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

[Guest guest]

Hello and thank you for the article. I understand what it says. I still have a

problem with the report from my mri in 2009 that says I have tonsillar ectopia.

I've never had a head injury. I've had debilitating headaches since I was a

small child and the fact that my granddaughter has chiari type II just make me

wonder how they came up with this diagnosis for me. I will be having a repeat

MRI for the cyst on my brain this week but instead of going to the neurologist I

am following up with a neurosurgeon who deals with chiari. Hopefully he will be

able to figure it out and explain it to me! I will post as soon as I have some

answers. Thank you so much!!

Amy

> >> > >

> >> > >> 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

> >> > >>

> >> > >>

[Guest guest]

Thank you Sally! I will look into the cyst info too. I've had it for years and

just do mri's every 2 to 3 years to keep an eye on it. I'm really glad I found

this group. I'm learning a lot!

Take care,

Amy

> > >> > >

> > >> > >> 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

> > >> > >>

> > >> > >>