hi

[Guest guest]

Brande ,

Good point! I am 40 and just had my 4th detethering. Now I know I haven't grown

in the last 20 years since my last one. I had my first at 6 and they told my

parents at that time when I turned 18 it was likely I would need it again

because of growing. What they didn't tell them that I would need it again 3

years later then again 20 yrs later. I suppose it could depend on the person. We

just don't know because in are own way we are all different although a lot of

our symptoms are the same. The time between tethering with complications varies.

I could have been tethered sooner and just not had any trouble until the last

few years. Chris

Re: hi

Even though while a Child is still growing and Growth Spurts often can bring

on Symptoms of a Tethered Cord, that doesn't mean after the person is done

Growing that the problems are done with, in regards to Tethered Cord.

Unfortunately, they have come to realize that Tethered Cord can still, and

often does, show it's ugly Head even after a person is done Growing. So,

while the time around a Growth Spurt is important to watch, it isn't

everything, nor the end of the problem. That's not saying you will have

continued problems for sure, though, you may not. But this is really just to

let you know that there is a possiblity that your problems with Tethered

Cord may not be over with, even though you are done Growing. And then,

Growth Spurts don't bother everybody with Tethered Cord. I didn't have a

problem with them.

Just a cautionary note from Brande.

Me

Nebraska, USA

mymocha@...

The lucky part is that he has already quit growing so they don't expect any

problems post surgery.

[Guest guest]

Brande ,

Good point! I am 40 and just had my 4th detethering. Now I know I haven't grown

in the last 20 years since my last one. I had my first at 6 and they told my

parents at that time when I turned 18 it was likely I would need it again

because of growing. What they didn't tell them that I would need it again 3

years later then again 20 yrs later. I suppose it could depend on the person. We

just don't know because in are own way we are all different although a lot of

our symptoms are the same. The time between tethering with complications varies.

I could have been tethered sooner and just not had any trouble until the last

few years. Chris

Re: hi

Even though while a Child is still growing and Growth Spurts often can bring

on Symptoms of a Tethered Cord, that doesn't mean after the person is done

Growing that the problems are done with, in regards to Tethered Cord.

Unfortunately, they have come to realize that Tethered Cord can still, and

often does, show it's ugly Head even after a person is done Growing. So,

while the time around a Growth Spurt is important to watch, it isn't

everything, nor the end of the problem. That's not saying you will have

continued problems for sure, though, you may not. But this is really just to

let you know that there is a possiblity that your problems with Tethered

Cord may not be over with, even though you are done Growing. And then,

Growth Spurts don't bother everybody with Tethered Cord. I didn't have a

problem with them.

Just a cautionary note from Brande.

Me

Nebraska, USA

mymocha@...

The lucky part is that he has already quit growing so they don't expect any

problems post surgery.

[Guest guest]

Brande ,

Good point! I am 40 and just had my 4th detethering. Now I know I haven't grown

in the last 20 years since my last one. I had my first at 6 and they told my

parents at that time when I turned 18 it was likely I would need it again

because of growing. What they didn't tell them that I would need it again 3

years later then again 20 yrs later. I suppose it could depend on the person. We

just don't know because in are own way we are all different although a lot of

our symptoms are the same. The time between tethering with complications varies.

I could have been tethered sooner and just not had any trouble until the last

few years. Chris

Re: hi

Even though while a Child is still growing and Growth Spurts often can bring

on Symptoms of a Tethered Cord, that doesn't mean after the person is done

Growing that the problems are done with, in regards to Tethered Cord.

Unfortunately, they have come to realize that Tethered Cord can still, and

often does, show it's ugly Head even after a person is done Growing. So,

while the time around a Growth Spurt is important to watch, it isn't

everything, nor the end of the problem. That's not saying you will have

continued problems for sure, though, you may not. But this is really just to

let you know that there is a possiblity that your problems with Tethered

Cord may not be over with, even though you are done Growing. And then,

Growth Spurts don't bother everybody with Tethered Cord. I didn't have a

problem with them.

Just a cautionary note from Brande.

Me

Nebraska, USA

mymocha@...

The lucky part is that he has already quit growing so they don't expect any

problems post surgery.

[Guest guest]

Hi Lily! Welcome to the group. Many of us (if not most) have visual triggers

like you mention too, so yes it is related.

As far as ways of coping, I encourage you to look around here at the older posts

to get some ideas of what might work for you. I can share what personally helps

me a little. I wear earplugs in the most difficult situations. I bought some of

the tan-colored ones and cut them in half so that they don't stick out of my ear

(just be very careful not to stick it in so much as to get lost in your ear!).

By cutting them in half they don't seal off me hearing completely. This works

for me so that I can block out a lot of the sounds (or lessen them) but still

hear conversations. I also use white noise (or brown or pink noise) on my iPod.

I purchased a few tracks on iTunes. There are some free files online that

someone posted a link to a while back. Anyone have that link?

I try to limit my caffeine intake. Coffee makes my reactions much worse.

Deep breathing, telling myself that it will be okay, saying " I choose to be here

and I'm going to endure " - these are things I do from time to time to help me to

cope.

I hope that you find some things on the site that work for you. We're all here

to support you!

Take care,

Cate

>

> Hello. I have a few triggers but depending on the situation I can tolerate

them differently, for instance I hate the sound of chewing it drives me insane I

can't stand being around someone who I can even remotely hear chewing. This

particular trigger has become so bad over the years that I struggle to keep calm

as I listen to myself chewing. This is by far the worst trigger. The feeling I

get when I hear chewing of any sort is terrible I become angry, agressive,

irritable and frustrated beyond what I would otherwise become in any other

situation. Other triggers include the 's' sound in words, and whispering,

whistling, heavy breathing, sniffing, and general mouth noises. Also though I

have the same type feelings when I am around fidgety people. I can't stand

seeing a person, for instance, swaying their legs from side to side as they sit

or tapping their feet. This is not related to sound but apart from that all the

feelings are they same. I was wondering if that could be a similar thing and if

anyone can relate? Also, as I don't feel I'm in a position to afford or access

any therapeutic aids are there any self helping techniques I can try? The best I

have come to do is to simply remove myself from the situation. Thanks

>

[Guest guest]

Hi Lily! Welcome to the group. Many of us (if not most) have visual triggers

like you mention too, so yes it is related.

As far as ways of coping, I encourage you to look around here at the older posts

to get some ideas of what might work for you. I can share what personally helps

me a little. I wear earplugs in the most difficult situations. I bought some of

the tan-colored ones and cut them in half so that they don't stick out of my ear

(just be very careful not to stick it in so much as to get lost in your ear!).

By cutting them in half they don't seal off me hearing completely. This works

for me so that I can block out a lot of the sounds (or lessen them) but still

hear conversations. I also use white noise (or brown or pink noise) on my iPod.

I purchased a few tracks on iTunes. There are some free files online that

someone posted a link to a while back. Anyone have that link?

I try to limit my caffeine intake. Coffee makes my reactions much worse.

Deep breathing, telling myself that it will be okay, saying " I choose to be here

and I'm going to endure " - these are things I do from time to time to help me to

cope.

I hope that you find some things on the site that work for you. We're all here

to support you!

Take care,

Cate

>

> Hello. I have a few triggers but depending on the situation I can tolerate

them differently, for instance I hate the sound of chewing it drives me insane I

can't stand being around someone who I can even remotely hear chewing. This

particular trigger has become so bad over the years that I struggle to keep calm

as I listen to myself chewing. This is by far the worst trigger. The feeling I

get when I hear chewing of any sort is terrible I become angry, agressive,

irritable and frustrated beyond what I would otherwise become in any other

situation. Other triggers include the 's' sound in words, and whispering,

whistling, heavy breathing, sniffing, and general mouth noises. Also though I

have the same type feelings when I am around fidgety people. I can't stand

seeing a person, for instance, swaying their legs from side to side as they sit

or tapping their feet. This is not related to sound but apart from that all the

feelings are they same. I was wondering if that could be a similar thing and if

anyone can relate? Also, as I don't feel I'm in a position to afford or access

any therapeutic aids are there any self helping techniques I can try? The best I

have come to do is to simply remove myself from the situation. Thanks

>

[Guest guest]

Hi Lily! Welcome to the group. Many of us (if not most) have visual triggers

like you mention too, so yes it is related.

As far as ways of coping, I encourage you to look around here at the older posts

to get some ideas of what might work for you. I can share what personally helps

me a little. I wear earplugs in the most difficult situations. I bought some of

the tan-colored ones and cut them in half so that they don't stick out of my ear

(just be very careful not to stick it in so much as to get lost in your ear!).

By cutting them in half they don't seal off me hearing completely. This works

for me so that I can block out a lot of the sounds (or lessen them) but still

hear conversations. I also use white noise (or brown or pink noise) on my iPod.

I purchased a few tracks on iTunes. There are some free files online that

someone posted a link to a while back. Anyone have that link?

I try to limit my caffeine intake. Coffee makes my reactions much worse.

Deep breathing, telling myself that it will be okay, saying " I choose to be here

and I'm going to endure " - these are things I do from time to time to help me to

cope.

I hope that you find some things on the site that work for you. We're all here

to support you!

Take care,

Cate

>

> Hello. I have a few triggers but depending on the situation I can tolerate

them differently, for instance I hate the sound of chewing it drives me insane I

can't stand being around someone who I can even remotely hear chewing. This

particular trigger has become so bad over the years that I struggle to keep calm

as I listen to myself chewing. This is by far the worst trigger. The feeling I

get when I hear chewing of any sort is terrible I become angry, agressive,

irritable and frustrated beyond what I would otherwise become in any other

situation. Other triggers include the 's' sound in words, and whispering,

whistling, heavy breathing, sniffing, and general mouth noises. Also though I

have the same type feelings when I am around fidgety people. I can't stand

seeing a person, for instance, swaying their legs from side to side as they sit

or tapping their feet. This is not related to sound but apart from that all the

feelings are they same. I was wondering if that could be a similar thing and if

anyone can relate? Also, as I don't feel I'm in a position to afford or access

any therapeutic aids are there any self helping techniques I can try? The best I

have come to do is to simply remove myself from the situation. Thanks

>

[Guest guest]

I react to the sight of jiggling legs. I think it is the repetitive movement.

The brain usually switches off when it sees harmless repetitive movement, but

our brains seem to keep on noticing it ... and to find it annoying. Our sound

sensitivity also seems - at least in part - triggered by repetition: chewing,

sniffling, tapping, etc. And then we get frustrated because we cannot stop the

repetition, and our reaction is worse: we cannot " switch off " our attention to

the sound or sight AND we cannot switch off the actual sound or sight itself ...

SOLUTIONS?

If you can get a cheap mp3 player (any brand will do - you don't need to buy an

iPod), then you should download a free file of " pink noise " (we can tell you

where to get those) and listen to it when you are with other people. If you have

long hair, you may be able to hide your earphones. I found using an MP3 player

to be very helpful in a number of situations that used to torture me (such as

travelling on the train and being stuck next to someone eating or drinking).

>

> Also though I have the same type feelings when I am around fidgety people. I

can't stand seeing a person, for instance, swaying their legs from side to side

as they sit or tapping their feet. This is not related to sound but apart from

that all the feelings are they same. I was wondering if that could be a similar

thing and if anyone can relate? Also, as I don't feel I'm in a position to

afford or access any therapeutic aids are there any self helping techniques I

can try? The best I have come to do is to simply remove myself from the

situation. Thanks

>

[Guest guest]

I react to the sight of jiggling legs. I think it is the repetitive movement.

The brain usually switches off when it sees harmless repetitive movement, but

our brains seem to keep on noticing it ... and to find it annoying. Our sound

sensitivity also seems - at least in part - triggered by repetition: chewing,

sniffling, tapping, etc. And then we get frustrated because we cannot stop the

repetition, and our reaction is worse: we cannot " switch off " our attention to

the sound or sight AND we cannot switch off the actual sound or sight itself ...

SOLUTIONS?

If you can get a cheap mp3 player (any brand will do - you don't need to buy an

iPod), then you should download a free file of " pink noise " (we can tell you

where to get those) and listen to it when you are with other people. If you have

long hair, you may be able to hide your earphones. I found using an MP3 player

to be very helpful in a number of situations that used to torture me (such as

travelling on the train and being stuck next to someone eating or drinking).

>

> Also though I have the same type feelings when I am around fidgety people. I

can't stand seeing a person, for instance, swaying their legs from side to side

as they sit or tapping their feet. This is not related to sound but apart from

that all the feelings are they same. I was wondering if that could be a similar

thing and if anyone can relate? Also, as I don't feel I'm in a position to

afford or access any therapeutic aids are there any self helping techniques I

can try? The best I have come to do is to simply remove myself from the

situation. Thanks

>

[Guest guest]

I react to the sight of jiggling legs. I think it is the repetitive movement.

The brain usually switches off when it sees harmless repetitive movement, but

our brains seem to keep on noticing it ... and to find it annoying. Our sound

sensitivity also seems - at least in part - triggered by repetition: chewing,

sniffling, tapping, etc. And then we get frustrated because we cannot stop the

repetition, and our reaction is worse: we cannot " switch off " our attention to

the sound or sight AND we cannot switch off the actual sound or sight itself ...

SOLUTIONS?

If you can get a cheap mp3 player (any brand will do - you don't need to buy an

iPod), then you should download a free file of " pink noise " (we can tell you

where to get those) and listen to it when you are with other people. If you have

long hair, you may be able to hide your earphones. I found using an MP3 player

to be very helpful in a number of situations that used to torture me (such as

travelling on the train and being stuck next to someone eating or drinking).

>

> Also though I have the same type feelings when I am around fidgety people. I

can't stand seeing a person, for instance, swaying their legs from side to side

as they sit or tapping their feet. This is not related to sound but apart from

that all the feelings are they same. I was wondering if that could be a similar

thing and if anyone can relate? Also, as I don't feel I'm in a position to

afford or access any therapeutic aids are there any self helping techniques I

can try? The best I have come to do is to simply remove myself from the

situation. Thanks

>

[Guest guest]

Oh my me too! I hate jiggling legs, sometimes I have to put my hand on the side of my head to block out the person next to me doing it. The list of what bothers me is so long, it really can be overwhelming but at least every other day I make a point to laugh at it because it really is phenomial to be so annoyed all the time. I try to make fun of myself as much as possible, it keeps me sane and makes me a happy person. Lots of sleep helps too, makes the reaction less intense.I react to the sight of jiggling legs. I think it is the repetitive movement. The brain usually switches off when it sees harmless repetitive movement, but our brains seem to keep on noticing it ... and to find it annoying. Our sound sensitivity also seems - at least in part - triggered by repetition: chewing, sniffling, tapping, etc. And then we get frustrated because we cannot stop the repetition, and our reaction is worse: we cannot "switch off" our attention to the sound or sight AND we cannot switch off the actual sound or sight itself ...SOLUTIONS?If you can get a cheap mp3 player (any brand will do - you don't need to buy an iPod), then you should download a free file of "pink noise" (we can tell you where to get those) and listen to it when you are with other people. If you have long hair, you may be able to hide your earphones. I found using an MP3 player to be very helpful in a number of situations that used to torture me (such as travelling on the train and being stuck next to someone eating or drinking).>> Also though I have the same type feelings when I am around fidgety people. I can't stand seeing a person, for instance, swaying their legs from side to side as they sit or tapping their feet. This is not related to sound but apart from that all the feelings are they same. I was wondering if that could be a similar thing and if anyone can relate? Also, as I don't feel I'm in a position to afford or access any therapeutic aids are there any self helping techniques I can try? The best I have come to do is to simply remove myself from the situation. Thanks>

[Guest guest]

Oh my me too! I hate jiggling legs, sometimes I have to put my hand on the side of my head to block out the person next to me doing it. The list of what bothers me is so long, it really can be overwhelming but at least every other day I make a point to laugh at it because it really is phenomial to be so annoyed all the time. I try to make fun of myself as much as possible, it keeps me sane and makes me a happy person. Lots of sleep helps too, makes the reaction less intense.I react to the sight of jiggling legs. I think it is the repetitive movement. The brain usually switches off when it sees harmless repetitive movement, but our brains seem to keep on noticing it ... and to find it annoying. Our sound sensitivity also seems - at least in part - triggered by repetition: chewing, sniffling, tapping, etc. And then we get frustrated because we cannot stop the repetition, and our reaction is worse: we cannot "switch off" our attention to the sound or sight AND we cannot switch off the actual sound or sight itself ...SOLUTIONS?If you can get a cheap mp3 player (any brand will do - you don't need to buy an iPod), then you should download a free file of "pink noise" (we can tell you where to get those) and listen to it when you are with other people. If you have long hair, you may be able to hide your earphones. I found using an MP3 player to be very helpful in a number of situations that used to torture me (such as travelling on the train and being stuck next to someone eating or drinking).>> Also though I have the same type feelings when I am around fidgety people. I can't stand seeing a person, for instance, swaying their legs from side to side as they sit or tapping their feet. This is not related to sound but apart from that all the feelings are they same. I was wondering if that could be a similar thing and if anyone can relate? Also, as I don't feel I'm in a position to afford or access any therapeutic aids are there any self helping techniques I can try? The best I have come to do is to simply remove myself from the situation. Thanks>

[Guest guest]

Oh my me too! I hate jiggling legs, sometimes I have to put my hand on the side of my head to block out the person next to me doing it. The list of what bothers me is so long, it really can be overwhelming but at least every other day I make a point to laugh at it because it really is phenomial to be so annoyed all the time. I try to make fun of myself as much as possible, it keeps me sane and makes me a happy person. Lots of sleep helps too, makes the reaction less intense.I react to the sight of jiggling legs. I think it is the repetitive movement. The brain usually switches off when it sees harmless repetitive movement, but our brains seem to keep on noticing it ... and to find it annoying. Our sound sensitivity also seems - at least in part - triggered by repetition: chewing, sniffling, tapping, etc. And then we get frustrated because we cannot stop the repetition, and our reaction is worse: we cannot "switch off" our attention to the sound or sight AND we cannot switch off the actual sound or sight itself ...SOLUTIONS?If you can get a cheap mp3 player (any brand will do - you don't need to buy an iPod), then you should download a free file of "pink noise" (we can tell you where to get those) and listen to it when you are with other people. If you have long hair, you may be able to hide your earphones. I found using an MP3 player to be very helpful in a number of situations that used to torture me (such as travelling on the train and being stuck next to someone eating or drinking).>> Also though I have the same type feelings when I am around fidgety people. I can't stand seeing a person, for instance, swaying their legs from side to side as they sit or tapping their feet. This is not related to sound but apart from that all the feelings are they same. I was wondering if that could be a similar thing and if anyone can relate? Also, as I don't feel I'm in a position to afford or access any therapeutic aids are there any self helping techniques I can try? The best I have come to do is to simply remove myself from the situation. Thanks>

[Guest guest]

I do that too! Deliberatly sitting or leaning yourself in a certain way so you

can't see the person doing it. One of my friends is really bad, he can just

never sit still. I find I don't ever really want to be around him anymore becase

of it :-/

I often wonder if eventually I'll just get over these things?

[Guest guest]

Hola a las dos,

Soy inglesa pero vivo en Fuerteventura y es muy difícil porque aquí no se

entiende este síndrome. Intenté hablar con un psicólogo pero no sabía del tema y

tras varias sesiones me di cuenta de que tampoco se interesaba en buscar

información para entender mi situación. No me rindo porque aquí y en otros

grupos he encontrado mucho apoyo y también truquillos para llevar mejor esta

pesadilla que vivimos.

Suerte!!!

> >

> >

> > Hello,

> > My name is and I have 44 years. 4S I know that I have but I've never

been diagnosed. In Spain I have not found any information. Someone could

recommend a good doctor?

> > Sorry, but no English. I used a translator.

> >

> >

> >

>

[Guest guest]

Hola a las dos,

Soy inglesa pero vivo en Fuerteventura y es muy difícil porque aquí no se

entiende este síndrome. Intenté hablar con un psicólogo pero no sabía del tema y

tras varias sesiones me di cuenta de que tampoco se interesaba en buscar

información para entender mi situación. No me rindo porque aquí y en otros

grupos he encontrado mucho apoyo y también truquillos para llevar mejor esta

pesadilla que vivimos.

Suerte!!!

> >

> >

> > Hello,

> > My name is and I have 44 years. 4S I know that I have but I've never

been diagnosed. In Spain I have not found any information. Someone could

recommend a good doctor?

> > Sorry, but no English. I used a translator.

> >

> >

> >

>

[Guest guest]

Hola a las dos,

Soy inglesa pero vivo en Fuerteventura y es muy difícil porque aquí no se

entiende este síndrome. Intenté hablar con un psicólogo pero no sabía del tema y

tras varias sesiones me di cuenta de que tampoco se interesaba en buscar

información para entender mi situación. No me rindo porque aquí y en otros

grupos he encontrado mucho apoyo y también truquillos para llevar mejor esta

pesadilla que vivimos.

Suerte!!!

> >

> >

> > Hello,

> > My name is and I have 44 years. 4S I know that I have but I've never

been diagnosed. In Spain I have not found any information. Someone could

recommend a good doctor?

> > Sorry, but no English. I used a translator.

> >

> >

> >

>

[Guest guest]

http://www.co-cure.org/good-doc.htm

and

Might want to also try this website:

http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm and

if the " FInd a Physcian... " link does not work try " contact us " my dr is on both

of these websites.

GG in NH

>

> New to this group. I'm Steve from Connecticut. I'm looking for a proficient

Chronic Fatigue Specialist in my state, MA or NY. Does anyone know of such a

doctor?

>

> Sent from my iPhone

>

[Guest guest]

http://www.co-cure.org/good-doc.htm

and

Might want to also try this website:

http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm and

if the " FInd a Physcian... " link does not work try " contact us " my dr is on both

of these websites.

GG in NH

>

> New to this group. I'm Steve from Connecticut. I'm looking for a proficient

Chronic Fatigue Specialist in my state, MA or NY. Does anyone know of such a

doctor?

>

> Sent from my iPhone

>

[Guest guest]

>

> I know I'm not alone.. my brainfog makes it extremely difficult to read a book

like in my pre-CFS & pre-FM days. It now takes me 3x as long and out of

frustration I gave up.

> Is there anything that helps with this?

> PJni==

>

i have a new email address annettini935@...

i am suffering with chronic kidney stones and it is so pain ful thisis my five

one

does anyone know of anything to help them pass or med to block them from forming

netty