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Re: (seemingly) blaming all on tc

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Posted
Posted

I agree with Kathy. I have several different conditions that were not caused by

my TSC but have been made worse by the condition. I suffer from osteoporosis

which caused by cord to retether after my first surgery, per my neurosurgeon. I

have a neurogenic bladder which is caused by nerve damage and that is not even

mentioning the pain I endure daily because of all this. Although not all this is

caused by TCS it is made worse by the disease. I totally feel empathy for all

the people that suffer with this disease. By the way I also have Spina Bifida

which IS the cause of the TCS.

To: tetheredspinalcord

From: kmoulton@...

Date: Sat, 9 Apr 2011 23:29:10 -0400

Subject: (seemingly) blaming all on tc

Hi ,

Your blanket statement: " It seems that in (sic) this forum someone will try to

pin everything on TC. " was an unnecessary put-down to all members (my viewpoint

of your statement). There have been members that have been diagnosed with other

neurological disorders that have distinctive symptoms that cross over to tc yet

need a different treatment plan. We've had a member pass away from Lou Gherig's

disease, I know we have at least one member that has MS and tethered cord (MS

dx'ed long after the tether), along with a host of other seemingly non-related

neurological diseases.

Chiari can cause eye problems and when you are beginning your learning curve for

this condition, it is overwhelming and not everyone is able to weed through the

host of problems that can arise from a tethered cord, especially when

complicated with other conditions such as Chiari. A simple question was asked

and your answer with sage advice that it may be age-related is suffice.

What may seem obvious to us as age-related or how someone lives (eg: very

overweight with increasing back pain) may cause someone else undue stress and

worry. Instead of making a nice comment that is only masked condemnation, why

not just leave it at the help and also add your view in a positive tone?

I think it's great that you shared that you have age-related eye floaters and

suggested that this may be the cause vs. Chiari or tether, but the statement

that members of this " forum " tend to blame all on their problems on their

diagnosis goes overboard. Empathy and education is key along with calm

assistance to someone that there could be many other benign reasons for symptoms

they are experiencing.

We don't all blame everything on our medical dx of tethered cord and/or Chiari -

some go the other way and blame truly related symptoms on other issues;

ignorance is bliss theory. I just believe the person concerned was sincere and

we don't know where they are with their education of their condition. We can do

more by helping than demeaning with this situation. My patience runs short at

times, but if someone is truly trying to educate themselves, making the member

try to feel small or a hypochondriac is not going to help anyone.

Kathy

<Snip> It seems that in this forum someone will try tp pin

everything on TC. Some things as just the natural progress (or regress) of

aging. I also have cataracts, but would certainly not try to blame them on TC.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 12:34:18 PM

Subject: Re: Eye issues and Tethered Cord

Generally speaking, I do have to say that it does point to more of a Chiari

isse rather than Tethered Cord. Because

with alot of the eye issues with Chiari, it isn't that there is a problem

with the Eyes themselves, it is more that

the Brain is intrupting things different and it mimics an eye issue (Hope

that made sense). However, I do have

to say, I can see how it could be a Tethered Cord issue as

well......especially if it was a very tight Tether, more of

an extreme case.

Brande

mymocha@...

> In response to Brande and the question with eye issues and tethered

> cord... I started seeing black floaters at the same time that the pain in

> my heels and arches started. Both started at the exact same time, and the

> floaters are black squiggly/cobweb type things.

>

> Given my connective tissue disorder, I went to the ophthalmologist to rule

> out a retinal tear, and the ophthalmologist said that my eyes could not be

> any healthier. So, my question to the group is, is this more of a Chiari

> symptom, or more of a cord symptom like Brande was wondering?

>

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Posted
Posted

I was a bit offended also. I have tons of other symptoms and in some way they

have been brought on by TC. Maybe due to stress on my body or mind, but they

were never there before. And I'm 28, so I don't think aging has anything to do

with it. 

Subject: RE: (seemingly) blaming all on tc

To: tetheredspinalcord

Date: Monday, April 11, 2011, 6:49 AM

I agree with Kathy. I have several different conditions that were not caused by

my TSC but have been made worse by the condition. I suffer from osteoporosis

which caused by cord to retether after my first surgery, per my neurosurgeon. I

have a neurogenic bladder which is caused by nerve damage and that is not even

mentioning the pain I endure daily because of all this. Although not all this is

caused by TCS it is made worse by the disease. I totally feel empathy for all

the people that suffer with this disease. By the way I also have Spina Bifida

which IS the cause of the TCS.

To: tetheredspinalcord

From: kmoulton@...

Date: Sat, 9 Apr 2011 23:29:10 -0400

Subject: (seemingly) blaming all on tc

 

Hi ,

Your blanket statement: " It seems that in (sic) this forum someone will try to

pin everything on TC. " was an unnecessary put-down to all members (my viewpoint

of your statement). There have been members that have been diagnosed with other

neurological disorders that have distinctive symptoms that cross over to tc yet

need a different treatment plan. We've had a member pass away from Lou Gherig's

disease, I know we have at least one member that has MS and tethered cord (MS

dx'ed long after the tether), along with a host of other seemingly non-related

neurological diseases.

Chiari can cause eye problems and when you are beginning your learning curve for

this condition, it is overwhelming and not everyone is able to weed through the

host of problems that can arise from a tethered cord, especially when

complicated with other conditions such as Chiari. A simple question was asked

and your answer with sage advice that it may be age-related is suffice.

What may seem obvious to us as age-related or how someone lives (eg: very

overweight with increasing back pain) may cause someone else undue stress and

worry. Instead of making a nice comment that is only masked condemnation, why

not just leave it at the help and also add your view in a positive tone?

I think it's great that you shared that you have age-related eye floaters and

suggested that this may be the cause vs. Chiari or tether, but the statement

that members of this " forum " tend to blame all on their problems on their

diagnosis goes overboard. Empathy and education is key along with calm

assistance to someone that there could be many other benign reasons for symptoms

they are experiencing.

We don't all blame everything on our medical dx of tethered cord and/or Chiari -

some go the other way and blame truly related symptoms on other issues;

ignorance is bliss theory. I just believe the person concerned was sincere and

we don't know where they are with their education of their condition. We can do

more by helping than demeaning with this situation. My patience runs short at

times, but if someone is truly trying to educate themselves, making the member

try to feel small or a hypochondriac is not going to help anyone.

Kathy

<Snip> It seems that in this forum someone will try tp pin

everything on TC. Some things as just the natural progress (or regress) of

aging. I also have cataracts, but would certainly not try to blame them on TC.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 12:34:18 PM

Subject: Re: Eye issues and Tethered Cord

Generally speaking, I do have to say that it does point to more of a Chiari

isse rather than Tethered Cord. Because

with alot of the eye issues with Chiari, it isn't that there is a problem

with the Eyes themselves, it is more that

the Brain is intrupting things different and it mimics an eye issue (Hope

that made sense). However, I do have

to say, I can see how it could be a Tethered Cord issue as

well......especially if it was a very tight Tether, more of

an extreme case.

Brande

mymocha@...

> In response to Brande and the question with eye issues and tethered

> cord... I started seeing black floaters at the same time that the pain in

> my heels and arches started. Both started at the exact same time, and the

> floaters are black squiggly/cobweb type things.

>

> Given my connective tissue disorder, I went to the ophthalmologist to rule

> out a retinal tear, and the ophthalmologist said that my eyes could not be

> any healthier. So, my question to the group is, is this more of a Chiari

> symptom, or more of a cord symptom like Brande was wondering?

>

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Posted
Posted

*My son is only 10 years old, and has MANY " classic " symptoms of TC. Since

he is only 10, I hardly think " aging " has anything to do with it, with the

exception of growing taller. ( I was a bit offended by that comment too)*

**

* ( Camerons mom)

*

On Mon, Apr 11, 2011 at 9:51 AM, Dybowski wrote:

>

>

> I was a bit offended also. I have tons of other symptoms and in some way

> they have been brought on by TC. Maybe due to stress on my body or mind, but

> they were never there before. And I'm 28, so I don't think aging has

> anything to do with it.

>

>

>

>

>

> Subject: RE: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 6:49 AM

>

> I agree with Kathy. I have several different conditions that were not

> caused by my TSC but have been made worse by the condition. I suffer from

> osteoporosis which caused by cord to retether after my first surgery, per my

> neurosurgeon. I have a neurogenic bladder which is caused by nerve damage

> and that is not even mentioning the pain I endure daily because of all this.

> Although not all this is caused by TCS it is made worse by the disease. I

> totally feel empathy for all the people that suffer with this disease. By

> the way I also have Spina Bifida which IS the cause of the TCS.

>

>

>

> To: tetheredspinalcord

> From: kmoulton@...

> Date: Sat, 9 Apr 2011 23:29:10 -0400

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint of your statement). There have been members that have been

> diagnosed with other neurological disorders that have distinctive symptoms

> that cross over to tc yet need a different treatment plan. We've had a

> member pass away from Lou Gherig's disease, I know we have at least one

> member that has MS and tethered cord (MS dx'ed long after the tether), along

> with a host of other seemingly non-related neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for this condition, it is overwhelming and not everyone is able to

> weed through the host of problems that can arise from a tethered cord,

> especially when complicated with other conditions such as Chiari. A simple

> question was asked and your answer with sage advice that it may be

> age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

> overweight with increasing back pain) may cause someone else undue stress

> and worry. Instead of making a nice comment that is only masked

> condemnation, why not just leave it at the help and also add your view in a

> positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and suggested that this may be the cause vs. Chiari or tether, but the

> statement that members of this " forum " tend to blame all on their problems

> on their diagnosis goes overboard. Empathy and education is key along with

> calm assistance to someone that there could be many other benign reasons for

> symptoms they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari - some go the other way and blame truly related symptoms on other

> issues; ignorance is bliss theory. I just believe the person concerned was

> sincere and we don't know where they are with their education of their

> condition. We can do more by helping than demeaning with this situation. My

> patience runs short at times, but if someone is truly trying to educate

> themselves, making the member try to feel small or a hypochondriac is not

> going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

> everything on TC. Some things as just the natural progress (or regress) of

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Sat, April 9, 2011 12:34:18 PM

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

> isse rather than Tethered Cord. Because

> with alot of the eye issues with Chiari, it isn't that there is a problem

> with the Eyes themselves, it is more that

> the Brain is intrupting things different and it mimics an eye issue (Hope

> that made sense). However, I do have

> to say, I can see how it could be a Tethered Cord issue as

> well......especially if it was a very tight Tether, more of

> an extreme case.

>

> Brande

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

> > cord... I started seeing black floaters at the same time that the pain in

>

> > my heels and arches started. Both started at the exact same time, and the

>

> > floaters are black squiggly/cobweb type things.

> >

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

> > any healthier. So, my question to the group is, is this more of a Chiari

> > symptom, or more of a cord symptom like Brande was wondering?

> >

>

>

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Posted
Posted

I wasnt offended at all. Yes, its true that TC does have lots of symptoms and

being worn down by TC brings on other symptoms but I understood what she was

saying about there is some stuff that is just other stuff. Not everything is TC.

Maybe there are better ways to word things but it is difficult to express ones

self in words some times. Inflection is nonexistent. I was actually more put off

by the " correction " than the original statement. I dont know, we are all in pain

and somewhat touchy so maybe its just that. I know I have made some harsh

statements to people without really meaning to as well. I think I need a break

from forum land...

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 8:51:06 AM

Subject: RE: (seemingly) blaming all on tc

 

I was a bit offended also. I have tons of other symptoms and in some way they

have been brought on by TC. Maybe due to stress on my body or mind, but they

were never there before. And I'm 28, so I don't think aging has anything to do

with it. 

Subject: RE: (seemingly) blaming all on tc

To: tetheredspinalcord

Date: Monday, April 11, 2011, 6:49 AM

I agree with Kathy. I have several different conditions that were not caused by

my TSC but have been made worse by the condition. I suffer from osteoporosis

which caused by cord to retether after my first surgery, per my neurosurgeon. I

have a neurogenic bladder which is caused by nerve damage and that is not even

mentioning the pain I endure daily because of all this. Although not all this is

caused by TCS it is made worse by the disease. I totally feel empathy for all

the people that suffer with this disease. By the way I also have Spina Bifida

which IS the cause of the TCS.

To: tetheredspinalcord

From: kmoulton@...

Date: Sat, 9 Apr 2011 23:29:10 -0400

Subject: (seemingly) blaming all on tc

 

Hi ,

Your blanket statement: " It seems that in (sic) this forum someone will try to

pin everything on TC. " was an unnecessary put-down to all members (my viewpoint

of your statement). There have been members that have been diagnosed with other

neurological disorders that have distinctive symptoms that cross over to tc yet

need a different treatment plan. We've had a member pass away from Lou Gherig's

disease, I know we have at least one member that has MS and tethered cord (MS

dx'ed long after the tether), along with a host of other seemingly non-related

neurological diseases.

Chiari can cause eye problems and when you are beginning your learning curve for

this condition, it is overwhelming and not everyone is able to weed through the

host of problems that can arise from a tethered cord, especially when

complicated with other conditions such as Chiari. A simple question was asked

and your answer with sage advice that it may be age-related is suffice.

What may seem obvious to us as age-related or how someone lives (eg: very

overweight with increasing back pain) may cause someone else undue stress and

worry. Instead of making a nice comment that is only masked condemnation, why

not just leave it at the help and also add your view in a positive tone?

I think it's great that you shared that you have age-related eye floaters and

suggested that this may be the cause vs. Chiari or tether, but the statement

that members of this " forum " tend to blame all on their problems on their

diagnosis goes overboard. Empathy and education is key along with calm

assistance to someone that there could be many other benign reasons for symptoms

they are experiencing.

We don't all blame everything on our medical dx of tethered cord and/or Chiari -

some go the other way and blame truly related symptoms on other issues;

ignorance is bliss theory. I just believe the person concerned was sincere and

we don't know where they are with their education of their condition. We can do

more by helping than demeaning with this situation. My patience runs short at

times, but if someone is truly trying to educate themselves, making the member

try to feel small or a hypochondriac is not going to help anyone.

Kathy

<Snip> It seems that in this forum someone will try tp pin

everything on TC. Some things as just the natural progress (or regress) of

aging. I also have cataracts, but would certainly not try to blame them on TC.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 12:34:18 PM

Subject: Re: Eye issues and Tethered Cord

Generally speaking, I do have to say that it does point to more of a Chiari

isse rather than Tethered Cord. Because

with alot of the eye issues with Chiari, it isn't that there is a problem

with the Eyes themselves, it is more that

the Brain is intrupting things different and it mimics an eye issue (Hope

that made sense). However, I do have

to say, I can see how it could be a Tethered Cord issue as

well......especially if it was a very tight Tether, more of

an extreme case.

Brande

mymocha@...

> In response to Brande and the question with eye issues and tethered

> cord... I started seeing black floaters at the same time that the pain in

> my heels and arches started. Both started at the exact same time, and the

> floaters are black squiggly/cobweb type things.

>

> Given my connective tissue disorder, I went to the ophthalmologist to rule

> out a retinal tear, and the ophthalmologist said that my eyes could not be

> any healthier. So, my question to the group is, is this more of a Chiari

> symptom, or more of a cord symptom like Brande was wondering?

>

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Posted
Posted

Well I think we all are pretty sensitive because sometimes we are not heard at

the doctors office. I was a bit offended, but obviously realize it was just an

" email " thing,, sometimes you write something without realizing what the tone

is

Subject: RE: (seemingly) blaming all on tc

To: tetheredspinalcord

Date: Monday, April 11, 2011, 6:49 AM

I agree with Kathy. I have several different conditions that were not caused by

my TSC but have been made worse by the condition. I suffer from osteoporosis

which caused by cord to retether after my first surgery, per my neurosurgeon. I

have a neurogenic bladder which is caused by nerve damage and that is not even

mentioning the pain I endure daily because of all this. Although not all this is

caused by TCS it is made worse by the disease. I totally feel empathy for all

the people that suffer with this disease. By the way I also have Spina Bifida

which IS the cause of the TCS.

To: tetheredspinalcord

From: kmoulton@...

Date: Sat, 9 Apr 2011 23:29:10 -0400

Subject: (seemingly) blaming all on tc

 

Hi ,

Your blanket statement: " It seems that in (sic) this forum someone will try to

pin everything on TC. " was an unnecessary put-down to all members (my viewpoint

of your statement). There have been members that have been diagnosed with other

neurological disorders that have distinctive symptoms that cross over to tc yet

need a different treatment plan. We've had a member pass away from Lou Gherig's

disease, I know we have at least one member that has MS and tethered cord (MS

dx'ed long after the tether), along with a host of other seemingly non-related

neurological diseases.

Chiari can cause eye problems and when you are beginning your learning curve for

this condition, it is overwhelming and not everyone is able to weed through the

host of problems that can arise from a tethered cord, especially when

complicated with other conditions such as Chiari. A simple question was asked

and your answer with sage advice that it may be age-related is suffice.

What may seem obvious to us as age-related or how someone lives (eg: very

overweight with increasing back pain) may cause someone else undue stress and

worry. Instead of making a nice comment that is only masked condemnation, why

not just leave it at the help and also add your view in a positive tone?

I think it's great that you shared that you have age-related eye floaters and

suggested that this may be the cause vs. Chiari or tether, but the statement

that members of this " forum " tend to blame all on their problems on their

diagnosis goes overboard. Empathy and education is key along with calm

assistance to someone that there could be many other benign reasons for symptoms

they are experiencing.

We don't all blame everything on our medical dx of tethered cord and/or Chiari -

some go the other way and blame truly related symptoms on other issues;

ignorance is bliss theory. I just believe the person concerned was sincere and

we don't know where they are with their education of their condition. We can do

more by helping than demeaning with this situation. My patience runs short at

times, but if someone is truly trying to educate themselves, making the member

try to feel small or a hypochondriac is not going to help anyone.

Kathy

<Snip> It seems that in this forum someone will try tp pin

everything on TC. Some things as just the natural progress (or regress) of

aging. I also have cataracts, but would certainly not try to blame them on TC.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 12:34:18 PM

Subject: Re: Eye issues and Tethered Cord

Generally speaking, I do have to say that it does point to more of a Chiari

isse rather than Tethered Cord. Because

with alot of the eye issues with Chiari, it isn't that there is a problem

with the Eyes themselves, it is more that

the Brain is intrupting things different and it mimics an eye issue (Hope

that made sense). However, I do have

to say, I can see how it could be a Tethered Cord issue as

well......especially if it was a very tight Tether, more of

an extreme case.

Brande

mymocha@...

> In response to Brande and the question with eye issues and tethered

> cord... I started seeing black floaters at the same time that the pain in

> my heels and arches started. Both started at the exact same time, and the

> floaters are black squiggly/cobweb type things.

>

> Given my connective tissue disorder, I went to the ophthalmologist to rule

> out a retinal tear, and the ophthalmologist said that my eyes could not be

> any healthier. So, my question to the group is, is this more of a Chiari

> symptom, or more of a cord symptom like Brande was wondering?

>

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Posted
Posted

,

I wasn't offended either, but I think what some people took offense to was

the blanket nature of the statement, " It seems that in (sic) this forum

someone will try to pin everything on TC. " I didn't think the original

poster meant " everyone " on the list, but I think that is how some people

read it. Its true, email has no " tone " to it to provide the verbal cues we

need to interpret the tone of the post, like speaking to someone. But, for

old-timers like us, we have seen members that do seem to attribute every

little sneeze, ache and pain to TC.

Oh well. I know I'm touchy this week. PMS can do a real number on my

emotions and how touchy I am. My bf always likes our long distance

relationship during my PMS weeks - it takes so little to set me off. Poor

kitties typically bear the brunt of my PMS weeks. Especially my evil little

one. She is so beautiful (most beautiful cat I've seen), but gosh golly is

she dumb. A box of rocks is likely much smarter. And she is destructive.

She chews things up like a dog. I can deal with her okay, but when I have

PMS - that little bugger really gets under my skin. So can my bf, but since

he lives in Chicago, he can just not answer my phone calls (but he is a good

bf and takes my calls even with the verbal abuse I put him through and takes

them with a grain of salt. He knows I'll apologize the next week when I'm

back to my sweet self - LOL).

Jenn

On Mon, Apr 11, 2011 at 12:19 PM, wrote:

>

>

> I wasnt offended at all. Yes, its true that TC does have lots of symptoms

> and

> being worn down by TC brings on other symptoms but I understood what she

> was

> saying about there is some stuff that is just other stuff. Not everything

> is TC.

> Maybe there are better ways to word things but it is difficult to express

> ones

> self in words some times. Inflection is nonexistent. I was actually more

> put off

> by the " correction " than the original statement. I dont know, we are all in

> pain

> and somewhat touchy so maybe its just that. I know I have made some harsh

> statements to people without really meaning to as well. I think I need a

> break

> from forum land...

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Mon, April 11, 2011 8:51:06 AM

>

> Subject: RE: (seemingly) blaming all on tc

>

>

> I was a bit offended also. I have tons of other symptoms and in some way

> they

> have been brought on by TC. Maybe due to stress on my body or mind, but

> they

> were never there before. And I'm 28, so I don't think aging has anything to

> do

> with it.

>

>

>

>

>

> Subject: RE: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 6:49 AM

>

> I agree with Kathy. I have several different conditions that were not

> caused by

> my TSC but have been made worse by the condition. I suffer from

> osteoporosis

> which caused by cord to retether after my first surgery, per my

> neurosurgeon. I

> have a neurogenic bladder which is caused by nerve damage and that is not

> even

> mentioning the pain I endure daily because of all this. Although not all

> this is

> caused by TCS it is made worse by the disease. I totally feel empathy for

> all

> the people that suffer with this disease. By the way I also have Spina

> Bifida

> which IS the cause of the TCS.

>

>

>

> To: tetheredspinalcord

> From: kmoulton@...

> Date: Sat, 9 Apr 2011 23:29:10 -0400

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

> of your statement). There have been members that have been diagnosed with

> other

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

> disease, I know we have at least one member that has MS and tethered cord

> (MS

> dx'ed long after the tether), along with a host of other seemingly

> non-related

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

> this condition, it is overwhelming and not everyone is able to weed through

> the

> host of problems that can arise from a tethered cord, especially when

> complicated with other conditions such as Chiari. A simple question was

> asked

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

> overweight with increasing back pain) may cause someone else undue stress

> and

> worry. Instead of making a nice comment that is only masked condemnation,

> why

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

> that members of this " forum " tend to blame all on their problems on their

> diagnosis goes overboard. Empathy and education is key along with calm

> assistance to someone that there could be many other benign reasons for

> symptoms

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

> some go the other way and blame truly related symptoms on other issues;

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

> we don't know where they are with their education of their condition. We

> can do

> more by helping than demeaning with this situation. My patience runs short

> at

> times, but if someone is truly trying to educate themselves, making the

> member

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

> everything on TC. Some things as just the natural progress (or regress) of

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Sat, April 9, 2011 12:34:18 PM

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

> isse rather than Tethered Cord. Because

> with alot of the eye issues with Chiari, it isn't that there is a problem

> with the Eyes themselves, it is more that

> the Brain is intrupting things different and it mimics an eye issue (Hope

> that made sense). However, I do have

> to say, I can see how it could be a Tethered Cord issue as

> well......especially if it was a very tight Tether, more of

> an extreme case.

>

> Brande

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

> > cord... I started seeing black floaters at the same time that the pain in

>

> > my heels and arches started. Both started at the exact same time, and the

>

> > floaters are black squiggly/cobweb type things.

> >

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

> > any healthier. So, my question to the group is, is this more of a Chiari

> > symptom, or more of a cord symptom like Brande was wondering?

> >

>

>

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Posted
Posted

It would be funny if we all had PMS...like that cycle TC sync LOL 

I feel your pain!!!! I  consumed 10lbs of chocolate last weekend. 

>

>

> Subject: RE: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 6:49 AM

>

> I agree with Kathy. I have several different conditions that were not

> caused by

> my TSC but have been made worse by the condition. I suffer from

> osteoporosis

> which caused by cord to retether after my first surgery, per my

> neurosurgeon. I

> have a neurogenic bladder which is caused by nerve damage and that is not

> even

> mentioning the pain I endure daily because of all this. Although not all

> this is

> caused by TCS it is made worse by the disease. I totally feel empathy for

> all

> the people that suffer with this disease. By the way I also have Spina

> Bifida

> which IS the cause of the TCS.

>

>

>

> To: tetheredspinalcord

> From: kmoulton@...

> Date: Sat, 9 Apr 2011 23:29:10 -0400

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

> of your statement). There have been members that have been diagnosed with

> other

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

> disease, I know we have at least one member that has MS and tethered cord

> (MS

> dx'ed long after the tether), along with a host of other seemingly

> non-related

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

> this condition, it is overwhelming and not everyone is able to weed through

> the

> host of problems that can arise from a tethered cord, especially when

> complicated with other conditions such as Chiari. A simple question was

> asked

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

> overweight with increasing back pain) may cause someone else undue stress

> and

> worry. Instead of making a nice comment that is only masked condemnation,

> why

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

> that members of this " forum " tend to blame all on their problems on their

> diagnosis goes overboard. Empathy and education is key along with calm

> assistance to someone that there could be many other benign reasons for

> symptoms

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

> some go the other way and blame truly related symptoms on other issues;

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

> we don't know where they are with their education of their condition. We

> can do

> more by helping than demeaning with this situation. My patience runs short

> at

> times, but if someone is truly trying to educate themselves, making the

> member

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

> everything on TC. Some things as just the natural progress (or regress) of

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Sat, April 9, 2011 12:34:18 PM

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

> isse rather than Tethered Cord. Because

> with alot of the eye issues with Chiari, it isn't that there is a problem

> with the Eyes themselves, it is more that

> the Brain is intrupting things different and it mimics an eye issue (Hope

> that made sense). However, I do have

> to say, I can see how it could be a Tethered Cord issue as

> well......especially if it was a very tight Tether, more of

> an extreme case.

>

> Brande

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

> > cord... I started seeing black floaters at the same time that the pain in

>

> > my heels and arches started. Both started at the exact same time, and the

>

> > floaters are black squiggly/cobweb type things.

> >

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

> > any healthier. So, my question to the group is, is this more of a Chiari

> > symptom, or more of a cord symptom like Brande was wondering?

> >

>

>

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Posted
Posted

It would be amusing. You know how women who live or work together tend to be

one the same cycle. Would be funny if the same thing could happen

virtually.

LOL

Jenn

On Mon, Apr 11, 2011 at 2:10 PM, Dybowski wrote:

>

>

> It would be funny if we all had PMS...like that cycle TC sync LOL

> I feel your pain!!!! I consumed 10lbs of chocolate last weekend.

>

>

>

>

> >

> >

> > Subject: RE: (seemingly) blaming all on tc

> > To: tetheredspinalcord

> > Date: Monday, April 11, 2011, 6:49 AM

> >

> > I agree with Kathy. I have several different conditions that were not

> > caused by

> > my TSC but have been made worse by the condition. I suffer from

> > osteoporosis

> > which caused by cord to retether after my first surgery, per my

> > neurosurgeon. I

> > have a neurogenic bladder which is caused by nerve damage and that is not

> > even

> > mentioning the pain I endure daily because of all this. Although not all

> > this is

> > caused by TCS it is made worse by the disease. I totally feel empathy for

> > all

> > the people that suffer with this disease. By the way I also have Spina

> > Bifida

> > which IS the cause of the TCS.

> >

> >

> >

> > To: tetheredspinalcord

> > From: kmoulton@...

> > Date: Sat, 9 Apr 2011 23:29:10 -0400

> > Subject: (seemingly) blaming all on tc

> >

> >

> >

> > Hi ,

> >

> > Your blanket statement: " It seems that in (sic) this forum someone will

> try

> > to

> > pin everything on TC. " was an unnecessary put-down to all members (my

> > viewpoint

> > of your statement). There have been members that have been diagnosed with

> > other

> > neurological disorders that have distinctive symptoms that cross over to

> tc

> > yet

> > need a different treatment plan. We've had a member pass away from Lou

> > Gherig's

> > disease, I know we have at least one member that has MS and tethered cord

> > (MS

> > dx'ed long after the tether), along with a host of other seemingly

> > non-related

> > neurological diseases.

> >

> > Chiari can cause eye problems and when you are beginning your learning

> > curve for

> > this condition, it is overwhelming and not everyone is able to weed

> through

> > the

> > host of problems that can arise from a tethered cord, especially when

> > complicated with other conditions such as Chiari. A simple question was

> > asked

> > and your answer with sage advice that it may be age-related is suffice.

> >

> > What may seem obvious to us as age-related or how someone lives (eg: very

> > overweight with increasing back pain) may cause someone else undue stress

> > and

> > worry. Instead of making a nice comment that is only masked condemnation,

> > why

> > not just leave it at the help and also add your view in a positive tone?

> >

> > I think it's great that you shared that you have age-related eye floaters

> > and

> > suggested that this may be the cause vs. Chiari or tether, but the

> > statement

> > that members of this " forum " tend to blame all on their problems on their

> > diagnosis goes overboard. Empathy and education is key along with calm

> > assistance to someone that there could be many other benign reasons for

> > symptoms

> > they are experiencing.

> >

> > We don't all blame everything on our medical dx of tethered cord and/or

> > Chiari -

> > some go the other way and blame truly related symptoms on other issues;

> > ignorance is bliss theory. I just believe the person concerned was

> sincere

> > and

> > we don't know where they are with their education of their condition. We

> > can do

> > more by helping than demeaning with this situation. My patience runs

> short

> > at

> > times, but if someone is truly trying to educate themselves, making the

> > member

> > try to feel small or a hypochondriac is not going to help anyone.

> >

> > Kathy

> >

> > <Snip> It seems that in this forum someone will try tp pin

> > everything on TC. Some things as just the natural progress (or regress)

> of

> > aging. I also have cataracts, but would certainly not try to blame them

> on

> > TC.

> >

> >

> >

> > ________________________________

> >

> > To: tetheredspinalcord

> > Sent: Sat, April 9, 2011 12:34:18 PM

> > Subject: Re: Eye issues and Tethered Cord

> >

> > Generally speaking, I do have to say that it does point to more of a

> Chiari

> >

> > isse rather than Tethered Cord. Because

> > with alot of the eye issues with Chiari, it isn't that there is a problem

> > with the Eyes themselves, it is more that

> > the Brain is intrupting things different and it mimics an eye issue (Hope

> > that made sense). However, I do have

> > to say, I can see how it could be a Tethered Cord issue as

> > well......especially if it was a very tight Tether, more of

> > an extreme case.

> >

> > Brande

> > mymocha@...

> >

> > > In response to Brande and the question with eye issues and tethered

> > > cord... I started seeing black floaters at the same time that the pain

> in

> >

> > > my heels and arches started. Both started at the exact same time, and

> the

> >

> > > floaters are black squiggly/cobweb type things.

> > >

> > > Given my connective tissue disorder, I went to the ophthalmologist to

> > rule

> > > out a retinal tear, and the ophthalmologist said that my eyes could not

> > be

> > > any healthier. So, my question to the group is, is this more of a

> Chiari

> > > symptom, or more of a cord symptom like Brande was wondering?

> > >

> >

> >

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Posted
Posted

We have three daughters, all a year apart. Before I had a partial

hysterectomy and after for our daughters - we were all on the same cycle.

Within a day of each other. My poor husband and son - they used to know

when it was starting and would all of a sudden have overwhelming need to

fish or hunt or just walk and get out of the house.

Kathy

Re: Eye issues and Tethered Cord

>> >

>> > Generally speaking, I do have to say that it does point to more of a

>> Chiari

>> >

>> > isse rather than Tethered Cord. Because

>> > with alot of the eye issues with Chiari, it isn't that there is a

>> > problem

>> > with the Eyes themselves, it is more that

>> > the Brain is intrupting things different and it mimics an eye issue

>> > (Hope

>> > that made sense). However, I do have

>> > to say, I can see how it could be a Tethered Cord issue as

>> > well......especially if it was a very tight Tether, more of

>> > an extreme case.

>> >

>> > Brande

>> > mymocha@...

>> >

>> > > In response to Brande and the question with eye issues and tethered

>> > > cord... I started seeing black floaters at the same time that the

>> > > pain

>> in

>> >

>> > > my heels and arches started. Both started at the exact same time, and

>> the

>> >

>> > > floaters are black squiggly/cobweb type things.

>> > >

>> > > Given my connective tissue disorder, I went to the ophthalmologist to

>> > rule

>> > > out a retinal tear, and the ophthalmologist said that my eyes could

>> > > not

>> > be

>> > > any healthier. So, my question to the group is, is this more of a

>> Chiari

>> > > symptom, or more of a cord symptom like Brande was wondering?

>> > >

>> >

>> >

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Posted
Posted

I have a sister.. so 3 women in the house ganging up on my dad.My husband still

doesn't get it. But he will :)

>> >

>> >

>> > Subject: RE: (seemingly) blaming all on tc

>> > To: tetheredspinalcord

>> > Date: Monday, April 11, 2011, 6:49 AM

>> >

>> > I agree with Kathy. I have several different conditions that were not

>> > caused by

>> > my TSC but have been made worse by the condition. I suffer from

>> > osteoporosis

>> > which caused by cord to retether after my first surgery, per my

>> > neurosurgeon. I

>> > have a neurogenic bladder which is caused by nerve damage and that is

>> > not

>> > even

>> > mentioning the pain I endure daily because of all this. Although not

>> > all

>> > this is

>> > caused by TCS it is made worse by the disease. I totally feel empathy

>> > for

>> > all

>> > the people that suffer with this disease. By the way I also have Spina

>> > Bifida

>> > which IS the cause of the TCS.

>> >

>> >

>> >

>> > To: tetheredspinalcord

>> > From: kmoulton@...

>> > Date: Sat, 9 Apr 2011 23:29:10 -0400

>> > Subject: (seemingly) blaming all on tc

>> >

>> >

>> >

>> > Hi ,

>> >

>> > Your blanket statement: " It seems that in (sic) this forum someone will

>> try

>> > to

>> > pin everything on TC. " was an unnecessary put-down to all members (my

>> > viewpoint

>> > of your statement). There have been members that have been diagnosed

>> > with

>> > other

>> > neurological disorders that have distinctive symptoms that cross over

>> > to

>> tc

>> > yet

>> > need a different treatment plan. We've had a member pass away from Lou

>> > Gherig's

>> > disease, I know we have at least one member that has MS and tethered

>> > cord

>> > (MS

>> > dx'ed long after the tether), along with a host of other seemingly

>> > non-related

>> > neurological diseases.

>> >

>> > Chiari can cause eye problems and when you are beginning your learning

>> > curve for

>> > this condition, it is overwhelming and not everyone is able to weed

>> through

>> > the

>> > host of problems that can arise from a tethered cord, especially when

>> > complicated with other conditions such as Chiari. A simple question was

>> > asked

>> > and your answer with sage advice that it may be age-related is suffice.

>> >

>> > What may seem obvious to us as age-related or how someone lives (eg:

>> > very

>> > overweight with increasing back pain) may cause someone else undue

>> > stress

>> > and

>> > worry. Instead of making a nice comment that is only masked

>> > condemnation,

>> > why

>> > not just leave it at the help and also add your view in a positive

>> > tone?

>> >

>> > I think it's great that you shared that you have age-related eye

>> > floaters

>> > and

>> > suggested that this may be the cause vs. Chiari or tether, but the

>> > statement

>> > that members of this " forum " tend to blame all on their problems on

>> > their

>> > diagnosis goes overboard. Empathy and education is key along with calm

>> > assistance to someone that there could be many other benign reasons for

>> > symptoms

>> > they are experiencing.

>> >

>> > We don't all blame everything on our medical dx of tethered cord and/or

>> > Chiari -

>> > some go the other way and blame truly related symptoms on other issues;

>> > ignorance is bliss theory. I just believe the person concerned was

>> sincere

>> > and

>> > we don't know where they are with their education of their condition.

>> > We

>> > can do

>> > more by helping than demeaning with this situation. My patience runs

>> short

>> > at

>> > times, but if someone is truly trying to educate themselves, making the

>> > member

>> > try to feel small or a hypochondriac is not going to help anyone.

>> >

>> > Kathy

>> >

>> > <Snip> It seems that in this forum someone will try tp pin

>> > everything on TC. Some things as just the natural progress (or regress)

>> of

>> > aging. I also have cataracts, but would certainly not try to blame them

>> on

>> > TC.

>> >

>> >

>> >

>> > ________________________________

>> >

>> > To: tetheredspinalcord

>> > Sent: Sat, April 9, 2011 12:34:18 PM

>> > Subject: Re: Eye issues and Tethered Cord

>> >

>> > Generally speaking, I do have to say that it does point to more of a

>> Chiari

>> >

>> > isse rather than Tethered Cord. Because

>> > with alot of the eye issues with Chiari, it isn't that there is a

>> > problem

>> > with the Eyes themselves, it is more that

>> > the Brain is intrupting things different and it mimics an eye issue

>> > (Hope

>> > that made sense). However, I do have

>> > to say, I can see how it could be a Tethered Cord issue as

>> > well......especially if it was a very tight Tether, more of

>> > an extreme case.

>> >

>> > Brande

>> > mymocha@...

>> >

>> > > In response to Brande and the question with eye issues and tethered

>> > > cord... I started seeing black floaters at the same time that the

>> > > pain

>> in

>> >

>> > > my heels and arches started. Both started at the exact same time, and

>> the

>> >

>> > > floaters are black squiggly/cobweb type things.

>> > >

>> > > Given my connective tissue disorder, I went to the ophthalmologist to

>> > rule

>> > > out a retinal tear, and the ophthalmologist said that my eyes could

>> > > not

>> > be

>> > > any healthier. So, my question to the group is, is this more of a

>> Chiari

>> > > symptom, or more of a cord symptom like Brande was wondering?

>> > >

>> >

>> >

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Posted
Posted

Kathy:

    You have made a valid point.  I stand chastened and apologize to all who

may

have been offended.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 8:29:10 PM

Subject: (seemingly) blaming all on tc

 

Hi ,

Your blanket statement: " It seems that in (sic) this forum someone will try to

pin everything on TC. " was an unnecessary put-down to all members (my viewpoint

of your statement). There have been members that have been diagnosed with other

neurological disorders that have distinctive symptoms that cross over to tc yet

need a different treatment plan. We've had a member pass away from Lou Gherig's

disease, I know we have at least one member that has MS and tethered cord (MS

dx'ed long after the tether), along with a host of other seemingly non-related

neurological diseases.

Chiari can cause eye problems and when you are beginning your learning curve for

this condition, it is overwhelming and not everyone is able to weed through the

host of problems that can arise from a tethered cord, especially when

complicated with other conditions such as Chiari. A simple question was asked

and your answer with sage advice that it may be age-related is suffice.

What may seem obvious to us as age-related or how someone lives (eg: very

overweight with increasing back pain) may cause someone else undue stress and

worry. Instead of making a nice comment that is only masked condemnation, why

not just leave it at the help and also add your view in a positive tone?

I think it's great that you shared that you have age-related eye floaters and

suggested that this may be the cause vs. Chiari or tether, but the statement

that members of this " forum " tend to blame all on their problems on their

diagnosis goes overboard. Empathy and education is key along with calm

assistance to someone that there could be many other benign reasons for symptoms

they are experiencing.

We don't all blame everything on our medical dx of tethered cord and/or Chiari -

some go the other way and blame truly related symptoms on other issues;

ignorance is bliss theory. I just believe the person concerned was sincere and

we don't know where they are with their education of their condition. We can do

more by helping than demeaning with this situation. My patience runs short at

times, but if someone is truly trying to educate themselves, making the member

try to feel small or a hypochondriac is not going to help anyone.

Kathy

<Snip> It seems that in this forum someone will try tp pin

everything on TC. Some things as just the natural progress (or regress) of

aging. I also have cataracts, but would certainly not try to blame them on TC.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 12:34:18 PM

Subject: Re: Eye issues and Tethered Cord

Generally speaking, I do have to say that it does point to more of a Chiari

isse rather than Tethered Cord. Because

with alot of the eye issues with Chiari, it isn't that there is a problem

with the Eyes themselves, it is more that

the Brain is intrupting things different and it mimics an eye issue (Hope

that made sense). However, I do have

to say, I can see how it could be a Tethered Cord issue as

well......especially if it was a very tight Tether, more of

an extreme case.

Brande

mymocha@...

> In response to Brande and the question with eye issues and tethered

> cord... I started seeing black floaters at the same time that the pain in

> my heels and arches started. Both started at the exact same time, and the

> floaters are black squiggly/cobweb type things.

>

> Given my connective tissue disorder, I went to the ophthalmologist to rule

> out a retinal tear, and the ophthalmologist said that my eyes could not be

> any healthier. So, my question to the group is, is this more of a Chiari

> symptom, or more of a cord symptom like Brande was wondering?

>

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Posted
Posted

,

All good :)  I'm just trying to figure out what is going with my eyes, and I

kinda hoped it would be TC related so I could stop stressing about it. I

have horrible eye pain and sensitivity to noise. I can barely listen to the

radio, and when someone talks loudly in our office I want to smack them. 

Subject: Re: (seemingly) blaming all on tc

To: tetheredspinalcord

Date: Monday, April 11, 2011, 2:07 PM

 

Kathy:

    You have made a valid point.  I stand chastened and apologize to all who

may

have been offended.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 8:29:10 PM

Subject: (seemingly) blaming all on tc

 

Hi ,

Your blanket statement: " It seems that in (sic) this forum someone will try to

pin everything on TC. " was an unnecessary put-down to all members (my viewpoint

of your statement). There have been members that have been diagnosed with other

neurological disorders that have distinctive symptoms that cross over to tc yet

need a different treatment plan. We've had a member pass away from Lou Gherig's

disease, I know we have at least one member that has MS and tethered cord (MS

dx'ed long after the tether), along with a host of other seemingly non-related

neurological diseases.

Chiari can cause eye problems and when you are beginning your learning curve for

this condition, it is overwhelming and not everyone is able to weed through the

host of problems that can arise from a tethered cord, especially when

complicated with other conditions such as Chiari. A simple question was asked

and your answer with sage advice that it may be age-related is suffice.

What may seem obvious to us as age-related or how someone lives (eg: very

overweight with increasing back pain) may cause someone else undue stress and

worry. Instead of making a nice comment that is only masked condemnation, why

not just leave it at the help and also add your view in a positive tone?

I think it's great that you shared that you have age-related eye floaters and

suggested that this may be the cause vs. Chiari or tether, but the statement

that members of this " forum " tend to blame all on their problems on their

diagnosis goes overboard. Empathy and education is key along with calm

assistance to someone that there could be many other benign reasons for symptoms

they are experiencing.

We don't all blame everything on our medical dx of tethered cord and/or Chiari -

some go the other way and blame truly related symptoms on other issues;

ignorance is bliss theory. I just believe the person concerned was sincere and

we don't know where they are with their education of their condition. We can do

more by helping than demeaning with this situation. My patience runs short at

times, but if someone is truly trying to educate themselves, making the member

try to feel small or a hypochondriac is not going to help anyone.

Kathy

<Snip> It seems that in this forum someone will try tp pin

everything on TC. Some things as just the natural progress (or regress) of

aging. I also have cataracts, but would certainly not try to blame them on TC.

________________________________

To: tetheredspinalcord

Sent: Sat, April 9, 2011 12:34:18 PM

Subject: Re: Eye issues and Tethered Cord

Generally speaking, I do have to say that it does point to more of a Chiari

isse rather than Tethered Cord. Because

with alot of the eye issues with Chiari, it isn't that there is a problem

with the Eyes themselves, it is more that

the Brain is intrupting things different and it mimics an eye issue (Hope

that made sense). However, I do have

to say, I can see how it could be a Tethered Cord issue as

well......especially if it was a very tight Tether, more of

an extreme case.

Brande

mymocha@...

> In response to Brande and the question with eye issues and tethered

> cord... I started seeing black floaters at the same time that the pain in

> my heels and arches started. Both started at the exact same time, and the

> floaters are black squiggly/cobweb type things.

>

> Given my connective tissue disorder, I went to the ophthalmologist to rule

> out a retinal tear, and the ophthalmologist said that my eyes could not be

> any healthier. So, my question to the group is, is this more of a Chiari

> symptom, or more of a cord symptom like Brande was wondering?

>

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Posted
Posted

I've had this happen. One of my closest friends and I have synced cycles across

the country.

Women are odd creatures, wonderfully odd creatures.

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 2:45:07 PM

Subject: Re: (seemingly) blaming all on tc

It would be amusing. You know how women who live or work together tend to be

one the same cycle. Would be funny if the same thing could happen

virtually.

LOL

Jenn

On Mon, Apr 11, 2011 at 2:10 PM, Dybowski wrote:

>

>

> It would be funny if we all had PMS...like that cycle TC sync LOL

> I feel your pain!!!! I consumed 10lbs of chocolate last weekend.

>

>

>

>

> >

> >

> > Subject: RE: (seemingly) blaming all on tc

> > To: tetheredspinalcord

> > Date: Monday, April 11, 2011, 6:49 AM

> >

> > I agree with Kathy. I have several different conditions that were not

> > caused by

> > my TSC but have been made worse by the condition. I suffer from

> > osteoporosis

> > which caused by cord to retether after my first surgery, per my

> > neurosurgeon. I

> > have a neurogenic bladder which is caused by nerve damage and that is not

> > even

> > mentioning the pain I endure daily because of all this. Although not all

> > this is

> > caused by TCS it is made worse by the disease. I totally feel empathy for

> > all

> > the people that suffer with this disease. By the way I also have Spina

> > Bifida

> > which IS the cause of the TCS.

> >

> >

> >

> > To: tetheredspinalcord

> > From: kmoulton@...

> > Date: Sat, 9 Apr 2011 23:29:10 -0400

> > Subject: (seemingly) blaming all on tc

> >

> >

> >

> > Hi ,

> >

> > Your blanket statement: " It seems that in (sic) this forum someone will

> try

> > to

> > pin everything on TC. " was an unnecessary put-down to all members (my

> > viewpoint

> > of your statement). There have been members that have been diagnosed with

> > other

> > neurological disorders that have distinctive symptoms that cross over to

> tc

> > yet

> > need a different treatment plan. We've had a member pass away from Lou

> > Gherig's

> > disease, I know we have at least one member that has MS and tethered cord

> > (MS

> > dx'ed long after the tether), along with a host of other seemingly

> > non-related

> > neurological diseases.

> >

> > Chiari can cause eye problems and when you are beginning your learning

> > curve for

> > this condition, it is overwhelming and not everyone is able to weed

> through

> > the

> > host of problems that can arise from a tethered cord, especially when

> > complicated with other conditions such as Chiari. A simple question was

> > asked

> > and your answer with sage advice that it may be age-related is suffice.

> >

> > What may seem obvious to us as age-related or how someone lives (eg: very

> > overweight with increasing back pain) may cause someone else undue stress

> > and

> > worry. Instead of making a nice comment that is only masked condemnation,

> > why

> > not just leave it at the help and also add your view in a positive tone?

> >

> > I think it's great that you shared that you have age-related eye floaters

> > and

> > suggested that this may be the cause vs. Chiari or tether, but the

> > statement

> > that members of this " forum " tend to blame all on their problems on their

> > diagnosis goes overboard. Empathy and education is key along with calm

> > assistance to someone that there could be many other benign reasons for

> > symptoms

> > they are experiencing.

> >

> > We don't all blame everything on our medical dx of tethered cord and/or

> > Chiari -

> > some go the other way and blame truly related symptoms on other issues;

> > ignorance is bliss theory. I just believe the person concerned was

> sincere

> > and

> > we don't know where they are with their education of their condition. We

> > can do

> > more by helping than demeaning with this situation. My patience runs

> short

> > at

> > times, but if someone is truly trying to educate themselves, making the

> > member

> > try to feel small or a hypochondriac is not going to help anyone.

> >

> > Kathy

> >

> > <Snip> It seems that in this forum someone will try tp pin

> > everything on TC. Some things as just the natural progress (or regress)

> of

> > aging. I also have cataracts, but would certainly not try to blame them

> on

> > TC.

> >

> >

> >

> > ________________________________

> >

> > To: tetheredspinalcord

> > Sent: Sat, April 9, 2011 12:34:18 PM

> > Subject: Re: Eye issues and Tethered Cord

> >

> > Generally speaking, I do have to say that it does point to more of a

> Chiari

> >

> > isse rather than Tethered Cord. Because

> > with alot of the eye issues with Chiari, it isn't that there is a problem

> > with the Eyes themselves, it is more that

> > the Brain is intrupting things different and it mimics an eye issue (Hope

> > that made sense). However, I do have

> > to say, I can see how it could be a Tethered Cord issue as

> > well......especially if it was a very tight Tether, more of

> > an extreme case.

> >

> > Brande

> > mymocha@...

> >

> > > In response to Brande and the question with eye issues and tethered

> > > cord... I started seeing black floaters at the same time that the pain

> in

> >

> > > my heels and arches started. Both started at the exact same time, and

> the

> >

> > > floaters are black squiggly/cobweb type things.

> > >

> > > Given my connective tissue disorder, I went to the ophthalmologist to

> > rule

> > > out a retinal tear, and the ophthalmologist said that my eyes could not

> > be

> > > any healthier. So, my question to the group is, is this more of a

> Chiari

> > > symptom, or more of a cord symptom like Brande was wondering?

> > >

> >

> >

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Posted
Posted

,

Do you have migraines? You could be having silent migraines. I have chronic

headaches since the vascular malformation in my brain hemorrhaged 3+ times.

Usually the first thing I notice is sensitivity to light and sound and

nausea (or just lack of appetite). When the headache hits, I usually say to

myself (very quietly - LOL), " oh, that's why I haven't been hungry... " Even

once I get the pain under wraps, the sensitivity to light and sound will

stick around. Although these are not migraines, you can have " silent " ones.

Where the brain is feeling the pain/physiology of the migraine, but you

don't experience the pain of it (but may experience the other symptoms like

the photophobia, etc).

Jenn

On Mon, Apr 11, 2011 at 3:11 PM, Dybowski wrote:

>

>

> ,

> All good :) I'm just trying to figure out what is going with my eyes, and

> I kinda hoped it would be TC related so I could stop stressing about it. I

> have horrible eye pain and sensitivity to noise. I can barely listen to the

> radio, and when someone talks loudly in our office I want to smack them.

>

>

>

>

>

>

> Subject: Re: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 2:07 PM

>

>

>

>

> Kathy:

>

> You have made a valid point. I stand chastened and apologize to all

> who may

>

> have been offended.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 8:29:10 PM

>

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

>

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

>

> of your statement). There have been members that have been diagnosed with

> other

>

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

>

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

>

> disease, I know we have at least one member that has MS and tethered cord

> (MS

>

> dx'ed long after the tether), along with a host of other seemingly

> non-related

>

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

>

> this condition, it is overwhelming and not everyone is able to weed through

> the

>

> host of problems that can arise from a tethered cord, especially when

>

> complicated with other conditions such as Chiari. A simple question was

> asked

>

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

>

> overweight with increasing back pain) may cause someone else undue stress

> and

>

> worry. Instead of making a nice comment that is only masked condemnation,

> why

>

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

>

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

>

> that members of this " forum " tend to blame all on their problems on their

>

> diagnosis goes overboard. Empathy and education is key along with calm

>

> assistance to someone that there could be many other benign reasons for

> symptoms

>

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

>

> some go the other way and blame truly related symptoms on other issues;

>

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

>

> we don't know where they are with their education of their condition. We

> can do

>

> more by helping than demeaning with this situation. My patience runs short

> at

>

> times, but if someone is truly trying to educate themselves, making the

> member

>

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

>

> everything on TC. Some things as just the natural progress (or regress) of

>

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 12:34:18 PM

>

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

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Posted
Posted

,

Oh, and if you haven't been checked for chiari, it could also be the cause.

Chiari is associated with TC.

Jenn

On Mon, Apr 11, 2011 at 3:11 PM, Dybowski wrote:

>

>

> ,

> All good :) I'm just trying to figure out what is going with my eyes, and

> I kinda hoped it would be TC related so I could stop stressing about it. I

> have horrible eye pain and sensitivity to noise. I can barely listen to the

> radio, and when someone talks loudly in our office I want to smack them.

>

>

>

>

>

>

> Subject: Re: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 2:07 PM

>

>

>

>

> Kathy:

>

> You have made a valid point. I stand chastened and apologize to all

> who may

>

> have been offended.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 8:29:10 PM

>

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

>

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

>

> of your statement). There have been members that have been diagnosed with

> other

>

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

>

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

>

> disease, I know we have at least one member that has MS and tethered cord

> (MS

>

> dx'ed long after the tether), along with a host of other seemingly

> non-related

>

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

>

> this condition, it is overwhelming and not everyone is able to weed through

> the

>

> host of problems that can arise from a tethered cord, especially when

>

> complicated with other conditions such as Chiari. A simple question was

> asked

>

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

>

> overweight with increasing back pain) may cause someone else undue stress

> and

>

> worry. Instead of making a nice comment that is only masked condemnation,

> why

>

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

>

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

>

> that members of this " forum " tend to blame all on their problems on their

>

> diagnosis goes overboard. Empathy and education is key along with calm

>

> assistance to someone that there could be many other benign reasons for

> symptoms

>

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

>

> some go the other way and blame truly related symptoms on other issues;

>

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

>

> we don't know where they are with their education of their condition. We

> can do

>

> more by helping than demeaning with this situation. My patience runs short

> at

>

> times, but if someone is truly trying to educate themselves, making the

> member

>

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

>

> everything on TC. Some things as just the natural progress (or regress) of

>

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 12:34:18 PM

>

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

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Posted
Posted

They did check for Chiari... nothing there.The headaches started this year and I

feel like I have this very painful jolt of electricity going through my brain. I

checked my eyes out, nothing going on.

I have never heard of a silent migraine.. my sensitivity is 24/7 though. Doesn't

matter what time of day I hate the light and I hate noise.I do have big patches

on my face that feel very tender (above eyes, jaw) and my face tingles a lot,

almost like tickling. 

>

>

>

> Subject: Re: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 2:07 PM

>

>

>

>

> Kathy:

>

>     You have made a valid point.  I stand chastened and apologize to all

> who may

>

> have been offended.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 8:29:10 PM

>

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

>

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

>

> of your statement). There have been members that have been diagnosed with

> other

>

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

>

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

>

> disease, I know we have at least one member that has MS and tethered cord

> (MS

>

> dx'ed long after the tether), along with a host of other seemingly

> non-related

>

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

>

> this condition, it is overwhelming and not everyone is able to weed through

> the

>

> host of problems that can arise from a tethered cord, especially when

>

> complicated with other conditions such as Chiari. A simple question was

> asked

>

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

>

> overweight with increasing back pain) may cause someone else undue stress

> and

>

> worry. Instead of making a nice comment that is only masked condemnation,

> why

>

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

>

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

>

> that members of this " forum " tend to blame all on their problems on their

>

> diagnosis goes overboard. Empathy and education is key along with calm

>

> assistance to someone that there could be many other benign reasons for

> symptoms

>

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

>

> some go the other way and blame truly related symptoms on other issues;

>

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

>

> we don't know where they are with their education of their condition. We

> can do

>

> more by helping than demeaning with this situation. My patience runs short

> at

>

> times, but if someone is truly trying to educate themselves, making the

> member

>

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

>

> everything on TC. Some things as just the natural progress (or regress) of

>

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 12:34:18 PM

>

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

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Posted
Posted

Have you been checked for other neuro issues? I can't think of the name of it -

Lhermettes? Have any doctors checked to see if you are positive for this sign?

(You can look up the term through a search engine - if I've mispelled it should

correct it for you.)

Kathy

Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

Link to comment
Share on other sites
Guest guest

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Posted
Posted

Sorry for answering so much stuff today.

I have silent migraines - I get the all the symptoms of a migraine, no pain. For

me, it's light, noise, and smells. Oh, the smells. My husband smells like cheese

when I get these. And I get very stupid. They last for a few days, then they go

away. But while they're here, I have weird symptoms. Taking migraine meds, the

triptans, help with all the symptoms, not just pain. So when this starts, when

my husband smells like cheese or the bass from Eminem's songs cause my head to

fog, I take a Maxalt and try to head off the worst of it.

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 3:41:49 PM

Subject: Re: (seemingly) blaming all on tc

They did check for Chiari... nothing there.The headaches started this year and I

feel like I have this very painful jolt of electricity going through my brain. I

checked my eyes out, nothing going on.

I have never heard of a silent migraine.. my sensitivity is 24/7 though. Doesn't

matter what time of day I hate the light and I hate noise.I do have big patches

on my face that feel very tender (above eyes, jaw) and my face tingles a lot,

almost like tickling.

>

>

>

> Subject: Re: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 2:07 PM

>

>

>

>

> Kathy:

>

> You have made a valid point. I stand chastened and apologize to all

> who may

>

> have been offended.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 8:29:10 PM

>

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

>

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

>

> of your statement). There have been members that have been diagnosed with

> other

>

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

>

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

>

> disease, I know we have at least one member that has MS and tethered cord

> (MS

>

> dx'ed long after the tether), along with a host of other seemingly

> non-related

>

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

>

> this condition, it is overwhelming and not everyone is able to weed through

> the

>

> host of problems that can arise from a tethered cord, especially when

>

> complicated with other conditions such as Chiari. A simple question was

> asked

>

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

>

> overweight with increasing back pain) may cause someone else undue stress

> and

>

> worry. Instead of making a nice comment that is only masked condemnation,

> why

>

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

>

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

>

> that members of this " forum " tend to blame all on their problems on their

>

> diagnosis goes overboard. Empathy and education is key along with calm

>

> assistance to someone that there could be many other benign reasons for

> symptoms

>

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

>

> some go the other way and blame truly related symptoms on other issues;

>

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

>

> we don't know where they are with their education of their condition. We

> can do

>

> more by helping than demeaning with this situation. My patience runs short

> at

>

> times, but if someone is truly trying to educate themselves, making the

> member

>

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

>

> everything on TC. Some things as just the natural progress (or regress) of

>

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 12:34:18 PM

>

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

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Posted
Posted

,

I haven't been following this thread closely but this caught my eye. Could it be

Chiari? I have Spina Bifida and Chiari and my nsg confirmed my symptoms were

Chiari-related. About 5 years ago, I started having vision and hearing problems.

I have tenderness/pain under my right eye (towards the tear duct), I have to tip

my chin down so my eyes don't 'jump' while playing cards, reading. Overhead

lighting gives me a headache so I wear a visor to block it out.

And loud noise drives me NUTS! I want to run over a brother who doesn't have an

'inside' voice and radios, tvs, etc. sometimes makes me want to scream " turn it

down! " . The person doesn't understand because, to them, the volume is just fine.

Just a thought.

Jodi

>All good :) I'm just trying to figure out what is going with my eyes, and I

>kinda hoped it would be TC related so I could stop stressing about it. I

>have horrible eye pain and sensitivity to noise. I can barely listen to the

>radio, and when someone talks loudly in our office I want to smack them.

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Posted
Posted

,

This could also be simply answered by stress. It seems like you have been

stressing quite a bit lately. With the fairly recent onset, it could just

have to do with the stress you have been feeling. Kind of like a tension

headache, but without the aching head.

Jenn

On Mon, Apr 11, 2011 at 3:41 PM, Dybowski wrote:

>

>

> They did check for Chiari... nothing there.The headaches started this year

> and I feel like I have this very painful jolt of electricity going through

> my brain. I checked my eyes out, nothing going on.

> I have never heard of a silent migraine.. my sensitivity is 24/7 though.

> Doesn't matter what time of day I hate the light and I hate noise.I do have

> big patches on my face that feel very tender (above eyes, jaw) and my face

> tingles a lot, almost like tickling.

>

>

>

>

> >

> >

> >

> > Subject: Re: (seemingly) blaming all on tc

> > To: tetheredspinalcord

> > Date: Monday, April 11, 2011, 2:07 PM

> >

> >

> >

> >

> > Kathy:

> >

> > You have made a valid point. I stand chastened and apologize to all

> > who may

> >

> > have been offended.

> >

> >

> >

> > ________________________________

> >

> >

> >

> > To: tetheredspinalcord

> >

> > Sent: Sat, April 9, 2011 8:29:10 PM

> >

> > Subject: (seemingly) blaming all on tc

> >

> >

> >

> > Hi ,

> >

> > Your blanket statement: " It seems that in (sic) this forum someone will

> try

> > to

> >

> > pin everything on TC. " was an unnecessary put-down to all members (my

> > viewpoint

> >

> > of your statement). There have been members that have been diagnosed with

> > other

> >

> > neurological disorders that have distinctive symptoms that cross over to

> tc

> > yet

> >

> > need a different treatment plan. We've had a member pass away from Lou

> > Gherig's

> >

> > disease, I know we have at least one member that has MS and tethered cord

> > (MS

> >

> > dx'ed long after the tether), along with a host of other seemingly

> > non-related

> >

> > neurological diseases.

> >

> > Chiari can cause eye problems and when you are beginning your learning

> > curve for

> >

> > this condition, it is overwhelming and not everyone is able to weed

> through

> > the

> >

> > host of problems that can arise from a tethered cord, especially when

> >

> > complicated with other conditions such as Chiari. A simple question was

> > asked

> >

> > and your answer with sage advice that it may be age-related is suffice.

> >

> > What may seem obvious to us as age-related or how someone lives (eg: very

> >

> > overweight with increasing back pain) may cause someone else undue stress

> > and

> >

> > worry. Instead of making a nice comment that is only masked condemnation,

> > why

> >

> > not just leave it at the help and also add your view in a positive tone?

> >

> > I think it's great that you shared that you have age-related eye floaters

> > and

> >

> > suggested that this may be the cause vs. Chiari or tether, but the

> > statement

> >

> > that members of this " forum " tend to blame all on their problems on their

> >

> > diagnosis goes overboard. Empathy and education is key along with calm

> >

> > assistance to someone that there could be many other benign reasons for

> > symptoms

> >

> > they are experiencing.

> >

> > We don't all blame everything on our medical dx of tethered cord and/or

> > Chiari -

> >

> > some go the other way and blame truly related symptoms on other issues;

> >

> > ignorance is bliss theory. I just believe the person concerned was

> sincere

> > and

> >

> > we don't know where they are with their education of their condition. We

> > can do

> >

> > more by helping than demeaning with this situation. My patience runs

> short

> > at

> >

> > times, but if someone is truly trying to educate themselves, making the

> > member

> >

> > try to feel small or a hypochondriac is not going to help anyone.

> >

> > Kathy

> >

> > <Snip> It seems that in this forum someone will try tp pin

> >

> > everything on TC. Some things as just the natural progress (or regress)

> of

> >

> > aging. I also have cataracts, but would certainly not try to blame them

> on

> > TC.

> >

> >

> >

> > ________________________________

> >

> >

> >

> > To: tetheredspinalcord

> >

> > Sent: Sat, April 9, 2011 12:34:18 PM

> >

> > Subject: Re: Eye issues and Tethered Cord

> >

> > Generally speaking, I do have to say that it does point to more of a

> Chiari

> >

> >

> > isse rather than Tethered Cord. Because

> >

> > with alot of the eye issues with Chiari, it isn't that there is a problem

> >

> > with the Eyes themselves, it is more that

> >

> > the Brain is intrupting things different and it mimics an eye issue (Hope

> >

> > that made sense). However, I do have

> >

> > to say, I can see how it could be a Tethered Cord issue as

> >

> > well......especially if it was a very tight Tether, more of

> >

> > an extreme case.

> >

> > Brande

> >

> > mymocha@...

> >

> > > In response to Brande and the question with eye issues and tethered

> >

> > > cord... I started seeing black floaters at the same time that the pain

> in

> >

> >

> > > my heels and arches started. Both started at the exact same time, and

> the

> >

> >

> > > floaters are black squiggly/cobweb type things.

> >

> > >

> >

> > > Given my connective tissue disorder, I went to the ophthalmologist to

> > rule

> >

> > > out a retinal tear, and the ophthalmologist said that my eyes could not

> > be

> >

> > > any healthier. So, my question to the group is, is this more of a

> Chiari

> >

> > > symptom, or more of a cord symptom like Brande was wondering?

> >

> > >

> >

> >

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Posted
Posted

I will check it out :) I had no idea there was such a thing

>

>

>

> Subject: Re: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 2:07 PM

>

>

>

>

> Kathy:

>

> You have made a valid point. I stand chastened and apologize to all

> who may

>

> have been offended.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 8:29:10 PM

>

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

>

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

>

> of your statement). There have been members that have been diagnosed with

> other

>

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

>

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

>

> disease, I know we have at least one member that has MS and tethered cord

> (MS

>

> dx'ed long after the tether), along with a host of other seemingly

> non-related

>

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

>

> this condition, it is overwhelming and not everyone is able to weed through

> the

>

> host of problems that can arise from a tethered cord, especially when

>

> complicated with other conditions such as Chiari. A simple question was

> asked

>

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

>

> overweight with increasing back pain) may cause someone else undue stress

> and

>

> worry. Instead of making a nice comment that is only masked condemnation,

> why

>

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

>

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

>

> that members of this " forum " tend to blame all on their problems on their

>

> diagnosis goes overboard. Empathy and education is key along with calm

>

> assistance to someone that there could be many other benign reasons for

> symptoms

>

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

>

> some go the other way and blame truly related symptoms on other issues;

>

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

>

> we don't know where they are with their education of their condition. We

> can do

>

> more by helping than demeaning with this situation. My patience runs short

> at

>

> times, but if someone is truly trying to educate themselves, making the

> member

>

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

>

> everything on TC. Some things as just the natural progress (or regress) of

>

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 12:34:18 PM

>

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

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Posted
Posted

Jodi, I saw Dr. Frim's friend for a brain and neck MRI and nothing so far. The

original testing was for MS, but I don't think they would have missed

anything?? Maybe I will ask Dr. Frim to take a look at it. I can always e-mail

him and tell him my pain doc wants to know.

Subject: Re: (seemingly) blaming all on tc

To: tetheredspinalcord

Date: Monday, April 11, 2011, 3:05 PM

 

,

I haven't been following this thread closely but this caught my eye. Could it be

Chiari? I have Spina Bifida and Chiari and my nsg confirmed my symptoms were

Chiari-related. About 5 years ago, I started having vision and hearing problems.

I have tenderness/pain under my right eye (towards the tear duct), I have to tip

my chin down so my eyes don't 'jump' while playing cards, reading. Overhead

lighting gives me a headache so I wear a visor to block it out.

And loud noise drives me NUTS! I want to run over a brother who doesn't have an

'inside' voice and radios, tvs, etc. sometimes makes me want to scream " turn it

down! " . The person doesn't understand because, to them, the volume is just fine.

Just a thought.

Jodi

>All good :) I'm just trying to figure out what is going with my eyes, and I

>kinda hoped it would be TC related so I could stop stressing about it. I

>have horrible eye pain and sensitivity to noise. I can barely listen to the

>radio, and when someone talks loudly in our office I want to smack them.

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Share on other sites
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Posted
Posted

But what is the cause of the stress.

For me headaces come with pain in spine area .

Zo stress is pain

and be tyred give pain to.

So i rrealy think it is a combination of al factors

JW

-----Oorspronkelijk bericht-----

From: JBobin

Sent: Monday, April 11, 2011 10:25 PM

To: tetheredspinalcord

Subject: Re: (seemingly) blaming all on tc

,

This could also be simply answered by stress. It seems like you have been

stressing quite a bit lately. With the fairly recent onset, it could just

have to do with the stress you have been feeling. Kind of like a tension

headache, but without the aching head.

Jenn

On Mon, Apr 11, 2011 at 3:41 PM, Dybowski wrote:

>

>

> They did check for Chiari... nothing there.The headaches started this year

> and I feel like I have this very painful jolt of electricity going through

> my brain. I checked my eyes out, nothing going on.

> I have never heard of a silent migraine.. my sensitivity is 24/7 though.

> Doesn't matter what time of day I hate the light and I hate noise.I do

> have

> big patches on my face that feel very tender (above eyes, jaw) and my face

> tingles a lot, almost like tickling.

>

>

>

>

> >

> >

> >

> > Subject: Re: (seemingly) blaming all on tc

> > To: tetheredspinalcord

> > Date: Monday, April 11, 2011, 2:07 PM

> >

> >

> >

> >

> > Kathy:

> >

> > You have made a valid point. I stand chastened and apologize to all

> > who may

> >

> > have been offended.

> >

> >

> >

> > ________________________________

> >

> >

> >

> > To: tetheredspinalcord

> >

> > Sent: Sat, April 9, 2011 8:29:10 PM

> >

> > Subject: (seemingly) blaming all on tc

> >

> >

> >

> > Hi ,

> >

> > Your blanket statement: " It seems that in (sic) this forum someone will

> try

> > to

> >

> > pin everything on TC. " was an unnecessary put-down to all members (my

> > viewpoint

> >

> > of your statement). There have been members that have been diagnosed

> > with

> > other

> >

> > neurological disorders that have distinctive symptoms that cross over to

> tc

> > yet

> >

> > need a different treatment plan. We've had a member pass away from Lou

> > Gherig's

> >

> > disease, I know we have at least one member that has MS and tethered

> > cord

> > (MS

> >

> > dx'ed long after the tether), along with a host of other seemingly

> > non-related

> >

> > neurological diseases.

> >

> > Chiari can cause eye problems and when you are beginning your learning

> > curve for

> >

> > this condition, it is overwhelming and not everyone is able to weed

> through

> > the

> >

> > host of problems that can arise from a tethered cord, especially when

> >

> > complicated with other conditions such as Chiari. A simple question was

> > asked

> >

> > and your answer with sage advice that it may be age-related is suffice.

> >

> > What may seem obvious to us as age-related or how someone lives (eg:

> > very

> >

> > overweight with increasing back pain) may cause someone else undue

> > stress

> > and

> >

> > worry. Instead of making a nice comment that is only masked

> > condemnation,

> > why

> >

> > not just leave it at the help and also add your view in a positive tone?

> >

> > I think it's great that you shared that you have age-related eye

> > floaters

> > and

> >

> > suggested that this may be the cause vs. Chiari or tether, but the

> > statement

> >

> > that members of this " forum " tend to blame all on their problems on

> > their

> >

> > diagnosis goes overboard. Empathy and education is key along with calm

> >

> > assistance to someone that there could be many other benign reasons for

> > symptoms

> >

> > they are experiencing.

> >

> > We don't all blame everything on our medical dx of tethered cord and/or

> > Chiari -

> >

> > some go the other way and blame truly related symptoms on other issues;

> >

> > ignorance is bliss theory. I just believe the person concerned was

> sincere

> > and

> >

> > we don't know where they are with their education of their condition. We

> > can do

> >

> > more by helping than demeaning with this situation. My patience runs

> short

> > at

> >

> > times, but if someone is truly trying to educate themselves, making the

> > member

> >

> > try to feel small or a hypochondriac is not going to help anyone.

> >

> > Kathy

> >

> > <Snip> It seems that in this forum someone will try tp pin

> >

> > everything on TC. Some things as just the natural progress (or regress)

> of

> >

> > aging. I also have cataracts, but would certainly not try to blame them

> on

> > TC.

> >

> >

> >

> > ________________________________

> >

> >

> >

> > To: tetheredspinalcord

> >

> > Sent: Sat, April 9, 2011 12:34:18 PM

> >

> > Subject: Re: Eye issues and Tethered Cord

> >

> > Generally speaking, I do have to say that it does point to more of a

> Chiari

> >

> >

> > isse rather than Tethered Cord. Because

> >

> > with alot of the eye issues with Chiari, it isn't that there is a

> > problem

> >

> > with the Eyes themselves, it is more that

> >

> > the Brain is intrupting things different and it mimics an eye issue

> > (Hope

> >

> > that made sense). However, I do have

> >

> > to say, I can see how it could be a Tethered Cord issue as

> >

> > well......especially if it was a very tight Tether, more of

> >

> > an extreme case.

> >

> > Brande

> >

> > mymocha@...

> >

> > > In response to Brande and the question with eye issues and tethered

> >

> > > cord... I started seeing black floaters at the same time that the pain

> in

> >

> >

> > > my heels and arches started. Both started at the exact same time, and

> the

> >

> >

> > > floaters are black squiggly/cobweb type things.

> >

> > >

> >

> > > Given my connective tissue disorder, I went to the ophthalmologist to

> > rule

> >

> > > out a retinal tear, and the ophthalmologist said that my eyes could

> > > not

> > be

> >

> > > any healthier. So, my question to the group is, is this more of a

> Chiari

> >

> > > symptom, or more of a cord symptom like Brande was wondering?

> >

> > >

> >

> >

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Share on other sites
Guest guest

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Posted
Posted

Honestly, when my doctor first suggested it, I thought he was just blowing

smoke up my ass, like he'd had as much of me as he could take and was making

stuff up. Went to the neurologist and what do you know, there is really such a

thing as silent migraine. There is a lot of information on them, WebMD has some

good info. If you get regular migraines, next time you feel these symptoms

without pain, take your migraine meds and see if they help get rid of the

weirdness.

Actually, as I'm typing this, I'm starting to feel the very familiar stupid. I

get these at least once a month. They're better than the painful ones, but still

frustrating when my job requires me to be able to think.

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 4:48:18 PM

Subject: Re: (seemingly) blaming all on tc

I will check it out :) I had no idea there was such a thing

>

>

>

> Subject: Re: (seemingly) blaming all on tc

> To: tetheredspinalcord

> Date: Monday, April 11, 2011, 2:07 PM

>

>

>

>

> Kathy:

>

> You have made a valid point. I stand chastened and apologize to all

> who may

>

> have been offended.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 8:29:10 PM

>

> Subject: (seemingly) blaming all on tc

>

>

>

> Hi ,

>

> Your blanket statement: " It seems that in (sic) this forum someone will try

> to

>

> pin everything on TC. " was an unnecessary put-down to all members (my

> viewpoint

>

> of your statement). There have been members that have been diagnosed with

> other

>

> neurological disorders that have distinctive symptoms that cross over to tc

> yet

>

> need a different treatment plan. We've had a member pass away from Lou

> Gherig's

>

> disease, I know we have at least one member that has MS and tethered cord

> (MS

>

> dx'ed long after the tether), along with a host of other seemingly

> non-related

>

> neurological diseases.

>

> Chiari can cause eye problems and when you are beginning your learning

> curve for

>

> this condition, it is overwhelming and not everyone is able to weed through

> the

>

> host of problems that can arise from a tethered cord, especially when

>

> complicated with other conditions such as Chiari. A simple question was

> asked

>

> and your answer with sage advice that it may be age-related is suffice.

>

> What may seem obvious to us as age-related or how someone lives (eg: very

>

> overweight with increasing back pain) may cause someone else undue stress

> and

>

> worry. Instead of making a nice comment that is only masked condemnation,

> why

>

> not just leave it at the help and also add your view in a positive tone?

>

> I think it's great that you shared that you have age-related eye floaters

> and

>

> suggested that this may be the cause vs. Chiari or tether, but the

> statement

>

> that members of this " forum " tend to blame all on their problems on their

>

> diagnosis goes overboard. Empathy and education is key along with calm

>

> assistance to someone that there could be many other benign reasons for

> symptoms

>

> they are experiencing.

>

> We don't all blame everything on our medical dx of tethered cord and/or

> Chiari -

>

> some go the other way and blame truly related symptoms on other issues;

>

> ignorance is bliss theory. I just believe the person concerned was sincere

> and

>

> we don't know where they are with their education of their condition. We

> can do

>

> more by helping than demeaning with this situation. My patience runs short

> at

>

> times, but if someone is truly trying to educate themselves, making the

> member

>

> try to feel small or a hypochondriac is not going to help anyone.

>

> Kathy

>

> <Snip> It seems that in this forum someone will try tp pin

>

> everything on TC. Some things as just the natural progress (or regress) of

>

> aging. I also have cataracts, but would certainly not try to blame them on

> TC.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Sat, April 9, 2011 12:34:18 PM

>

> Subject: Re: Eye issues and Tethered Cord

>

> Generally speaking, I do have to say that it does point to more of a Chiari

>

>

> isse rather than Tethered Cord. Because

>

> with alot of the eye issues with Chiari, it isn't that there is a problem

>

> with the Eyes themselves, it is more that

>

> the Brain is intrupting things different and it mimics an eye issue (Hope

>

> that made sense). However, I do have

>

> to say, I can see how it could be a Tethered Cord issue as

>

> well......especially if it was a very tight Tether, more of

>

> an extreme case.

>

> Brande

>

> mymocha@...

>

> > In response to Brande and the question with eye issues and tethered

>

> > cord... I started seeing black floaters at the same time that the pain in

>

>

> > my heels and arches started. Both started at the exact same time, and the

>

>

> > floaters are black squiggly/cobweb type things.

>

> >

>

> > Given my connective tissue disorder, I went to the ophthalmologist to

> rule

>

> > out a retinal tear, and the ophthalmologist said that my eyes could not

> be

>

> > any healthier. So, my question to the group is, is this more of a Chiari

>

> > symptom, or more of a cord symptom like Brande was wondering?

>

> >

>

>

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