My son has Lipomyelomeningocele and a TSC

June 5, 2007

Hello everyone, I am just posting to introduce myself and my son

Brody. Brody is 2 weeks old and was diagnosed with a TSC at 32 weeks

gestation. At my 20 week ultrasound they could not get a good picture

of his spine, and they sent me to the perinatologist for a high

resolution u/s. We went to the perinatologist at 24 weeks and they

found his defect (spina bifida). I was then sent for an MRI at 32

weeks where they were able to see the tethered cord. They then sent

me to a Pediatric Neurosurgeon who was unable to tell us the extent

of Brody's defect. When Brody was born, we were very happy to see

that his defect was closed. He had to go to the NICU and for a bunch

of tests, but he came home after only 3 days in the hospital.

We were given a diagnosis of lipomyelomeningocele with a tethered

spinal cord. He has a large bump on his lower back right above his

but crease, and a very crooked and shallow but crease. So far he does

not show any signs of nerve damage, but it is a waiting game right

now. He is scheduled to be evaluated by the Neurosurgeon on July 9th,

and we will schedule his surgery then. They told me that they would

do surgery between 4 and 6 months of age.

I am hoping to get to know everyone in the group and exchange

information. It will be nice to talk to people who are or have gone

through the same thing. Thanks in advance!!

June 6, 2007

Hi ,

My daughter was born Sept 11, 2006 with LMC and TSC as well and we

have already had surgery and she is doing fine. Her " bump " was also

very low on her back and rearranged her bum crease. It was more off

to the left side.

Her surgery was Jan 30, 2007 and we were home by Feb 4. Her cord was

released as well as the lipoma was removed. Her scar is visible but

is diminishing more and more every week. We did have to cath her for

about 10 days after surgery as her bladder was in shock but she

recovered nicely.

If you need more details on our experience, please let me know and I

would be happy to share them.

Lee

>

> Hello everyone, I am just posting to introduce myself and my son

> Brody. Brody is 2 weeks old and was diagnosed with a TSC at 32

weeks

> gestation. At my 20 week ultrasound they could not get a good

picture

> of his spine, and they sent me to the perinatologist for a high

> resolution u/s. We went to the perinatologist at 24 weeks and they

> found his defect (spina bifida). I was then sent for an MRI at 32

> weeks where they were able to see the tethered cord. They then sent

> me to a Pediatric Neurosurgeon who was unable to tell us the extent

> of Brody's defect. When Brody was born, we were very happy to see

> that his defect was closed. He had to go to the NICU and for a

bunch

> of tests, but he came home after only 3 days in the hospital.

>

> We were given a diagnosis of lipomyelomeningocele with a

tethered

> spinal cord. He has a large bump on his lower back right above his

> but crease, and a very crooked and shallow but crease. So far he

does

> not show any signs of nerve damage, but it is a waiting game right

> now. He is scheduled to be evaluated by the Neurosurgeon on July

9th,

> and we will schedule his surgery then. They told me that they would

> do surgery between 4 and 6 months of age.

>

> I am hoping to get to know everyone in the group and exchange

> information. It will be nice to talk to people who are or have gone

> through the same thing. Thanks in advance!!

>

June 6, 2007

Our daughter Emma was born on November 30th, 2006 and surprised us

with LMC and TSC...fatty, reddened hemangioma type bump, crooked

butt crack, etc...very similar to both new member's babies. Her

defect is at L2-L3, but she has shown signs of nerve transmition as

far as L5. I had an aunt who was born with an open case of SB and

hydrocephalus, so at our 20 week ultrasound, I asked the tech to pay

close attention to the baby's spine. No defect was noted, and my OB

even looked for reassurance (and again after Emma was born), without

any problems noted.

At our NSG appt, Emma was 6 days old and he said that he wasn't sure

she'd walk. He told us that you need your hips to walk, your knees

to have a steady, coordinated gait, and your ankles to run. (Emma's

got knees and some ankle...I have 92 year old aunt who says, " heck,

I don't think I've ever run in my life, so what's the big

deal " ...lol!) We got a second opinion at Gillette Children's

Specialty healthcare in St. (We live in Duluth MN) and heard

much of the same, but more reassuring. When I asked the NSg, " How

many procedures, untetherings have you done on a LMC, like Emma's? "

he told me, " Last week. " I knew at that moment, that this was the

man I was going to entrust my baby's life in. They've been mothing

but wonderful to us.

Emma had surgery when she was 2 months old. During those 6 weeks,

we noticed that her left foot began to turn inward and downward a

bit, and her toes got very tight (Think fishing rod when you pull on

the line. This is what her spinal cord was doing when she was

tethered). Because of this, Emma needs therapy twice weekly with a

PT, and up to 4 times a day at home and wears a prosthesis to keep

her foot more neutral. She's making great strides and at 6 months

is almost sitting independently. She also had uro studies, with no

hydro, no reflux, and we finally see a specialist this friday.

We'll go back to Gillette next week to see her ortho doc, too.

The recovery from surgery was OK...long, but OK. They have to stay

flat for 48-72 hours. Emma was pretty sleepy the whole time,

though.

I too, as a nurse myself was very bitter about our dilema. I took

such careof myself and thought, " Oh, to hell with folic acid

anyways... " , until I read Seatle Children's website which told me

what others have also told you: it's fluke, and there's not a thing

that even more folic acid would have done.

Visit Emma's website if you'd like.

www.caringbridge.org/visit/emmamcdonald

We posted notes throughout her hospital and surgical stay. Email us

directly if you'd like, and we're open to talking on the phone, too.

I am amazed every day at how many of us there are who have sweet

little ones with this problem.

" Welcome to Holland. " It's a great place!

(If you haven't read that story, " google " it...it's amazing)

and Troy Mc

troyjen1@...

>

> Hello everyone, I am just posting to introduce myself and my

son

> Brody. Brody is 2 weeks old and was diagnosed with a TSC at 32

weeks

> gestation. At my 20 week ultrasound they could not get a good

picture

> of his spine, and they sent me to the perinatologist for a high

> resolution u/s. We went to the perinatologist at 24 weeks and they

> found his defect (spina bifida). I was then sent for an MRI at 32

> weeks where they were able to see the tethered cord. They then

sent

> me to a Pediatric Neurosurgeon who was unable to tell us the

extent

> of Brody's defect. When Brody was born, we were very happy to see

> that his defect was closed. He had to go to the NICU and for a

bunch

> of tests, but he came home after only 3 days in the hospital.

>

> We were given a diagnosis of lipomyelomeningocele with a

tethered

> spinal cord. He has a large bump on his lower back right above his

> but crease, and a very crooked and shallow but crease. So far he

does

> not show any signs of nerve damage, but it is a waiting game right

> now. He is scheduled to be evaluated by the Neurosurgeon on July

9th,

> and we will schedule his surgery then. They told me that they

would

> do surgery between 4 and 6 months of age.

>

> I am hoping to get to know everyone in the group and exchange

> information. It will be nice to talk to people who are or have

gone

> through the same thing. Thanks in advance!!

>

June 6, 2007

I am just wondering about the actual surgery. How long did it take??

What restrictions were put on your daughter?? What was your part in the

recovery (ie bandages, PT, etc)? I have a 2 year old daughter as well

as Brody and I am wondering how much time I will have to devote to

Brody's care. Thanks again!!

June 6, 2007

Leita's surgery took about 6 hours from the time she was taken in to

surgery to the time she was brought to the children's ward. For

recovery - we are blessed to be close to a hospital that encourages

parents to partake in their kids care. There were only butterfly

bandages on her opening that eventually dissolved off after about a

week. We were encouraged to get her moving in less than 36 hours as

this helped the surgeon see if there was a leak that they might have

to fix.

I actually stayed in the hospital with my daughter during her whole

recovery. That way I could still feed her and change her as I would

do if we were at home and also monitor her progress. They monitor how

much she ate, how much she peed and pooped and made sure that she was

functioning before sending us home. For restrictions, the first day

she layed flat on her back with pain medication. Day two she was only

on tylenol for pain and intravenous saline for fluids. By day 3 she

was taken off her IV and was only medicated with tylenol. Leita

developed a urinary tract infection as we did not discover that she

was retaining until we were released from the hospital. 10 days of

meds and cathing her she was back to pre op functioning in all regards.

I suggest you enlist some help to take care of your daughter during

Brody's surgery and first week of recovery. I know that I didn't want

to think of anything else. Once we were home, things basically went

back to normal.

Lee

>

> I am just wondering about the actual surgery. How long did it take??

> What restrictions were put on your daughter?? What was your part in

the

> recovery (ie bandages, PT, etc)? I have a 2 year old daughter as

well

> as Brody and I am wondering how much time I will have to devote to

> Brody's care. Thanks again!!

>

June 13, 2007

- My son had tethered cord surgery at Bostons

Children's Hospital about 3 weeks ago. The surgery

lasted 5 hours and was successful for complete

untethering. The MRI also showed that the Lipoma was

completely removed. He was inpatient about 5 days.

Be prepared to be their around the clock. At least

where we went we were expected to do all of his

caretaking, feeding, soothing, diaper changes for the

most part 24 hours a day. One parent could stay after

10pm. We were lucky to have friends and family come

help us out so we could grab some sleep. The first

2-3 days are pretty hard. Our son was in a lot of

pain. He is only 5 months old and didn't understand

what was happening to him. I will say to you ...it

gets better. Its been 3 weeks since the surgery and

he is 100% back to normal. We only needed to keep him

quiet for about a week after the surgery. We gave him

Tylenol for the pain once we were home about every 4

hours. I took 2 weeks off from work to care for him

after surgery. The scar is healing very nicely. Like

I said.. once you get through the hospital part, it

gets much better. Good luck to you and let me know if

you have any more questions.

--- angelstar_916 wrote:

> I am just wondering about the actual surgery. How

> long did it take??

> What restrictions were put on your daughter?? What

> was your part in the

> recovery (ie bandages, PT, etc)? I have a 2 year old

> daughter as well

> as Brody and I am wondering how much time I will

> have to devote to

> Brody's care. Thanks again!!

>

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June 14, 2007

--

I am just appalled that the hospital expected the parents to handle all all

your sons post-op care. While I couldn't imagine it, not all parents spend

24/7 at the hospital after their child has surgery -- they can't for work

reasons or whatever. When a child -- or anyone is in-patient in the

hospital, it is their job to care for the patient. IMO, they were pawning

off some of their responsibilities on you b/c they could -- you were there

and they probably saw that you didn't mind. The family should not have to

focus on anything other than emotionally supporting their family member.

That being said, I have never stayed overnight in the hospital alone (save

for maybe the last 2 days of my inpatient stay or so)-- even though I had

all my surgeries as an adult. When my dad had the surgeries on his foot, he

did not stay alone until a few days before discharge. IMO, no one should

let their family member stay alone in the hospital until they are fully

aware, functional, etc. After my second surgery, I had a lumbar drain, and

there was a BIG note that said the head of my bed was to remain flat. I was

still kept pretty well sedated at this point (conscious sedation). A RN

came in my room and started to raise the head of my bed. Mom promptly

questioned her and pointed out the note. The RN responded that she " had " to

raise the HOB in order for me to take my meds or I would choke on them. Mom

told the RN that I had been taking my meds fine for the previous 2 days with

the HOB flat. Mom sent that RN out of the room and asked for the charge --

that RN turned out to be an agency RN with NO experience in neuro. Over the

course of my hospitalizations, mom and/or dad have caught many, many

errors. Another example -- I have a latex allergy and despite signs on my

door and above my bed, just about every single lab employee and half the RNs

still tried to use latex on me. Mom and dad quickly questioned anyone

coming in the room to make sure they were latex free. Mom and dad question

any med I am administered --- they know my allergies -- to make sure they

don't try to admin a med that I am allergic to. There is a parent in my

room 24/7 until I am fully awake, cognisant and able to make medical

decisions for myself - competently. When my dad was IP after one of his

surgeries, mom came home from the hosptial complainig that dad was not like

himself -- out of it. She was logging names of everyone who went in/out of

the room, meds administered, vital sign results. She pointed out that his

pulse was in the 40s and his blood pressure was sky high. When she asked

the RN about it, the RN said it was okay and that dad was fine. I went

there and raised hell -- upon review of his chart, the RNs had been chartin

that dad was A & Ox4 (alert and oriented - person, place, time, event) and the

questions they asked him was, " do you know who you are? Do you know where

you are? HUH? that is BASIC patient assesment. Just b/c the person

answers " yes " doesn't mean that they are thinkng the real answer. When I

got there, dad thought he was at an entirely different hospital (the one up

by his house that he had been transferred from), had no idea the date -- he

was WAY out of it. It took a lot to get him back on track. I nearly had

him transferred out by that evening.

So, IMO - anytime you have a family member in the hospital -- there should

be a family member with them 24/7 with a wire bound notebook logging every

person that goes in/out of the room, what they did, what meds they

administered, what the results of the vital sign checks were -- everything.

It was my experience that when the staff knows that there is a real log of

the patient care, and who did it -- nothing they can fudge in the charts,

they pay attention real quick (and I used to work in the patient care arena,

so I'm not biased or trying to put undue burden on the poor, overworked

healthcare staff). This isn't to say that the family members with me

didn't assume a lot of care that was " technically " the responsibility of the

hospital staff, but the staff didn't automatically assume or instruct that

it was my parents responsibility to do the things.

I'm so happy to hear that your son is doing well. Kids bounce back so much

quicker than adults, its amazing! After my first surgery, a friend of mine

who had a chemo port removed reccommended " Mederma " to help thin and fade

my back scar. The stuff wasn't as popular as it is now, but that stuff

worked like a charm! My scar was so thin and could hardly be seen - the

neurosurg that did the surgery and the one that did my subsequent surgeries

said they had never seen a scar heal so well and disappear. I think they

make Medera for kids -- check into that. I think you put it on twice a day

(at least the adult stuff you do). Also, even though it is summer, make

sure that the scar does not get any sun for 1 year. The skin that forms the

scar is new and delicate like a newborn baby -- so and burn or excessive sun

will make the scar more visible. I followed those directions from my

neurosurg, and the scar from my first surgery was invisible in 6 mos or less

(I gave up after my 3rd surgery, figuring there wasn't much I could do since

they had just cut through the exact same scar for the third time - LOL. but

it still doesn't look that bad -- used the mederma, although not as

religiously, and waited a year before getting sun on it).

I wish your son the best.

jenn

>

> - My son had tethered cord surgery at Bostons

> Children's Hospital about 3 weeks ago. <<SNIP>>

>

He was inpatient about 5 days.

> Be prepared to be their around the clock. At least

> where we went we were expected to do all of his

> caretaking, feeding, soothing, diaper changes for the

> most part 24 hours a day. One parent could stay after

> 10pm. We were lucky to have friends and family come

> help us out so we could grab some sleep. The first

> 2-3 days are pretty hard. Our son was in a lot of

> pain. He is only 5 months old and didn't understand

> what was happening to him. I will say to you ...it

> gets better. Its been 3 weeks since the surgery and

> he is 100% back to normal. We only needed to keep him

> quiet for about a week after the surgery. We gave him

> Tylenol for the pain once we were home about every 4

> hours. I took 2 weeks off from work to care for him

> after surgery. The scar is healing very nicely. Like

> I said.. once you get through the hospital part, it

> gets much better. Good luck to you and let me know if

> you have any more questions.

> Recent Activity

>

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June 14, 2007

My daughter was 4 1/2 months old when she had her first surgery. No way in

hell was I leaving her alone! The only time I left her side was to take a

shower and to go to the cafeteria and get food. In fact the nurses wanted

me there! I was/am my childs protector and advocate. She couldn't tell

them if she was in pain. But I as her Mama could tell when something was

wrong. So, they incouraged me to be there.

Now as far as her care goes. In the beginning the nurses changed the

bandages and did the cathing. But as it went on (we were there 6 days the

first surgery...home for 7 days and back in the hospital for another surgery

and 7 more days) I did more and more of her care. For one they had to teach

us how to cath her. They also had to show us how to hook her meds up to her

PIC line. I also changed her pad underneath her ( no diaper because of

iinfection in he incision). Since I was breastfeeding, I had to be there to

nurse her.

So thats our experience. Also we were in a Childrens Hospital if that makes

any difference.

Anne

Mama to Conner and le

----Original Message Follows----

Reply-To: tetheredspinalcord

To: tetheredspinalcord

Subject: Re: Re: My son has Lipomyelomeningocele and a TSC

Date: Thu, 14 Jun 2007 01:52:42 -0400