Re: HI Read please!

February 6, 2006

Hi Lee Anne,

Welcome and thanks for sharing your story.My sons is very simalar to yours, he

was born in 1991 with a sacral dimple ,skin tag and a small lump on his lower

back.

My thoughts go out to your mum, because I also asked questions and was

repeatedly told there was nothing wrong.We were told his bowel issues were due

to food intolerance and his poor urine flow due to phimosis so they circumstised

him.

He was finally diagnosed with Lipomyelomeningocele and tethered cord in March

2003 when his bladder packed up totally.

He has since had a Mitroffanof Stoma in Aug 04 and was detethered in April 05.

He is in some pain but overall doesn't let nothing get in his way.As this

condition is progressive as you know things could have been alot worse.

We are in the uk and I have been advised to seek compensation through medical

negligance due to prolonged missed diagnosis as aparently even in 91 the pead

should have been able to spot there was a problem.As my son is only 14 at the mo

we have till he is 21 to decide wether we want to go down that route.I was

wondering wether you know of any one who may have done this where you are.

Good luck for the future I hope you get your issues sorted.

Alison

swimgrl123 wrote:

I would like to share my story with anyone who wants to listen. My

name is Lee Anne and I am 18 years old. In 2004 I was finally

diagnosed with tethered cord and Lipomyelomeningocele. When I was

born in 1987 I always had an unusal lump on my lower back. The

doctors never noticed and my mother took me home. All the years I

was growning up my mother would ask my pediatricians what the

unusual lump was on back. They just told my mother that is was extra

fat that grew on my back and she should not worry. In my senior year

of high school I went to get a sports physical done because it was

soon time for swim team season and then softball season. I have

always been active in sports. When I went to get my physical my

peditrician was unable to see me so I saw her colleauge saw me

instead. Since it was new doctor in to see me of course my mother

wanted her opinion of what she thought the lump on my back was since

it seemed to have gotten bigger since I was born. The doctor right

away thought it was a cyst that needed to be checked out. So she

referred us to a neurosurgeon at the Children's of the Kings

Daughter's hospital. So we finally recieved an appointment and went

to see the neurosurgeon. He looked at my back and sent me right away

to have an MRI and a Urodynamic done. Although the MRI showed I had

tethered spinal cord and a Lipomyelomeningocele the urodynamic

didn't really show any bladder problems even though I felt I did.

The doctors went ahead and decided for me to have surgery just

incase of future problems and also they didn't know how it would

affect pregnency wants I decided to have kids. The nuerosurgeon told

me there should be any complications and that I only had a 3-5%

chance of spinal leakage after surgery. My surgery to remove the

Lipomyelomeningocele and untether my spine was scheduled for July 8,

2005. I was in the hospital for 7 days. I was in a lot of pain also.

I had to lay on my back for 24 hours as most do after this type of

surgery. I went home from the hospital with limited activity. After

a few weeks of surgery I had lots of swelling in the area where the

lipoma was. I went back to the doctor and he put a needle in my back

to drain the fluid. Within 2 days of that my back had swollen back

up. I then went back to the doctor and he told me I was going to

have to have another surgery. I went back in August 12, 2005 for my

second surgery. I was in the hospital for 12 days and I had to lay

on my back for 72 hours. Which was miserable and I was in so much

pain. It's been 7 months since my first surgery and I feel I'm still

having problems. My legs always hurt, my back hurts, and my bowels

and bladder don't feel right. I've read that some people have to

have a re-tethering done because of increased problems. I hope to

chat with other people and parents who have been through this.

Thanks, Lee Anne

Not Medical Advice. We Are Not Doctors.

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rick@...

February 9, 2006

Hi Lee Anne!

My name is Tina and my 9 month old daughter Alaina was born with

lipomyelomeningocele/tethered cord. She had a very large lipoma on her back

down near her tailbone area. We were immediately sent to a neurosurgeon who did

an MRI. She had surgery to untether the cord and remove some of the " lipo " at 2

months old.

She seems to be doing well (although she is still too young to tell me if

anything is bothering her, but she smiles all the time so I take that as a good

indication!). Alaina does have some bowel problems. She is always

constipated and I seem to have to try to help her " push " it out. We don't

know much yet about the bladder issues because she is so young. THe kidney

ultrasound and urodynamic test I was told were fine...although Alaina has

already had 2 urinary tract infections so I am keeping a close eye on her...

Alaina's feet/toes or ankles do not move either nor do they have sensation.

This has been since she was born....

I hope this helps you. If you have more specific questions, please feel free

to e-mail me! Its very hard to find others with lipomyelomeningocele...they

are far and few between!!!

Good Luck!!!!

Tina and Alaina