Re: Speech

August 7, 2011

I see you mentioned neurontin.When I was on the max dose I had vertigo, trouble

with numbers and speech. I cut down my dose and am doing

better.Â AlliterativelyÂ you want to make sure you are taking it exactly every 8

hours. I sometimes would take every 7 etc because I was not paying attention.

Subject: Speech

To:

Date: Saturday, August 6, 2011, 12:24 PM

Â

I have had difficulties with speech, too. I think we've discussed before.

I

twist up letters, have problems " spitting my words out " and even worse, I'm

finding I'm substituting the wrong word for things. For example, I wanted to

call salad dressing. . . get this. . . lotion! I guess that's lotion for the

lettuce. I want to call a diagram a map and a menu for a calendar. Good

grief.

My neurologist said the same thing that a different part of the brain

affects speech. I told her that Chiarians complain about this, so I feel it

is connected or am I just getting old???

She also mentioned Neurontin possibly causing this. I have had the twisted

letters for many years, so that is not the cause of that, but the word

substitution is more recent and creepy! After all, I am a writer! Ugh.

The thought just passed through that this question must be addressed

somewhere on the Internet, but I don't have time to look!

Suzanne

August 7, 2011

I am not on neurotin but am having major challenges with my speech and words. Of

late, I have been substituting incorrect names of items in my conversation.

Sometimes, I don't even notice I've done it until someone points it out. Most

of the time, I just cannot remember the name of an object. To be honest, it is

scaring me a little. It is very important that I present myself as having my act

together when speaking with business associates and this does NOT help me.

I also have a colloid cyst growing in my third ventricle and was blaming it for

my word challenges. So much for that theory.

>

> I have had difficulties with speech, too. I think we've discussed before. I

> twist up letters, have problems " spitting my words out " and even worse, I'm

> finding I'm substituting the wrong word for things. For example, I wanted to

> call salad dressing. . . get this. . . lotion! I guess that's lotion for the

> lettuce. I want to call a diagram a map and a menu for a calendar. Good

> grief.

>

> My neurologist said the same thing that a different part of the brain

> affects speech. I told her that Chiarians complain about this, so I feel it

> is connected or am I just getting old???

>

> She also mentioned Neurontin possibly causing this. I have had the twisted

> letters for many years, so that is not the cause of that, but the word

> substitution is more recent and creepy! After all, I am a writer! Ugh.

>

> The thought just passed through that this question must be addressed

> somewhere on the Internet, but I don't have time to look!

>

> Suzanne

>

August 8, 2011

Hi all:

I'm a neuropsychology student with Chiari, not yet decompressed. I'm not on

Neurontin (but I do agree meds/this med this can contribute to a global type of

confusion in general which may lead to speech mistakes) but am chiming in for

several reasons. However, I have to start off by saying you can look up some of

the below if you are interested, but this is my opinion.. it is based on fact

and what I know and have learned but I am not a doctor and you should definitely

not take anything below to heart. It's my opinion and my experience only.

I have the same problems - groping for words, using the incorrect words.. these

are 'production' problems in speech (as opposed to comprehension) - on the

books. I've been told the same by my neurologists who are chiari specialists--

that there's no good reason for the cognitive/speech/word finding problems so

many of us mention in relation to chiari. I've looked for research on the

internet and there really is none. There IS a girl who did her masters thesis on

chiari in children but in was in the context of special needs and individual

learning plans, that type of thing.

I can say that there's also no good reason for the people who have idiopathic

ICP (many ppl with chiari, myself included, have raised intracranial pressure

due to the obstruction of CSF due to the herniation). There is a very very fine

balance of things in the brain (and body overall) but my thought is - which is

not yet based on science - the compression and raised pressure, while not

causing direct damage to areas of language in the brain - is still somehow

affecting those areas. It could be the cranial nerve compression aspect, it

could be just the delicate balance of the brain being disrupted.. who knows. I

would not feel comfortable blaming it entirely on neurontin. And there's too

many ppl talking about the same symptoms for this to not be related. Also, look

how many people complain about their memory - yet the docs say too on that (in

my experience) that there's no reason that people with Chiari have problems with

their memory - yet it seems like a big complaint in a lot of people and one of

the questions the specialists ask right away (at least at TCI).

It's not 100% clear but for example, in neuropsychology, I learned we learn more

about the brain, its functioning, and any impairment from the TYPE of mistakes

that people make, especially when it comes to language. For years there's been

no other way so there is a lot of scientific research out there on this.

Suzanne, your use of lotion and not salad dressing, especially when you don't

realize you're making the error, is similar to (but not quite, certainly not

trying to scare you, I do not have my doctorate and am not qualified here at all

in this context) Wernicke's aphasia. There's an area in the brain called

wernicke's area that when damaged, injured, or not functioning correctly, causes

people to make these types of mistakes (plus lots others, so don't worry or

panic, just using as an example). Wernicke's area is a totally different area

than Broca's area - these are the two famous areas of the brain responsible for

language that show very specific patterns when they are damaged across all

people.

The people I speak to (and what I notice in myself) seem to report alot of

speech errors. Whether they are what's called on the books 'lexical exchanges'

ie salad lotion instead of salad dressing, hockey bat instead of hockey stick or

'morpheme exchanges' - meaning to say 'I got my car repainted' and instead

saying 'I got my paint re-carred' - it just seems Chiarians (with or without

meds) make more of these types of speech errors than the normal population. That

being said, EVERYONE makes speech errors from time to time, and it's perfectly

normal. I just don't buy that Chiari doesn't affect language production if not

also comprehension at times too. I don't see a lot of literature out there on

it. And no, I don't think the docs are willing to talk about it too much bc

there's not enough hard science out there on it nor is there enough funding to

really get into it and see what's what.

Sorry to be all nerdy on a Sunday but it's just something that bugs me to death

too - from an academic standpoint AND a personal one. It is very frustrating not

to be able to say what you want... but then that's actually not nearly the worst

aspect of Chiari (or life) when you really think about it, and we're lucky

overall that whether we can get the words out or not, at least if you are

willing or able to laugh at yourself on SOME days.. that's better than nothing..

and you have plenty of company

I'd love one day to do a study on this... if I do, I will let you all know! But

no.. we're not crazy (on this topic at least!).

To:

From: amymdit@...

Date: Sun, 7 Aug 2011 15:24:39 +0000

Subject: Re: Speech

I am not on neurotin but am having major challenges with my speech and

words. Of late, I have been substituting incorrect names of items in my

conversation. Sometimes, I don't even notice I've done it until someone points

it out. Most of the time, I just cannot remember the name of an object. To be

honest, it is scaring me a little. It is very important that I present myself as

having my act together when speaking with business associates and this does NOT

help me.

I also have a colloid cyst growing in my third ventricle and was blaming it for

my word challenges. So much for that theory.

>

> I have had difficulties with speech, too. I think we've discussed before. I

> twist up letters, have problems " spitting my words out " and even worse, I'm

> finding I'm substituting the wrong word for things. For example, I wanted to

> call salad dressing. . . get this. . . lotion! I guess that's lotion for the

> lettuce. I want to call a diagram a map and a menu for a calendar. Good

> grief.

>

> My neurologist said the same thing that a different part of the brain

> affects speech. I told her that Chiarians complain about this, so I feel it

> is connected or am I just getting old???

>

> She also mentioned Neurontin possibly causing this. I have had the twisted

> letters for many years, so that is not the cause of that, but the word

> substitution is more recent and creepy! After all, I am a writer! Ugh.

>

> The thought just passed through that this question must be addressed

> somewhere on the Internet, but I don't have time to look!

>

> Suzanne

>

August 8, 2011

I don't know what kind of aphasia it is, but aphasia runs in my family.

I've done it to one degree or another all my life. My Mom has it too along

with something similar that impacts her ability to get names right - she

never had problems with my sister's name but calling me or her sister/my

aunt always ended up being like role call (I inherited that one too, thanks

Mom). All neurologists have ever done is say " yup, it's aphasia " . They've

also said that the average anti-seizure med can cause or worsen aphasia as a

side effect. Does that make things clear as mud. I swear some of my

conversations feel more like a game of charades. And people who know me

wonder why I prefer to " talk " by computer...it's because I don't have nearly

so much trouble getting the words out when I write. Dyslexia is still a

problem, but not the aphasia (go figure). Also if I get the least bit

anxious (and I'm prone to social anxiety), the aphasia kicks into

overdrive...yet another reason just to type.

My Mom has a lot of the odd neuro things in common with me along with being

a " klutz " like I am. I'd love to have a chance to find out if she has

chiari too. I only found out by accident in the process of looking for any

" reason " for migraines that had gotten really frequent...

Dee

> **

>

> Hi all:

>

> I'm a neuropsychology student with Chiari, not yet decompressed. I'm not on

> Neurontin (but I do agree meds/this med this can contribute to a global type

> of confusion in general which may lead to speech mistakes) but am chiming in

> for several reasons. However, I have to start off by saying you can look up

> some of the below if you are interested, but this is my opinion.. it is

> based on fact and what I know and have learned but I am not a doctor and you

> should definitely not take anything below to heart. It's my opinion and my

> experience only.

>

> I have the same problems - groping for words, using the incorrect words..

> these are 'production' problems in speech (as opposed to comprehension) - on

> the books. I've been told the same by my neurologists who are chiari

> specialists-- that there's no good reason for the cognitive/speech/word

> finding problems so many of us mention in relation to chiari. I've looked

> for research on the internet and there really is none. There IS a girl who

> did her masters thesis on chiari in children but in was in the context of

> special needs and individual learning plans, that type of thing.

>

> I can say that there's also no good reason for the people who have

> idiopathic ICP (many ppl with chiari, myself included, have raised

> intracranial pressure due to the obstruction of CSF due to the herniation).

> There is a very very fine balance of things in the brain (and body overall)

> but my thought is - which is not yet based on science - the compression and

> raised pressure, while not causing direct damage to areas of language in the

> brain - is still somehow affecting those areas. It could be the cranial

> nerve compression aspect, it could be just the delicate balance of the brain

> being disrupted.. who knows. I would not feel comfortable blaming it

> entirely on neurontin. And there's too many ppl talking about the same

> symptoms for this to not be related. Also, look how many people complain

> about their memory - yet the docs say too on that (in my experience) that

> there's no reason that people with Chiari have problems with their memory -

> yet it seems like a big complaint in a lot of people and one of the

> questions the specialists ask right away (at least at TCI).

>

> It's not 100% clear but for example, in neuropsychology, I learned we learn

> more about the brain, its functioning, and any impairment from the TYPE of

> mistakes that people make, especially when it comes to language. For years

> there's been no other way so there is a lot of scientific research out there

> on this.

>

> Suzanne, your use of lotion and not salad dressing, especially when you

> don't realize you're making the error, is similar to (but not quite,

> certainly not trying to scare you, I do not have my doctorate and am not

> qualified here at all in this context) Wernicke's aphasia. There's an area

> in the brain called wernicke's area that when damaged, injured, or not

> functioning correctly, causes people to make these types of mistakes (plus

> lots others, so don't worry or panic, just using as an example). Wernicke's

> area is a totally different area than Broca's area - these are the two

> famous areas of the brain responsible for language that show very specific

> patterns when they are damaged across all people.

>

> The people I speak to (and what I notice in myself) seem to report alot of

> speech errors. Whether they are what's called on the books 'lexical

> exchanges' ie salad lotion instead of salad dressing, hockey bat instead of

> hockey stick or 'morpheme exchanges' - meaning to say 'I got my car

> repainted' and instead saying 'I got my paint re-carred' - it just seems

> Chiarians (with or without meds) make more of these types of speech errors

> than the normal population. That being said, EVERYONE makes speech errors

> from time to time, and it's perfectly normal. I just don't buy that Chiari

> doesn't affect language production if not also comprehension at times too. I

> don't see a lot of literature out there on it. And no, I don't think the

> docs are willing to talk about it too much bc there's not enough hard

> science out there on it nor is there enough funding to really get into it

> and see what's what.

>

> Sorry to be all nerdy on a Sunday but it's just something that bugs me to

> death too - from an academic standpoint AND a personal one. It is very

> frustrating not to be able to say what you want... but then that's actually

> not nearly the worst aspect of Chiari (or life) when you really think about

> it, and we're lucky overall that whether we can get the words out or not, at

> least if you are willing or able to laugh at yourself on SOME days.. that's

> better than nothing.. and you have plenty of company

>

> I'd love one day to do a study on this... if I do, I will let you all know!

> But no.. we're not crazy (on this topic at least!).

>

August 8, 2011

,

I have Chiari and I also have speech problems and I always say one thing

instead ot the other I want to say. I am also studying neuropsychology but

from the perspective of education, this is, how to educate children taking

into consideration their brain development in order to improve it, intercede

or use critical periods to get better outcomes. I have been studying these

for many years, I have a PHD in education.

I really believe Chiari impacts language because of my experience.

This are the speech problems I have:

1. I imagine the thing, I have the actual representation of the thing, but

I can not say the word it represents, it does not come to my mind. At the

beginning my children were crazy trying to understand what I was trying to

say, like for example: while eating I say: please give me the chalk, instead

of please give me the butter. Now they understand it is my current deficit

and now they put the words on my mouth and try to guess it!!!

2. This happens with people too, I know their faces, I know who they are,

but I can not say their names, and this happens with people I know for a

long time. I remember the first time this happens, like 18 years ago with a

friend I use to work everyday!!! I could not remember his name!!! I was

crazy now I can remember it was just for a moment, but in this moment I

suffered I could not say it!!!

3. I can not learn new words easily, I can learn the concept, the

representation but not the word, I have to write them down, imagine ways of

representing them visually so they stay in my mind, this is because I am

trying to use other pathways, if verbal paths are not there I think: perhaps

visual could help.

4. This gets worst when I do not eat well I have think that there is a

problem with glucose, as it gets worst when I do not east very often, this

means that I have to eat 4 or 5 times per day, this is why I eat fruit and

nuts between meals, so I do not get fat.

5. All these improved after decompression surgery, but not enough to be

cured!!!

6. It was worst with out the lumbar shunt, this means I really thin, it is

high intracranial hypertension is related to it too. After the four

surgeries I had, the first 3 days in which I did not have enough CSF as it

comes back to normal until de third day, or even the first week, all the

speech problems disappeared, so yes high ICP must pressure some language

areas.

I have known people with Chiari that after decompression have said: my words

are coming back, I can say the name of things!! At least I know 2 of them.

There is also some articles about children language delay in Chiari and when

I went to the TCI, there was a student there trying to identify the

relationship between Chiari and language issues, she applied to me some

tests but at the end I was not a proper subject for her research as my first

language is Spanish so I could not say many things in English at that

moment, so this was a variable that affected or increased problems so she

could not measured me really.

I hope this serves.

Date: Sun, 7 Aug 2011 18:07:12 -0400

To: <chiariconnectioninternational >

Subject: RE: Re: Speech

Hi all:

I'm a neuropsychology student with Chiari, not yet decompressed. I'm not on

Neurontin (but I do agree meds/this med this can contribute to a global type

of confusion in general which may lead to speech mistakes) but am chiming in

for several reasons. However, I have to start off by saying you can look up

some of the below if you are interested, but this is my opinion.. it is

based on fact and what I know and have learned but I am not a doctor and you

should definitely not take anything below to heart. It's my opinion and my

experience only.

I have the same problems - groping for words, using the incorrect words..

these are 'production' problems in speech (as opposed to comprehension) - on

the books. I've been told the same by my neurologists who are chiari

specialists-- that there's no good reason for the cognitive/speech/word

finding problems so many of us mention in relation to chiari. I've looked

for research on the internet and there really is none. There IS a girl who

did her masters thesis on chiari in children but in was in the context of

special needs and individual learning plans, that type of thing.

I can say that there's also no good reason for the people who have

idiopathic ICP (many ppl with chiari, myself included, have raised

intracranial pressure due to the obstruction of CSF due to the herniation).

There is a very very fine balance of things in the brain (and body overall)

but my thought is - which is not yet based on science - the compression and

raised pressure, while not causing direct damage to areas of language in the

brain - is still somehow affecting those areas. It could be the cranial

nerve compression aspect, it could be just the delicate balance of the brain

being disrupted.. who knows. I would not feel comfortable blaming it

entirely on neurontin. And there's too many ppl talking about the same

symptoms for this to not be related. Also, look how many people complain

about their memory - yet the docs say too on that (in my experience) that

there's no reason that people with Chiari have problems with their memory -

yet it seems like a big complaint in a lot of people and one of the

questions the specialists ask right away (at least at TCI).

It's not 100% clear but for example, in neuropsychology, I learned we learn

more about the brain, its functioning, and any impairment from the TYPE of

mistakes that people make, especially when it comes to language. For years

there's been no other way so there is a lot of scientific research out there

on this.

Suzanne, your use of lotion and not salad dressing, especially when you

don't realize you're making the error, is similar to (but not quite,

certainly not trying to scare you, I do not have my doctorate and am not

qualified here at all in this context) Wernicke's aphasia. There's an area

in the brain called wernicke's area that when damaged, injured, or not

functioning correctly, causes people to make these types of mistakes (plus

lots others, so don't worry or panic, just using as an example). Wernicke's

area is a totally different area than Broca's area - these are the two

famous areas of the brain responsible for language that show very specific

patterns when they are damaged across all people.

The people I speak to (and what I notice in myself) seem to report alot of

speech errors. Whether they are what's called on the books 'lexical

exchanges' ie salad lotion instead of salad dressing, hockey bat instead of

hockey stick or 'morpheme exchanges' - meaning to say 'I got my car

repainted' and instead saying 'I got my paint re-carred' - it just seems

Chiarians (with or without meds) make more of these types of speech errors

than the normal population. That being said, EVERYONE makes speech errors

from time to time, and it's perfectly normal. I just don't buy that Chiari

doesn't affect language production if not also comprehension at times too. I

don't see a lot of literature out there on it. And no, I don't think the

docs are willing to talk about it too much bc there's not enough hard

science out there on it nor is there enough funding to really get into it

and see what's what.

Sorry to be all nerdy on a Sunday but it's just something that bugs me to

death too - from an academic standpoint AND a personal one. It is very

frustrating not to be able to say what you want... but then that's actually

not nearly the worst aspect of Chiari (or life) when you really think about

it, and we're lucky overall that whether we can get the words out or not, at

least if you are willing or able to laugh at yourself on SOME days.. that's

better than nothing.. and you have plenty of company

I'd love one day to do a study on this... if I do, I will let you all know!

But no.. we're not crazy (on this topic at least!).

To:

<mailto:%40yahoogroups.com>

From: amymdit@... <mailto:amymdit%40yahoo.com>

Date: Sun, 7 Aug 2011 15:24:39 +0000

Subject: Re: Speech

I am not on neurotin but am having major challenges with my speech and

words. Of late, I have been substituting incorrect names of items in my

conversation. Sometimes, I don't even notice I've done it until someone

points it out. Most of the time, I just cannot remember the name of an

object. To be honest, it is scaring me a little. It is very important that I

present myself as having my act together when speaking with business

associates and this does NOT help me.

I also have a colloid cyst growing in my third ventricle and was blaming it

for my word challenges. So much for that theory.

>

> I have had difficulties with speech, too. I think we've discussed before. I

> twist up letters, have problems " spitting my words out " and even worse, I'm

> finding I'm substituting the wrong word for things. For example, I wanted to

> call salad dressing. . . get this. . . lotion! I guess that's lotion for the

> lettuce. I want to call a diagram a map and a menu for a calendar. Good

> grief.

>

> My neurologist said the same thing that a different part of the brain

> affects speech. I told her that Chiarians complain about this, so I feel it

> is connected or am I just getting old???

>

> She also mentioned Neurontin possibly causing this. I have had the twisted

> letters for many years, so that is not the cause of that, but the word

> substitution is more recent and creepy! After all, I am a writer! Ugh.

>

> The thought just passed through that this question must be addressed

> somewhere on the Internet, but I don't have time to look!

>

> Suzanne

>

August 8, 2011

,

Thank you very much for the information. It is even MORE comforting knowing a

Doctoral student has the same issues! I will need to spend some time researching

aphasia so I can understand it better.

On a side note, I've had two neuro psych exams in the past 10 years (give or

take) and am always fascinated with the results. I do feel it would be

beneficial if a test was created for Chiari patients. In both exams, I almost

felt as if the doctors were minimizing my complaints since I didn't score as low

in certain areas as they expected.

>

> >

>

> > I have had difficulties with speech, too. I think we've discussed before. I

>

> > twist up letters, have problems " spitting my words out " and even worse, I'm

>

> > finding I'm substituting the wrong word for things. For example, I wanted to

>

> > call salad dressing. . . get this. . . lotion! I guess that's lotion for the

>

> > lettuce. I want to call a diagram a map and a menu for a calendar. Good

>

> > grief.

>

> >

>

> >

>

> >

>

> > My neurologist said the same thing that a different part of the brain

>

> > affects speech. I told her that Chiarians complain about this, so I feel it

>

> > is connected or am I just getting old???

>

> >

>

> >

>

> >

>

> > She also mentioned Neurontin possibly causing this. I have had the twisted

>

> > letters for many years, so that is not the cause of that, but the word

>

> > substitution is more recent and creepy! After all, I am a writer! Ugh.

>

> >

>

> >

>

> >

>

> > The thought just passed through that this question must be addressed

>

> > somewhere on the Internet, but I don't have time to look!

>

> >

>

> >

>

> >

>

> > Suzanne

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

August 8, 2011

I have a brain injury and have problems with short term memory, word

finding, problems following conversations, etc. It is interesting how

many of the issues mentioned sound like those caused by a brain

injury. I wonder if issues caused by chiari tend to be temporary or

permanent. I imagine the word problems would vary in those with

intracranial fluid issues.

One of the weird issues with words I've noticed, if I am looking at

something I will use its name instead of the word I meant to say.

Any questions ask, I'm not shy. Take care of you, you're important to me.

Big gentle huggles,

Di (Dimntd) in Feasterville-Trevose, PA, USA )

http://www.facebook.com/dimntd look for the 2 dogs in the grass.

Be the person your pets think you are.

,

I have Chiari and I also have speech problems and I always say one

thing instead ot the other I want to say. I am also studying

neuropsychology but from the perspective of education, this is, how

to educate children taking into consideration their brain

development in order to improve it, intercede or use critical

periods to get better outcomes. I have been studying these for many

years, I have a PHD in education.

I really believe Chiari impacts language because of my experience.

This are the speech problems I have:

1. I imagine the thing, I have the actual representation of the

thing, but I can not say the word it represents, it does not come

to my mind. At the beginning my children were crazy trying to

understand what I was trying to say, like for example: while eating

I say: please give me the chalk, instead of please give me the

butter. Now they understand it is my current deficit and now they

put the words on my mouth and try to guess it!!! 2. This happens

with people too, I know their faces, I know who they are, but I can

not say their names, and this happens with people I know for a long

time. I remember the first time this happens, like 18 years ago

with a friend I use to work everyday!!! I could not remember his

name!!! I was crazy now I can remember it was just for a moment,

but in this moment I suffered I could not say it!!! 3. I can not

learn new words easily, I can learn the concept, the representation

but not the word, I have to write them down, imagine ways of

representing them visually so they stay in my mind, this is because

I am trying to use other pathways, if verbal paths are not there I

think: perhaps visual could help. 4. This gets worst when I do not

eat well I have think that there is a problem with glucose, as it

gets worst when I do not east very often, this means that I have to

eat 4 or 5 times per day, this is why I eat fruit and nuts between

meals, so I do not get fat. 5. All these improved after

decompression surgery, but not enough to be cured!!! 6. It was

worst with out the lumbar shunt, this means I really thin, it is

high intracranial hypertension is related to it too. After the

four surgeries I had, the first 3 days in which I did not have

enough CSF as it comes back to normal until de third day, or even

the first week, all the speech problems disappeared, so yes high

ICP must pressure some language areas.

I have known people with Chiari that after decompression have said:

my words are coming back, I can say the name of things!! At least I

know 2 of them. There is also some articles about children language

delay in Chiari and when I went to the TCI, there was a student

there trying to identify the relationship between Chiari and

language issues, she applied to me some tests but at the end I was

not a proper subject for her research as my first language is

Spanish so I could not say many things in English at that moment,

so this was a variable that affected or increased problems so she

could not measured me really.

I hope this serves.

August 8, 2011

In my case it is not that I have forgotten the word or naming something

forever, it is just temporally sometimes I do not remember a word and then

it comes back, I always try to fix it and I try to find the word by myself,

and I have tell my boys no to help me until I can do ti by my self, but

sometimes I have to ask for help as the word does not come in the moment I

need them. Si they guess what I want. Some days I am better than others, and

definitively high ICP is related.

Reply-To:

Date: Mon, 08 Aug 2011 14:38:06 -0400

To: YG chiari

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