Sara,hi...

I can certainly understand how you feel...but please don't stop answering

question on the forum.

I have to believe that the capitalization wasn't directed at you,

specifically. She said that she was posting quickly from her phone. Probably

not a good habit.... And many people really don't understand the impact of

capitalizing in an email. I have one dear friend who sends ALL her notes in

all Caps. ;-{ And I have tried to explain it to her.... Sigh....

Please keep expressing your knowledge and opinions.... we need to continue

helping one another.

All best wishes,

Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

pretty good on NO meds in Bethlehem,Pa

Re: cerebellar tonsillar ectopia of

7mm??

> Good grief people, I was simply stating what it written in the medical

> literature referencing the terms of tonsillar ectopia verses Chiari 1.

> I know first hand size doesn't matter. My child was decompressed at 17

> months of age with a 7mm herniation. She had one of the best

> neurosurgeons in the country who performed the surgery. To date, my

> child still does not walk, does not talk and cannot feed herself nor can

> she eat orally. My child is terminal.

>

> I will no longer answer questions on this forum. I do not need to be

> talked to with capitalization.

>

>

>

>>

>> SIZE DOESNT MATTER!!! It is Chiari if it is 2mm or 29mm

>> --

>> Sent from my Android phone with K-9 Mail. Please excuse my brevity.

>>

>> Sara Eaton <eatonfam1@... <mailto:eatonfam1%40msn.com>> wrote:

>>

>> Tonsillar ectopia is anything smaller than a 5mm herniation. It is the

>> pre-Chiari 1. Chiari 1 is anything larger than a 5mm herniation. Has

>> nothing to do with whether or not it is acquired or congenital. Hope

>> this helps.

>>

>> On 5/9/2012 9:02 AM, teamlasota@... <mailto:teamlasota%40MSN.COM>

>> wrote:

>> >

>> >

>> > Sent from my LG phone

>> >

>> > Yung <mrsbrendayung@... <mailto:mrsbrendayung%40gmail.com>

>> > <mailto:mrsbrendayung%40gmail.com>> wrote:

>> >

>> > >thank you for helping us understand that in earthly terms!

>> > >Bea

>> > >

>> > >

>> > >

>> > >

>> > >> Long ago I found this, as far as I understood, Tonsillar ectopia is

>> > when

>> > >> your tonsils descent not because you were born with it but

>> because you

>> > >> adquired it in an accident or something like that, but at the end

>> > both have

>> > >> the same symptoms, however in some cases the treatement is not

>> > necesarily

>> > >> surgery, like if you have a tonsillar descent just because you have

>> > a huge

>> > >> CSF leak due to a car accident, they can correct the leak and with

>> > this the

>> > >> tonsills will go up. So the question here is why do you have a

>> > tonsillar

>> > >> descent? Did you born with it or not? If you were like that since

>> > you are

>> > >> liittle it perhpas it is Chiari, if not then it is a tonsillar

>> descent.

>> > >>

>> > >>

>> > >> * Performing your original search, tonsillar ectopia, in PubMed will

>> > >> retrieve 93 records

>> > >>

>> >

>> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

>> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>

>>

>> >

>> <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

>>

<http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>>

>> > >> estion> .

>> > >>

>> > >>

>> > >>

>> > >>

>> > >>

>> > >>

>> > >>

>> > >> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

>> > >> Feb;22(1):229-36.

>> > >> Tonsillar ectopia and headaches.

>> > >> Arnett BC

>> > >>

>> >

>> <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

>> > >> Source

>> > >> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110,

>> > Flossmoor, IL

>> > >> 60422, USA. bridgette@...

>> <mailto:bridgette%40hotmail.com> <mailto:bridgette%40hotmail.com>

>> > >>

>> > >> Abstract

>> > >> Tonsillar ectopia, encompassing slight descent of the cerebellar

>> > tonsils and

>> > >> Chiari I malformations, are disorders observed routinely in older

>> > children

>> > >> and adults and are believed to be an acquired form of the Chiari

>> > >> malformations. This entity is different from the other Chiari

>> > malformations

>> > >> in that hydrocephalus plays no role in its evolution. More likely

>> > it is a

>> > >> disorder of para-axial mesoderm, characterized by posterior fossa

>> > hypoplasia

>> > >> and content overcrowding, and not an embryologic anomaly of

>> > neuroectoderm.

>> > >> The prevalence of tonsillar ectopia to my knowledge has not been

>> > studied.

>> > >> The incidence of Chiari I malformations ranges from less than 1%to

>> > 3% at

>> > >> various tertiary centers. The occipital and exertional headache

>> > associated

>> > >> with this malformation can be observed in subjects who have

>> > >> new-onset

>> > >> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

>> > >> intracranial hypotension, lumboperitoneal shunting, or spontaneous

>> > >> development [34-36]. This new-onset headache can remit with return

>> > to normal

>> > >> tonsil positioning. These findings support the proposal that

>> > >> pressure

>> > >> dissociation gradients and perhaps traction of pain-sensitive

>> > tissues play a

>> > >> role in generation of the headache observed in this malformation. In

>> > >> accordance with this idea, the extent of tonsillar descent is

>> > irrelevant

>> > >> alone,and the degree of posterior fossa hypoplasia and decrement of

>> > CSF flow

>> > >> velocity are better defining factors for determining the clinical

>> > >> significance of tonsillar ectopia.

>> > >>

>> > >> PMID: 15062536 [PubMed - indexed for MEDLINE]

>> > >> Publication Types, MeSH Terms

>> > <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

>> > >> LinkOut - more resources

>> <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

>> > >>

>> > >> De: grams2faith <grams2faith@...

>> <mailto:grams2faith%40yahoo.com>

>> > <mailto:grams2faith%40yahoo.com>>

>> > >> Responder a: <

>> <mailto:%40yahoogroups.com>

>> > <mailto:%40yahoogroups.com>>

>> > >> Fecha: martes 8 de mayo de 2012 18:29

>> > >> Para: <

>> <mailto:%40yahoogroups.com>

>> > <mailto:%40yahoogroups.com>>

>> > >> Asunto: cerebellar tonsillar

>> ectopia of

>> > >> 7mm??

>> > >>

>> > >> Hello,

>> > >> I recently read a report from an mri I had done in 2009 and it says

>> > I have

>> > >> this ectopia of 7mm. I was told this in 2009 and was told it was

>> no big

>> > >> deal. I saw my neurologist again and questioned him about this and

>> > he said

>> > >> it was no big deal and that it has nothing to do with chiari. The

>> > reason I

>> > >> am questioning this now is because my 5 year old granddaughter whom

>> > I've

>> > >> adopted was diagnosed with chiari type II recently and we have many

>> > >> similarities. I have chronic migraines, neck pain, lower back pain,

>> > lumbar

>> > >> scholiosis, bladder issues, sinus issues and occasional numbness

>> > /weakness

>> > >> in my left leg. Is this neurologist right? Is tonsillar ectopia

>> > different

>> > >> from chiari and should I just ignore it? I'm really confused so any

>> > help

>> > >> would be appreciated.

>> > >> Thank you!

>> > >> Amy

>> > >>

>> > >>

[Guest guest]

I just want to clarify. For those saying that it's the measurement of < 5mm is

why the radiologist calls it ectopia and not chiari. On my " non chiari protocol "

MRIs the measurement was 5mm on one and 6mm on the other. I believe this change

has to do on how my head was positioned on each one and the radiologist who read

it. For one I had a pillow and the other just a roll to help support my neck.

The final verdict using chiari protocol on the position of my head/neck during

the MRI was 7mm.

Debbie

> > >

> > >> Long ago I found this, as far as I understood, Tonsillar ectopia is

> > when

> > >> your tonsils descent not because you were born with it but because you

> > >> adquired it in an accident or something like that, but at the end

> > both have

> > >> the same symptoms, however in some cases the treatement is not

> > necesarily

> > >> surgery, like if you have a tonsillar descent just because you have

> > a huge

> > >> CSF leak due to a car accident, they can correct the leak and with

> > this the

> > >> tonsills will go up. So the question here is why do you have a

> > tonsillar

> > >> descent? Did you born with it or not? If you were like that since

> > you are

> > >> liittle it perhpas it is Chiari, if not then it is a tonsillar descent.

> > >>

> > >>

> > >> * Performing your original search, tonsillar ectopia, in PubMed will

> > >> retrieve 93 records

> > >>

> > <http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg

> >

<http://www.ncbi.nlm.nih.gov/pubmed?term=tonsillar%20ectopia & itool=QuerySugg>

> > >> estion> .

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >> Neurol Clin. <http://www.ncbi.nlm.nih.gov/pubmed/15062536#> 2004

> > >> Feb;22(1):229-36.

> > >> Tonsillar ectopia and headaches.

> > >> Arnett BC

> > >>

> > <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Arnett%20BC%22%5BAuthor%5D> .

> > >> Source

> > >> South Suburban Neurology, Ltd., 3235 Vollmer Road, Suite 110,

> > Flossmoor, IL

> > >> 60422, USA. bridgette@... <mailto:bridgette%40hotmail.com>

> > >>

> > >> Abstract

> > >> Tonsillar ectopia, encompassing slight descent of the cerebellar

> > tonsils and

> > >> Chiari I malformations, are disorders observed routinely in older

> > children

> > >> and adults and are believed to be an acquired form of the Chiari

> > >> malformations. This entity is different from the other Chiari

> > malformations

> > >> in that hydrocephalus plays no role in its evolution. More likely

> > it is a

> > >> disorder of para-axial mesoderm, characterized by posterior fossa

> > hypoplasia

> > >> and content overcrowding, and not an embryologic anomaly of

> > neuroectoderm.

> > >> The prevalence of tonsillar ectopia to my knowledge has not been

> > studied.

> > >> The incidence of Chiari I malformations ranges from less than 1%to

> > 3% at

> > >> various tertiary centers. The occipital and exertional headache

> > associated

> > >> with this malformation can be observed in subjects who have new-onset

> > >> tonsillar ectopia resulting from repeated lumbar puncture,idiopathic

> > >> intracranial hypotension, lumboperitoneal shunting, or spontaneous

> > >> development [34-36]. This new-onset headache can remit with return

> > to normal

> > >> tonsil positioning. These findings support the proposal that pressure

> > >> dissociation gradients and perhaps traction of pain-sensitive

> > tissues play a

> > >> role in generation of the headache observed in this malformation. In

> > >> accordance with this idea, the extent of tonsillar descent is

> > irrelevant

> > >> alone,and the degree of posterior fossa hypoplasia and decrement of

> > CSF flow

> > >> velocity are better defining factors for determining the clinical

> > >> significance of tonsillar ectopia.

> > >>

> > >> PMID: 15062536 [PubMed - indexed for MEDLINE]

> > >> Publication Types, MeSH Terms

> > <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> > >> LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/15062536#>

> > >>

> > >> De: grams2faith <grams2faith@...

> > <mailto:grams2faith%40yahoo.com>>

> > >> Responder a: <

> > <mailto:%40yahoogroups.com>>

> > >> Fecha: martes 8 de mayo de 2012 18:29

> > >> Para: <

> > <mailto:%40yahoogroups.com>>

> > >> Asunto: cerebellar tonsillar ectopia of

> > >> 7mm??

> > >>

> > >> Hello,

> > >> I recently read a report from an mri I had done in 2009 and it says

> > I have

> > >> this ectopia of 7mm. I was told this in 2009 and was told it was no big

> > >> deal. I saw my neurologist again and questioned him about this and

> > he said

> > >> it was no big deal and that it has nothing to do with chiari. The

> > reason I

> > >> am questioning this now is because my 5 year old granddaughter whom

> > I've

> > >> adopted was diagnosed with chiari type II recently and we have many

> > >> similarities. I have chronic migraines, neck pain, lower back pain,

> > lumbar

> > >> scholiosis, bladder issues, sinus issues and occasional numbness

> > /weakness

> > >> in my left leg. Is this neurologist right? Is tonsillar ectopia

> > different

> > >> from chiari and should I just ignore it? I'm really confused so any

> > help

> > >> would be appreciated.

> > >> Thank you!

> > >> Amy

> > >>

> > >>

[Guest guest]

Aimee

Lmao! That made me laugh, thank you!! " a little bit pregnant "

It reminds me of when the surgeon told me my spinal cord was only " slightly "

tethered. Huh? I thought to myself " is there really a difference. Needles to

say, when he finally did agree to the surgery, it shot like a rubber band. Guess

I'm lucky it was only " slightly " tethered or it may of shot right out of my

body! Lol!

I've learned to try and laugh every now and again at these disorders and

doctors. While none of it really is a joking matter, finding the lighter side of

things and being able to laugh really is good for the mind, body, and soul

Debbie

Sent from my iPhone

[Guest guest]

Well thank you all for your helpful information. I guess I am going to have to

find a new doctor. This one sent me home with more migraine meds and only agreed

to do an mri on my brain to follow up on a cyst I have on my brain. He

completely ruled out even doing an mri on my spine when I asked for one. I guess

I'm in for a lot of changes because I'm sick of headaches and being in bed more

than I should be! Thank you all for helpling me not to feel crazy! I'm sure I'll

have many more questions to come!

Amy

>

> Hello,

> I recently read a report from an mri I had done in 2009 and it says I have

this ectopia of 7mm. I was told this in 2009 and was told it was no big deal. I

saw my neurologist again and questioned him about this and he said it was no big

deal and that it has nothing to do with chiari. The reason I am questioning this

now is because my 5 year old granddaughter whom I've adopted was diagnosed with

chiari type II recently and we have many similarities. I have chronic migraines,

neck pain, lower back pain, lumbar scholiosis, bladder issues, sinus issues

and occasional numbness /weakness in my left leg. Is this neurologist right? Is

tonsillar ectopia different from chiari and should I just ignore it? I'm really

confused so any help would be appreciated.

> Thank you!

> Amy

>