Re: baby girl has lipomyelomeningocele

[Guest guest]

Hi there! I was in your shoes about 18 months ago. My son was born

with LMC and we had the surgery done just before he was 3 months old.

He's now 18 months old and running all over the place

www.caringbridge.org/visit/ethanspage

>

> Hi, Im new here and I decided to join to get some information. My

> daughter, whom is now 2 months was diagnosed with LMMC and tethered

> cord a day after she was born. We go tomorrow to get her 2nd MRI at

> the Riley hospital for children. I would just like to know if you guys

> know of anyone this young that has had the surgery? How invasive it

> is? How long does it take to heal? and if repeat surgeries are

> the " norm. " I understand everyone is different and every case is

> different. But Im just really lost about everything... not to mention

> stressed!

>

[Guest guest]

In a message dated 11/11/2008 3:10:52 P.M. Eastern Standard Time,

nunubrownie@... writes:

Somedays I just break down and cry because I dont want her to have to go

through the pain of surgery and the possible limitations growing up. I just

want her to be able to chase the dog in the backyard, climb up a tree into her

clubhouse, ride her bike, stay the night with her friends. I want her to

enjoy all the things I did growing up and Im so scared shes not going to get to

More than likely, your daughter will have no problem doing all those things!

My son was born with multiple birth defects, a fatty filum tethered

cord amongst them. He has a leg length discrepancy, clubfoot and an overall

size difference on his left leg, and wears an AFO and shoelift to compensate

and help him with his gait. He has had about 16 surgeries or so in his eight

years, and he doesn't stress them. Although he only actually remembers about

2 or 3 of them. With babies, they heal SO incredibly fast and aren't afraid

of the pain like older children and adults are, so they really focus more on

what they want to DO rather than the pain from the surgery. They are much

more interested in playing with their toys than being upset. had five

surgeries his first year, and while the first day was never fun, after that he

was back to himself in a day or two, depending on what kind of surgery it

was. does have limitations on contact sports, more from his other issues

(single kidney, spinal fusion with rods, leg issues) than his TC and he is

slower than his friends and has less endurance, but he can do all those things

you wish for your daughter, if in his own way. Well, maybe not climb up

into the tree, but you can build stairs if you really wanted the treehouse

experience and she couldn't do it.

For him, this IS normal, and he approaches it that way, and takes joy in his

life and your daughter will too! If challenges arise, you and your medical

team will be there to address them, and our options for treatment get better

all the time.

Connie

Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

Anorectal malformations support - The Pull-Thru Network

_http://www.pullthrunetwork.org/index.php_

(http://www.pullthrunetwork.org/index.php)

S. Jersey

**************AOL Search: Your one stop for directions, recipes and all other

Holiday needs. Search Now.

(http://pr.atwola.com/promoclk/100000075x1212792382x1200798498/aol?redir=http://\

searchblog.aol.com/2008/11/04/happy-holidays-from

-aol-search/?ncid=emlcntussear00000001)

[Guest guest]

Lynsey:

I know where you are coming from and exactly how you feel. 26 years ago my

daughter was born with a lipomyelomeningocele. At birth it appeared she had a

third cheek on her buttocks, at the base of the spine. She was seen two hours

after birth by a neurosurgeon who did xrays, checked for bowel and/or bladder

problems, watched her for two days for signs of hydrocephalus. He finally sent

us home with a diagnosis of a fatty growth which could be removed whenever we

wished , but he advised waiting until she was through puberty. He asked to see

her again in a year.

A year later he asked us to get a cat scan for confirmation of what he saw in

xrays. After viewing the scan he gave us the same diagnosis and said to come

back only if she was having trouble walking or developed bowel or bladder

problems. He said when she was 15 or 16 to call him and he would refer us to a

plastic surgeon to take care of her " bump. "

When Emmy was 17 months old, my husbands brother (a family practice doctor)asked

that we get a second opinion from a pediatric neurosurgeon he knew in Ann Arbor,

MI. We went to see her and she had already seen the xrays and scan results when

we got there. It was then that we first heard about lipomyelomeningoceles. We

were in shock. She said her spine was tethered to the fatty growth and that we

needed to do surgery immediately. A week later, Emmy underwent a 9 hour surgery

at Mott's Children's Hospital. After it was over, Dr. Venes explained that if

her condition had gone untreated she would have been paralyzed by the age of 4

or 5. Emmy was the first child they did a laser procedure on that wasn't

already paralyzed. They asked us to keep her laying down on her side for two

weeks. That didn't happen, she was walking before she left the hospital. She

had no complications.

We went to see Dr. Venes yearly after that until she left Ann Arbor, and the saw

Dr. Marosek (sorry if I spelled it wrong) until she was 18. The only side

effect that she seems to have is pain in her feet if she spends too much time

sitting or standing. While in college she went to see another neurosurgeon in

South Bend who does a Spina Bifada clinic. He found no problems with her and

said it was an almost perfect outcome. Nothing can be done for her foot pain,

which was probably caused by a nerve being nicked during her surgery or damaged

at some other time. He even okay-ed her for military service if she wanted.

Emmy is a healthy, happy 26 year old doctor today. She is completing her first

year of residency at Memorial Hospital in South Bend, Indiana. Her only

limitations are not being able to compete in contact sports and she has been

told that running and jogging are not a good idea for her. She is extremely

active, skiing, dancing, tennis and tae bo.

I hope this helped relieve some of your fears. It makes you see that this

doesn't have to be a dire diagnosis. When I became pregnant when Emmy was

three, I panicked, sure that the new baby would also have this condition. I

called Dr. Venes, she responded, " if the new little one has a

lipomyelomeningocele, you bring her to me and we'll fix her up, no problem. "

If you have any questions, feel free to ask. It's been a long time, but Emmy

keeps up on the latest advances and I can get answers from her. I will keep

your family in my prayers.

Marty

_____________________________________________________________

Click here for free search of religious schools located near you.

http://thirdpartyoffers.juno.com/TGL2111/fc/Ioyw6iigjVnHXQ2hCSWOH3VZGwe5zxTcuvIA\

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[Guest guest]

Marty, 

Thank you for sharing your amazing story!  As our daughter still waits for us in

China, and I don't know how accurate her medical reports are, I thank you for

giving me hope today.

sherri

Our Family Is Growing! Our Joy is Doubled!

www.camimei.blogspot.com 

adopted 8-12-07, Xiajiang, Jiangxi, PRC

www.letitbechina.blogspot.com 

LOI:   8 -06-2008

PA:    8-18-2008

DTC: 10-23-2008

_________________________

Dh:  Mark, married 24 years

DD:  23yo

DS:  18yo

DD:  14yo

Subject: Re: baby girl has lipomyelomeningocele

To: tetheredspinalcord

Date: Tuesday, November 11, 2008, 1:19 PM

Lynsey:

I know where you are coming from and exactly how you feel. 26 years ago my

daughter was born with a lipomyelomeningocel e. At birth it appeared she had a

third cheek on her buttocks, at the base of the spine. She was seen two hours

after birth by a neurosurgeon who did xrays, checked for bowel and/or bladder

problems, watched her for two days for signs of hydrocephalus. He finally sent

us home with a diagnosis of a fatty growth which could be removed whenever we

wished , but he advised waiting until she was through puberty. He asked to see

her again in a year.

A year later he asked us to get a cat scan for confirmation of what he saw in

xrays. After viewing the scan he gave us the same diagnosis and said to come

back only if she was having trouble walking or developed bowel or bladder

problems. He said when she was 15 or 16 to call him and he would refer us to a

plastic surgeon to take care of her " bump. "

When Emmy was 17 months old, my husbands brother (a family practice doctor)asked

that we get a second opinion from a pediatric neurosurgeon he knew in Ann Arbor,

MI. We went to see her and she had already seen the xrays and scan results when

we got there. It was then that we first heard about lipomyelomeningocel es. We

were in shock. She said her spine was tethered to the fatty growth and that we

needed to do surgery immediately. A week later, Emmy underwent a 9 hour surgery

at Mott's Children's Hospital. After it was over, Dr. Venes explained that if

her condition had gone untreated she would have been paralyzed by the age of 4

or 5. Emmy was the first child they did a laser procedure on that wasn't

already paralyzed. They asked us to keep her laying down on her side for two

weeks. That didn't happen, she was walking before she left the hospital. She

had no complications.

We went to see Dr. Venes yearly after that until she left Ann Arbor, and the saw

Dr. Marosek (sorry if I spelled it wrong) until she was 18. The only side

effect that she seems to have is pain in her feet if she spends too much time

sitting or standing. While in college she went to see another neurosurgeon in

South Bend who does a Spina Bifada clinic. He found no problems with her and

said it was an almost perfect outcome. Nothing can be done for her foot pain,

which was probably caused by a nerve being nicked during her surgery or damaged

at some other time. He even okay-ed her for military service if she wanted.

Emmy is a healthy, happy 26 year old doctor today. She is completing her first

year of residency at Memorial Hospital in South Bend, Indiana. Her only

limitations are not being able to compete in contact sports and she has been

told that running and jogging are not a good idea for her. She is extremely

active, skiing, dancing, tennis and tae bo.

I hope this helped relieve some of your fears. It makes you see that this

doesn't have to be a dire diagnosis. When I became pregnant when Emmy was

three, I panicked, sure that the new baby would also have this condition. I

called Dr. Venes, she responded, " if the new little one has a

lipomyelomeningocel e, you bring her to me and we'll fix her up, no problem. "

If you have any questions, feel free to ask. It's been a long time, but Emmy

keeps up on the latest advances and I can get answers from her. I will keep

your family in my prayers.

Marty

____________ _________ _________ _________ _________ _________ _

Click here for free search of religious schools located near you.

http://thirdpartyof fers.juno. com/TGL2111/ fc/Ioyw6iigjVnHX Q2hCSWOH3VZGwe5z

xTcuvIAR4fC18pgI qwoxQLSO2/ ?count=123456789 0

[Guest guest]

Thank you for your reply.  Your message definately relieved some of my worries!

I was really relieved when you told me she was a DOCTOR!! =)  I bet you are

proud.  Its also odd that she is in South Bend.  I too am from Indiana. 

ville, she probably knows where it is at.  But we are talking Adelyn, my

daughter, to Riley in Indianapolis.  Her Neurologist is Dr.Ackraman, she is a

super nice lady and explains everything so well.  We meet with her again

tomorrow to schedule the surgery, for which  the are assuming will be around

Christmas.  Before the consult tho they will be giving her another MRI just to

knw what shes going in to do.  Riley is a great hospital and I am putting all of

my faith into this doctor.  I know things will be fine, its just hard to cope

with.  I have a great support system, great friends and a wonderful family, but

its still hard. Especially when people dont know what I am going through as her

mother.  Thats why I

sought out people that have been through this before.  How did you handle it? 

Somedays I just break down and cry because I dont want her to have to go through

the pain of surgery and the possible limitations growing up.  I just want her to

be able to chase the dog in the backyard, climb up a tree into her clubhouse,

ride her bike, stay the night with her friends.  I want her to enjoy all the

things I did growing up and Im so scared shes not going to get to. 

But I am thankful that this condition is not life threatening.  The day after

she was born they lifeflighted her to Riley, probably the hardest thing Ive ever

had to experience.  Up there, there are so many babies with life threatening

conditions... heart problems, cancer.  Some of them are not going to make it. 

And I had to stand back and take a look at myself sobbing like a baby, and slap

myself into a reality check that hey, this condition isnt that bad- it could be

far worse.  And as awful as it sounds it helped me get a grasp on it and kinda

cope with it. I know god will never give anyone more then they can handle... but

he sure loves to test your limits sometimes.  This is emotionally draining me.

I would love to stay in contact with you and kind of vent my fears, and angers,

and just know that you have been through this too.  And you know exactly how I

am feeling.  Im a 25 year old first time mother. 

Subject: Re: baby girl has lipomyelomeningocele

To: tetheredspinalcord

Date: Tuesday, November 11, 2008, 1:19 PM

Lynsey:

I know where you are coming from and exactly how you feel. 26 years ago my

daughter was born with a lipomyelomeningocel e. At birth it appeared she had a

third cheek on her buttocks, at the base of the spine. She was seen two hours

after birth by a neurosurgeon who did xrays, checked for bowel and/or bladder

problems, watched her for two days for signs of hydrocephalus. He finally sent

us home with a diagnosis of a fatty growth which could be removed whenever we

wished , but he advised waiting until she was through puberty. He asked to see

her again in a year.

A year later he asked us to get a cat scan for confirmation of what he saw in

xrays. After viewing the scan he gave us the same diagnosis and said to come

back only if she was having trouble walking or developed bowel or bladder

problems. He said when she was 15 or 16 to call him and he would refer us to a

plastic surgeon to take care of her " bump. "

When Emmy was 17 months old, my husbands brother (a family practice doctor)asked

that we get a second opinion from a pediatric neurosurgeon he knew in Ann Arbor,

MI. We went to see her and she had already seen the xrays and scan results when

we got there. It was then that we first heard about lipomyelomeningocel es. We

were in shock. She said her spine was tethered to the fatty growth and that we

needed to do surgery immediately. A week later, Emmy underwent a 9 hour surgery

at Mott's Children's Hospital. After it was over, Dr. Venes explained that if

her condition had gone untreated she would have been paralyzed by the age of 4

or 5. Emmy was the first child they did a laser procedure on that wasn't already

paralyzed. They asked us to keep her laying down on her side for two weeks. That

didn't happen, she was walking before she left the hospital. She had no

complications.

We went to see Dr. Venes yearly after that until she left Ann Arbor, and the saw

Dr. Marosek (sorry if I spelled it wrong) until she was 18. The only side

effect that she seems to have is pain in her feet if she spends too much time

sitting or standing. While in college she went to see another neurosurgeon in

South Bend who does a Spina Bifada clinic. He found no problems with her and

said it was an almost perfect outcome. Nothing can be done for her foot pain,

which was probably caused by a nerve being nicked during her surgery or damaged

at some other time. He even okay-ed her for military service if she wanted.

Emmy is a healthy, happy 26 year old doctor today. She is completing her first

year of residency at Memorial Hospital in South Bend, Indiana. Her only

limitations are not being able to compete in contact sports and she has been

told that running and jogging are not a good idea for her. She is extremely

active, skiing, dancing, tennis and tae bo.

I hope this helped relieve some of your fears. It makes you see that this

doesn't have to be a dire diagnosis. When I became pregnant when Emmy was three,

I panicked, sure that the new baby would also have this condition. I called Dr.

Venes, she responded, " if the new little one has a lipomyelomeningocel e, you

bring her to me and we'll fix her up, no problem. "

If you have any questions, feel free to ask. It's been a long time, but Emmy

keeps up on the latest advances and I can get answers from her. I will keep your

family in my prayers.

Marty

____________ _________ _________ _________ _________ _________ _

Click here for free search of religious schools located near you.

http://thirdpartyof fers.juno. com/TGL2111/ fc/Ioyw6iigjVnHX Q2hCSWOH3VZGwe5z

xTcuvIAR4fC18pgI qwoxQLSO2/ ?count=123456789 0

[Guest guest]

Hi Lynsey,

I was also a 25 year old first time mother when my oldest son was diagnosed with

lipomyelomeningocele. He was not diagnosed until he was 2yrs old after I moved

from CA to FL and asked my sons new ped why he had a smaill dimple on his

behind. Right away he called a nurse in and scheduled him for an MRI the next

day and within two weeks he had his first surgery. I certainly know the fear of

uncertainty of things now and things to come. I am happy to inform you that my

son is now six and is doing wonderful. You would never even know he had a

problem unless we told you. Unfortunately he was one of the kids that had to

have a second surgery a year later but he did well as kids bounce back very

quickly. Also, I have another son who is now 4 yrs and he has no problems at

all. Don't feel bad about crying and feeling like you can't cope all the time, I

still have days where I get a little anxiety over his future and how it will

turn out. I even cry too after 6

years. So if you need anyone, you have picked the right place, we are all here

to let you vent all of your fears and frustrations as we have been in a position

like yours and know how you feel. I'm sorry you have to be a part of this group

but they are all wonderful and will help you through this.

Chrisitne

From: martysmithjuno (DOT) com <martysmithjuno (DOT) com>

Subject: Re: baby girl has lipomyelomeningocel e

To: tetheredspinalcord@ yahoogroups. com

Date: Tuesday, November 11, 2008, 1:19 PM

Lynsey:

I know where you are coming from and exactly how you feel. 26 years ago my

daughter was born with a lipomyelomeningocel e. At birth it appeared she had a

third cheek on her buttocks, at the base of the spine. She was seen two hours

after birth by a neurosurgeon who did xrays, checked for bowel and/or bladder

problems, watched her for two days for signs of hydrocephalus. He finally sent

us home with a diagnosis of a fatty growth which could be removed whenever we

wished , but he advised waiting until she was through puberty. He asked to see

her again in a year.

A year later he asked us to get a cat scan for confirmation of what he saw in

xrays. After viewing the scan he gave us the same diagnosis and said to come

back only if she was having trouble walking or developed bowel or bladder

problems. He said when she was 15 or 16 to call him and he would refer us to a

plastic surgeon to take care of her " bump. "

When Emmy was 17 months old, my husbands brother (a family practice doctor)asked

that we get a second opinion from a pediatric neurosurgeon he knew in Ann Arbor,

MI. We went to see her and she had already seen the xrays and scan results when

we got there. It was then that we first heard about lipomyelomeningocel es. We

were in shock. She said her spine was tethered to the fatty growth and that we

needed to do surgery immediately. A week later, Emmy underwent a 9 hour surgery

at Mott's Children's Hospital. After it was over, Dr. Venes explained that if

her condition had gone untreated she would have been paralyzed by the age of 4

or 5. Emmy was the first child they did a laser procedure on that wasn't already

paralyzed. They asked us to keep her laying down on her side for two weeks. That

didn't happen, she was walking before she left the hospital. She had no

complications.

We went to see Dr. Venes yearly after that until she left Ann Arbor, and the saw

Dr. Marosek (sorry if I spelled it wrong) until she was 18. The only side

effect that she seems to have is pain in her feet if she spends too much time

sitting or standing. While in college she went to see another neurosurgeon in

South Bend who does a Spina Bifada clinic. He found no problems with her and

said it was an almost perfect outcome. Nothing can be done for her foot pain,

which was probably caused by a nerve being nicked during her surgery or damaged

at some other time. He even okay-ed her for military service if she wanted.

Emmy is a healthy, happy 26 year old doctor today. She is completing her first

year of residency at Memorial Hospital in South Bend, Indiana. Her only

limitations are not being able to compete in contact sports and she has been

told that running and jogging are not a good idea for her. She is extremely

active, skiing, dancing, tennis and tae bo.

I hope this helped relieve some of your fears. It makes you see that this

doesn't have to be a dire diagnosis. When I became pregnant when Emmy was three,

I panicked, sure that the new baby would also have this condition. I called Dr.

Venes, she responded, " if the new little one has a lipomyelomeningocel e, you

bring her to me and we'll fix her up, no problem. "

If you have any questions, feel free to ask. It's been a long time, but Emmy

keeps up on the latest advances and I can get answers from her. I will keep your

family in my prayers.

Marty

____________ _________ _________ _________ _________ _________ _

Click here for free search of religious schools located near you.

http://thirdpartyof fers.juno. com/TGL2111/ fc/Ioyw6iigjVnHX Q2hCSWOH3VZGwe5z

xTcuvIAR4fC18pgI qwoxQLSO2/ ?count=123456789 0

[Guest guest]

Hi! I " m the mother of a 6-year-old who also has LMMC. He had surgery when he was

just 3 weeks old, and he just had a repeat surgery this June. Every case is

different, and has different complexities, but our son has recovered well from

both surgeries and is able to run better after this latest surgery than he has

ever done before. When he was young, I think the hardest part was trying to

breastfeed during those initial days after surgery when he was supposed to be on

his back for 72 hours. We moved him onto a pillow to allow us to pick him up,

but still keep him flat. Best wishes and may it all work out well!

Shea

Re: baby girl has lipomyelomeningocele

Hi there! I was in your shoes about 18 months ago. My son was born

with LMC and we had the surgery done just before he was 3 months old.

He's now 18 months old and running all over the place

www.caringbridge.org/visit/ethanspage

>

> Hi, Im new here and I decided to join to get some information. My

> daughter, whom is now 2 months was diagnosed with LMMC and tethered

> cord a day after she was born. We go tomorrow to get her 2nd MRI at

> the Riley hospital for children. I would just like to know if you guys

> know of anyone this young that has had the surgery? How invasive it

> is? How long does it take to heal? and if repeat surgeries are

> the " norm. " I understand everyone is different and every case is

> different. But Im just really lost about everything... not to mention

> stressed!

>

[Guest guest]

Hi!

I can certainly understand your stress. {{{hugs}}}

My daughter is almost 3 (will be 3 Feb 6th ) and has Lipomyelomeningocele,

Neurogenic bladder and Neurogenic bowel. She had her diagnosis and first

de-tethering, Lipoma debulking at 4 ½ months of age. She had her 2nd

de-tethering and they tried to remove more of the Lipoma at 2 years of age

(this past February).

Repeat surgeries are the norm, sad to say.

Also, are you on the LMC-TCS list? If not, you should be.

Anne

Mama to 3 Little Monkeys (Conner, le and Delaney)

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Lynsey

Sent: Tuesday, November 11, 2008 10:12 AM

To: tetheredspinalcord

Subject: baby girl has lipomyelomeningocele

Hi, Im new here and I decided to join to get some information. My

daughter, whom is now 2 months was diagnosed with LMMC and tethered

cord a day after she was born. We go tomorrow to get her 2nd MRI at

the Riley hospital for children. I would just like to know if you guys

know of anyone this young that has had the surgery? How invasive it

is? How long does it take to heal? and if repeat surgeries are

the " norm. " I understand everyone is different and every case is

different. But Im just really lost about everything... not to mention

stressed!

[Guest guest]

--- Hi,

I have son and he hath LMMC. He was surgery year ago then he was 3

month old. Advace happened really fast, we was a hospital 3 days after

the surgery!

He an`t nothing problem this defect and he is group normal, runnin and

now he say a few word. And we potty tarin is get stardet!

When he was 3 hour old diagnosis is LMMC and that was a schok for me!

Meiju

In tetheredspinalcord , " Lynsey "

wrote:

>

> Hi, Im new here and I decided to join to get some information. My

> daughter, whom is now 2 months was diagnosed with LMMC and tethered

> cord a day after she was born. We go tomorrow to get her 2nd MRI at

> the Riley hospital for children. I would just like to know if you

guys

> know of anyone this young that has had the surgery? How invasive it

> is? How long does it take to heal? and if repeat surgeries are

> the " norm. " I understand everyone is different and every case is

> different. But Im just really lost about everything... not to

mention

> stressed!

>