New member- lots of questions

[Guest guest]

Hello,

My name is Kari and I am new to this group. I am 24 yrs old

and I am a married mother of three. I work as a pediatric psych

nurse here in Indiana. I joined this group because my youngest

daughter, Jillian was recently diagnosed with tethered cord.

Our saga started out when Jillian was diagnosed with

craniosynostosis in January, she had surgical correction in March

and pulled through beautifully. She has always been delayed in her

motor development but we always attributed it to the cranio. In

June Jillian was at the pediatrician I mentioned to him that I felt

there was something wrong with Jillians feet. When I stood her up

her arch was so high it didn't touch the floor and she could not

hold her feet in a neutral position, that's if I get her feet on the

ground, most of the time, she refused to bear weight. She was almost

12 months- not crawling, not standing, not pulling up and not taking

steps. And she had been tossing and turning, arching her back and

screaming at night, only get a max of 5 hours of sleep per night.

What I thought was an ortho problem, he thought was a neuromuscular

problem, so he ordered an MRI.

She had the MRI, the nurses managed to traumatize the hell

out of her when giving her the sedation by mouth. Thanks to them I

can no longer get her to take oral medication. The results were in

the next day, but I missed the Dr's call. The day after that I

listened to my voicemail and it was the pediatrician saying that " we

need to talk, I think you need to go back and see Dr. Moriarty

(Jill's neurosurgeon) I immediately knew it was bad news and began

to cry.

Turns out it could be worse but it is definitely not normal.

Had the appt with the neurosurgeon who confirmed the diagnosis, said

she basically had every symptom and set up surgery for Thursday the

24th of August. Yesterday, Jillian had to be put on Tylenol 3

because of her pain being so bad. Unfortunatley the Dr. got called

away to emergency surgery and I didn't get a lot of questions

answered by him. The MRI showed a " very " thick and fatty filum. I

was wondering if there are any parents or persons with this

condition that could answer a few questions:

1.)How long does the surgery generally take?

2.)Did your child or you have to stay in ICU?

3.) Did your child or you have to lay flat after surgery?

4.) How long was the hospital stay?

5.) Was there any complications?

6.) Will there be any recovery of strength in the legs and

7.) If any of you or your children had deformed feet, did it get

better after surgery or did it require treatment?

OMG, that was a novel and I apoligize, I am a bumbling mess right

now, I appreciate anything that can give me info. I am off to take

finals. Thanks again

Kari

[Guest guest]

1.)How long does the surgery generally take? It depends on how much they have

to do, Mackenzie's first surgery was 3.5 hours, the one coming up in 10 days

will be about 5-6.

2.)Did your child or you have to stay in ICU? No

3.) Did your child or you have to lay flat after surgery? Yes, for 2 days

4.) How long was the hospital stay? less than 4 days

5.) Was there any complications? None

6.) Will there be any recovery of strength in the legs and She has had a

complete recovery of strength, until she started retethering again.

7.) If any of you or your children had deformed feet, did it get

better after surgery or did it require treatment? So sorry, I can't answer

this one for you.

Hope everything goes well with your daughter and family; it's hard on all of

you.

Hugs, Diane V.

Grandma to Austin, Kaleb, Brittany, Mackenzie and Derick

--- Original Message -----

From: mycraniokidjill

To: tetheredspinalcord

Sent: Friday, August 04, 2006 5:28 AM

Subject: New member- lots of questions

Hello,

My name is Kari and I am new to this group. I am 24 yrs old

and I am a married mother of three.

Recent Activity

a.. 3New Members

Visit Your Group

[Guest guest]

Wow, sounds like surgery went well, where was it done?

Re: New member- lots of questions

Hi

I have not posted in a very long time. My daughter had this surgery in

February. She also had a fatty filum and she also bone spur and her cord was

tethered to both. SHe was born with club feet. One was surgically corrected in

the country she born and the other was corrected with massage in that country,

(Georgia) She hasand spina bifida occulta and scoliosis.

Her surgey lasted about four hours - the ordeal was close to eight. She was in

ICU for two nights. SHe was in a great deal of pain for about 30 hours.

Because her cord was tethered to the fatty tumor she may need to have the

surgery again as it is likely the filum will grow back. (sounds like this is the

case with your daughter as well)

Having said all that, the surgery was a huge success, her bladder control is

perfect following the surgery. She is STRONGER -oh my God, so much stronger. She

runs and jumps just like any other kid. This is a surgery to improve her

condtion - just remember that - and it worked for my daughter!!!

I do not think the surgey will correct the feet. It may or may not make her

legs stronger.

If she is in pain and losing feeling in her legs I would push to have the

surgey done NOW as she may not regain those feelings. I raised a huge stink at

my Children's hospital to get it done in two weeks after diagnosis as my

daughter was losing bladder control.

Good luck and believe all will be better,

Pam

[Guest guest]

My son had his detethering surgery when he was just 3 weeks old. 1) He was in

sugery for 6 hours, and because he had a hard time recovering from the

anesthetic, 2)he did have to go to the ICU overnight. 3)He had to be on his

stomach for 48 hours. The hardest part was keeping the wound clean at that age.

His skin kept reacting to the various kinds of tapes they used to cover the

area. 4)We were then in the hospital for two weeks. It wouldn't have been that

long, 5)except that he got a staph infection in the incision and the

neurosurgeon had to go back in to try and clean it out. It was long and

grueling, but my son can walk and hasn't said he's ever in pain. 7)He does have

slightly deformed feet, though. One toe insists on sitting up above the others,

and he wears braces up to just past his ankles to correct his pronation issues.

6)He goes to PT monthly to help him strengthen his legs. I feel he is improving,

but when I watch him try and keep up with the other kids his age, I feel a bit

heart sick. He hasn't noticed any difference yet, though, and he acts like a

perfectly happy little boy. Our biggest challenge thus far has been potty

training.

Does anyone have any suggestions on potty training? Our son will be four in Nov.

and he just was diagnosed with a neurogenic bladder. I guess it shouldn't be a

surprise, but we were so hoping. He has a hard time knowing when to go, and

getting there on time. It's been a long road and we're not even close.

-Shea

New member- lots of questions

Hello,

My name is Kari and I am new to this group. I am 24 yrs old

and I am a married mother of three. I work as a pediatric psych

nurse here in Indiana. I joined this group because my youngest

daughter, Jillian was recently diagnosed with tethered cord.

Our saga started out when Jillian was diagnosed with

craniosynostosis in January, she had surgical correction in March

and pulled through beautifully. She has always been delayed in her

motor development but we always attributed it to the cranio. In

June Jillian was at the pediatrician I mentioned to him that I felt

there was something wrong with Jillians feet. When I stood her up

her arch was so high it didn't touch the floor and she could not

hold her feet in a neutral position, that's if I get her feet on the

ground, most of the time, she refused to bear weight. She was almost

12 months- not crawling, not standing, not pulling up and not taking

steps. And she had been tossing and turning, arching her back and

screaming at night, only get a max of 5 hours of sleep per night.

What I thought was an ortho problem, he thought was a neuromuscular

problem, so he ordered an MRI.

She had the MRI, the nurses managed to traumatize the hell

out of her when giving her the sedation by mouth. Thanks to them I

can no longer get her to take oral medication. The results were in

the next day, but I missed the Dr's call. The day after that I

listened to my voicemail and it was the pediatrician saying that " we

need to talk, I think you need to go back and see Dr. Moriarty

(Jill's neurosurgeon) I immediately knew it was bad news and began

to cry.

Turns out it could be worse but it is definitely not normal.

Had the appt with the neurosurgeon who confirmed the diagnosis, said

she basically had every symptom and set up surgery for Thursday the

24th of August. Yesterday, Jillian had to be put on Tylenol 3

because of her pain being so bad. Unfortunatley the Dr. got called

away to emergency surgery and I didn't get a lot of questions

answered by him. The MRI showed a " very " thick and fatty filum. I

was wondering if there are any parents or persons with this

condition that could answer a few questions:

1.)How long does the surgery generally take?

2.)Did your child or you have to stay in ICU?

3.) Did your child or you have to lay flat after surgery?

4.) How long was the hospital stay?

5.) Was there any complications?

6.) Will there be any recovery of strength in the legs and

7.) If any of you or your children had deformed feet, did it get

better after surgery or did it require treatment?

OMG, that was a novel and I apoligize, I am a bumbling mess right

now, I appreciate anything that can give me info. I am off to take

finals. Thanks again

Kari

[Guest guest]

hi kari, my name is susan and dr. moriarty did 2 of my 3 children's tc release.

one child doesn't have it. my 2 that do have it are tethered due to the fatty

filum. it is impt to remember that outcomes wll be different when tethered due

to different reasons. and even if tethered in the same way, outcomes could still

be different. i noticed that you already had good answers to most of your

questions. they all mimic my situations that i have encountered. i am so sorry

for your emotional pain, nothing hurts more than your child hurting. my children

didn't have different feet,but my youngest had weak knees. his surgery was last

september. it has taken almost a year, but i can now see some strength coming to

his knees. they don't buckle any more. he can run fast again. this was the case

when he first ran at 1, then he slowed down at 2. had surgery at 2 years and 11

months. dr. moriarty keeps his pts flat on their stomachs for 2 full days. how

old are your other children? good luck, call dr. moriarty's office and make sure

that the nurse tells him about jillian's pain level, maybe he can move up her

surgery. it is about 2 1/2 weeks away. that is not that bad, but it's not

tomorrow. and it's a lot of nights in pain . i am sorry that your daughter was

traumatized in mri sedation. my first daughter was also. i was adamant about

sedation for other two and they don't remember a thing. my first daughter had

her sedation at 3 and is 7 now and still talks about it. and won't take orange

medicine unless i reassure her that it is not mri medicine. she recently had

another mri and did it w'out sedation. they can give iv sedation and it works

better and no horror. they don't like to, because an anesthecist or

anesthesiolgist has to stay in unit. but, remember this for next time. also,

you can give medicine yourself and not traumatize her. dr. raju is the

anesthesiologist to get for surgery, she does not believe in trauma. my first

daugher had surgery w/outany prior meds, she walked to surgery w/ raju and got

mask back there. this was because raju and heather worked a deal for 1 1/2 hour.

dr. raju took heather around the room w/ her, and talked to her and calmed her

down. when it was time for surgery, she did not force her on the stretcher and

did not force versed. heather does not remember this, but remebers the trauma of

the prior mri, when she was actually two months younger. take care, let me know

what i can do to help. susan fenley.

New member- lots of questions

Hello,

My name is Kari and I am new to this group. I am 24 yrs old

and I am a married mother of three. I work as a pediatric psych

nurse here in Indiana. I joined this group because my youngest

daughter, Jillian was recently diagnosed with tethered cord.

Our saga started out when Jillian was diagnosed with

craniosynostosis in January, she had surgical correction in March

and pulled through beautifully. She has always been delayed in her

motor development but we always attributed it to the cranio. In

June Jillian was at the pediatrician I mentioned to him that I felt

there was something wrong with Jillians feet. When I stood her up

her arch was so high it didn't touch the floor and she could not

hold her feet in a neutral position, that's if I get her feet on the

ground, most of the time, she refused to bear weight. She was almost

12 months- not crawling, not standing, not pulling up and not taking

steps. And she had been tossing and turning, arching her back and

screaming at night, only get a max of 5 hours of sleep per night.

What I thought was an ortho problem, he thought was a neuromuscular

problem, so he ordered an MRI.

She had the MRI, the nurses managed to traumatize the hell

out of her when giving her the sedation by mouth. Thanks to them I

can no longer get her to take oral medication. The results were in

the next day, but I missed the Dr's call. The day after that I

listened to my voicemail and it was the pediatrician saying that " we

need to talk, I think you need to go back and see Dr. Moriarty

(Jill's neurosurgeon) I immediately knew it was bad news and began

to cry.

Turns out it could be worse but it is definitely not normal.

Had the appt with the neurosurgeon who confirmed the diagnosis, said

she basically had every symptom and set up surgery for Thursday the

24th of August. Yesterday, Jillian had to be put on Tylenol 3

because of her pain being so bad. Unfortunatley the Dr. got called

away to emergency surgery and I didn't get a lot of questions

answered by him. The MRI showed a " very " thick and fatty filum. I

was wondering if there are any parents or persons with this

condition that could answer a few questions:

1.)How long does the surgery generally take?

2.)Did your child or you have to stay in ICU?

3.) Did your child or you have to lay flat after surgery?

4.) How long was the hospital stay?

5.) Was there any complications?

6.) Will there be any recovery of strength in the legs and

7.) If any of you or your children had deformed feet, did it get

better after surgery or did it require treatment?

OMG, that was a novel and I apoligize, I am a bumbling mess right

now, I appreciate anything that can give me info. I am off to take

finals. Thanks again

Kari

[Guest guest]

I appreciate your response, it is especially helpful coming from someone that

has had Dr. Moriarty. I do have a couple of questions- Did either of your kids

have to stay overnight in the PICU? How long was the total hospital stay? ANd

how was their pain level after surgery? Do you feel that it was effectively

controlled? I know that they usually start kids off with a good narcotic pain

med then switch to by mouth Tylenol 3, my concern is that Jillian already takes

Tylenol 3, it hasnt been effective for her recently and by the time surgery

comes, she will likely be tolerate to it. By mouth medication in general has

been VERY hard to get down here, especially since the MRI. She will make herself

vomit after taking it. I just cant wait to get past all of this. We knew she was

delayed but we just didnt see this coming.

One more question- Is TCS considered a lifetime condition, or once you have

surgery do you longer have TCS?

Thanks for your help.

Fenley wrote:

hi kari, my name is susan and dr. moriarty did 2 of my 3 children's tc

release. one child doesn't have it. my 2 that do have it are tethered due to the

fatty filum. it is impt to remember that outcomes wll be different when tethered

due to different reasons. and even if tethered in the same way, outcomes could

still be different. i noticed that you already had good answers to most of your

questions. they all mimic my situations that i have encountered. i am so sorry

for your emotional pain, nothing hurts more than your child hurting. my children

didn't have different feet,but my youngest had weak knees. his surgery was last

september. it has taken almost a year, but i can now see some strength coming to

his knees. they don't buckle any more. he can run fast again. this was the case

when he first ran at 1, then he slowed down at 2. had surgery at 2 years and 11

months. dr. moriarty keeps his pts flat on their stomachs for 2 full days. how

old are your other

children? good luck, call dr. moriarty's office and make sure that the nurse

tells him about jillian's pain level, maybe he can move up her surgery. it is

about 2 1/2 weeks away. that is not that bad, but it's not tomorrow. and it's a

lot of nights in pain . i am sorry that your daughter was traumatized in mri

sedation. my first daughter was also. i was adamant about sedation for other two

and they don't remember a thing. my first daughter had her sedation at 3 and is

7 now and still talks about it. and won't take orange medicine unless i reassure

her that it is not mri medicine. she recently had another mri and did it w'out

sedation. they can give iv sedation and it works better and no horror. they

don't like to, because an anesthecist or anesthesiolgist has to stay in unit.

but, remember this for next time. also, you can give medicine yourself and not

traumatize her. dr. raju is the anesthesiologist to get for surgery, she does

not believe in trauma. my first daugher had

surgery w/outany prior meds, she walked to surgery w/ raju and got mask back

there. this was because raju and heather worked a deal for 1 1/2 hour. dr. raju

took heather around the room w/ her, and talked to her and calmed her down. when

it was time for surgery, she did not force her on the stretcher and did not

force versed. heather does not remember this, but remebers the trauma of the

prior mri, when she was actually two months younger. take care, let me know what

i can do to help. susan fenley.

New member- lots of questions

Hello,

My name is Kari and I am new to this group. I am 24 yrs old

and I am a married mother of three. I work as a pediatric psych

nurse here in Indiana. I joined this group because my youngest

daughter, Jillian was recently diagnosed with tethered cord.

Our saga started out when Jillian was diagnosed with

craniosynostosis in January, she had surgical correction in March

and pulled through beautifully. She has always been delayed in her

motor development but we always attributed it to the cranio. In

June Jillian was at the pediatrician I mentioned to him that I felt

there was something wrong with Jillians feet. When I stood her up

her arch was so high it didn't touch the floor and she could not

hold her feet in a neutral position, that's if I get her feet on the

ground, most of the time, she refused to bear weight. She was almost

12 months- not crawling, not standing, not pulling up and not taking

steps. And she had been tossing and turning, arching her back and

screaming at night, only get a max of 5 hours of sleep per night.

What I thought was an ortho problem, he thought was a neuromuscular

problem, so he ordered an MRI.

She had the MRI, the nurses managed to traumatize the hell

out of her when giving her the sedation by mouth. Thanks to them I

can no longer get her to take oral medication. The results were in

the next day, but I missed the Dr's call. The day after that I

listened to my voicemail and it was the pediatrician saying that " we

need to talk, I think you need to go back and see Dr. Moriarty

(Jill's neurosurgeon) I immediately knew it was bad news and began

to cry.

Turns out it could be worse but it is definitely not normal.

Had the appt with the neurosurgeon who confirmed the diagnosis, said

she basically had every symptom and set up surgery for Thursday the

24th of August. Yesterday, Jillian had to be put on Tylenol 3

because of her pain being so bad. Unfortunatley the Dr. got called

away to emergency surgery and I didn't get a lot of questions

answered by him. The MRI showed a " very " thick and fatty filum. I

was wondering if there are any parents or persons with this

condition that could answer a few questions:

1.)How long does the surgery generally take?

2.)Did your child or you have to stay in ICU?

3.) Did your child or you have to lay flat after surgery?

4.) How long was the hospital stay?

5.) Was there any complications?

6.) Will there be any recovery of strength in the legs and

7.) If any of you or your children had deformed feet, did it get

better after surgery or did it require treatment?

OMG, that was a novel and I apoligize, I am a bumbling mess right

now, I appreciate anything that can give me info. I am off to take

finals. Thanks again

Kari

[Guest guest]

Hi Kari, TCS is Tethered Cord SYNDROME, which means it is a collection of

symptoms due to a tethered cord.

For example, I still have tethered cord syndrome as I still have deformed

feet, I still have the dimple at the end of my spine, I still have a very

low conus (S2), but I no longer have a tethered cord. So therefore, I feel

yes, once you have surgery, if you still have signs of a tethered cord, yes

you still have tethered cord SYNDROME.

Hope this helps

Regards

Nina

Bristol, UK

--On 07 August 2006 12:40 -0700 Kari Wagner

wrote:

> I appreciate your response, it is especially helpful coming from someone

> that has had Dr. Moriarty. I do have a couple of questions- Did either of

> your kids have to stay overnight in the PICU? How long was the total

> hospital stay? ANd how was their pain level after surgery? Do you feel

> that it was effectively controlled? I know that they usually start kids

> off with a good narcotic pain med then switch to by mouth Tylenol 3, my

> concern is that Jillian already takes Tylenol 3, it hasnt been effective

> for her recently and by the time surgery comes, she will likely be

> tolerate to it. By mouth medication in general has been VERY hard to get

> down here, especially since the MRI. She will make herself vomit after

> taking it. I just cant wait to get past all of this. We knew she was

> delayed but we just didnt see this coming. One more question- Is TCS

> considered a lifetime condition, or once you have surgery do you longer

> have TCS?

> Thanks for your help.

>

> Fenley wrote:

> hi kari, my name is susan and dr. moriarty did 2 of my 3

> children's tc release. one child doesn't have it. my 2 that do have it

> are tethered due to the fatty filum. it is impt to remember that outcomes

> wll be different when tethered due to different reasons. and even if

> tethered in the same way, outcomes could still be different. i noticed

> that you already had good answers to most of your questions. they all

> mimic my situations that i have encountered. i am so sorry for your

> emotional pain, nothing hurts more than your child hurting. my children

> didn't have different feet,but my youngest had weak knees. his surgery

> was last september. it has taken almost a year, but i can now see some

> strength coming to his knees. they don't buckle any more. he can run fast

> again. this was the case when he first ran at 1, then he slowed down at

> 2. had surgery at 2 years and 11 months. dr. moriarty keeps his pts flat

> on their stomachs for 2 full days. how old are your other children? good

> luck, call dr. moriarty's office and make sure that the nurse tells him

> about jillian's pain level, maybe he can move up her surgery. it is about

> 2 1/2 weeks away. that is not that bad, but it's not tomorrow. and it's a

> lot of nights in pain . i am sorry that your daughter was traumatized in

> mri sedation. my first daughter was also. i was adamant about sedation

> for other two and they don't remember a thing. my first daughter had her

> sedation at 3 and is 7 now and still talks about it. and won't take

> orange medicine unless i reassure her that it is not mri medicine. she

> recently had another mri and did it w'out sedation. they can give iv

> sedation and it works better and no horror. they don't like to, because

> an anesthecist or anesthesiolgist has to stay in unit. but, remember this

> for next time. also, you can give medicine yourself and not traumatize

> her. dr. raju is the anesthesiologist to get for surgery, she does not

> believe in trauma. my first daugher had surgery w/outany prior meds, she

> walked to surgery w/ raju and got mask back there. this was because raju

> and heather worked a deal for 1 1/2 hour. dr. raju took heather around

> the room w/ her, and talked to her and calmed her down. when it was time

> for surgery, she did not force her on the stretcher and did not force

> versed. heather does not remember this, but remebers the trauma of the

> prior mri, when she was actually two months younger. take care, let me

> know what i can do to help. susan fenley. New member- lots of questions

>

> Hello,

> My name is Kari and I am new to this group. I am 24 yrs old

> and I am a married mother of three. I work as a pediatric psych

> nurse here in Indiana. I joined this group because my youngest

> daughter, Jillian was recently diagnosed with tethered cord.

> Our saga started out when Jillian was diagnosed with

> craniosynostosis in January, she had surgical correction in March

> and pulled through beautifully. She has always been delayed in her

> motor development but we always attributed it to the cranio. In

> June Jillian was at the pediatrician I mentioned to him that I felt

> there was something wrong with Jillians feet. When I stood her up

> her arch was so high it didn't touch the floor and she could not

> hold her feet in a neutral position, that's if I get her feet on the

> ground, most of the time, she refused to bear weight. She was almost

> 12 months- not crawling, not standing, not pulling up and not taking

> steps. And she had been tossing and turning, arching her back and

> screaming at night, only get a max of 5 hours of sleep per night.

> What I thought was an ortho problem, he thought was a neuromuscular

> problem, so he ordered an MRI.

> She had the MRI, the nurses managed to traumatize the hell

> out of her when giving her the sedation by mouth. Thanks to them I

> can no longer get her to take oral medication. The results were in

> the next day, but I missed the Dr's call. The day after that I

> listened to my voicemail and it was the pediatrician saying that " we

> need to talk, I think you need to go back and see Dr. Moriarty

> (Jill's neurosurgeon) I immediately knew it was bad news and began

> to cry.

> Turns out it could be worse but it is definitely not normal.

> Had the appt with the neurosurgeon who confirmed the diagnosis, said

> she basically had every symptom and set up surgery for Thursday the

> 24th of August. Yesterday, Jillian had to be put on Tylenol 3

> because of her pain being so bad. Unfortunatley the Dr. got called

> away to emergency surgery and I didn't get a lot of questions

> answered by him. The MRI showed a " very " thick and fatty filum. I

> was wondering if there are any parents or persons with this

> condition that could answer a few questions:

> 1.)How long does the surgery generally take?

> 2.)Did your child or you have to stay in ICU?

> 3.) Did your child or you have to lay flat after surgery?

> 4.) How long was the hospital stay?

> 5.) Was there any complications?

> 6.) Will there be any recovery of strength in the legs and

> 7.) If any of you or your children had deformed feet, did it get

> better after surgery or did it require treatment?

>

> OMG, that was a novel and I apoligize, I am a bumbling mess right

> now, I appreciate anything that can give me info. I am off to take

> finals. Thanks again

>

> Kari

>

>

[Guest guest]

hi kari, is jillian 14 months old? she is one year younger than chip was and 2

years younger than heather was at surgery. she is also in more pain than they

were. they did not stay in picu. however, i did refuse oral pain meds in the

hospital. i asked for iv the entire time and i kept track and asked 15 minutes

before each time was up. once chip had break through pain and i made them call

and get more pain meds. you have to take charge in a kind way and then you'll

get what you want. i know you know that, you are a psych nurse for pete's sake.

after getting home, heather refused all pain meds by mouth because of mri

trauma. chip took them for the first 24 - 36 hours then that was it. chip took

longer to recover, heather was running 5 days post op. i had beg, beg and get

out my physiology book( to explain her surgery) to get her to walk, not run.

as for tethered cord being a lifetime condition, yes, it is. surgery is not

always a cure all. sometimes it is. all cases are different, that is what is so

frustrating about tcs, all shades of grey, no black and white.. they can

re-tether due to scar tissue, (mine have not,yet.) and from what i have read,

all females w/ tcs should avoid the lithotomy position. something to keep in

mind when changing diapers. therefore they should have c-sections.(20-40 years

on down the road) both heather and chip would have many days of improvement post

op and some days of regression post op, after one year only good progress. susan

fenley. you may email me privately if you want to. i know that you are scared,

but if you could see my children running and swimming today, you would feel

better. take care,susan.

do any of your other children have symptoms? what are their ages?

From: Kari Wagner

To: tetheredspinalcord

Sent: Monday, August 07, 2006 3:40 PM

Subject: Re: New member- lots of questions

I appreciate your response, it is especially helpful coming from someone that

has had Dr. Moriarty. I do have a couple of questions- Did either of your kids

have to stay overnight in the PICU? How long was the total hospital stay? ANd

how was their pain level after surgery? Do you feel that it was effectively

controlled? I know that they usually start kids off with a good narcotic pain

med then switch to by mouth Tylenol 3, my concern is that Jillian already takes

Tylenol 3, it hasnt been effective for her recently and by the time surgery

comes, she will likely be tolerate to it. By mouth medication in general has

been VERY hard to get down here, especially since the MRI. She will make herself

vomit after taking it. I just cant wait to get past all of this. We knew she was

delayed but we just didnt see this coming.

One more question- Is TCS considered a lifetime condition, or once you have

surgery do you longer have TCS?

Thanks for your help.

Fenley wrote:

hi kari, my name is susan and dr. moriarty did 2 of my 3 children's tc

release. one child doesn't have it. my 2 that do have it are tethered due to the

fatty filum. it is impt to remember that outcomes wll be different when tethered

due to different reasons. and even if tethered in the same way, outcomes could

still be different. i noticed that you already had good answers to most of your

questions. they all mimic my situations that i have encountered. i am so sorry

for your emotional pain, nothing hurts more than your child hurting. my children

didn't have different feet,but my youngest had weak knees. his surgery was last

september. it has taken almost a year, but i can now see some strength coming to

his knees. they don't buckle any more. he can run fast again. this was the case

when he first ran at 1, then he slowed down at 2. had surgery at 2 years and 11

months. dr. moriarty keeps his pts flat on their stomachs for 2 full days. how

old are your other

children? good luck, call dr. moriarty's office and make sure that the nurse

tells him about jillian's pain level, maybe he can move up her surgery. it is

about 2 1/2 weeks away. that is not that bad, but it's not tomorrow. and it's a

lot of nights in pain . i am sorry that your daughter was traumatized in mri

sedation. my first daughter was also. i was adamant about sedation for other two

and they don't remember a thing. my first daughter had her sedation at 3 and is

7 now and still talks about it. and won't take orange medicine unless i reassure

her that it is not mri medicine. she recently had another mri and did it w'out

sedation. they can give iv sedation and it works better and no horror. they

don't like to, because an anesthecist or anesthesiolgist has to stay in unit.

but, remember this for next time. also, you can give medicine yourself and not

traumatize her. dr. raju is the anesthesiologist to get for surgery, she does

not believe in trauma. my first daugher had

surgery w/outany prior meds, she walked to surgery w/ raju and got mask back

there. this was because raju and heather worked a deal for 1 1/2 hour. dr. raju

took heather around the room w/ her, and talked to her and calmed her down. when

it was time for surgery, she did not force her on the stretcher and did not

force versed. heather does not remember this, but remebers the trauma of the

prior mri, when she was actually two months younger. take care, let me know what

i can do to help. susan fenley.

New member- lots of questions

Hello,

My name is Kari and I am new to this group. I am 24 yrs old

and I am a married mother of three. I work as a pediatric psych

nurse here in Indiana. I joined this group because my youngest

daughter, Jillian was recently diagnosed with tethered cord.

Our saga started out when Jillian was diagnosed with

craniosynostosis in January, she had surgical correction in March

and pulled through beautifully. She has always been delayed in her

motor development but we always attributed it to the cranio. In

June Jillian was at the pediatrician I mentioned to him that I felt

there was something wrong with Jillians feet. When I stood her up

her arch was so high it didn't touch the floor and she could not

hold her feet in a neutral position, that's if I get her feet on the

ground, most of the time, she refused to bear weight. She was almost

12 months- not crawling, not standing, not pulling up and not taking

steps. And she had been tossing and turning, arching her back and

screaming at night, only get a max of 5 hours of sleep per night.

What I thought was an ortho problem, he thought was a neuromuscular

problem, so he ordered an MRI.

She had the MRI, the nurses managed to traumatize the hell

out of her when giving her the sedation by mouth. Thanks to them I

can no longer get her to take oral medication. The results were in

the next day, but I missed the Dr's call. The day after that I

listened to my voicemail and it was the pediatrician saying that " we

need to talk, I think you need to go back and see Dr. Moriarty

(Jill's neurosurgeon) I immediately knew it was bad news and began

to cry.

Turns out it could be worse but it is definitely not normal.

Had the appt with the neurosurgeon who confirmed the diagnosis, said

she basically had every symptom and set up surgery for Thursday the

24th of August. Yesterday, Jillian had to be put on Tylenol 3

because of her pain being so bad. Unfortunatley the Dr. got called

away to emergency surgery and I didn't get a lot of questions

answered by him. The MRI showed a " very " thick and fatty filum. I

was wondering if there are any parents or persons with this

condition that could answer a few questions:

1.)How long does the surgery generally take?

2.)Did your child or you have to stay in ICU?

3.) Did your child or you have to lay flat after surgery?

4.) How long was the hospital stay?

5.) Was there any complications?

6.) Will there be any recovery of strength in the legs and

7.) If any of you or your children had deformed feet, did it get

better after surgery or did it require treatment?

OMG, that was a novel and I apoligize, I am a bumbling mess right

now, I appreciate anything that can give me info. I am off to take

finals. Thanks again

Kari

[Guest guest]

Hi

I have not posted in a very long time. My daughter had this surgery in February.

She also had a fatty filum and she also bone spur and her cord was tethered to

both. SHe was born with club feet. One was surgically corrected in the country

she born and the other was corrected with massage in that country, (Georgia) She

hasand spina bifida occulta and scoliosis.

Her surgey lasted about four hours - the ordeal was close to eight. She was in

ICU for two nights. SHe was in a great deal of pain for about 30 hours.

Because her cord was tethered to the fatty tumor she may need to have the

surgery again as it is likely the filum will grow back. (sounds like this is

the case with your daughter as well)

Having said all that, the surgery was a huge success, her bladder control is

perfect following the surgery. She is STRONGER -oh my God, so much stronger. She

runs and jumps just like any other kid. This is a surgery to improve her

condtion - just remember that - and it worked for my daughter!!!

I do not think the surgey will correct the feet. It may or may not make her legs

stronger.

If she is in pain and losing feeling in her legs I would push to have the surgey

done NOW as she may not regain those feelings. I raised a huge stink at my

Children's hospital to get it done in two weeks after diagnosis as my daughter

was losing bladder control.

Good luck and believe all will be better,

Pam