Options for retethered cord

January 17, 2011

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

January 17, 2011

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

January 17, 2011

Holly,

Keep in mind that walking is but one way to get there ( & there r a lot of

ways to get there). If u cath, u never have to worry about gross public

bathrooms. A good OT can teach anyone an alternative way to do what they

want. I've been water skiing, jet skiing, been on a zip line, horseback

riding, golfing, & swimming, just to name a few things. And I'm a T12 para

(no motor or sensation below T12). Humans r pretty adaptable creatures. As

long as he has u to support him, I'm confident he'll do fine with whatever

abilities/limitations he has.

Best wishes,

Jenn

Sent from my iPhone

On Jan 17, 2011, at 15:39, " bluegrass.momma "

wrote:

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

January 18, 2011

Welcome to the group Holly, sorry you have to be here. I know as Momma's we tend

to feel guilty for everything but it wasnt anything you did or didnt do to cause

your sons TC. As for the surgery, it is done to prevent problems and he may have

had worse problems had you not gone ahead with it. I'm so sorry he is having

more problems. The inconsistency of the symptoms are quite common and one of the

many frustrating things about this condition. I chalk it up to faulty signals

through the spinal cord. I am glad you are having him re-evaluated, get a second

opinion too. If in fact he is retethered then with the bladder ( &

bowel?)Â issues they will probably recommend another surgery. It is unfortunate

but not uncommon to retether although you would never hear it from a surgeons

mouth. They still continue to deny that retethering happens for some reason but

many on this list have learned firsthand that it does, not always but it does.

They may be unable to

tell on MRI if he has retethered without doing serial runs in different

positions ie on his back, on his tummy etc to see if the cord moves. Its true

that surgery can cause problems as well so I understand your concern. You have

come to a good place to ask questions and hopefully get a good recommendation

for NSG's as well. Many Blessings to you and your family,

Subject: Options for retethered cord

To: tetheredspinalcord

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

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