thank you

[Guest guest]

Dear Tina,

I was just dumbfounded to hear about how 's care was handled.

The coordinated team sounds like exactly the place to be - I was

thinking about this before, thinking perhaps there might be a spina

bifida coordinated team that you could hook up with, but if they have

one for myelomeningocele that sounds great too.

I just can't believe that no follow-up care was arranged for ,

and that they explained so little about later screening and possible

nerve problems after surgery. As you can probably see from this board,

anyone who has had an operation for tethered cord has some risk of

retethering again, so it's important that there are doctors around who

can recognize the signs of retethering and determine when it's time for

another work-up. Lipomas can also recur - I don't know what the rate

of recurrence is, or how frequent the screening MRIs should be, but

this is something you can ask the team about.

The nerves that seem to be the most vulnerable to damage from tethered

cord are those that control bowel and bladder function. The motor

nerves are a little more resilient, so it's not unusual for people to

recover some motor strength after an untethering operation. Bowel/

bladder problems, however, are more likely to stay. Part of the

problem is that the particular fibers that make up this nerve type are

very fragile. Another potential reason is that the nerve cells for

bowel/bladder function are located in the very tip of the spinal cord -

the area that gets yanked on the most when there's tethering. People

can get either incontinence or retention. One little four-year-old boy

I saw after tethered cord release had much more problems with

constipation, and total inability to have a bowel movement on his own.

In general, kids are somewhat different in how much nerve function they

can recover, when compared to adults who have had tethering. However,

bowel/bladder difficulties are par for the course with both kids and

adults who have had this. It's almost an expected complication,

although it doesn't happen to everyone. The team will, I'm sure,

immediately order some urinary studies to help clear this up. It can

be a little harder to measure lack of bowel control - but this is such

a classic picture in kids with tethering.

Anyway, I am thrilled to hear that is walking. That is just

terrific. I think, once you meet with the team, that you'll get an

amazing amount of basic information about his disorder, and the many

things that can be done to help with the symptoms he does have.

The papers on tethered cord still claim that one of the differences

between adults and kids is that in kids " there's very little pain. "

I'm really starting to wonder whether that's true, or if it's just that

no-one really tried to evaluate how much pain there was in kids not

able to verbalize it themselves. I think parents usually know very

well when their child is in pain. I am glad to hear that improved so

much after the surgery.

Good luck with you appointment this morning!

Take care,

Kirsten

[Guest guest]

On potty training, most kids start out with no control

at the beginning of their potty training. They never

had to control it, so they don't know how. I would

try to potty train him the way you would a child with

no problems. See if he's interested in the potty, and

if he ever does manage to pee there, ask him to stop

the flow, see if he can.

--- tnmjrc wrote:

> Thanks, everyone, for responding to my questions.

>

> has his 1st appointment in the " Mylo "

> Coordinated Care

> Clinic tomorrow. His surgery was last year but we

> were NEVER

> referred to ANY DOCTOR for follow up care. The

> neurosurg. saw him

> at 3 weeks, and 5 weeks & then said he would be fine

> and sent us on

> our merry way.

>

> I repeatedly asked who should he see, who follows

> him now? He just

> said a " regular " neurologist but that he should be

> totally fine

> now. His neuro left the hospital shortly after the

> mixup in his

> case so he didn't even have a neurologist!

>

> is 4 and has just begun walking since the

> surgery.

> Apparently this Coord. Care Clini has a team of 5

> drs. (Neuro,

> Urologist, Ortho, Physiatry, & PT) that all see your

> child at the

> same time...every 2 mos. after surgery until

> " cleared " . We were

> never even told the clinic existed. A hand written,

> anonomous note

> was mailed to our home claiming he had an appt. in

> this clinic & to

> call to confirm. When I called, the hospital had no

> record of the

> appt. but began asking questions that led to him

> being included in

> the clinic beginning tomorrow.

>

> I've very perplexed. I guess tomorrow I need to get

> an exact

> definition of his exact diagnosis...in writing

> (thanks for that

> advice!) His spinal cord ended normally & naturally

> at L1/L2, but

> the lipoma began at L3-S5. No dr mentioned tethered

> cord until

> immediately after the surgery due to the

> " significant " releasing of

> his cord.

>

> All I know is he is no longer in the excrutiating

> pain that he was

> in prior to the surgery. And, he can walk! Now I

> guess I'm being

> greedy & I'd like to have potty training, too. I

> know he has the

> sensation of going. I do not believe he can stop

> the flow of urine

> or control the bm at this point. Could the nerves

> be damaged thus

> intefering with his control?

>

> Any potty suggestions? There's a wealth of

> knowledge here, I just

> know it! Thanks for the support.

>

> Tina

> Mom to Nick (7), (4 w/ detethered cord &

> L3-S5 lipoma

> removed) & (3)

>

>

>

__________________________________________________

[Guest guest]

I agree with here. Try it, you may be suprised.

I, or rather my Mom,was told that I wouldn't have Control over that

area......guess what? I do, I have a typically functioning Bowel and

Bladder. Of course they didn't think I would

have Function over this, not just because of Tethered Cord, but because of

Spina Bifida. So it might be alittle different in my Case.

Me

mymocha@...

> On potty training, most kids start out with no control

> at the beginning of their potty training. They never

> had to control it, so they don't know how. I would

> try to potty train him the way you would a child with

> no problems. See if he's interested in the potty, and

> if he ever does manage to pee there, ask him to stop

> the flow, see if he can.

---

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[Guest guest]

I agree with here. Try it, you may be suprised.

I, or rather my Mom,was told that I wouldn't have Control over that

area......guess what? I do, I have a typically functioning Bowel and

Bladder. Of course they didn't think I would

have Function over this, not just because of Tethered Cord, but because of

Spina Bifida. So it might be alittle different in my Case.

Me

mymocha@...

> On potty training, most kids start out with no control

> at the beginning of their potty training. They never

> had to control it, so they don't know how. I would

> try to potty train him the way you would a child with

> no problems. See if he's interested in the potty, and

> if he ever does manage to pee there, ask him to stop

> the flow, see if he can.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.384 / Virus Database: 216 - Release Date: 8/21/2002

[Guest guest]

I agree with here. Try it, you may be suprised.

I, or rather my Mom,was told that I wouldn't have Control over that

area......guess what? I do, I have a typically functioning Bowel and

Bladder. Of course they didn't think I would

have Function over this, not just because of Tethered Cord, but because of

Spina Bifida. So it might be alittle different in my Case.

Me

mymocha@...

> On potty training, most kids start out with no control

> at the beginning of their potty training. They never

> had to control it, so they don't know how. I would

> try to potty train him the way you would a child with

> no problems. See if he's interested in the potty, and

> if he ever does manage to pee there, ask him to stop

> the flow, see if he can.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.384 / Virus Database: 216 - Release Date: 8/21/2002

[Guest guest]

Hi Truff4507,

Since both you and your twin have EN, there may be a genetic connection, so the

tests for CLL might turn up something. Please mention that you both have EN. I

have long hoped we could get genetic testing for EN--maybe this is a start.

Love,

[Guest guest]

Already told them! Great minds think alike :hug

>

> Hi Truff4507,

> Since both you and your twin have EN, there may be a genetic connection, so

the tests for CLL might turn up something. Please mention that you both have EN.

I have long hoped we could get genetic testing for EN--maybe this is a start.

> Love,

>

>

[Guest guest]

thank you for your encouragement good wishes and prayers.

tomorrow i see the orthopedic surgeon and hopefully get the broken hand set and

the hard cast applied. looking forward to getting the healing process started.

steve has been great. he said i feed mysef so well with my left hand you'd think

i was a lefty.lol. walked 2 miles today and no en or use of support stockings.

so far so good. still in remission.

love,