Re: New to the group and would like to hear stories about others with tethered cord.

[Guest guest]

Hi Terry -- what type of tethered cord do you have? I had surgery for a

tight/thickend filum about 4 years ago. I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

Hi my name is Terry and this is my first post to the group. I've been

told I have tethered cord and will definetly be operated on soon. I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation. I would love to hear stories from other people with the same thing.

[Guest guest]

I don't know all the lingo to say so I will read from my MRI of the L-spine.  It

says there is a large lipoma of the filum terminale reaching it's maximal cross

sectional callber at the level of L3where it measures 10x8mm & extending

approximately 13cm craniocaudally from the conus, which terminates in a low

position at the mid L2 vertebral body level, caudally into the sacrum where it

appears to terminate at the S2 level.  The conus demonstrates normal signal.

So that's what it says so I hope that answered your question.  I don't yet

understand alot yet I am just learning about this stuff.  I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have? 

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Hi Terry -- what type of tethered cord do you have?  I had surgery for a

tight/thickend filum about 4 years ago.  I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

 

   

     

     

      Hi my name is Terry and this is my first post to the group.  I've been

told I have tethered cord and will definetly be operated on soon.  I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation.  I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation.  I would love to hear stories from other people with the same thing.

   

   

   

   

                         

[Guest guest]

From what I understand, a lipoma is a more difficult surgery than simply cutting

the filum, which is what was done for me. There are people in this group who

have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's

and had surgery at age 42. I have had chronic back pain since I was 18, left

leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs. I

also had spondylolisthesis to complicate things even further. I had a spinal

fusion 2 years ago for that. I was able to maintain a very active lifestyle til

my early 30's. For me, I had a long recovery from surgery before I could say it

helped. I do have a lot less aching in my legs and can walk further than before

my surgeries. I can stand longer as well. But, still, activity increases my

pain, rest relieves it and I do get flare-ups (sadly, am in one right now).

There is no change in my nerve damage (I guess that's good as the goal of

surgery is to halt progression of symptoms -- does not always relieve pain). I'd

say I'm one of the luckier ones in this group that manages most of the time with

little in the way of pain meds, but am not working -- if I try to do too much I

get worse right away, so have to really pace myself and avoid a lot of

activities. I also suffer from chronic headaches and other pain issues but I'm

not convinced that's related to my TC. Some people have great success from

surgery, others are worse off. I think everyone in the group would tell you to

make sure you have a neurosurgeon EXPERIENCED in this type of surgery, and would

also recommend getting a 2nd opinion. If you tell us where you are living

someone may be able to recommend someone in your area for you to get another

opinion from. You really need to way the risks of surgery vs the risks of not

doing the surgery. For me, I wish I'd done it sooner to possibly have avoided

the nerve damage in my left leg -- others will tell you they wish they never had

the surgery. But, the biggest frustration with this syndrome is everyone's

experience/symptoms are different -- there is no crystal ball that will predict

the outcome of either choice. That is why you really need to discuss your

particular situation with your neurosurgeon -- and preferably get a second

opinion. If you are suffering from any bladder/bowel issues then there is not

much choice but to go ahead with surgery -- as this can be irreversable due to

nerve damage if left to long. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 15:49:38 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

I don't know all the lingo to say so I will read from my MRI of the

L-spine. It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level. The conus demonstrates normal

signal.

So that's what it says so I hope that answered your question. I don't yet

understand alot yet I am just learning about this stuff. I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have?

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Hi Terry -- what type of tethered cord do you have? I had surgery for a

tight/thickend filum about 4 years ago. I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

Hi my name is Terry and this is my first post to the group. I've been

told I have tethered cord and will definetly be operated on soon. I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation. I would love to hear stories from other people with the same thing.

[Guest guest]

Dee it sounds like you have more pain than I do.  I had alot of pain about 2

months ago but it is mostly weakness in the legs right now.  I live in RI and

was diagnosted by 1neurosurgeon and she sent me to another one and while with

him he sent for another one and she is the one who will do the surgery.  She is

a pediactric neurosurgeon.  I'll find out about my MRI and the date for the

operation on Friday. 

I am still working and some days it's really hard!!  I do have better days and

today wasn't too bad:)  I'm sorry to hear your not having a good day.  The

surgeon did tell me my symptoms now might not go away it depends how much nerve

damage was done.  It's really to prevent any more nerve damage.

I've had back pain off and on for years.  I've also had years of headaches,

dizziness and light-headedness so I guess that's what they are looking for in

the MRI.  By the way I am 55 years old and I work part time in a very busy

doctor's office.   Thanks for sharing your story I appreciate it.  If I didn't

answer all you asked just ask again.

Terry

 

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 7:06 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

From what I understand, a lipoma is a more difficult surgery than simply cutting

the filum, which is what was done for me.  There are people in this group who

have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's

and had surgery at age 42.  I have had chronic back pain since I was 18, left

leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs.  I

also had spondylolisthesis to complicate things even further.  I had a spinal

fusion 2 years ago for that.  I was able to maintain a very active lifestyle til

my early 30's. For me, I had a long recovery from surgery before I could say it

helped.  I do have a lot less aching in my legs and can walk further than before

my surgeries.  I can stand longer as well.  But, still, activity increases my

pain, rest relieves it and I do get flare-ups (sadly, am in one right now). 

There is no change in my nerve damage (I guess that's good as the goal of

surgery is to

halt progression of symptoms -- does not always relieve pain). I'd say I'm one

of the luckier ones in this group that manages most of the time with little in

the way of pain meds, but am not working -- if I try to do too much I get worse

right away, so have to really pace myself and avoid a lot of activities.  I also

suffer from chronic headaches and other pain issues but I'm not convinced that's

related to my TC. Some people have great success from surgery, others are worse

off.  I think everyone in the group would tell you to make sure you have a

neurosurgeon EXPERIENCED in this type of surgery, and would also recommend

getting a 2nd opinion.  If you tell us where you are living someone may be able

to recommend someone in your area for you to get another opinion from.  You

really need to way the risks of surgery vs the risks of not doing the surgery. 

For me, I wish I'd done it sooner to possibly have avoided the nerve damage in

my left leg --

others will tell you they wish they never had the surgery.  But, the biggest

frustration with this syndrome is everyone's experience/symptoms are different

-- there is no crystal ball that will predict the outcome of either choice. 

That is why you really need to discuss your particular situation with your

neurosurgeon -- and preferably get a second opinion. If you are suffering from

any bladder/bowel issues then there is not much choice but to go ahead with

surgery -- as this can be irreversable due to nerve damage if left to long. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 15:49:38 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

   

     

     

      I don't know all the lingo to say so I will read from my MRI of the

L-spine.  It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level.  The conus demonstrates normal

signal.

So that's what it says so I hope that answered your question.  I don't yet

understand alot yet I am just learning about this stuff.  I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have? 

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

 

Hi Terry -- what type of tethered cord do you have?  I had surgery for a

tight/thickend filum about 4 years ago.  I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

 

   

     

     

      Hi my name is Terry and this is my first post to the group.  I've been

told I have tethered cord and will definetly be operated on soon.  I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation.  I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation.  I would love to hear stories from other people with the same thing.

   

   

   

   

                           

[Guest guest]

Terry -- usually pediatric surgeons are more experienced with TC than other

neurosurgeons but often won't take on adults -- so that is likely a good thing

that you have a pediactric neurosurgeon. That is because now a days people are

diagnosed with TC more often as a child (as compared to when we were younger and

MRIs didn't exist). But it is also common for people to experience problems for

the first time as adults. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 16:24:10 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

Dee it sounds like you have more pain than I do. I had alot of pain about

2 months ago but it is mostly weakness in the legs right now. I live in RI and

was diagnosted by 1neurosurgeon and she sent me to another one and while with

him he sent for another one and she is the one who will do the surgery. She is

a pediactric neurosurgeon. I'll find out about my MRI and the date for the

operation on Friday.

I am still working and some days it's really hard!! I do have better days and

today wasn't too bad:) I'm sorry to hear your not having a good day. The

surgeon did tell me my symptoms now might not go away it depends how much nerve

damage was done. It's really to prevent any more nerve damage.

I've had back pain off and on for years. I've also had years of headaches,

dizziness and light-headedness so I guess that's what they are looking for in

the MRI. By the way I am 55 years old and I work part time in a very busy

doctor's office. Thanks for sharing your story I appreciate it. If I didn't

answer all you asked just ask again.

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 7:06 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

From what I understand, a lipoma is a more difficult surgery than simply cutting

the filum, which is what was done for me. There are people in this group who

have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's

and had surgery at age 42. I have had chronic back pain since I was 18, left

leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs. I

also had spondylolisthesis to complicate things even further. I had a spinal

fusion 2 years ago for that. I was able to maintain a very active lifestyle til

my early 30's. For me, I had a long recovery from surgery before I could say it

helped. I do have a lot less aching in my legs and can walk further than before

my surgeries. I can stand longer as well. But, still, activity increases my

pain, rest relieves it and I do get flare-ups (sadly, am in one right now).

There is no change in my nerve damage (I guess that's good as the goal of

surgery is to

halt progression of symptoms -- does not always relieve pain). I'd say I'm one

of the luckier ones in this group that manages most of the time with little in

the way of pain meds, but am not working -- if I try to do too much I get worse

right away, so have to really pace myself and avoid a lot of activities. I also

suffer from chronic headaches and other pain issues but I'm not convinced that's

related to my TC. Some people have great success from surgery, others are worse

off. I think everyone in the group would tell you to make sure you have a

neurosurgeon EXPERIENCED in this type of surgery, and would also recommend

getting a 2nd opinion. If you tell us where you are living someone may be able

to recommend someone in your area for you to get another opinion from. You

really need to way the risks of surgery vs the risks of not doing the surgery.

For me, I wish I'd done it sooner to possibly have avoided the nerve damage in

my left leg --

others will tell you they wish they never had the surgery. But, the biggest

frustration with this syndrome is everyone's experience/symptoms are different

-- there is no crystal ball that will predict the outcome of either choice.

That is why you really need to discuss your particular situation with your

neurosurgeon -- and preferably get a second opinion. If you are suffering from

any bladder/bowel issues then there is not much choice but to go ahead with

surgery -- as this can be irreversable due to nerve damage if left to long. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 15:49:38 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

I don't know all the lingo to say so I will read from my MRI of the

L-spine. It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level. The conus demonstrates normal

signal.

So that's what it says so I hope that answered your question. I don't yet

understand alot yet I am just learning about this stuff. I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have?

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Hi Terry -- what type of tethered cord do you have? I had surgery for a

tight/thickend filum about 4 years ago. I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

Hi my name is Terry and this is my first post to the group. I've been

told I have tethered cord and will definetly be operated on soon. I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation. I would love to hear stories from other people with the same thing.

[Guest guest]

I have heard that the pediactic neurosurgeon is better to have so it is a good

thing.  I was having bad back muscle spasm in my mid back and my doctor sent me

for an MRI and that is how it was found.  The pain didn't have anything to do

with the tethered cord so it was by accident and they say that's how alot of

them are found.  It does explain maybe some of the pain I have had in the past

and nobody could tell me why.   Thanks for sharing your story and I hope you

feel better:)

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 7:29 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Terry -- usually pediatric surgeons are more experienced with TC than other

neurosurgeons but often won't take on adults -- so that is likely a good thing

that you have a pediactric neurosurgeon.  That is because now a days people are

diagnosed with TC more often as a child (as compared to when we were younger and

MRIs didn't exist).  But it is also common for people to experience problems for

the first time as adults. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 16:24:10 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

   

     

     

      Dee it sounds like you have more pain than I do.  I had alot of pain about

2 months ago but it is mostly weakness in the legs right now.  I live in RI and

was diagnosted by 1neurosurgeon and she sent me to another one and while with

him he sent for another one and she is the one who will do the surgery.  She is

a pediactric neurosurgeon.  I'll find out about my MRI and the date for the

operation on Friday. 

I am still working and some days it's really hard!!  I do have better days and

today wasn't too bad:)  I'm sorry to hear your not having a good day.  The

surgeon did tell me my symptoms now might not go away it depends how much nerve

damage was done.  It's really to prevent any more nerve damage.

I've had back pain off and on for years.  I've also had years of headaches,

dizziness and light-headedness so I guess that's what they are looking for in

the MRI.  By the way I am 55 years old and I work part time in a very busy

doctor's office.  Thanks for sharing your story I appreciate it.  If I didn't

answer all you asked just ask again.

Terry

 

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 7:06 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

 

From what I understand, a lipoma is a more difficult surgery than simply cutting

the filum, which is what was done for me.  There are people in this group who

have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's

and had surgery at age 42.  I have had chronic back pain since I was 18, left

leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs.  I

also had spondylolisthesis to complicate things even further.  I had a spinal

fusion 2 years ago for that.  I was able to maintain a very active lifestyle til

my early 30's. For me, I had a long recovery from surgery before I could say it

helped.  I do have a lot less aching in my legs and can walk further than before

my surgeries.  I can stand longer as well.  But, still, activity increases my

pain, rest relieves it and I do get flare-ups (sadly, am in one right now). 

There is no change in my nerve damage (I guess that's good as the goal of

surgery is to

halt progression of symptoms -- does not always relieve pain). I'd say I'm one

of the luckier ones in this group that manages most of the time with little in

the way of pain meds, but am not working -- if I try to do too much I get worse

right away, so have to really pace myself and avoid a lot of activities.  I also

suffer from chronic headaches and other pain issues but I'm not convinced that's

related to my TC. Some people have great success from surgery, others are worse

off.  I think everyone in the group would tell you to make sure you have a

neurosurgeon EXPERIENCED in this type of surgery, and would also recommend

getting a 2nd opinion.  If you tell us where you are living someone may be able

to recommend someone in your area for you to get another opinion from.  You

really need to way the risks of surgery vs the risks of not doing the surgery. 

For me, I wish I'd done it sooner to possibly have avoided the nerve damage in

my left leg --

others will tell you they wish they never had the surgery.  But, the biggest

frustration with this syndrome is everyone's experience/symptoms are different

-- there is no crystal ball that will predict the outcome of either choice. 

That is why you really need to discuss your particular situation with your

neurosurgeon -- and preferably get a second opinion. If you are suffering from

any bladder/bowel issues then there is not much choice but to go ahead with

surgery -- as this can be irreversable due to nerve damage if left to long. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 15:49:38 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

   

     

     

      I don't know all the lingo to say so I will read from my MRI of the

L-spine.  It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level.  The conus demonstrates normal

signal.

So that's what it says so I hope that answered your question.  I don't yet

understand alot yet I am just learning about this stuff.  I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have? 

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

 

Hi Terry -- what type of tethered cord do you have?  I had surgery for a

tight/thickend filum about 4 years ago.  I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

 

   

     

     

      Hi my name is Terry and this is my first post to the group.  I've been

told I have tethered cord and will definetly be operated on soon.  I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation.  I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation.  I would love to hear stories from other people with the same thing.

   

   

   

   

                           

[Guest guest]

Dee, do you know of a good written description and symptoms of TSC? I haven't

worked since my surgery. The state has denied me disability for the second time

stating that my symptoms are not permanent. I have a lawyer and expecting a

court date in the near future. I'm so tired defending myself.

Sorry for going on about this. :-)

Kellie

Dee Allaert wrote:

>

>Terry -- usually pediatric surgeons are more experienced with TC than other

neurosurgeons but often won't take on adults -- so that is likely a good thing

that you have a pediactric neurosurgeon. That is because now a days people are

diagnosed with TC more often as a child (as compared to when we were younger and

MRIs didn't exist). But it is also common for people to experience problems for

the first time as adults. Dee

> To: tetheredspinalcord

>From: thowes1956@...

>Date: Wed, 8 Aug 2012 16:24:10 -0700

>Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Dee it sounds like you have more pain than I do. I had alot of pain

about 2 months ago but it is mostly weakness in the legs right now. I live in

RI and was diagnosted by 1neurosurgeon and she sent me to another one and while

with him he sent for another one and she is the one who will do the surgery.

She is a pediactric neurosurgeon. I'll find out about my MRI and the date for

the operation on Friday.

>

>I am still working and some days it's really hard!! I do have better days and

today wasn't too bad:) I'm sorry to hear your not having a good day. The

surgeon did tell me my symptoms now might not go away it depends how much nerve

damage was done. It's really to prevent any more nerve damage.

>

>I've had back pain off and on for years. I've also had years of headaches,

dizziness and light-headedness so I guess that's what they are looking for in

the MRI. By the way I am 55 years old and I work part time in a very busy

doctor's office. Thanks for sharing your story I appreciate it. If I didn't

answer all you asked just ask again.

>

>Terry

>

>

>

>

>

>

>

>________________________________

>

>

>

>To: " tetheredspinalcord " <tetheredspinalcord >

>

>Sent: Wednesday, August 8, 2012 7:06 PM

>

>Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

>

>

>

>

>

>From what I understand, a lipoma is a more difficult surgery than simply

cutting the filum, which is what was done for me. There are people in this

group who have had surgery for a lipoma. I wasn't diagnosed until I was in my

late 30's and had surgery at age 42. I have had chronic back pain since I was

18, left leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching

legs. I also had spondylolisthesis to complicate things even further. I had a

spinal fusion 2 years ago for that. I was able to maintain a very active

lifestyle til my early 30's. For me, I had a long recovery from surgery before I

could say it helped. I do have a lot less aching in my legs and can walk

further than before my surgeries. I can stand longer as well. But, still,

activity increases my pain, rest relieves it and I do get flare-ups (sadly, am

in one right now). There is no change in my nerve damage (I guess that's good

as the goal of surgery is to

>

> halt progression of symptoms -- does not always relieve pain). I'd say I'm one

of the luckier ones in this group that manages most of the time with little in

the way of pain meds, but am not working -- if I try to do too much I get worse

right away, so have to really pace myself and avoid a lot of activities. I also

suffer from chronic headaches and other pain issues but I'm not convinced that's

related to my TC. Some people have great success from surgery, others are worse

off. I think everyone in the group would tell you to make sure you have a

neurosurgeon EXPERIENCED in this type of surgery, and would also recommend

getting a 2nd opinion. If you tell us where you are living someone may be able

to recommend someone in your area for you to get another opinion from. You

really need to way the risks of surgery vs the risks of not doing the surgery.

For me, I wish I'd done it sooner to possibly have avoided the nerve damage in

my left leg --

>

> others will tell you they wish they never had the surgery. But, the biggest

frustration with this syndrome is everyone's experience/symptoms are different

-- there is no crystal ball that will predict the outcome of either choice.

That is why you really need to discuss your particular situation with your

neurosurgeon -- and preferably get a second opinion. If you are suffering from

any bladder/bowel issues then there is not much choice but to go ahead with

surgery -- as this can be irreversable due to nerve damage if left to long. Dee

>

>To: tetheredspinalcord

>

>From: thowes1956@...

>

>Date: Wed, 8 Aug 2012 15:49:38 -0700

>

>Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

>

>

>

>

>

>

>

>

>

>

>

>

>

> I don't know all the lingo to say so I will read from my MRI of the

L-spine. It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level. The conus demonstrates normal

signal.

>

>

>

>So that's what it says so I hope that answered your question. I don't yet

understand alot yet I am just learning about this stuff. I am scared to have

the surgery but feel I really don't have too much choice but to have it.

>

>

>

>I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

>

>

>

>What symptoms did you have?

>

>

>

>Terry

>

>

>

>________________________________

>

>

>

>

>

>

>

>To: " tetheredspinalcord " <tetheredspinalcord >

>

>

>

>Sent: Wednesday, August 8, 2012 6:35 PM

>

>

>

>Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

>

>

>

>

>

>

>

>Hi Terry -- what type of tethered cord do you have? I had surgery for a

tight/thickend filum about 4 years ago. I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

>

>

>

>To: tetheredspinalcord

>

>

>

>From: thowes1956@...

>

>

>

>Date: Wed, 8 Aug 2012 22:07:40 +0000

>

>

>

>Subject: New to the group and would like to hear stories about others

with tethered cord.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi my name is Terry and this is my first post to the group. I've been

told I have tethered cord and will definetly be operated on soon. I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation. I would love to hear stories from other people with the same thing.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I have had 4 surgeries to untether due to lipoma of the cauda equina.

Definitely 2nd what Dee said... Very few neurosurgeons are experienced enough to

handle this surgery. My 1st surgeon wasn't, and I've been paying the price ever

since.

Sent from my iPad

>

> From what I understand, a lipoma is a more difficult surgery than simply

cutting the filum, which is what was done for me. There are people in this

group who have had surgery for a lipoma. I wasn't diagnosed until I was in my

late 30's and had surgery at age 42. I have had chronic back pain since I was

18, left leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching

legs. I also had spondylolisthesis to complicate things even further. I had a

spinal fusion 2 years ago for that. I was able to maintain a very active

lifestyle til my early 30's. For me, I had a long recovery from surgery before I

could say it helped. I do have a lot less aching in my legs and can walk

further than before my surgeries. I can stand longer as well. But, still,

activity increases my pain, rest relieves it and I do get flare-ups (sadly, am

in one right now). There is no change in my nerve damage (I guess that's good

as the goal of surgery is to halt progression of symptoms -- does not always

relieve pain). I'd say I'm one of the luckier ones in this group that manages

most of the time with little in the way of pain meds, but am not working -- if I

try to do too much I get worse right away, so have to really pace myself and

avoid a lot of activities. I also suffer from chronic headaches and other pain

issues but I'm not convinced that's related to my TC. Some people have great

success from surgery, others are worse off. I think everyone in the group would

tell you to make sure you have a neurosurgeon EXPERIENCED in this type of

surgery, and would also recommend getting a 2nd opinion. If you tell us where

you are living someone may be able to recommend someone in your area for you to

get another opinion from. You really need to way the risks of surgery vs the

risks of not doing the surgery. For me, I wish I'd done it sooner to possibly

have avoided the nerve damage in my left leg -- others will tell you they wish

they never had the surgery. But, the biggest frustration with this syndrome is

everyone's experience/symptoms are different -- there is no crystal ball that

will predict the outcome of either choice. That is why you really need to

discuss your particular situation with your neurosurgeon -- and preferably get a

second opinion. If you are suffering from any bladder/bowel issues then there is

not much choice but to go ahead with surgery -- as this can be irreversable due

to nerve damage if left to long. Dee

> To: tetheredspinalcord

> From: thowes1956@...

> Date: Wed, 8 Aug 2012 15:49:38 -0700

> Subject: Re: New to the group and would like to hear stories about

others with tethered cord.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I don't know all the lingo to say so I will read from my MRI of the

L-spine. It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level. The conus demonstrates normal

signal.

>

> So that's what it says so I hope that answered your question. I don't yet

understand alot yet I am just learning about this stuff. I am scared to have

the surgery but feel I really don't have too much choice but to have it.

>

> I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

>

> What symptoms did you have?

>

[Guest guest]

Terry,

I am also new to the group. I am to understand we all have similar but slightly

different symptoms, and resolution from surgery.

I was diagnosed with TSC in 2008 after years of back pain. I was originally told

I was faking it and then Fibromyalgia. I didn't believe I had Fm because I don't

have upper body pain.

 I went to the only neurosurgeon who I thought would untether my chord.My

tethering was due to a lipoma at l4-5. My symptoms were frequent uti's, pain in

legs and back. I even felt one day that I couldn't walk. Not sure what that was

about. I had it untethered two months after It was diagnosed. The pain went away

immediately. Two years later the pain started getting worse and my utis came

back. I was diagnosed with neurogenic bladder and my urologist told me it was

due to nerve damage. I knew nothing about this condition until I got in this

group. My Doc didn't educate me on anything. I thought I was cured.

Through this group I found a Dr. who specializes in TSC. I am waiting to see

him. I am hopeful.I work full time as a Respiratory Therapist. I am on my feet

12 hours a day walking and standing. I am on neurontin, zanaflex. lexapro. and

Vicodin 10mg 3 a day. I cant work without being on pain meds. Activity makes it

worse. I love my job and my financial status will not allow me to go on

disability yet. I have one child in High school. Hopefully when he graduates I

can go part time.

This group has been amazing in the short time I have been on here.

Welcome to the group. Smile everyday and think about the good things you are

blessed with..

Pepper

[Guest guest]

Terry-

Check out Dr. Jallo at s Hopkins...He was my surgeon for the last 3

surgeries and he is wonderful.

New to the group and would like to hear stories about others

with tethered cord.

Hi my name is Terry and this is my first post to the group. I've been

told I have tethered cord and will definetly be operated on soon. I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation. I would love to hear stories from other people with the same thing.

[Guest guest]

I have had a lipoma removed to untether my cord twice, first when I was 20

because my legs would just go numb and I'd fall over, then again when I was 30

because of weakness and a lot of pain.  Oh, and I lost bladder function before

my second surgery. The surgery is scary, but if you get a great doctor, it's a

lot less so. It is never a matter of not having a choice, though.

You will hear horror stories and you will get many opinions about what you

should/could do. In the end, it's a very individual thing and we all have to

make up our minds.  If you are losing function, most people believe it's best

to get it taken care of quickly. Personally, the first surgery I had within

weeks of my symptoms starting, and all of the symptoms went away. The second

surgery, I put that off for more than a year and it took a good six years to get

the pain (from the cord, not the surgery) to go away and I still don't have

bladder function or feeling in a lot of places. That said, they aren't getting a

third shot at me. I'll deal with whatever comes my way from now on because it

seems the more surgeries you have, the less likely you are to have a really good

outcome. Those are my impressions from being on this list since its inception,

and all the people we've seen come and go. Again, they aren't really decision

points, just information.

Good luck with your journey and know that this list is a great resource. There

are many good people here who are more than happy to give you answers and just

listen to you if you need to vent.

 

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:49 PM

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

I don't know all the lingo to say so I will read from my MRI of the L-spine. 

It says there is a large lipoma of the filum terminale reaching it's maximal

cross sectional callber at the level of L3where it measures 10x8mm & extending

approximately 13cm craniocaudally from the conus, which terminates in a low

position at the mid L2 vertebral body level, caudally into the sacrum where it

appears to terminate at the S2 level.  The conus demonstrates normal signal.

So that's what it says so I hope that answered your question.  I don't yet

understand alot yet I am just learning about this stuff.  I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have? 

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Hi Terry -- what type of tethered cord do you have?  I had surgery for a

tight/thickend filum about 4 years ago.  I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

 

   

     

     

      Hi my name is Terry and this is my first post to the group.  I've been

told I have tethered cord and will definetly be operated on soon.  I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation.  I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation.  I would love to hear stories from other people with the same thing.

   

   

   

   

                         

[Guest guest]

, this is such great advice. I was diagnosed with TCS at 50,

have had two surgeries on my back and one on my foot and my achilles

tendon. Like you I have lost function of my bladder. Your symptom sound

so familiar to me, I have numbness, tingling in foot, and lot of pain. I

am not sure if I would have another surgery if my cord retethers. It is

a very personal decision as this disease affects everyone differently. I

also have Spina Bifida which has to be considered when I make any

decision about my back. A great doctor is very important, mine is a

pediatric neurosurgeon. Not only do they deal with this more than an

adult doctor but they have more compassion for what their patients are

experiencing.

Also, consider the hospital and their reputation also. With my second surgery I

was in a different hospital and that made a world of difference with my

recovery. There is so much to consider when having this surgery. My advice:

research, ask questions, and have a good neurosurgeon.

Fischer

To: tetheredspinalcord

From: mzw4@...

Date: Thu, 9 Aug 2012 05:13:39 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

I have had a lipoma removed to untether my cord twice, first when I was 20

because my legs would just go numb and I'd fall over, then again when I was 30

because of weakness and a lot of pain. Oh, and I lost bladder function before

my second surgery. The surgery is scary, but if you get a great doctor, it's a

lot less so. It is never a matter of not having a choice, though.

You will hear horror stories and you will get many opinions about what you

should/could do. In the end, it's a very individual thing and we all have to

make up our minds. If you are losing function, most people believe it's best to

get it taken care of quickly. Personally, the first surgery I had within weeks

of my symptoms starting, and all of the symptoms went away. The second surgery,

I put that off for more than a year and it took a good six years to get the pain

(from the cord, not the surgery) to go away and I still don't have bladder

function or feeling in a lot of places. That said, they aren't getting a third

shot at me. I'll deal with whatever comes my way from now on because it seems

the more surgeries you have, the less likely you are to have a really good

outcome. Those are my impressions from being on this list since its inception,

and all the people we've seen come and go. Again, they aren't really decision

points, just information.

Good luck with your journey and know that this list is a great resource. There

are many good people here who are more than happy to give you answers and just

listen to you if you need to vent.

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:49 PM

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

I don't know all the lingo to say so I will read from my MRI of the L-spine. It

says there is a large lipoma of the filum terminale reaching it's maximal cross

sectional callber at the level of L3where it measures 10x8mm & extending

approximately 13cm craniocaudally from the conus, which terminates in a low

position at the mid L2 vertebral body level, caudally into the sacrum where it

appears to terminate at the S2 level. The conus demonstrates normal signal.

So that's what it says so I hope that answered your question. I don't yet

understand alot yet I am just learning about this stuff. I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have?

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Hi Terry -- what type of tethered cord do you have? I had surgery for a

tight/thickend filum about 4 years ago. I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

Hi my name is Terry and this is my first post to the group. I've been

told I have tethered cord and will definetly be operated on soon. I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation. I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation. I would love to hear stories from other people with the same thing.

[Guest guest]

I have spina bifida too.  I've been fortunate in my ability to deal with the

pain. I started mindful meditation (mindfulness meditation?? something like

that) about four years after my last surgery and by the time my son was born in

2003, I was off pain meds altogether. I started gaining weight because of

marital issues a couple of years ago, and in May I decided to start running.

Never ran before in my life, but I find it to be very enjoyable and it doesn't

bother my legs or back at all. I think never having run, my knees are in much

better shape now so I don't even get any knee pain!

But it is definitely a good thing to research any doctor and hospital you

choose. But I do suggest if there is any other way to deal with symptoms than

surgery to look into it. Might turn out to be surgery is the only good choice,

but I can't imagine the scar tissue gets any less problematic the more of it

that gathers back there, so I absolutely decided that there is nothing that will

make me go through another. My bladder is gone, forever. A wheelchair doesn't

scare me, and since surgery doesn't necessarily mean an end to pain, I can't see

putting myself through it again. I know people who have had many more than two

surgeries and they still don't rule out more, but for me, I told the last

surgeon (in the recovery room) that they had used up their last chance already.

I am done!

________________________________

To: tetheredspinalcord

Sent: Thursday, August 9, 2012 2:08 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

, this is such great advice. I was diagnosed with TCS at 50,

have had two surgeries on my back and one on my foot and my achilles

tendon. Like you I have lost function of my bladder. Your symptom sound

so familiar to me, I have numbness, tingling in foot, and lot of pain. I

am not sure if I would have another surgery if my cord retethers. It is

a very personal decision as this disease affects everyone differently. I

also have Spina Bifida which has to be considered when I make any

decision about my back. A great doctor is very important, mine is a

pediatric neurosurgeon. Not only do they deal with this more than an

adult doctor but they have more compassion for what their patients are

experiencing.

Also, consider the hospital and their reputation also. With my second surgery I

was in a different hospital and that made a world of difference with my

recovery. There is so much to consider when having this surgery. My advice:

research, ask questions, and have a good neurosurgeon.

Fischer

To: tetheredspinalcord

From: mzw4@...

Date: Thu, 9 Aug 2012 05:13:39 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

   

     

     

      I have had a lipoma removed to untether my cord twice, first when I was 20

because my legs would just go numb and I'd fall over, then again when I was 30

because of weakness and a lot of pain.  Oh, and I lost bladder function before

my second surgery. The surgery is scary, but if you get a great doctor, it's a

lot less so. It is never a matter of not having a choice, though.

You will hear horror stories and you will get many opinions about what you

should/could do. In the end, it's a very individual thing and we all have to

make up our minds.  If you are losing function, most people believe it's best to

get it taken care of quickly. Personally, the first surgery I had within weeks

of my symptoms starting, and all of the symptoms went away. The second surgery,

I put that off for more than a year and it took a good six years to get the pain

(from the cord, not the surgery) to go away and I still don't have bladder

function or feeling in a lot of places. That said, they aren't getting a third

shot at me. I'll deal with whatever comes my way from now on because it seems

the more surgeries you have, the less likely you are to have a really good

outcome. Those are my impressions from being on this list since its inception,

and all the people we've seen come and go. Again, they aren't really decision

points, just information.

Good luck with your journey and know that this list is a great resource. There

are many good people here who are more than happy to give you answers and just

listen to you if you need to vent.

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:49 PM

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

I don't know all the lingo to say so I will read from my MRI of the L-spine.  It

says there is a large lipoma of the filum terminale reaching it's maximal cross

sectional callber at the level of L3where it measures 10x8mm & extending

approximately 13cm craniocaudally from the conus, which terminates in a low

position at the mid L2 vertebral body level, caudally into the sacrum where it

appears to terminate at the S2 level.  The conus demonstrates normal signal.

So that's what it says so I hope that answered your question.  I don't yet

understand alot yet I am just learning about this stuff.  I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have? 

Terry

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

Hi Terry -- what type of tethered cord do you have?  I had surgery for a

tight/thickend filum about 4 years ago.  I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: tetheredspinalcord

From: thowes1956@...

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

 

   

     

     

      Hi my name is Terry and this is my first post to the group.  I've been

told I have tethered cord and will definetly be operated on soon.  I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation.  I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation.  I would love to hear stories from other people with the same thing.

   

   

   

   

                           

[Guest guest]

I was born with spina bifida, so I had neurological deficiencies all my life. 

In spite of a goofy gait, I lead a relatively normal life until about 10 years

ago when I noticed progressive lower extremity weakness and some " butt " pain. 

After a lot of investigation and referrals, the diagnosis was tethered cord plus

lumbar stenosis.  I had surgery at a top-notch hospital with a top-rated

neurosurgeon when I was 65 and it turned out that the tethering was not as

serious as it looked on the MRI, but the stenosis was worse.  Unfortunately, I

developed an epidural hematoma which put pressure on my cord.  Although a 2nd

surgery on post-op day 4 took care of that, there was damage.  I am worse now

than I was pre-surgery and am one of the folks who wish I had not done it (I'm

now 68, depend on a walker, and had to get hand controls on my car).  The

advice of the group that each of us is unique is the best advice.  Get at least

2 opinions, research the

docs thoroughly, ask a lot of questions.  Best of luck to you.

 

Countess

________________________________

To: " tetheredspinalcord " <tetheredspinalcord >

Sent: Wednesday, August 8, 2012 4:24 PM

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

Dee it sounds like you have more pain than I do.  I had alot of pain about 2

months ago but it is mostly weakness in the legs right now.  I live in RI and

was diagnosted by 1neurosurgeon and she sent me to another one and while with

him he sent for another one and she is the one who will do the surgery.  She is

a pediactric neurosurgeon.  I'll find out about my MRI and the date for the

operation on Friday. 

I am still working and some days it's really hard!!  I do have better days and

today wasn't too bad:)  I'm sorry to hear your not having a good day.  The

surgeon did tell me my symptoms now might not go away it depends how much nerve

damage was done.  It's really to prevent any more nerve damage.

I've had back pain off and on for years.  I've also had years of headaches,

dizziness and light-headedness so I guess that's what they are looking for in

the MRI.  By the way I am 55 years old and I work part time in a very busy

doctor's office.   Thanks for sharing your story I appreciate it.  If I

didn't answer all you asked just ask again.

Terry

 

________________________________

From: Dee Allaert <mailto:deeinbc%40hotmail.com>

To: " mailto:tetheredspinalcord%40yahoogroups.com "

<mailto:tetheredspinalcord%40yahoogroups.com>

Sent: Wednesday, August 8, 2012 7:06 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

From what I understand, a lipoma is a more difficult surgery than simply cutting

the filum, which is what was done for me.  There are people in this group who

have had surgery for a lipoma. I wasn't diagnosed until I was in my late 30's

and had surgery at age 42.  I have had chronic back pain since I was 18, left

leg weakness/muscle atrophy, loss of dorsiflexion in that ankle, aching legs. 

I also had spondylolisthesis to complicate things even further.  I had a spinal

fusion 2 years ago for that.  I was able to maintain a very active lifestyle

til my early 30's. For me, I had a long recovery from surgery before I could say

it helped.  I do have a lot less aching in my legs and can walk further than

before my surgeries.  I can stand longer as well.  But, still, activity

increases my pain, rest relieves it and I do get flare-ups (sadly, am in one

right now).  There is no change in my nerve damage (I guess that's good as the

goal of surgery is to

halt progression of symptoms -- does not always relieve pain). I'd say I'm one

of the luckier ones in this group that manages most of the time with little in

the way of pain meds, but am not working -- if I try to do too much I get worse

right away, so have to really pace myself and avoid a lot of activities.  I

also suffer from chronic headaches and other pain issues but I'm not convinced

that's related to my TC. Some people have great success from surgery, others are

worse off.  I think everyone in the group would tell you to make sure you have

a neurosurgeon EXPERIENCED in this type of surgery, and would also recommend

getting a 2nd opinion.  If you tell us where you are living someone may be able

to recommend someone in your area for you to get another opinion from.  You

really need to way the risks of surgery vs the risks of not doing the surgery. 

For me, I wish I'd done it sooner to possibly have avoided the nerve damage in

my left leg --

others will tell you they wish they never had the surgery.  But, the biggest

frustration with this syndrome is everyone's experience/symptoms are different

-- there is no crystal ball that will predict the outcome of either choice. 

That is why you really need to discuss your particular situation with your

neurosurgeon -- and preferably get a second opinion. If you are suffering from

any bladder/bowel issues then there is not much choice but to go ahead with

surgery -- as this can be irreversable due to nerve damage if left to long. Dee

To: mailto:tetheredspinalcord%40yahoogroups.com

From: mailto:thowes1956%40yahoo.com

Date: Wed, 8 Aug 2012 15:49:38 -0700

Subject: Re: New to the group and would like to hear stories about others

with tethered cord.

 

   

     

     

      I don't know all the lingo to say so I will read from my MRI of the

L-spine.  It says there is a large lipoma of the filum terminale reaching it's

maximal cross sectional callber at the level of L3where it measures 10x8mm &

extending approximately 13cm craniocaudally from the conus, which terminates in

a low position at the mid L2 vertebral body level, caudally into the sacrum

where it appears to terminate at the S2 level.  The conus demonstrates normal

signal.

So that's what it says so I hope that answered your question.  I don't yet

understand alot yet I am just learning about this stuff.  I am scared to have

the surgery but feel I really don't have too much choice but to have it.

I have weak legs with some pain and my big toe is half numb and the numbness

seems to be moving a little down my foot in the last couple of days.

What symptoms did you have? 

Terry

________________________________

From: Dee Allaert <mailto:deeinbc%40hotmail.com>

To: " mailto:tetheredspinalcord%40yahoogroups.com "

<mailto:tetheredspinalcord%40yahoogroups.com>

Sent: Wednesday, August 8, 2012 6:35 PM

Subject: RE: New to the group and would like to hear stories about others

with tethered cord.

 

Hi Terry -- what type of tethered cord do you have?  I had surgery for a

tight/thickend filum about 4 years ago.  I too had an MRI of my brain which

lucky for me ruled out chiari. Dee

To: mailto:tetheredspinalcord%40yahoogroups.com

From: mailto:thowes1956%40yahoo.com

Date: Wed, 8 Aug 2012 22:07:40 +0000

Subject: New to the group and would like to hear stories about others with

tethered cord.

 

   

     

     

      Hi my name is Terry and this is my first post to the group.  I've been

told I have tethered cord and will definetly be operated on soon.  I just went

for an MRI of the brain, T & C-spine to see if I have Chiairi malformation.  I go

to she the doctor on Friday to talk about the MRI and to set up a date for the

operation.  I would love to hear stories from other people with the same thing.