Re: Options for retethered cord

[Guest guest]

Thanks! I think our dislike for our NS stems directly form him not telling us

what we wanted to hear from the get-go! At least he is forthright! We live in

KY, and go to the University of KY. Children's Hospital. I suppose our pursuit

of a second opinion will largely depend on what the first ends up being...I

appreciate your experience and information! Thanks again!

>

>

> Holly -- my neurosurgeon is far from warm and fuzzy as well -- that I think is

very common. I do think I'm in capable hands however with him. I would make

sure you get a second opinion on your son's condition if possible -- if you

mention to the group where you are someone might be able to give you some

suggestions of who else to see.

>

> Please don't feel you did the wrong thing for your son -- all you can do is

make the best decision possible with the information you have at the time for

him. It is quite possible your son could have many more issues today had you

not done the surgery early on. I had a tight/fatty filum tether and had no

symptoms until I was 18, but looking back I wish I'd had surgery then when my

symptoms began, but that was way before MRI's so I went undiagnosed since I had

other spinal issues that were blamed for my problems. Luckily I've had no

bladder issues, but I do have nerve damage in one leg and lots of back and leg

pain. Leg pain is so much better since my detethering a few years ago.

>

> The goal of surgery is to halt the progression of symptoms, and if you're

lucky get some function back. The longer nerve damage goes on (eg bladder

problems included), the less likely the chance of reversing symptoms with

surgery. Also, everyone's situation is unique -- that is the frustrating thing

about this syndrome -- for some surgery will be miraculous and for others can

make things worse. That is why I stress getting more than one opinion on your

son's condition.

>

> Good luck and keep us posted.

>

> Dee

>

>

>

>

> To: tetheredspinalcord

> From: bluegrass.momma@...

> Date: Mon, 17 Jan 2011 20:39:14 +0000

> Subject: Options for retethered cord

>

>

>

>

>

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been affected by

a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

lipoma. He had a detethering surgery when he was only 4 months old as a

preventative measure. Now I wonder if that was the right thing to do, and of

course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said he may

have as he grew. He is having significant urinary incontinence issues. Some days

he doesn't have any episodes at all, but then other day he will have 10 of them!

I think it is effected by his bowels to some degree. It took a while for our

pediatrician to become convinced he needed to refer him back to the

neurosurgeon, but now we have an upcoming appointment. I think he is a good

surgeon, but not real warm and fuzzy, and honestly, I dread going back to see

him. I was hoping he was out of our lives forever! Now I'm hoping he can fix

everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even caused

these complications! It's the great unknown right now, until we have our

appointment. I don't even know if surgery will be recommended. But I'm scared

for my son. I hear things like, " may loose the ability to walk, " " pain, "

" scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of his

feet is pigeon toed already, we realized at a recent doctor visit. Otherwise, he

is so athletically built and capable, all except for this. It may change his

life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do share!

>

> Thanks for listening,

>

> Holly

>

>

>

>

>

>

[Guest guest]

Wow, Jenn!

I really appreciate your perspective! How right you are,

with a strong will, courage, and people who love you, there is not much one

can't do! I can't believe you've been zip lining!!! I'm afraid to even ride in

a airplane! I guess I've got a lot of fears to face, surgery only being one of

them. Thanks for the encouragement!

>

>

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been affected

> by a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

> lipoma. He had a detethering surgery when he was only 4 months old as a

> preventative measure. Now I wonder if that was the right thing to do, and of

> course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said he

> may have as he grew. He is having significant urinary incontinence issues.

> Some days he doesn't have any episodes at all, but then other day he will

> have 10 of them! I think it is effected by his bowels to some degree. It

> took a while for our pediatrician to become convinced he needed to refer him

> back to the neurosurgeon, but now we have an upcoming appointment. I think

> he is a good surgeon, but not real warm and fuzzy, and honestly, I dread

> going back to see him. I was hoping he was out of our lives forever! Now I'm

> hoping he can fix everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even caused

> these complications! It's the great unknown right now, until we have our

> appointment. I don't even know if surgery will be recommended. But I'm

> scared for my son. I hear things like, " may loose the ability to walk, "

> " pain, " " scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of his

> feet is pigeon toed already, we realized at a recent doctor visit.

> Otherwise, he is so athletically built and capable, all except for this. It

> may change his life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do share!

>

> Thanks for listening,

>

> Holly

>

>

>

>

>

[Guest guest]

Thank you, !

It helps just to know more of what to expect,

and your thoughtfulness is appreciated!

Blessings to you and yours too!

>

>

>

> Subject: Options for retethered cord

> To: tetheredspinalcord

> Date: Monday, January 17, 2011, 2:39 PM

>

>

>  

>

>

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been affected by

a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

lipoma. He had a detethering surgery when he was only 4 months old as a

preventative measure. Now I wonder if that was the right thing to do, and of

course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said he may

have as he grew. He is having significant urinary incontinence issues. Some days

he doesn't have any episodes at all, but then other day he will have 10 of them!

I think it is effected by his bowels to some degree. It took a while for our

pediatrician to become convinced he needed to refer him back to the

neurosurgeon, but now we have an upcoming appointment. I think he is a good

surgeon, but not real warm and fuzzy, and honestly, I dread going back to see

him. I was hoping he was out of our lives forever! Now I'm hoping he can fix

everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even caused

these complications! It's the great unknown right now, until we have our

appointment. I don't even know if surgery will be recommended. But I'm scared

for my son. I hear things like, " may loose the ability to walk, " " pain, "

" scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of his

feet is pigeon toed already, we realized at a recent doctor visit. Otherwise, he

is so athletically built and capable, all except for this. It may change his

life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do share!

>

> Thanks for listening,

>

> Holly

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello Holly,

 I'm sorry you have to go through this but I'm glad you have reached out to all

of us!!! I am a mother of a now 5 year old who has had 3 untethering surgeries

and will be having another one!! This is VERY hard to deal with and overwhelming

but believe me it's the right choice.My dauhter wasn't diagnosed until two years

old and she presented with symtoms from birth.Due to this she suffered extreme

nerve loss in her bowl and this past summer had 50% of her large intestine

removed because it was dead.I know surgery is very scary but it is much better

than the alternative.I have a wonderful neurosurgeon.I'm not sure where you live

as I live in Boston,Massachusetts but we travel to Baltimore MD to see Dr.

Carson who is my daughters surgeon at s Hopkins Hospital.He is

great!! If possible you should definitely see him if you can.He saved my

daughter's life.The doctors here in Boston were ready to write her off but he

said no way he could help.He

has taken the time to explain to me that some patients are very sensitive

meaning their nerves react very quickly when the tethering or scar tissue occur

and that they need to be untethered over and over until they are fully grown

because of the growth spurts.This was something I was completely unaware of

before.He also said that although it's hard to see the children go through the

surgery the alternative is far worse!! I'm not sure if this helped you at all

but I hope so and I am very aware of this reoccuring tethering so I am available

to talk whenever!!! If you have any questions at all I will try to help. I'm a

single mom and its been very hard even financially but where there is a will

there is a way.I pray your son is healed and that you and your family find the

right answers you are looking for.Sorry for the long explanation I just want to

be as helpful as possible

                                        \

                                     Corinn

Subject: Options for retethered cord

To: tetheredspinalcord

Date: Monday, January 17, 2011, 3:39 PM

 

Hello everyone,

While I'm thankful this group exists, I am sorry you all have been affected by a

tethered spinal cord.

My son was born with a tethered spinal cord, it was tethered to a fatty lipoma.

He had a detethering surgery when he was only 4 months old as a preventative

measure. Now I wonder if that was the right thing to do, and of course, I feel

guilt being this is a deformity which happens in utero.

But, regardless, my now 8 year old son is having the problems they said he may

have as he grew. He is having significant urinary incontinence issues. Some days

he doesn't have any episodes at all, but then other day he will have 10 of them!

I think it is effected by his bowels to some degree. It took a while for our

pediatrician to become convinced he needed to refer him back to the

neurosurgeon, but now we have an upcoming appointment. I think he is a good

surgeon, but not real warm and fuzzy, and honestly, I dread going back to see

him. I was hoping he was out of our lives forever! Now I'm hoping he can fix

everything!

I'm not a big fan of surgery. I'm suspicious surgery may have even caused these

complications! It's the great unknown right now, until we have our appointment.

I don't even know if surgery will be recommended. But I'm scared for my son. I

hear things like, " may loose the ability to walk, " " pain, " " scoliosis, " " sexual

dysfunction, " and " foot deformity. "

It makes living with incontinence seem like a walk in the park! One of his feet

is pigeon toed already, we realized at a recent doctor visit. Otherwise, he is

so athletically built and capable, all except for this. It may change his life

so dramatically.

I just don't know, but I'm hoping for the best!

Anyway, if anyone has similar experiences or any insight, please do share!

Thanks for listening,

Holly

[Guest guest]

,

Through a yahoo group, I've been fortunate enough to connect with other families

who are dealing with tethered spinal cord issues. It really sounds like

will have to have surgery again if his cord has become retethered. It's the

basic standard of practice...

This Dr. Carson sounds like he is worth the trip!

We need to find out what our options are with our insurance!

________________________________

To: tetheredspinalcord

Sent: Wed, January 19, 2011 3:48:46 PM

Subject: Re: Options for retethered cord

Hello Holly,

I'm sorry you have to go through this but I'm glad you have reached out to all

of us!!! I am a mother of a now 5 year old who has had 3 untethering surgeries

and will be having another one!! This is VERY hard to deal with and overwhelming

but believe me it's the right choice.My dauhter wasn't diagnosed until two years

old and she presented with symtoms from birth.Due to this she suffered extreme

nerve loss in her bowl and this past summer had 50% of her large intestine

removed because it was dead.I know surgery is very scary but it is much better

than the alternative.I have a wonderful neurosurgeon.I'm not sure where you live

as I live in Boston,Massachusetts but we travel to Baltimore MD to see Dr.

Carson who is my daughters surgeon at s Hopkins Hospital.He is

great!! If possible you should definitely see him if you can.He saved my

daughter's life.The doctors here in Boston were ready to write her off but he

said no way he could help.He

has taken the time to explain to me that some patients are very sensitive

meaning their nerves react very quickly when the tethering or scar tissue occur

and that they need to be untethered over and over until they are fully grown

because of the growth spurts.This was something I was completely unaware of

before.He also said that although it's hard to see the children go through the

surgery the alternative is far worse!! I'm not sure if this helped you at all

but I hope so and I am very aware of this reoccuring tethering so I am available

to talk whenever!!! If you have any questions at all I will try to help. I'm a

single mom and its been very hard even financially but where there is a will

there is a way.I pray your son is healed and that you and your family find the

right answers you are looking for.Sorry for the long explanation I just want to

be as helpful as possible

Corinn

Subject: Options for retethered cord

To: tetheredspinalcord

Date: Monday, January 17, 2011, 3:39 PM

Hello everyone,

While I'm thankful this group exists, I am sorry you all have been affected by a

tethered spinal cord.

My son was born with a tethered spinal cord, it was tethered to a fatty lipoma.

He had a detethering surgery when he was only 4 months old as a preventative

measure. Now I wonder if that was the right thing to do, and of course, I feel

guilt being this is a deformity which happens in utero.

But, regardless, my now 8 year old son is having the problems they said he may

have as he grew. He is having significant urinary incontinence issues. Some days

he doesn't have any episodes at all, but then other day he will have 10 of them!

I think it is effected by his bowels to some degree. It took a while for our

pediatrician to become convinced he needed to refer him back to the

neurosurgeon, but now we have an upcoming appointment. I think he is a good

surgeon, but not real warm and fuzzy, and honestly, I dread going back to see

him. I was hoping he was out of our lives forever! Now I'm hoping he can fix

everything!

I'm not a big fan of surgery. I'm suspicious surgery may have even caused these

complications! It's the great unknown right now, until we have our appointment.

I don't even know if surgery will be recommended. But I'm scared for my son. I

hear things like, " may loose the ability to walk, " " pain, " " scoliosis, " " sexual

dysfunction, " and " foot deformity. "

It makes living with incontinence seem like a walk in the park! One of his feet

is pigeon toed already, we realized at a recent doctor visit. Otherwise, he is

so athletically built and capable, all except for this. It may change his life

so dramatically.

I just don't know, but I'm hoping for the best!

Anyway, if anyone has similar experiences or any insight, please do share!

Thanks for listening,

Holly

[Guest guest]

Oops, I meant to send that to my husband!;o

Corinn,

It is inspiring to hear of your daughter overcoming such odds!

Thanks for sharing your experience! Dr. Carson sounds wonderful!

Thanks for your thoughts and prayers!

We'll do the same for you and your daughter!

Warm regards,

Holly

________________________________

To: tetheredspinalcord

Sent: Wed, January 19, 2011 4:07:30 PM

Subject: Re: Options for retethered cord

,

Through a yahoo group, I've been fortunate enough to connect with other families

who are dealing with tethered spinal cord issues. It really sounds like

will have to have surgery again if his cord has become retethered. It's the

basic standard of practice...

This Dr. Carson sounds like he is worth the trip!

We need to find out what our options are with our insurance!

________________________________

To: tetheredspinalcord

Sent: Wed, January 19, 2011 3:48:46 PM

Subject: Re: Options for retethered cord

Hello Holly,

I'm sorry you have to go through this but I'm glad you have reached out to all

of us!!! I am a mother of a now 5 year old who has had 3 untethering surgeries

and will be having another one!! This is VERY hard to deal with and overwhelming

but believe me it's the right choice.My dauhter wasn't diagnosed until two years

old and she presented with symtoms from birth.Due to this she suffered extreme

nerve loss in her bowl and this past summer had 50% of her large intestine

removed because it was dead.I know surgery is very scary but it is much better

than the alternative.I have a wonderful neurosurgeon.I'm not sure where you live

as I live in Boston,Massachusetts but we travel to Baltimore MD to see Dr.

Carson who is my daughters surgeon at s Hopkins Hospital.He is

great!! If possible you should definitely see him if you can.He saved my

daughter's life.The doctors here in Boston were ready to write her off but he

said no way he could help.He

has taken the time to explain to me that some patients are very sensitive

meaning their nerves react very quickly when the tethering or scar tissue occur

and that they need to be untethered over and over until they are fully grown

because of the growth spurts.This was something I was completely unaware of

before.He also said that although it's hard to see the children go through the

surgery the alternative is far worse!! I'm not sure if this helped you at all

but I hope so and I am very aware of this reoccuring tethering so I am available

to talk whenever!!! If you have any questions at all I will try to help. I'm a

single mom and its been very hard even financially but where there is a will

there is a way.I pray your son is healed and that you and your family find the

right answers you are looking for.Sorry for the long explanation I just want to

be as helpful as possible

Corinn

Subject: Options for retethered cord

To: tetheredspinalcord

Date: Monday, January 17, 2011, 3:39 PM

Hello everyone,

While I'm thankful this group exists, I am sorry you all have been affected by a

tethered spinal cord.

My son was born with a tethered spinal cord, it was tethered to a fatty lipoma.

He had a detethering surgery when he was only 4 months old as a preventative

measure. Now I wonder if that was the right thing to do, and of course, I feel

guilt being this is a deformity which happens in utero.

But, regardless, my now 8 year old son is having the problems they said he may

have as he grew. He is having significant urinary incontinence issues. Some days

he doesn't have any episodes at all, but then other day he will have 10 of them!

I think it is effected by his bowels to some degree. It took a while for our

pediatrician to become convinced he needed to refer him back to the

neurosurgeon, but now we have an upcoming appointment. I think he is a good

surgeon, but not real warm and fuzzy, and honestly, I dread going back to see

him. I was hoping he was out of our lives forever! Now I'm hoping he can fix

everything!

I'm not a big fan of surgery. I'm suspicious surgery may have even caused these

complications! It's the great unknown right now, until we have our appointment.

I don't even know if surgery will be recommended. But I'm scared for my son. I

hear things like, " may loose the ability to walk, " " pain, " " scoliosis, " " sexual

dysfunction, " and " foot deformity. "

It makes living with incontinence seem like a walk in the park! One of his feet

is pigeon toed already, we realized at a recent doctor visit. Otherwise, he is

so athletically built and capable, all except for this. It may change his life

so dramatically.

I just don't know, but I'm hoping for the best!

Anyway, if anyone has similar experiences or any insight, please do share!

Thanks for listening,

Holly

[Guest guest]

Holly,

 I also want to tell you that there is another doctor there named Dr. Jallo and

he specializes in tethered cords as well.He has helped with my daughter

Amani's case.You can google both of them and read about their work.I thought I

would give you another wonderful doctor there in case your insurance says no to

one of them! Again thank you for your thoughts and I will continue to keep your

family in prayer.

Subject: Options for retethered cord

To: tetheredspinalcord

Date: Monday, January 17, 2011, 3:39 PM

Hello everyone,

While I'm thankful this group exists, I am sorry you all have been affected by a

tethered spinal cord.

My son was born with a tethered spinal cord, it was tethered to a fatty lipoma.

He had a detethering surgery when he was only 4 months old as a preventative

measure. Now I wonder if that was the right thing to do, and of course, I feel

guilt being this is a deformity which happens in utero.

But, regardless, my now 8 year old son is having the problems they said he may

have as he grew. He is having significant urinary incontinence issues. Some days

he doesn't have any episodes at all, but then other day he will have 10 of them!

I think it is effected by his bowels to some degree. It took a while for our

pediatrician to become convinced he needed to refer him back to the

neurosurgeon, but now we have an upcoming appointment. I think he is a good

surgeon, but not real warm and fuzzy, and honestly, I dread going back to see

him. I was hoping he was out of our lives forever! Now I'm hoping he can fix

everything!

I'm not a big fan of surgery. I'm suspicious surgery may have even caused these

complications! It's the great unknown right now, until we have our appointment.

I don't even know if surgery will be recommended. But I'm scared for my son. I

hear things like, " may loose the ability to walk, " " pain, " " scoliosis, " " sexual

dysfunction, " and " foot deformity. "

It makes living with incontinence seem like a walk in the park! One of his feet

is pigeon toed already, we realized at a recent doctor visit. Otherwise, he is

so athletically built and capable, all except for this. It may change his life

so dramatically.

I just don't know, but I'm hoping for the best!

Anyway, if anyone has similar experiences or any insight, please do share!

Thanks for listening,

Holly