The need to learn doctor's language, about cerebellar tonsillar ectopia an Chiari differences

[Guest guest]

I have seen all the discussion about tonsillar ectopia, and I insist on

reading the article I have sent. After reading it, I really think that there

is a difference between tonsillar ectopia and Chiari, it is not because of

the size of the tonsillar descent, it is because of the cause, eventhough

the treatment could be the same pending on damages. In the article I have

sent to all of you, you can see if you read it carefully that it says that

size does not matter but the cause does.I have highllghted the important

facts the article mentioned. This article is in favor of what we have been

sayinng for a long time, that size does not matter, but it also it says they

are slight differences betweenn born with it, or adquired it by any kind of

accident. I really think that the more we learn about the subject the better

will be for all of us, this enhables us to defend our cause better, but we

need to understand the doctors logic and language. A slight difference in

language would also help us. I reemember at the begining of my own struggle

saying to many doctors: but the CSF is not comming down!! And all of them

showed the MRIs to me, look here it is!! As you can see the white circles

all around the atlas and C2. They always told me if the CSF does not come

down, you will have hidrocephalus and you do not have it. So what I learned

was that the problem was the language I was using. I have to be more

accurate. So I change the strategy and I said: The CSF it is not comming

down in the velocity it should and then used the CINI MRI to expliain it..

Then everything changed and they started to understand a little. Please see

the article.

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: Sally R

Responder a: < >

Fecha: miércoles 9 de mayo de 2012 23:00

Para: < >

CC: Sally R

Asunto: Re: cerebellar tonsillar ectopia of

7mm??

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>

<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>

<mailto:teamlasota%40MSN.COM>

>> wrote:

>> >

>> >

>> > Sent from my LG phone

>> >

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

<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> <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>

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

>> > >> Responder a: <

<mailto:%40yahoogroups.com>

>> <mailto:%40yahoogroups.com>

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

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

>> > >> Para: <

<mailto:%40yahoogroups.com>

>> <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

>> > >>

>> > >>