Re: Options for retethered cord..to Holly

[Guest guest]

Check out more than the one MD though you don't need to like him if he has

a great reputation and gobs of experience with tethered cord. We can never

be certain that we are doing the right thing with our kids..we try to pick

the right doc, get all the info we can, and go with it. My daughter is

now 20...she has had 4 surgeries...I was terrified each and every time that

it was a huge mistake .. we have lucked out with all 4 .. And three

different surgeons due to moves around the country! The advice is to detether

to

prevent problems..subsequent surgeries are less clear and that decision is

hopefully made together with a NSG with whom you feel confident and your

own personal research and discussion here. Much good luck with this

terribly difficult decision. Randee

In a message dated 1/17/2011 8:55:05 P.M. Central Standard Time,

livedream_believe@... writes:

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?) 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,

From: bluegrass.momma <_bluegrass.momma@..._

(mailto:bluegrass.momma@...) >

Subject: Options for retethered cord

To: _tetheredspinalcord _

(mailto: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

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