Re: New here

[Guest guest]

Might want to have urodynamic testing done to see how much of a problem it is

causing and also consult with a pediatric NS.

I thought I read that sleeping on side is better position, but with symptoms

that does not help me, so I would also like to know the best position to sleep.

>

>

> Hi,

> I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

> My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

>

> The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

>

> I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

>

> Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

>

> I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

> Is there anything else you would suggest that I do, or ask for?

>

> Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to

limit stretching the cord? any more suggestions?

>

> thank you

> Margaret

>

[Guest guest]

Hi Margaret,

Welcome to the group.

First, I am very sorry that you are joining our club, but life goes on and

things do get better. This is a great group.

I would highly caution you and make sure that you see a pediatric neurosurgeon

that specializes in TC.

I was diagnosed last year after years of pain, bladder and pelvic issues. I

finally asked for a new MRI. My doctor, like yours brushed my concerns aside, he

even explained the condition to me wrong! He then wanted to continue with nerve

blocks and an epidural (cortisone).I was told by 3 neurosurgeons to NOT under

any circumstances do the injections. In fact I was sent for the MRI after an

injection and my situation got worse, Severe burning up my spine etc. My doctor

too was being very strange. But then I got a bill from the old injection, he was

charging $2000!  When I told him I need to see the neurosurgeon prior to having

anything else done he took my pain medications away, and told me that it was

injections and pain medications OR nothing.I was devastated, after all, he just

gave me 2 weeks off work because I could not sit, walk or sleep (I was sleeping

2 hours a night for the last 2 months). I fired him and found people who wanted

to talk to me.

The injections have their own risks.

I see Dr. Frim in Chicago. He explained to me that the surgery is not done

for pain, it is done to prevent neurological decline. I had major bladder issues

(going 30 times a day) and pain/numbness in my legs as well as lower back.

Have you had a urodynamic study?

I had surgery November 23rd, my bladder issues are gone, the leg pain is the

same, the back pain is better (I do not wake up in lower back pain anymore).

You will need a good neurosurgeon (pediatric) and a pain management physician,

as well as physical therapist.

I used to sleep on my stomach, but I don't know if there is anything you can do

to really prevent stretching. Let me know if I can answer any specific

questions. I also had fatty filum, my cord is now " free "

Subject: New here

To: tetheredspinalcord

Date: Thursday, March 17, 2011, 6:17 PM

 

Hi,

I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to

limit stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

Welcome and glad you found this site. I am appalled that your MD would do

that. I think it is inexcusable. PLEASE do not get any injections into

your spine as they wouldn't expect the cord to be as low as it probably is.

As others have said, time for a consult with a pediatric NSG who sees

Adults..if nothing more than to get an explanation and understanding of TSC.

If

you say where you live, others may have good suggestions for you close by.

Much good luck and keep us posted regarding what you discover. Hugs,

Randee

In a message dated 3/17/2011 6:17:07 P.M. Central Daylight Time,

patientperspective@... writes:

Hi,

I had an MRI recently, and it might only be because my massage therapist

asked to see a copy of it that I read the MRI and saw the last conclusion

said that the findings were of a tethered cord (lower lying conus and fatty

filum terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes

in L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and

weakness in my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he

more or less interrupted me and said that when he looks at an MRI, it's his

job to determine if I am a surgical candidate or not. I do recall him saying

that people in my situation can often end up worse after surgery, and I

suppose from what I've read in some places online that that can be the case

with TC release, if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess

this is for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements

you try to avoid? What about sleeping, is there a way you position yourself

to limit stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

Welcome Margaret Sorry you are here but glad you came. Do not get any

injections. Before my TC was diagnosed, I was told it was a L5 disc issue and

they gave me an injection which landed me in the ER. Dont do it. Find a doc that

specializes in adult TC and IF they ok it then find another doc ....lol...but

not really. Seriously, they can make things way worse for you.    Many

Blessings, (who's middle name is Margaret

Subject: New here

To: tetheredspinalcord

Date: Thursday, March 17, 2011, 6:17 PM

 

Hi,

I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

Welcome Margaret.

Don't want to speak for everyone else, but what I have learned is that some

doctors don't really understand TC as well as they pretend to.

Like you I saw a few doctors and TC never came up as an issue. They tend to

focus more on the results as opposed to the cause. In my case Syringomyelia was

more of the concern and was attributed to my issues. This didn't make sense to

me because I had a lot of my symptoms before the syrinx.

After no one was able to give me an answer beyond " possible spinal cord injury, "

I happened to be exploring the syrinx issue online and came across a doctor that

explained that Syringomyelia can be caused by TC. Looking at the symptoms of TC

I realized that is what I had, and this same doctor later confirmed it. For me,

mine is also trauma based, which differs a bit from the cogenital.

Hope that explains some of the reasons why.

Sent via BlackBerry by AT & T

New here

Hi,

I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to

limit stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

Please visit my blog. I just started it but I want to hear from others that are

living with TCS. It will also give information on what I am learning as I go

through my second untethering surgery. http://beegeelover.blogspot.com/

Please feel free to leave comments.

To: tetheredspinalcord

From: patientperspective@...

Date: Thu, 17 Mar 2011 23:17:02 +0000

Subject: New here

Hi,

I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

I agree with that some(maybe many in my opinion) doctors don't really

understand TC as welll as they pretend to.

Are you seening another nsg? And yes, it is possible that positional movements

of the spine can/does stretch the spinal cord. The spinal cord is suppose to be

freely moveable.  So whenever we move/bend the sc moves up/down/sideways with

the body.  The filum is suppose to be like a stretchy rubber band.  But when

it does not stretch as in thicken/fatty filum or 'stuck' somewhere in the

spine

then it cannot move and thus the sc it self is stretched tighter and this

stretched cord prevents the blood from getting to it and when there is less

blood flow then the nerves can not work well or die eventually and

thus symptoms.

  Have you noticed any change to your symptoms when you 'stretch' the cord? 

How

much it is damaging it, who knows? 

Hope this helps.  The cortisone injections can help the degeneration and ?maybe

temporary help with some of the other symptoms as it may decrease some swelling

to the nerves too.  But, it most likey will be a temporay relief if you really

have a tethered cord. Good luck.

________________________________

To: tetheredspinalcord

Sent: Thu, March 17, 2011 8:15:10 PM

Subject: Re: New here

 

Welcome Margaret.

Don't want to speak for everyone else, but what I have learned is that some

doctors don't really understand TC as well as they pretend to.

Like you I saw a few doctors and TC never came up as an issue. They tend to

focus more on the results as opposed to the cause. In my case Syringomyelia was

more of the concern and was attributed to my issues. This didn't make sense to

me because I had a lot of my symptoms before the syrinx.

After no one was able to give me an answer beyond " possible spinal cord injury, "

I happened to be exploring the syrinx issue online and came across a doctor that

explained that Syringomyelia can be caused by TC. Looking at the symptoms of TC

I realized that is what I had, and this same doctor later confirmed it. For me,

mine is also trauma based, which differs a bit from the cogenital.

Hope that explains some of the reasons why.

Sent via BlackBerry by AT & T

New here

Hi,

I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

I developed hyrdosyringomyelia after my second surgery. For me, my syrinx

caused significantly more problems (neuro decline, pain, spasticity, etc)

than my TC alone ever did. Unfortunately, the surgery to correct my syrinx

left me paralyzed; however, I was pretty limited in my mobility going into

that surgery. I wasn't able to drive anymore and could barely walk even with

bilateral AFOs and forearm crutches.

Jenn

>

>

> Like you I saw a few doctors and TC never came up as an issue. They tend to

> focus more on the results as opposed to the cause. In my case Syringomyelia

> was more of the concern and was attributed to my issues. This didn't make

> sense to me because I had a lot of my symptoms before the syrinx.

>

> After no one was able to give me an answer beyond " possible spinal cord

> injury, " I happened to be exploring the syrinx issue online and came across

> a doctor that explained that Syringomyelia can be caused by TC. Looking at

> the symptoms of TC I realized that is what I had, and this same doctor later

> confirmed it. For me, mine is also trauma based, which differs a bit from

> the cogenital.

>

> Hope that explains some of the reasons why.

>

>

>

[Guest guest]

I agree with Randee that you really need to see a pediatric neurosurgeon

that specializes in NTDs. IMO, they are really the only ones that are

qualified to make any decisions about what treatment should or should not be

done.

I have a different view of injections. When my symptoms first started (after

a car accident), they thought it was a disc injury. They knew I had SBO, but

didn't know about TC. I had an epidural cortisone injection and it relieved

my pain for about 3 years.

When the pain returned, I went to my neurologist at the time and he refused

to do any more injections until I had a MRI. He wanted to make sure there

wasn't anything under the SBO. Indeed there was - diastematomyelia and TC.

Since my 3 surgeries, I have since had a host of different injections -

epidural cortisone, nerve blocks, facet injections, etc. None of them

provided any relief like the first one.

I want to qualify what others have said about injections. I would say, DO

NOT (under any circumstances) have an injections done UNTIL you have a MRI

and know where your cord ends. So long as they know where your cord ends,

they can safely do an injection below the level of where your cord ends. I

was very lucky with my initial injection. He did it at L2, and my cord ended

at L4. I was VERY lucky that he didn't hit my cord or do some permanent

damage. Before you agree to any injections, just make sure you have a MRI

and the MD knows for certain where your cord ends and that the injection is

done below that level.

Jenn

>

>

> Welcome and glad you found this site. I am appalled that your MD would do

> that. I think it is inexcusable. PLEASE do not get any injections into

> your spine as they wouldn't expect the cord to be as low as it probably is.

>

> As others have said, time for a consult with a pediatric NSG who sees

> Adults..if nothing more than to get an explanation and understanding of

> TSC. If

> you say where you live, others may have good suggestions for you close by.

> Much good luck and keep us posted regarding what you discover. Hugs,

> Randee

>

[Guest guest]

Yes, I agree. I had an injection to see if it would make a difference with my

spondylolisthesis symptoms -- this was after my detethering and MRI's, and it

was my NS who ordered this (who knew exactly where my spinal cord ended). I

agree with Jenn -- an injection can be safe as long as they know where your

spinal cord is -- but this is VERY important. The injection didn't do anything

for me in the end.

Dee

To: tetheredspinalcord

From: jlbobin@...

Date: Fri, 18 Mar 2011 21:15:54 -0400

Subject: Re: New here

I agree with Randee that you really need to see a pediatric neurosurgeon

that specializes in NTDs. IMO, they are really the only ones that are

qualified to make any decisions about what treatment should or should not be

done.

I have a different view of injections. When my symptoms first started (after

a car accident), they thought it was a disc injury. They knew I had SBO, but

didn't know about TC. I had an epidural cortisone injection and it relieved

my pain for about 3 years.

When the pain returned, I went to my neurologist at the time and he refused

to do any more injections until I had a MRI. He wanted to make sure there

wasn't anything under the SBO. Indeed there was - diastematomyelia and TC.

Since my 3 surgeries, I have since had a host of different injections -

epidural cortisone, nerve blocks, facet injections, etc. None of them

provided any relief like the first one.

I want to qualify what others have said about injections. I would say, DO

NOT (under any circumstances) have an injections done UNTIL you have a MRI

and know where your cord ends. So long as they know where your cord ends,

they can safely do an injection below the level of where your cord ends. I

was very lucky with my initial injection. He did it at L2, and my cord ended

at L4. I was VERY lucky that he didn't hit my cord or do some permanent

damage. Before you agree to any injections, just make sure you have a MRI

and the MD knows for certain where your cord ends and that the injection is

done below that level.

Jenn

>

>

> Welcome and glad you found this site. I am appalled that your MD would do

> that. I think it is inexcusable. PLEASE do not get any injections into

> your spine as they wouldn't expect the cord to be as low as it probably is.

>

> As others have said, time for a consult with a pediatric NSG who sees

> Adults..if nothing more than to get an explanation and understanding of

> TSC. If

> you say where you live, others may have good suggestions for you close by.

> Much good luck and keep us posted regarding what you discover. Hugs,

> Randee

>

[Guest guest]

Margaret,

I agree with , you need a good pediatric neurologist. They are more

qualified to treat this condition as they deal with it all the time. I am

scheduled for my second untethering on the 22nd and would not let anyone else

touch me. I struggle with pain and bladder and bowel problems but am hopiing

some of this will improve with the surgery. I really dread having the surgery a

second time but I have to. Please get an opinion from a good ped neuro.

To: tetheredspinalcord

From: lilacs007@...

Date: Thu, 17 Mar 2011 16:49:33 -0700

Subject: Re: New here

Hi Margaret,

Welcome to the group.

First, I am very sorry that you are joining our club, but life goes on and

things do get better. This is a great group.

I would highly caution you and make sure that you see a pediatric neurosurgeon

that specializes in TC.

I was diagnosed last year after years of pain, bladder and pelvic issues. I

finally asked for a new MRI. My doctor, like yours brushed my concerns aside, he

even explained the condition to me wrong! He then wanted to continue with nerve

blocks and an epidural (cortisone).I was told by 3 neurosurgeons to NOT under

any circumstances do the injections. In fact I was sent for the MRI after an

injection and my situation got worse, Severe burning up my spine etc. My doctor

too was being very strange. But then I got a bill from the old injection, he was

charging $2000! When I told him I need to see the neurosurgeon prior to having

anything else done he took my pain medications away, and told me that it was

injections and pain medications OR nothing.I was devastated, after all, he just

gave me 2 weeks off work because I could not sit, walk or sleep (I was sleeping

2 hours a night for the last 2 months). I fired him and found people who wanted

to talk to me.

The injections have their own risks.

I see Dr. Frim in Chicago. He explained to me that the surgery is not done

for pain, it is done to prevent neurological decline. I had major bladder issues

(going 30 times a day) and pain/numbness in my legs as well as lower back.

Have you had a urodynamic study?

I had surgery November 23rd, my bladder issues are gone, the leg pain is the

same, the back pain is better (I do not wake up in lower back pain anymore).

You will need a good neurosurgeon (pediatric) and a pain management physician,

as well as physical therapist.

I used to sleep on my stomach, but I don't know if there is anything you can do

to really prevent stretching. Let me know if I can answer any specific

questions. I also had fatty filum, my cord is now " free "

Subject: New here

To: tetheredspinalcord

Date: Thursday, March 17, 2011, 6:17 PM

Hi,

I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

Is there anything else you would suggest that I do, or ask for?

Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

thank you

Margaret

[Guest guest]

,

Sounds like you do need another surgery if your neuro status is continuing

to decline. But remember that the point of surgery is not to regain lost

function, rather to arrest any further loss of function. Some people will

regain function after surgery, but not everyone (and some will even lose

some function) - any functional return is just a bonus.

Jenn

On Sat, Mar 19, 2011 at 5:56 AM, patricia fischer <

patriciafischer@...> wrote:

> I am scheduled for my second untethering on the 22nd and would not let

> anyone else touch me. I struggle with pain and bladder and bowel problems

> but am hopiing some of this will improve with the surgery. I really dread

> having the surgery a second time but I have to.

>

>

>

>

[Guest guest]

I know, but the doctor says that when he untethers the cord it should release

the pressure on the nerve that controls my foot. I know after my last surgery I

started to get better and then all of a sudden I started to decline. Where my

cord is tethered it is pressing on the nerve that controls my foot. I am hoping

to feel better after this is all done.

To: tetheredspinalcord

From: jlbobin@...

Date: Sat, 19 Mar 2011 06:39:29 -0400

Subject: Re: New here

,

Sounds like you do need another surgery if your neuro status is continuing

to decline. But remember that the point of surgery is not to regain lost

function, rather to arrest any further loss of function. Some people will

regain function after surgery, but not everyone (and some will even lose

some function) - any functional return is just a bonus.

Jenn

On Sat, Mar 19, 2011 at 5:56 AM, patricia fischer <

patriciafischer@...> wrote:

> I am scheduled for my second untethering on the 22nd and would not let

> anyone else touch me. I struggle with pain and bladder and bowel problems

> but am hopiing some of this will improve with the surgery. I really dread

> having the surgery a second time but I have to.

>

>

>

>

[Guest guest]

First of all, thank you everyone for your replies.

I haven't seen a NSG but I have had an MRI, my cord ends between L2-L3, that is

where the conus is lying.

I have been very stressed since hearing about others' experiences with the

injections and that the NSG were advising not to get them etc - and also since I

have read on some web sites that abnormalities in your spinal cord can be

considered a contraindication to the injections. And if the injections tend not

to do something or make you worse than what is the point? So my strategy is

going to be to see what the anesthesiologist says at the consultation and if he

still thinks it is ok to do the injections, I am going to ask him why. I am

going to ask how many other TCS patients he has given injections and what were

the short term and long term results. I am going to bring copies of the

information I've read here and on other web sites and explain that I really

cannot risk adding more damage/more health problems to my life and if it means

waiting a year to see a neurosurgeon to clear me to get the injections then

that is what I will do.

I said waiting a year because my urologist told me that is how long it would

take, unless I was experiencing bowel incontinence in which case that would

indicate the cord was too strained and it would force them to consider me an

urgent case and operate.

I haven't had urodynamic study, I don't really know that I need one yet, I am

just prescribed medication intended for incontinence to prevent some of the

frequency/urgency. Frequency/urgency is my main issue, my incontinence has

mostly involved two incidents in bed in the a.m. and then a longer 2 week period

that occurred a six years ago.

I agree with what and another lady said - I think some doctors, including

my own, just don't know that much about tethered cords. I know someone said it

is inexcusable that my doc didn't tell me but it is a miracle that I finally got

a doctor to take me seriously enough to send me for not one, but two MRIs this

year (the other was for a different issue), for these problems that I've had for

years 10-20 years, and I wonder if my doctor just doesn't get how serious the

tethered cord can be because it is rare, and he probably thinks my disc

degeneration is more serious. I just think he should have told me, because now

I can try to prevent further damaging/stretching of the cord, and doing certain

yoga moves or forming a rowing team are probably bad ideas I would think

any comments or advice is welcome,

thank you

Margaret

>

> >

> >

> > Welcome and glad you found this site. I am appalled that your MD would do

> > that. I think it is inexcusable. PLEASE do not get any injections into

> > your spine as they wouldn't expect the cord to be as low as it probably is.

> >

> > As others have said, time for a consult with a pediatric NSG who sees

> > Adults..if nothing more than to get an explanation and understanding of

> > TSC. If

> > you say where you live, others may have good suggestions for you close by.

> > Much good luck and keep us posted regarding what you discover. Hugs,

> > Randee

> >

>

>

[Guest guest]

Hi margaret,

I forget if you said where you live? Are you outside of the US?

Certainly, you should be seeing a NSG at this point before doing anything else

at

all IMHO but perhaps you are in a health care system that won't give that

referral until you are having issues? Good luck! You might not want to

mention this group because MD's often write these wonderful groups off as a

bunch of whiners sharing misinformation! If you do go ahead with the

anesthesiologist please be sure to bring the MRI so he/she can see the actual

position of the cord. Much good luck!!

Randee

In a message dated 3/20/2011 9:50:55 P.M. Central Daylight Time,

patientperspective@... writes:

First of all, thank you everyone for your replies.

I haven't seen a NSG but I have had an MRI, my cord ends between L2-L3,

that is where the conus is lying.

I have been very stressed since hearing about others' experiences with the

injections and that the NSG were advising not to get them etc - and also

since I have read on some web sites that abnormalities in your spinal cord

can be considered a contraindication to the injections. And if the

injections tend not to do something or make you worse than what is the point?

So my

strategy is going to be to see what the anesthesiologist says at the

consultation and if he still thinks it is ok to do the injections, I am going

to

ask him why. I am going to ask how many other TCS patients he has given

injections and what were the short term and long term results. I am going to

bring copies of the information I've read here and on other web sites and

explain that I really cannot risk adding more damage/more health problems to

my life and if it means waiting a year to see a neurosurgeon to clear me to

get the injections then that is what I will do.

I said waiting a year because my urologist told me that is how long it

would take, unless I was experiencing bowel incontinence in which case that

would indicate the cord was too strained and it would force them to consider

me an urgent case and operate.

I haven't had urodynamic study, I don't really know that I need one yet, I

am just prescribed medication intended for incontinence to prevent some of

the frequency/urgency. Frequency/urgency is my main issue, my incontinence

has mostly involved two incidents in bed in the a.m. and then a longer 2

week period that occurred a six years ago.

I agree with what and another lady said - I think some doctors,

including my own, just don't know that much about tethered cords. I know

someone said it is inexcusable that my doc didn't tell me but it is a miracle

that I finally got a doctor to take me seriously enough to send me for not

one, but two MRIs this year (the other was for a different issue), for these

problems that I've had for years 10-20 years, and I wonder if my doctor just

doesn't get how serious the tethered cord can be because it is rare, and

he probably thinks my disc degeneration is more serious. I just think he

should have told me, because now I can try to prevent further

damaging/stretching of the cord, and doing certain yoga moves or forming a

rowing team are

probably bad ideas I would think

any comments or advice is welcome,

thank you

Margaret

>

> >

> >

> > Welcome and glad you found this site. I am appalled that your MD would

do

> > that. I think it is inexcusable. PLEASE do not get any injections into

> > your spine as they wouldn't expect the cord to be as low as it

probably is.

> >

> > As others have said, time for a consult with a pediatric NSG who sees

> > Adults..if nothing more than to get an explanation and understanding of

> > TSC. If

> > you say where you live, others may have good suggestions for you close

by.

> > Much good luck and keep us posted regarding what you discover. Hugs,

> > Randee

> >

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

[Guest guest]

I totally agree with Margaret. I have never waited long to see a neurosurgeon,

especially when they learned I have TSC, I also recommend a pediatric neuro as

they have experinence in this area. I am currently tethered at L3 and am having

surgery tomorrow. The best advice I can give is to be persistant and make

doctor's listen to you. You know your body better than anyone else.

To: tetheredspinalcord

From: jlbobin@...

Date: Sun, 20 Mar 2011 23:09:32 -0400

Subject: Re: New here

Margaret,

If you are experiencing urinary urgency & frequency, and you have TC, then

you NEED to have a urodynamic study done. You need to make sure that these

symptoms are not being caused by the TC. You should also have a renal

ultrasound done annually as well. People with NTDs are very susceptible to

bladder and kidney problems. I actually developed hydronephrosis last year

and didn't know. I had a UTI that wouldn't go away all summer and a slight

pain in my right flank (I assumed it was due to the infection moving to my

kidney). But the u/s showed the hydronephrosis (hence the infection that

would never die). But, early kidney problems often have no symptoms. And

that is the best time to catch them. Once your problems get worse (to the

point you may have symptoms), they are harder to treat.

If your urodynamic studies showed neurogenic bladder, then you really need a

consult with a neurosurgeon. Even if you put off surgery, if a urodynamic

study 6 mos-1 year later showed changes, then surgery may not be an " option "

(more of a necessity). The point of surgery is not to regain lost function,

but to prevent further losses. So, if the docs wait until you develop bowel

incontinence, and you do have surgery to untether, then the surgery is to

prevent further loss, not to get back the lost bowel function. And trust me,

no one likes not having a bowel that doesn't function properly. I do my

bowel program, but believe u me, I would rather not and have one that worked

as it should.

Why would it take so long to see a neurosurgeon? I think the longest I ever

waited was about a month and that is because they generally have limited

appointments for new patients. The amount of neuro changes that can happen

over the course of a year is crazy. Heck, I lost my ability to walk over 2

months (granted, from hydrosyringomyelia), but anyone with TC can also

develop that as well.

And it really should be a PEDI neurosurgeon that has experience in treating

TC/NTDs. Most adult neurosurgeons don't see TC that has never been operated

on before, and may never see TC in their careers.

I would definitely get a urodynamic study, if for no other reason than with

TC, you need a baseline to determine if things are getting worse before you

would be able to notice them.

Jenn

[Guest guest]

Many Blessings  

Subject: RE: New here

To: tetheredspinalcord

Date: Monday, March 21, 2011, 5:35 AM

 

I totally agree with Margaret. I have never waited long to see a neurosurgeon,

especially when they learned I have TSC, I also recommend a pediatric neuro as

they have experinence in this area. I am currently tethered at L3 and am having

surgery tomorrow. The best advice I can give is to be persistant and make

doctor's listen to you. You know your body better than anyone else.

To: tetheredspinalcord

From: jlbobin@...

Date: Sun, 20 Mar 2011 23:09:32 -0400

Subject: Re: New here

Margaret,

If you are experiencing urinary urgency & frequency, and you have TC, then

you NEED to have a urodynamic study done. You need to make sure that these

symptoms are not being caused by the TC. You should also have a renal

ultrasound done annually as well. People with NTDs are very susceptible to

bladder and kidney problems. I actually developed hydronephrosis last year

and didn't know. I had a UTI that wouldn't go away all summer and a slight

pain in my right flank (I assumed it was due to the infection moving to my

kidney). But the u/s showed the hydronephrosis (hence the infection that

would never die). But, early kidney problems often have no symptoms. And

that is the best time to catch them. Once your problems get worse (to the

point you may have symptoms), they are harder to treat.

If your urodynamic studies showed neurogenic bladder, then you really need a

consult with a neurosurgeon. Even if you put off surgery, if a urodynamic

study 6 mos-1 year later showed changes, then surgery may not be an " option "

(more of a necessity). The point of surgery is not to regain lost function,

but to prevent further losses. So, if the docs wait until you develop bowel

incontinence, and you do have surgery to untether, then the surgery is to

prevent further loss, not to get back the lost bowel function. And trust me,

no one likes not having a bowel that doesn't function properly. I do my

bowel program, but believe u me, I would rather not and have one that worked

as it should.

Why would it take so long to see a neurosurgeon? I think the longest I ever

waited was about a month and that is because they generally have limited

appointments for new patients. The amount of neuro changes that can happen

over the course of a year is crazy. Heck, I lost my ability to walk over 2

months (granted, from hydrosyringomyelia), but anyone with TC can also

develop that as well.

And it really should be a PEDI neurosurgeon that has experience in treating

TC/NTDs. Most adult neurosurgeons don't see TC that has never been operated

on before, and may never see TC in their careers.

I would definitely get a urodynamic study, if for no other reason than with

TC, you need a baseline to determine if things are getting worse before you

would be able to notice them.

Jenn

[Guest guest]

I am so stressed out I forgot to wish you luck!

best of luck with your surgery

>

>

>

> Subject: RE: New here

> To: tetheredspinalcord

> Date: Monday, March 21, 2011, 5:35 AM

>

>

>  

>

>

>

>

> I totally agree with Margaret. I have never waited long to see a neurosurgeon,

especially when they learned I have TSC, I also recommend a pediatric neuro as

they have experinence in this area. I am currently tethered at L3 and am having

surgery tomorrow. The best advice I can give is to be persistant and make

doctor's listen to you. You know your body better than anyone else.

>

>

>

> To: tetheredspinalcord

> From: jlbobin@...

> Date: Sun, 20 Mar 2011 23:09:32 -0400

> Subject: Re: New here

>

> Margaret,

>

> If you are experiencing urinary urgency & frequency, and you have TC, then

> you NEED to have a urodynamic study done. You need to make sure that these

> symptoms are not being caused by the TC. You should also have a renal

> ultrasound done annually as well. People with NTDs are very susceptible to

> bladder and kidney problems. I actually developed hydronephrosis last year

> and didn't know. I had a UTI that wouldn't go away all summer and a slight

> pain in my right flank (I assumed it was due to the infection moving to my

> kidney). But the u/s showed the hydronephrosis (hence the infection that

> would never die). But, early kidney problems often have no symptoms. And

> that is the best time to catch them. Once your problems get worse (to the

> point you may have symptoms), they are harder to treat.

>

> If your urodynamic studies showed neurogenic bladder, then you really need a

> consult with a neurosurgeon. Even if you put off surgery, if a urodynamic

> study 6 mos-1 year later showed changes, then surgery may not be an " option "

> (more of a necessity). The point of surgery is not to regain lost function,

> but to prevent further losses. So, if the docs wait until you develop bowel

> incontinence, and you do have surgery to untether, then the surgery is to

> prevent further loss, not to get back the lost bowel function. And trust me,

> no one likes not having a bowel that doesn't function properly. I do my

> bowel program, but believe u me, I would rather not and have one that worked

> as it should.

>

> Why would it take so long to see a neurosurgeon? I think the longest I ever

> waited was about a month and that is because they generally have limited

> appointments for new patients. The amount of neuro changes that can happen

> over the course of a year is crazy. Heck, I lost my ability to walk over 2

> months (granted, from hydrosyringomyelia), but anyone with TC can also

> develop that as well.

>

> And it really should be a PEDI neurosurgeon that has experience in treating

> TC/NTDs. Most adult neurosurgeons don't see TC that has never been operated

> on before, and may never see TC in their careers.

>

> I would definitely get a urodynamic study, if for no other reason than with

> TC, you need a baseline to determine if things are getting worse before you

> would be able to notice them.

>

> Jenn

>

>

>

>

[Guest guest]

patricia, good luck with your surgery!

Subject: Re: New here

To: tetheredspinalcord

Date: Monday, March 21, 2011, 4:50 PM

 

I am so stressed out I forgot to wish you luck!

best of luck with your surgery

>

>

>

> Subject: RE: New here

> To: tetheredspinalcord

> Date: Monday, March 21, 2011, 5:35 AM

>

>

>  

>

>

>

>

> I totally agree with Margaret. I have never waited long to see a neurosurgeon,

especially when they learned I have TSC, I also recommend a pediatric neuro as

they have experinence in this area. I am currently tethered at L3 and am having

surgery tomorrow. The best advice I can give is to be persistant and make

doctor's listen to you. You know your body better than anyone else.

>

>

>

> To: tetheredspinalcord

> From: jlbobin@...

> Date: Sun, 20 Mar 2011 23:09:32 -0400

> Subject: Re: New here

>

> Margaret,

>

> If you are experiencing urinary urgency & frequency, and you have TC, then

> you NEED to have a urodynamic study done. You need to make sure that these

> symptoms are not being caused by the TC. You should also have a renal

> ultrasound done annually as well. People with NTDs are very susceptible to

> bladder and kidney problems. I actually developed hydronephrosis last year

> and didn't know. I had a UTI that wouldn't go away all summer and a slight

> pain in my right flank (I assumed it was due to the infection moving to my

> kidney). But the u/s showed the hydronephrosis (hence the infection that

> would never die). But, early kidney problems often have no symptoms. And

> that is the best time to catch them. Once your problems get worse (to the

> point you may have symptoms), they are harder to treat.

>

> If your urodynamic studies showed neurogenic bladder, then you really need a

> consult with a neurosurgeon. Even if you put off surgery, if a urodynamic

> study 6 mos-1 year later showed changes, then surgery may not be an " option "

> (more of a necessity). The point of surgery is not to regain lost function,

> but to prevent further losses. So, if the docs wait until you develop bowel

> incontinence, and you do have surgery to untether, then the surgery is to

> prevent further loss, not to get back the lost bowel function. And trust me,

> no one likes not having a bowel that doesn't function properly. I do my

> bowel program, but believe u me, I would rather not and have one that worked

> as it should.

>

> Why would it take so long to see a neurosurgeon? I think the longest I ever

> waited was about a month and that is because they generally have limited

> appointments for new patients. The amount of neuro changes that can happen

> over the course of a year is crazy. Heck, I lost my ability to walk over 2

> months (granted, from hydrosyringomyelia), but anyone with TC can also

> develop that as well.

>

> And it really should be a PEDI neurosurgeon that has experience in treating

> TC/NTDs. Most adult neurosurgeons don't see TC that has never been operated

> on before, and may never see TC in their careers.

>

> I would definitely get a urodynamic study, if for no other reason than with

> TC, you need a baseline to determine if things are getting worse before you

> would be able to notice them.

>

> Jenn

>

>

>

>

[Guest guest]

hi Katharine,

could you please tell me, when you had the injection did they know where your

spinal cord ends/conus lies? If they know, did they give you the injection

below that area? What reaction did you have to the injection that landed you in

the E.R.?

thank you

Margaret

>

>

>

> Subject: New here

> To: tetheredspinalcord

> Date: Thursday, March 17, 2011, 6:17 PM

>

>

>  

>

>

>

>

> Hi,

> I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

> My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

>

> The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

>

> I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

>

> Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

>

> I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

> Is there anything else you would suggest that I do, or ask for?

>

> Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

>

> thank you

> Margaret

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm one of those who's had numerous injections, but only one epidural. I

happened to have the epidural first and it made everything worse. I then, waited

3 weeks and had facet injections, 6 all together, 3 on either side of L3 going

down. All of these procedures were done under floroscope ex-ray w/contrast and

my current MRI films up on the screen. The facet block injections helped

somewhat and I had them repeated about 8 weeks later. I have to say though, the

only thing that's truly helped quell my neuropathy were sympathetic nerve blocks

- one to either side of my spine -- but each procedure was done separately --

about 8 weeks apart. I started with pain medication treatment first and then

worked up to the injections. I did my research and found a wonderfully

understanding well educated Interventional pain medicine doctor who was willing

to go the extra mile -- in reading up as much as possible on TSC before

proceeding with any injections.

I only considered this after having 2nd de-tethering and subsequently a third.

I'm fortunate though to not have secondary complication of scoliosis. Like

everyone's already said, make sure you research your pain doctor throughly. Get

hold of his/her CV/credentials online. Don't be afraid to ask them how many

neurosurgical patients with TSC and related spinal disorders they've practiced

on. If and when you meet them for initial consult and for ANY REASON, you don't

trust them, don't feel comfortable .. leave, and seek out another opinion.

I know from personal experience, my cord was stretched quite far down after each

surgery. The third time I had surgery it was so taught it caused me horrible

excruciating and un-relenting neck pain, that only was resolved after it was

released. I still get flare ups occasionally but not as much as before. If you

have a lot of scar tissue, make sure your pain doctor knows this prior to any

injections.

Good luck! --

> >

> >

> > From: weathering_the_tethering <patientperspective@>

> > Subject: New here

> > To: tetheredspinalcord

> > Date: Thursday, March 17, 2011, 6:17 PM

> >

> >

> >  

> >

> >

> >

> >

> > Hi,

> > I had an MRI recently, and it might only be because my massage therapist

asked to see a copy of it that I read the MRI and saw the last conclusion said

that the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

> > My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

> >

> > The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

> >

> > I brought up to my doctor that the TC was never mentioned to me and he more

or less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

> >

> > Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

> >

> > I am having a cortisone injection in my lumbar area next week. I guess this

is for the degeneration/inflammation that I have.

> > Is there anything else you would suggest that I do, or ask for?

> >

> > Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

> >

> > thank you

> > Margaret

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

No they had no idea where my cord ended as I hadnt been diagnosed with TC yet.

They evidently injected into the spinal cord as opposed to below it (since it

was lower than " normal " ) and I had severe onset nerve pain along with severe

headache (from spinal fluid leak probably). I was fortunate that it didnt cause

paralysis. 

Subject: Re: New here

To: tetheredspinalcord

Date: Tuesday, March 22, 2011, 9:00 PM

 

hi Katharine,

could you please tell me, when you had the injection did they know where your

spinal cord ends/conus lies? If they know, did they give you the injection below

that area? What reaction did you have to the injection that landed you in the

E.R.?

thank you

Margaret

>

>

>

> Subject: New here

> To: tetheredspinalcord

> Date: Thursday, March 17, 2011, 6:17 PM

>

>

>  

>

>

>

>

> Hi,

> I had an MRI recently, and it might only be because my massage therapist asked

to see a copy of it that I read the MRI and saw the last conclusion said that

the findings were of a tethered cord (lower lying conus and fatty filum

terminale).

> My doctor and his nurse never specifically mentioned it to me. I also have

degeneration in my spine (in my neck which showed up in xray) and changes in

L3-L5.

>

> The TC really explains my urinary frequency/urgency and some problems with

incontinence that I've experienced, as well as the random pain and weakness in

my legs that I experience.

>

> I brought up to my doctor that the TC was never mentioned to me and he more or

less interrupted me and said that when he looks at an MRI, it's his job to

determine if I am a surgical candidate or not. I do recall him saying that

people in my situation can often end up worse after surgery, and I suppose from

what I've read in some places online that that can be the case with TC release,

if that is what he meant.

>

> Why would he not feel the need to tell me about the TC? did he think I was

better off not knowing if there was nothing he could do?

>

> I am having a cortisone injection in my lumbar area next week. I guess this is

for the degeneration/inflammation that I have.

> Is there anything else you would suggest that I do, or ask for?

>

> Is it true that bending at the waist and flexing and extending my neck are

pulling on my cord each time and damaging it? Are there certain movements you

try to avoid? What about sleeping, is there a way you position yourself to limit

stretching the cord? any more suggestions?

>

> thank you

> Margaret

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Carly! I'm Darrell! Welcome....Are you looking for help with ACT, or something different? For my part, rather than clog up your vision with a bunch of typing, I would recommend opening that excellent book and then telling us what you think of whatever you first read....

I imagine you are in the right place no matter what...D

 

Hello,  I am brand new to this list and just wondering and hoping if I am in the right " place " .

 

I am 48 years old, female, married and a stay at  home mom to two teenagers.  I have suffered from panic/anxiety/fears for most of my life.  I was told about ACT therapy from  my medical provider and bought the book, " Get of your Mind and into your Life " , but have not had a chance to read it yet.

 

I have specific fears and generalized anxiety.  My fears are mainly of large dogs and I have seperation anxiety with my teenagers.  (I fear something very bad will happen to one of them if I am not there to control it),  I also have horrible, strange/scary thoughts on a daily basis.

 

I have not taken any meds but thinking of starting.

 

So....Am I in the right place for support here?

 

Carly

-- Darrell G King, RN, CASAC-TRochester, NY, UShttp://darrellking.comDarrellGKing@...

[Guest guest]

Thanks Darrell,

Well not sure if I need help with ACT "yet", but just wanted a place where other people understand what I am going thru and just some understanding of my "condition" I guess you'd call it. I'll start reading it, and just keep reading the threads and hopefully it will all start clicking for me. Just need to know there are other people out there who experience some of the same things I do

Carly

Hi Carly! I'm Darrell! Welcome....

Are you looking for help with ACT, or something different? For my part, rather than clog up your vision with a bunch of typing, I would recommend opening that excellent book and then telling us what you think of whatever you first read....

I imagine you are in the right place no matter what...

D

Hello, I am brand new to this list and just wondering and hoping if I am in the right "place".

I am 48 years old, female, married and a stay at home mom to two teenagers. I have suffered from panic/anxiety/fears for most of my life. I was told about ACT therapy from my medical provider and bought the book, "Get of your Mind and into your Life", but have not had a chance to read it yet.

I have specific fears and generalized anxiety. My fears are mainly of large dogs and I have seperation anxiety with my teenagers. (I fear something very bad will happen to one of them if I am not there to control it), I also have horrible, strange/scary thoughts on a daily basis.

I have not taken any meds but thinking of starting.

So....Am I in the right place for support here?

Carly

-- Darrell G King, RN, CASAC-TRochester, NY, UShttp://darrellking.comDarrellGKing@...

[Guest guest]

Thanks Darrell,

Well not sure if I need help with ACT "yet", but just wanted a place where other people understand what I am going thru and just some understanding of my "condition" I guess you'd call it. I'll start reading it, and just keep reading the threads and hopefully it will all start clicking for me. Just need to know there are other people out there who experience some of the same things I do

Carly

Hi Carly! I'm Darrell! Welcome....

Are you looking for help with ACT, or something different? For my part, rather than clog up your vision with a bunch of typing, I would recommend opening that excellent book and then telling us what you think of whatever you first read....

I imagine you are in the right place no matter what...

D

Hello, I am brand new to this list and just wondering and hoping if I am in the right "place".

I am 48 years old, female, married and a stay at home mom to two teenagers. I have suffered from panic/anxiety/fears for most of my life. I was told about ACT therapy from my medical provider and bought the book, "Get of your Mind and into your Life", but have not had a chance to read it yet.

I have specific fears and generalized anxiety. My fears are mainly of large dogs and I have seperation anxiety with my teenagers. (I fear something very bad will happen to one of them if I am not there to control it), I also have horrible, strange/scary thoughts on a daily basis.

I have not taken any meds but thinking of starting.

So....Am I in the right place for support here?

Carly

-- Darrell G King, RN, CASAC-TRochester, NY, UShttp://darrellking.comDarrellGKing@...