Re: Kathy

[Guest guest]

,

Hi! Did they also not find the lipo and tethered cord until you were 14? Did

you have any symptoms before?

Thanks! Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Weaver wrote:

Hi Elissa. My name is . I have

lipomyelomenigocele, and have not for the life of me

been able to determine the difference between that and

lipomeningocele. I have a lipoma, intra- and

extradural, a tether at L4-L5. They found the spina

bifida occulta when I was 14. I've had two surgeries.

At the age of 20 and again 10 years later. The

resection and detethering were done at the same time,

though I think the first time, the resection actually

WAS the detethering.

I have no use of my bladder anymore. My one leg is

numb to touch in many areas. That same leg is also

pretty weak and flabby, which is fine since I'm

getting older and people expect me to be flabby! I do

have drop foot on the right side. I walk just fine,

though not very far. I have nerve pain in my legs,

but funny enough, no pain in my back. There weren't

complications to my surgeries. I was up and running

four days after the first, and up and hobbling 6 days

after the second.

Kathy will certainly pipe in with her information, but

since you seem excited to meet one adult, I thought

I'd introduce myself and then you'll know two. There

are many others on this list as well, many being

relative. Hopefully they'll give you some information

as well!

--- Elissa Mercado wrote:

> Kathy,

>

> Hi! I have been trying to find as many people as

> possible to talk to about lipomeningocele....so you

> had that and tethered cord, right? Same with my

> daughter...she had a syrinx too. Where were you

> tethered? She was at L4-L5. When was it detected?

> When was your surgery? Did they do the rescection of

> the lipoma and detether at the same time? How old

> were you? Have you retethered? Any more surgeries?

> Complications? Use and feeling of legs and feet?

> Eversions or foot drops? Bowel and bladder control?

> Okay...I think I am out of questions for

> now....sorry for so many, I am jsut so excited to

> find an adult with this....you are the first I have

> found! Thank you...and sorry for all the ?s!

>

> Elissa- mom to Jr. (4), Jennah (2), and

> Jesmarie (4 months- lipomyelomeningocele, tethered

> cord, syrinx- surgery at 3 months).

>

__________________________________________________

[Guest guest]

wasnt found on me til i was like 19.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Elissa Mercado

Sent: Wednesday, May 03, 2006 9:28 AM

To: tetheredspinalcord

Subject: Re: Kathy

,

Hi! Did they also not find the lipo and tethered cord until you were 14?

Did you have any symptoms before?

Thanks! Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Weaver wrote:

Hi Elissa. My name is . I have

lipomyelomenigocele, and have not for the life of me

been able to determine the difference between that and

lipomeningocele. I have a lipoma, intra- and

extradural, a tether at L4-L5. They found the spina

bifida occulta when I was 14. I've had two surgeries.

At the age of 20 and again 10 years later. The

resection and detethering were done at the same time,

though I think the first time, the resection actually

WAS the detethering.

I have no use of my bladder anymore. My one leg is

numb to touch in many areas. That same leg is also

pretty weak and flabby, which is fine since I'm

getting older and people expect me to be flabby! I do

have drop foot on the right side. I walk just fine,

though not very far. I have nerve pain in my legs,

but funny enough, no pain in my back. There weren't

complications to my surgeries. I was up and running

four days after the first, and up and hobbling 6 days

after the second.

Kathy will certainly pipe in with her information, but

since you seem excited to meet one adult, I thought

I'd introduce myself and then you'll know two. There

are many others on this list as well, many being

relative. Hopefully they'll give you some information

as well!

--- Elissa Mercado wrote:

> Kathy,

>

> Hi! I have been trying to find as many people as

> possible to talk to about lipomeningocele....so you

> had that and tethered cord, right? Same with my

> daughter...she had a syrinx too. Where were you

> tethered? She was at L4-L5. When was it detected?

> When was your surgery? Did they do the rescection of

> the lipoma and detether at the same time? How old

> were you? Have you retethered? Any more surgeries?

> Complications? Use and feeling of legs and feet?

> Eversions or foot drops? Bowel and bladder control?

> Okay...I think I am out of questions for

> now....sorry for so many, I am jsut so excited to

> find an adult with this....you are the first I have

> found! Thank you...and sorry for all the ?s!

>

> Elissa- mom to Jr. (4), Jennah (2), and

> Jesmarie (4 months- lipomyelomeningocele, tethered

> cord, syrinx- surgery at 3 months).

>

__________________________________________________

[Guest guest]

When I was born, I had a hemangioma on my back/butt.

That is all the further they looked and that is what

they treated. I potty trained early, but had bladder

accidents all the time. I had stress incontinence and

urge incontinence. I also walked like a duck and just

didn't have the stamina other kids had. I was fat, so

everyone just figured I was lazy.

When I was in 8th grade, they did a scoliosis check

and found out that one of my legs was shorter than the

other due to the musculature in my back being very

lopsided. They sent me for xrays, found the SB and

lipoma. Nothing was mentioned about TCS. I became

symptomatic at 20 and still, the doc never said TCS. I

had surgery to remove the lipoma, or as much of it as

could be removed and all was well until I had a couple

more kids and lost bladder function and now live with

neuropathy and weakness. When I went back to the doc

at 29, I finally heard the words tethered cord.

--- Elissa Mercado wrote:

> ,

>

> Hi! Did they also not find the lipo and tethered

> cord until you were 14? Did you have any symptoms

> before?

>

> Thanks! Elissa- mom to Jr. (4), Jennah (2),

> and Jesmarie (4 months- lipomyelomeningocele,

> tethered cord, and syrinx- surgery at 3 months)

>

> Weaver wrote:

__________________________________________________

[Guest guest]

,

Wow...so the lipoma wasn't actually connected to your spinal cord, then? I'm

surprised they didn't see it during your lipoma rescection. I am sure it was so

difficult to wait so long to finally figure out what was going on...

Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Weaver wrote:

When I was born, I had a hemangioma on my back/butt.

That is all the further they looked and that is what

they treated. I potty trained early, but had bladder

accidents all the time. I had stress incontinence and

urge incontinence. I also walked like a duck and just

didn't have the stamina other kids had. I was fat, so

everyone just figured I was lazy.

When I was in 8th grade, they did a scoliosis check

and found out that one of my legs was shorter than the

other due to the musculature in my back being very

lopsided. They sent me for xrays, found the SB and

lipoma. Nothing was mentioned about TCS. I became

symptomatic at 20 and still, the doc never said TCS. I

had surgery to remove the lipoma, or as much of it as

could be removed and all was well until I had a couple

more kids and lost bladder function and now live with

neuropathy and weakness. When I went back to the doc

at 29, I finally heard the words tethered cord.

--- Elissa Mercado wrote:

> ,

>

> Hi! Did they also not find the lipo and tethered

> cord until you were 14? Did you have any symptoms

> before?

>

> Thanks! Elissa- mom to Jr. (4), Jennah (2),

> and Jesmarie (4 months- lipomyelomeningocele,

> tethered cord, and syrinx- surgery at 3 months)

>

> Weaver wrote:

__________________________________________________

[Guest guest]

Bill,

Did you have a lipoma too?

Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Bill wrote:

wasnt found on me til i was like 19.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Elissa Mercado

Sent: Wednesday, May 03, 2006 9:28 AM

To: tetheredspinalcord

Subject: Re: Kathy

,

Hi! Did they also not find the lipo and tethered cord until you were 14?

Did you have any symptoms before?

Thanks! Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Weaver wrote:

Hi Elissa. My name is . I have

lipomyelomenigocele, and have not for the life of me

been able to determine the difference between that and

lipomeningocele. I have a lipoma, intra- and

extradural, a tether at L4-L5. They found the spina

bifida occulta when I was 14. I've had two surgeries.

At the age of 20 and again 10 years later. The

resection and detethering were done at the same time,

though I think the first time, the resection actually

WAS the detethering.

I have no use of my bladder anymore. My one leg is

numb to touch in many areas. That same leg is also

pretty weak and flabby, which is fine since I'm

getting older and people expect me to be flabby! I do

have drop foot on the right side. I walk just fine,

though not very far. I have nerve pain in my legs,

but funny enough, no pain in my back. There weren't

complications to my surgeries. I was up and running

four days after the first, and up and hobbling 6 days

after the second.

Kathy will certainly pipe in with her information, but

since you seem excited to meet one adult, I thought

I'd introduce myself and then you'll know two. There

are many others on this list as well, many being

relative. Hopefully they'll give you some information

as well!

--- Elissa Mercado wrote:

> Kathy,

>

> Hi! I have been trying to find as many people as

> possible to talk to about lipomeningocele....so you

> had that and tethered cord, right? Same with my

> daughter...she had a syrinx too. Where were you

> tethered? She was at L4-L5. When was it detected?

> When was your surgery? Did they do the rescection of

> the lipoma and detether at the same time? How old

> were you? Have you retethered? Any more surgeries?

> Complications? Use and feeling of legs and feet?

> Eversions or foot drops? Bowel and bladder control?

> Okay...I think I am out of questions for

> now....sorry for so many, I am jsut so excited to

> find an adult with this....you are the first I have

> found! Thank you...and sorry for all the ?s!

>

> Elissa- mom to Jr. (4), Jennah (2), and

> Jesmarie (4 months- lipomyelomeningocele, tethered

> cord, syrinx- surgery at 3 months).

>

__________________________________________________

[Guest guest]

Oh no, the lipoma absolutely was attached to my spine.

My spine grows down through the lipoma. It's a

tangled mess back there! The doctor who did my

surgery at 20 was a real patriarch. He gave me almost

no information about what was wrong. I was so happy

to be getting rid of the lump on my back that I didn't

bother to ask! Of course, when I was 30 and had the

surgery, I asked a lot of questions, heard tethered

cord, and looked it all up. I got on the precursor to

this group and started asking about the surgery. As

people described it, I was like " Hey, I've had that

done before! " .

It wasn't frustrating to wait. I just thought I was

fat and lazy and dorky. It was just me. I had no

clue there was anything going on with my spine, so I

never connected any of the things that I now know are

symptoms to the lump on my back.

--- Elissa Mercado wrote:

> ,

>

> Wow...so the lipoma wasn't actually connected to

> your spinal cord, then? I'm surprised they didn't

> see it during your lipoma rescection. I am sure it

> was so difficult to wait so long to finally figure

> out what was going on...

>

> Elissa- mom to Jr. (4), Jennah (2), and

> Jesmarie (4 months- lipomyelomeningocele, tethered

> cord, and syrinx- surgery at 3 months)

>

> Weaver wrote:

> When I was born, I had a hemangioma on my

> back/butt.

> That is all the further they looked and that is what

> they treated. I potty trained early, but had

> bladder

> accidents all the time. I had stress incontinence

> and

> urge incontinence. I also walked like a duck and

> just

> didn't have the stamina other kids had. I was fat,

> so

> everyone just figured I was lazy.

>

> When I was in 8th grade, they did a scoliosis check

> and found out that one of my legs was shorter than

> the

> other due to the musculature in my back being very

> lopsided. They sent me for xrays, found the SB and

> lipoma. Nothing was mentioned about TCS. I became

> symptomatic at 20 and still, the doc never said TCS.

> I

> had surgery to remove the lipoma, or as much of it

> as

> could be removed and all was well until I had a

> couple

> more kids and lost bladder function and now live

> with

> neuropathy and weakness. When I went back to the

> doc

> at 29, I finally heard the words tethered cord.

>

>

>

> --- Elissa Mercado wrote:

>

> > ,

> >

> > Hi! Did they also not find the lipo and tethered

> > cord until you were 14? Did you have any symptoms

> > before?

> >

> > Thanks! Elissa- mom to Jr. (4), Jennah (2),

> > and Jesmarie (4 months- lipomyelomeningocele,

> > tethered cord, and syrinx- surgery at 3 months)

> >

> > Weaver wrote:

>

>

>

> __________________________________________________

>

[Guest guest]

yes i did.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Elissa Mercado

Sent: Wednesday, May 03, 2006 11:48 AM

To: tetheredspinalcord

Subject: RE: Kathy

Bill,

Did you have a lipoma too?

Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Bill wrote:

wasnt found on me til i was like 19.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Elissa Mercado

Sent: Wednesday, May 03, 2006 9:28 AM

To: tetheredspinalcord

Subject: Re: Kathy

,

Hi! Did they also not find the lipo and tethered cord until you were 14?

Did you have any symptoms before?

Thanks! Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Weaver wrote:

Hi Elissa. My name is . I have

lipomyelomenigocele, and have not for the life of me

been able to determine the difference between that and

lipomeningocele. I have a lipoma, intra- and

extradural, a tether at L4-L5. They found the spina

bifida occulta when I was 14. I've had two surgeries.

At the age of 20 and again 10 years later. The

resection and detethering were done at the same time,

though I think the first time, the resection actually

WAS the detethering.

I have no use of my bladder anymore. My one leg is

numb to touch in many areas. That same leg is also

pretty weak and flabby, which is fine since I'm

getting older and people expect me to be flabby! I do

have drop foot on the right side. I walk just fine,

though not very far. I have nerve pain in my legs,

but funny enough, no pain in my back. There weren't

complications to my surgeries. I was up and running

four days after the first, and up and hobbling 6 days

after the second.

Kathy will certainly pipe in with her information, but

since you seem excited to meet one adult, I thought

I'd introduce myself and then you'll know two. There

are many others on this list as well, many being

relative. Hopefully they'll give you some information

as well!

--- Elissa Mercado wrote:

> Kathy,

>

> Hi! I have been trying to find as many people as

> possible to talk to about lipomeningocele....so you

> had that and tethered cord, right? Same with my

> daughter...she had a syrinx too. Where were you

> tethered? She was at L4-L5. When was it detected?

> When was your surgery? Did they do the rescection of

> the lipoma and detether at the same time? How old

> were you? Have you retethered? Any more surgeries?

> Complications? Use and feeling of legs and feet?

> Eversions or foot drops? Bowel and bladder control?

> Okay...I think I am out of questions for

> now....sorry for so many, I am jsut so excited to

> find an adult with this....you are the first I have

> found! Thank you...and sorry for all the ?s!

>

> Elissa- mom to Jr. (4), Jennah (2), and

> Jesmarie (4 months- lipomyelomeningocele, tethered

> cord, syrinx- surgery at 3 months).

>

__________________________________________________

[Guest guest]

Isn't that the story of our lives - those of us around the 35-40 age range.

No-one ever told me what was the reason for my feet deformities, or why I

had the dimple on my back, or that the pain I got in my early 30s was due

to " a tethered cord " - What the *** was that? Never heard of it and didn't

know the differences and the prognosis. So when I looked it all up on the

internet in 2000 I was totally and utterly traumatised by it and what I

could be facing.

The value of information, caring medical staff and a community like this

where we can share stories, experience and worries is so valuable

Regards

Nina

Bristol, UK

--

> Oh no, the lipoma absolutely was attached to my spine.

> My spine grows down through the lipoma. It's a

> tangled mess back there! The doctor who did my

> surgery at 20 was a real patriarch. He gave me almost

> no information about what was wrong. I was so happy

> to be getting rid of the lump on my back that I didn't

> bother to ask! Of course, when I was 30 and had the

> surgery, I asked a lot of questions, heard tethered

> cord, and looked it all up. I got on the precursor to

> this group and started asking about the surgery. As

> people described it, I was like " Hey, I've had that

> done before! " .

>

> It wasn't frustrating to wait. I just thought I was

> fat and lazy and dorky. It was just me. I had no

> clue there was anything going on with my spine, so I

> never connected any of the things that I now know are

> symptoms to the lump on my back.

>

>

>

>

>

> --- Elissa Mercado wrote:

>

>> ,

>>

>> Wow...so the lipoma wasn't actually connected to

>> your spinal cord, then? I'm surprised they didn't

>> see it during your lipoma rescection. I am sure it

>> was so difficult to wait so long to finally figure

>> out what was going on...

>>

>> Elissa- mom to Jr. (4), Jennah (2), and

>> Jesmarie (4 months- lipomyelomeningocele, tethered

>> cord, and syrinx- surgery at 3 months)

>>

>> Weaver wrote:

>> When I was born, I had a hemangioma on my

>> back/butt.

>> That is all the further they looked and that is what

>> they treated. I potty trained early, but had

>> bladder

>> accidents all the time. I had stress incontinence

>> and

>> urge incontinence. I also walked like a duck and

>> just

>> didn't have the stamina other kids had. I was fat,

>> so

>> everyone just figured I was lazy.

>>

>> When I was in 8th grade, they did a scoliosis check

>> and found out that one of my legs was shorter than

>> the

>> other due to the musculature in my back being very

>> lopsided. They sent me for xrays, found the SB and

>> lipoma. Nothing was mentioned about TCS. I became

>> symptomatic at 20 and still, the doc never said TCS.

>> I

>> had surgery to remove the lipoma, or as much of it

>> as

>> could be removed and all was well until I had a

>> couple

>> more kids and lost bladder function and now live

>> with

>> neuropathy and weakness. When I went back to the

>> doc

>> at 29, I finally heard the words tethered cord.

>>

>>

>>

>> --- Elissa Mercado wrote:

>>

>> > ,

>> >

>> > Hi! Did they also not find the lipo and tethered

>> > cord until you were 14? Did you have any symptoms

>> > before?

>> >

>> > Thanks! Elissa- mom to Jr. (4), Jennah (2),

>> > and Jesmarie (4 months- lipomyelomeningocele,

>> > tethered cord, and syrinx- surgery at 3 months)

>> >

>> > Weaver wrote:

>>

>>

>>

>> __________________________________________________

>>

[Guest guest]

That is exactly the benefit of having this online

community. We can support one another, but we can

also be an absolutely amazing source of information

for people who are facing this, or whose children are

facing this. People no longer have to be in the dark

about TCS, and I think this is a really smart and

knowing group of people!

--- " AB Bunton, Electrical & Electronic Engineering "

wrote:

> Isn't that the story of our lives - those of us

> around the 35-40 age range.

>

> No-one ever told me what was the reason for my feet

> deformities, or why I

> had the dimple on my back, or that the pain I got in

> my early 30s was due

> to " a tethered cord " - What the *** was that? Never

> heard of it and didn't

> know the differences and the prognosis. So when I

> looked it all up on the

> internet in 2000 I was totally and utterly

> traumatised by it and what I

> could be facing.

>

> The value of information, caring medical staff and a

> community like this

> where we can share stories, experience and worries

> is so valuable

>

> Regards

>

> Nina

> Bristol, UK

>

__________________________________________________

[Guest guest]

Hi Kathy,

I'm near Goldsboro, east of Raleigh on Hwy 70 going towards the coast.

I LOVE NC too.

I lived here as a child off and on until I was 12 (born in Detroit though)

Left for 28 years and finally made it back to NC after trying for 4 years of

my hubby looking for a job worth taking that would make the move worth it.

(he finally found a great one here)

My fathers family has been in NC since the 1600's but my mothers family is

from Michigan via Finland so I grew up in Michigan mostly. (I lived in Concord

NH for a couple years)

Eh, I've lived everywhere it seems LOL

I'm no Dr, nor do I play one on TV, but from the way you're describing your

symptoms I'd venture to guess you have the tsc/lmc and the DN going on at the

same time.

I don't know how well you're managing your diabetes but if you can improve

anything I urge you to do it as soon as possible....and talk to your Dr as

well. Even I am guilty of not doing as well as I should but I've been lucky so

far...it is something I need to work on though, this is way too important.

I worked in a dialysis clinic and I tell you the complications I've seen

from diabetes is enough to scare anyone straight. Dialysis alone is reason

enough but then you factor in possible blindness, amputations ect....I think

that's what really frightened me into doing the best I could.

(unmanaged high blood pressure is another HUGE cause of kidney failure also)

It scares me to think anyone suffers from DN. Please do all you can to take

care of yourself.

Hi ,

My grandmother had diabetes and her legs looked just like mine do now. Lack

of circulation, caused from nerve damage in my back from the tethered cord

(lipomeningocele) has caused my feet/legs to look like a red road map. It also

has caused extreme neuropathic pain - burning that is very difficult to

describe, a feeling of needles or painful " springs " in my feet when I walk,

especially on carpet for some reason, and a plethora of other symptoms and

issues

that are similar to what diabetics go through.

I recently moved to NC from Maine (in March...) We live in WS and I love it

here.

Kathy

co-owner, co-moderator

[Guest guest]

Hmmm.......I did tell my hubby if he got 'old' I'd trade him in on a younger

model.....where do you live again? LOL! (just kidding)

I can tell how PROUD you are of your son and you have every right to be

proud. It sounds like you raised a very good young man, no easy task these

days.

he's a great kid, a good student in the engineering department, swims on his

college division 1 team, and is an officer candidate for the Navy and after

college will go to Florida for the start of his pilot career. Having three

sisters taught him a lot about what he wants and doesn't want in a woman and he

has a real tendency towards mature, thoughtful, and healthy women (meaning

healthy in an eating and maintaining health way - not the other way.) He is so

gorgeous - he could be in GQ if he desired - 6' 3 " and about 190 lbs of all

muscles, and he always chooses personality over looks. He's such a great kid

(as are all of my kids, but he is my only son, I have no brothers so raising

him was a blast.)

Kathy