Re: Welcome from Scotland

January 17, 2008

Hello Louise!? Is there any pediatric neurosurgeon anywhere within driving

distance?? You said neurologist but I see no mention of a neurosurgeon having

been consulted?? And welcome.? Randee

Welcome from Scotland

Hello everyone!

Time for a wee introduction. My name is Louise, I'm a full time student nurse

and my 4 year old son has OSD with a tethered cord. He was born with

sacral dimples, one of which you couldn't see the end of. He got his first MRI

at about 10 months old, and after his 1st birthday the neurologist told me what

he had....

occult spinal dysraphism

tethered cord

mass of tissue around the nerves leading to the bladder and bowel

cyst of spinal fluid in the spinal cord (most recent MRI showed it had grown a

bit)

leg length difference (1.5cm)

the sacral dimple that you cant see the end of, did used to go all the way into

the spinal cord, but sealed a " wall " inside the tube in-utero thankfully.

He was 4 at the end of November. He has only recently started using a

potty/toilet for urine, but still uses nappies for faeces.

His docs have pretty much been saying " wait and see " to me all along... they

don't know 's illness so I'm sure they just don't know WHAT they're meant

to be doing so the " wait and see " card is always played to me. However what I've

managed to read is that supposedly detethering is the way to go as once problems

arise they are permanent....?

Even though I'm a nursing student it's all baffling!! So much medical jargon,

different words for things and conditions that mean the same thing etc...

His neurologist saw him on his 4th birthday and that was the first time she'd

seen him since diagnosis, tho s' consultant peadiatrician sends her his

MRIs etc. She lives in a different city (there's no neurologists in my city).

She has referred to speech and language therapy, to physio and for a

child IQ assessment, so we can see if 's behind intelligence etc for his

age, and then work with his nursery (he goes full time since I'm in full time

education) to try and get him ready for school after the summer. However if need

be we can leave him from starting school for another year.

He had IUGR which is Intra-uterine growth restriction. He didn't grow very well

and I ended up having him at 38 wks weighing 4lbs 4oz. He was in intensive care

for 1 night due to low blood glucose and low body temp, then was in special care

for another wk, as he also had no sucking reflex and was still not able keep up

body temp. IUGR can cause lesser IQ in itself.

I just feel like I'm fighting a losing battle... I've read up tons on the topic

of OSD and tethered cords online, and yet I'm still confused by it all - as

's docs seem to be themselves!! I'm looking forward to speaking and

contacting others who have some of these conditions as obviously there's no

other kids in my area with any form of TCS. I live in the Highlands of Scotland.

ALL of 's docs have NEVER come across it before.

thanks, and a warm ish Hello to you all!

Louise xx

__________________________________________________________

Free games, great prizes - get gaming at Gamesbox.

http://www.searchgamesbox.com

January 17, 2008

Hello Randee!

No the nearest pediatric neurosurgeon is 300 miles away. His

neurologist is about 150 miles away I think... His pediatritian only

got in contact with a pediatric neurosurgeon 6 months ago, and it

took the pediatric neurosurgeon over 4 letters to acknowledge ,

so the pead neurosurgeons only seen 's MRIs in the last couple

of months. Even then he's never seen himself. 's

peadiatrician says that the pead neurosurgeon's " not worried " about

the tethering and doesn't want to remove it when I questioned why it

wasn't being de-tethered.

Things are bit different here health-wise. We see GP's (general

practitioners) for all things, and you can only be referred to

anything in a hospital, like peadiatricians etc by your GP. I think

children in USA see a peadiatritian for everything? Even small

things like flu, urine infections etc. Over here their GP does

that.

Thanks for replying!

Louise

> Hello Louise!? Is there any pediatric neurosurgeon anywhere within

driving distance?? You said neurologist but I see no mention of a

neurosurgeon having been consulted?? And welcome.? Randee

>

> Welcome from Scotland

>

> Hello everyone!

> Time for a wee introduction. My name is Louise, I'm a full time

student nurse and my 4 year old son has OSD with a tethered

cord. He was born with sacral dimples, one of which you couldn't see

the end of. He got his first MRI at about 10 months old, and after

his 1st birthday the neurologist told me what he had....

>

> occult spinal dysraphism

> tethered cord

> mass of tissue around the nerves leading to the bladder and bowel

> cyst of spinal fluid in the spinal cord (most recent MRI showed it

had grown a bit)

> leg length difference (1.5cm)

> the sacral dimple that you cant see the end of, did used to go all

the way into the spinal cord, but sealed a " wall " inside the tube in-

utero thankfully.

>

> He was 4 at the end of November. He has only recently started using

a potty/toilet for urine, but still uses nappies for faeces.

>

> His docs have pretty much been saying " wait and see " to me all

along... they don't know 's illness so I'm sure they just don't

know WHAT they're meant to be doing so the " wait and see " card is

always played to me. However what I've managed to read is that

supposedly detethering is the way to go as once problems arise they

are permanent....?

> Even though I'm a nursing student it's all baffling!! So much

medical jargon, different words for things and conditions that mean

the same thing etc...

>

> His neurologist saw him on his 4th birthday and that was the first

time she'd seen him since diagnosis, tho s' consultant

peadiatrician sends her his MRIs etc. She lives in a different city

(there's no neurologists in my city). She has referred to

speech and language therapy, to physio and for a child IQ assessment,

so we can see if 's behind intelligence etc for his age, and

then work with his nursery (he goes full time since I'm in full time

education) to try and get him ready for school after the summer.

However if need be we can leave him from starting school for another

year.

>

> He had IUGR which is Intra-uterine growth restriction. He didn't

grow very well and I ended up having him at 38 wks weighing 4lbs 4oz.

He was in intensive care for 1 night due to low blood glucose and low

body temp, then was in special care for another wk, as he also had no

sucking reflex and was still not able keep up body temp. IUGR can

cause lesser IQ in itself.

>

> I just feel like I'm fighting a losing battle... I've read up tons

on the topic of OSD and tethered cords online, and yet I'm still

confused by it all - as 's docs seem to be themselves!! I'm

looking forward to speaking and contacting others who have some of

these conditions as obviously there's no other kids in my area with

any form of TCS. I live in the Highlands of Scotland. ALL of 's

docs have NEVER come across it before.

>

> thanks, and a warm ish Hello to you all!

>

> Louise xx

> __________________________________________________________

> Free games, great prizes - get gaming at Gamesbox.

> http://www.searchgamesbox.com

>

January 17, 2008

Hi

My name is Kathy, I have Lipomeningocele (undiagnosed at birth - dx. when I was

about 36 - ten years ago). I also teach - special education. I also have a

Chiari malformation that has not needed any surgical intervention (and if my

prayers are answered - it will never need surgery).

I was born with a sacral dimple - open. My parents were told (in 1961) that it

would close on its own and that unless I didn't " develop " within normal

milestones, there would be nothing to worry about. About five years later, we

moved from the west to the east coast and my parents pretty much forgot about

the sacral dimple. I had bladder/kidney infections constantly as a child,

orthopedic foot problems (one foot turned in - which can be a normal variance

and not always associated with what I have). I was also very clumsy and had

some other smaller problems that when looked at in hindsight, were related to

the neural tube defect. At any rate, no one put 2 and 2 together when I was

young.

Up until I hit my final height of 5'10 " I would lose bladder control with

laughing, sneezing, etc. and still had all the bladder/kidney problems and my

gait was never " perfect " but passed.

Once I reached full height, it was like magic - no more bladder/kidney problems

and the leaking almost stopped.

Then, after the birth of our fourth child (and last), and a fall down my cellar

stairs, I began having strange problems that I never put together as having one

cause and also never brought to the attention of a doctor, with the exception of

bladder leaking that got worse with each year. About nine years after the birth

of our last child, I was diagnosed with severe bladder/uterus prolapse and had a

partial hysterectomy and a bladder tuck. (No bladder tests done to see if there

was a cause to the bladder problems except the prolapse.) After the tuck, I

could not empty my bladder completely and had an infection for nine months

straight and always felt like my bladder was full (it was).

Finally, I had an allergic reaction to an antibiotic, saw my regular doctor who

was shocked at how much residual urine was in my bladder after I thought I had

emptied. He sent me to a urologist, who tested my reflexes (one side hyper, one

side absent), I had a positive Babinski, and a host of other smaller problems

that I wasn't aware of ,and one that I knew was present, but didn't know who to

ask about it or if it should even be brought to a doctor's attention. One leg

was " disappearing " . My left leg was wasting away (I thought I just wasn't

working out correctly - I'm right-handed and just kept trying to build the

opposite side up through a host of exercises.)

My uro pointed out that I had lost a lot of sensation in my legs in a swirl

pattern, had small foot deformities that I thought were from wearing ill-fitting

shoes (stylish), and that my leg wasn't able to gain strength more than likely

because all of the above were related.

He sent me a neurologist. I told my parents about my problems and neither

mentioned my dimple and although my urologist did notice it; he made a passing

comment about it - I think I was so wrapped up in all else that he pointed out,

the dimple comment went over my head and my parents still didn't put it together

either (my dimple scar looks like a small indent - almost a perfect circle;

maybe about a 1/4 of inch in circumference and the same deep).

The neuro gave me a host of possible problems that could be causing my woes,

including a " benign " tumor. I had an MRI and about three weeks later was

diagnosed with Lipomeningocele. About two months later I had my initial

untethering and eight years later I had five total untethering under my belt,

along with two lengthy pseudomeningocele surgeries (spinal fluid leak repairs),

and I was left with unrelenting pain, ortho issues, etc.

None of my problems were related to an unskilled nsg - it was just the roll of

the dice with how the surgery goes. It was explained to me, by the head of

pediatric neurosurgery at Massachusetts General Hospital, (referred to him after

my first surgery - I really had no pain pre-surgery and had chronic pain after

and some other issues such as having to self-cath, and neuro/ortho issues).

He said that when someone like me, who had definite neuro problems as a child

that went unchecked/intervened, that sometimes the nervous system compensates -

rewires sort of to help. Then, as an adult I got worse, had surgery, and the

" rewiring " of nerves was undone - and when the nervous system tried to heal - it

did so in a way that wasn't working - causing pain in areas where; although

there was nothing in those areas to cause pain, my spinal cord was sending the

pain signals, unchecked, and couldn't stop - causing a massive melt-down of the

nerves - unchecked pain nerves will keep firing, will fire more and more

continually because they sense that nothing is being done to help the pain the

spinal cord perceives - viscous cycle.

It was a very over-simplified explanation but made sense to me then and now. I

had a pain pump placed (intrathecal) in April of last year and although my

bladder still doesn't work and I have other neuro issues, I was able to return

to teaching in November of last year. I love working again - I still have pain,

but it's not debilitating and although I have to modify my home life to be able

to work (I would not be able to come home and pick up the house after working so

we hired a cleaning company, my husband does the work week cooking - which

equals ordering out most nights - but because of the bending/working, I need an

hour or two of down time to compensate and get the pain down) - I wouldn't trade

the life I have now for anything.

I do still need regular doctor appts. and I have noticed that my left leg is

getting worse again - I don't know how long I'll feel this good or how long I

can go without needing more interventions, but for now - compared to where I was

before the pain pump, I am one happy woman. Because I teach within special

education, things that I could never understand when I taught before this

started (the ability to not tell where in space your body is, nervous system

disorders, sensory issues, etc), are very near and dear to my heart.

Although the parents of my students do not know that anything is wrong with me

(to see me sit, or even walk a short distance, no one would think much except I

don't have a great gait), they have all commented on my knowledge of what has

been diagnosed with thier child - one or two always fits into my own body

issues, and the screening and proactively seeking assistance for my kids, the

referrals I make with the right knowledge to back up the referrals, and the

manner in which I approach my students' problems helps them more than I was able

to ten years ago. Everything happens for a reason and although I won't go so

far to say that my issues were brought about so I could help my students, it

definitely helps.

I don't know if any of this will help you - but whenever I hear about a sacral

dimple and someone that is similar to what I was born with - I feel the need to

write.

Kathy