introduction

[Guest guest]

Hi and welcome to the group. This is a great group...I hope you enjoy

it as much as I do.

Kay

[Guest guest]

Welcome to the group . This is a great group and you'll find lots of

support here. I look forward to getting to know you in the days ahead.

hugs,

Sundra

Our greatest glory is not in never falling, but in rising every time we fall

-- Re: Introduction

Hi and welcome to the group. This is a great group...I hope you

enjoy

it as much as I do.

Kay

[Guest guest]

Hi

Welcome to the group. I'm Lyndsey and I also live in

MI. I've had fibro for years, but was formally

diagnosed last year. I take a little medicine and try

to exercise every day. I just started going for a

massage and will see if that helps. I have 2 children

and that forces me to move more even when I don't want

to. I'm usually here, I don't talk very often (that

is what happens when you're out numbered in my house

This is a neat group to be in.

Hope to hear from you again

Lyndsey

__________________________________________________

[Guest guest]

Welcome to the list ... I hope you find it as wonderful here as I do.

I've only been here about 3 or 4 weeks myself (can you believe I can't

remember how long...stupid fibrofog). Anyway... it's a fantastic,

wonderful, amazing, caring, kind, loveable group here. They've helped me so

much is such a small amount of time... I don't know where I'd be without

them. Again, welcome to the list.

hugs,

Norah

Introduction

Greetings to all, and thanks for having me in this group. Tis good to

talk to those that understand what one is going through with

fibromyagia

My name is and I am 39 and live in Michigan, I have suffered

11 years and this past month was diagnosed with Fibromyalgia. I have

found very few things relieve the pain, it is a day to day thing.

I am angry at it because it keeps me from working and doing the

things I love, but have in some ways learned to live with it

My husband finally believes me when I say I hurt or am in alot of

pain, he lets me take my naps with no thoughts of me being lazy or

seeking attention

I just want to have a place to vent and get some ideas and am hoping

to make new friends in the process

Thanks

[Guest guest]

oh oh im not on any drugs whats my excuse ? LoL, oh yea im highly

intelligent, lol

--- Margaret Drinkwater wrote:

---------------------------------

I think Camilla is wrong. We're all normal, it's just all the drugs

we're on that make us nuts!! haha. At least we have SOMETHING we can

blame it on.

Welcome again

Margaret

Introduction

Greetings to all, and thanks for having me in this group. Tis good

to

talk to those that understand what one is going through with

fibromyagia

My name is and I am 39 and live in Michigan, I have

suffered

11 years and this past month was diagnosed with Fibromyalgia. I

have

found very few things relieve the pain, it is a day to day thing.

I am angry at it because it keeps me from working and doing the

things I love, but have in some ways learned to live with it

My husband finally believes me when I say I hurt or am in alot of

pain, he lets me take my naps with no thoughts of me being lazy or

seeking attention

I just want to have a place to vent and get some ideas and am

hoping

to make new friends in the process

Thanks

1. While it is wonderful to share our experiences with everyone on

the list as to what treatments do and don't work for us, pls always

check with your dr. Some treatments are dangerous when given along

with other meds as well as to certain health conditions or just

dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is)

pls don't be afraid to ask for help. It is the first step to trying to

make that situation better.

Have a nice day everyone.

[Guest guest]

that'll do it!! My dd and dh are both highly intelligent and if you can

understand this, they are not the smartest people on the earth!! I am not

intelligent but live on common sense. Sometimes I think that's better.

Margaret,

Mom to the monsters and master quilter

-- Re: Introduction

oh oh im not on any drugs whats my excuse ? LoL, oh yea im highly

intelligent, lol

--- Margaret Drinkwater wrote:

---------------------------------

I think Camilla is wrong. We're all normal, it's just all the drugs

we're on that make us nuts!! haha. At least we have SOMETHING we can

blame it on.

Welcome again

Margaret

Introduction

Greetings to all, and thanks for having me in this group. Tis good

to

talk to those that understand what one is going through with

fibromyagia

My name is and I am 39 and live in Michigan, I have

suffered

11 years and this past month was diagnosed with Fibromyalgia. I

have

found very few things relieve the pain, it is a day to day thing.

I am angry at it because it keeps me from working and doing the

things I love, but have in some ways learned to live with it

My husband finally believes me when I say I hurt or am in alot of

pain, he lets me take my naps with no thoughts of me being lazy or

seeking attention

I just want to have a place to vent and get some ideas and am

hoping

to make new friends in the process

Thanks

1. While it is wonderful to share our experiences with everyone on

the list as to what treatments do and don't work for us, pls always

check with your dr. Some treatments are dangerous when given along

with other meds as well as to certain health conditions or just

dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is)

pls don't be afraid to ask for help. It is the first step to trying to

make that situation better.

Have a nice day everyone.

[Guest guest]

Yes common sense , me too, I think i bore some of my closest with

common sense at times, lol. My mom was very common sensed, I get most

of it from her Im very sure

--- Margaret Drinkwater wrote:

---------------------------------

that'll do it!! My dd and dh are both highly intelligent and if you can

understand this, they are not the smartest people on the earth!! I am

not

intelligent but live on common sense. Sometimes I think that's better.

Margaret,

Mom to the monsters and master quilter

-- Re: Introduction

oh oh im not on any drugs whats my excuse ? LoL, oh yea im highly

intelligent, lol

--- Margaret Drinkwater wrote:

---------------------------------

I think Camilla is wrong. We're all normal, it's just all the drugs

we're on that make us nuts!! haha. At least we have SOMETHING we can

blame it on.

Welcome again

Margaret

Introduction

Greetings to all, and thanks for having me in this group. Tis good

to

talk to those that understand what one is going through with

fibromyagia

My name is and I am 39 and live in Michigan, I have

suffered

11 years and this past month was diagnosed with Fibromyalgia. I

have

found very few things relieve the pain, it is a day to day thing.

I am angry at it because it keeps me from working and doing the

things I love, but have in some ways learned to live with it

My husband finally believes me when I say I hurt or am in alot of

pain, he lets me take my naps with no thoughts of me being lazy or

seeking attention

I just want to have a place to vent and get some ideas and am

hoping

to make new friends in the process

Thanks

1. While it is wonderful to share our experiences with everyone on

the list as to what treatments do and don't work for us, pls always

check with your dr. Some treatments are dangerous when given along

with other meds as well as to certain health conditions or just

dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is)

pls don't be afraid to ask for help. It is the first step to trying to

make that situation better.

Have a nice day everyone.

[Guest guest]

Hi!

I've just joined the group. I am a 47 year-old female, married and a mother of

two

teenaged boys.

I had surgery for spina bifida occulta when I was an infant in 1962. From what I

understand I wouldn't have walked had I not received the surgery. I've lived

most of my

life with back pain, but I had no further surgeries or checkups as far as spine

issues were

concerned until 2004/5, when I told my internist I was experiencing shooting

nerve pain

from my spine down my right leg with accompanying weakness. This was a new kind

of

pain, like lightening bolts accompanied by the inability to bear weight on my

right side.

Initial x-rays showed a grade 3 spondylolisthesis at L5/S1 with significant

nerve root

compression. CTs and MRIs revealed diastematomyelia, pars defects at L4 and L5,

and a

tethered cord in two places (T11 and L5). I also have a mildly neurogenic

bladder and a

cavovarus right foot. Of course some of these issues were there all along, but I

only

learned of them after the MRI via a local neurosurgeon in 2005.

Over the last two years I've been experiencing deterioration in mobility, gait,

bladder and

bowel function with increased pain in my spine, legs and feet and tingling in my

forearms

and hands.

Meanwhile, my internist sent me to a foot specialist at a teaching hospital for

issues w/

the cavovarus foot. I took my spine films along, knowing that the one was

likely

connected to the other. When the doctor saw my films he said 1) I need foot

surgery, and

he thinks I'll do very well, but 2) I MUST address the back first, and he feels

I'm nearing an

emergency situation. The consensus is that I need to take action within the

next 6-8

months. The spondylolisthesis is pretty dramatic on an x-ray, and most of my

counsel has

been to get that worked on pronto, via laminectomy and a 360 fusion. My local

neurosurgeon propeses this and is certainly capable of doing this kind of

surgery, but he

told me up front that he had never seen a diastematomyelia outside a textbook,

and I'm

not sure how familiar he is with tethered cords and the long term issues related

to the

spina bifida occulta. I'm concerned that the tethering and the diastematomyelia

would

complicate the surgery, so I'm off to teaching hospitals for more opinions.

I had a second MRI this week to contrast with my 2005 films, and the only

appreciable

change is that there is some fluid on my spine now in the vacinity of the

uppermost

tethered site. The spondylolisthesis is scary looking but stable, and still

pressing on the

root of the L5/S1 nerve bundle. It appears to be naturally fused, so it's

probably very old.

I have so many questions as I try to understand my rather unique physiology and

its

implications! It helps me to read your messages.

I'll close by saying that I'm concerned the orthopaedic repair of my L5/S1

issues isn't the

only repair I need. I think I probably need detethering surgery, but no one I've

seen so far

has done it, in particular on an adult. There are teaching hospitals 100 miles

north and

south of me, and I have an appointment at one next Wednesday. I have a referral

to the

other one, but we haven't been able to schedule an appointment yet.

Thanks! I apologize for the length of my introduction. I hope it's clear.

Suzy

[Guest guest]

Thank you for reposting Suzy. Sounds like you have a lot going on and

are in need of info to make some decisions. Hopefully you will get

the feedback you need. It is most diffiuclt to find doctors that are

familiar with TC much less all that you have going on. Perhaps if you

post where you live (state) then someone can suggest someone. I would

definately NOT have a surgeon do it that has not done it before

(including with the additional complications that you have). There

has to be a surgeon out there that has experience with this. My

neurosurgeon that did my release had never done one before...it went

well but if I knew then what I know now...LOL. I was very blessed. I

would be leary of any surgeon that just wants to jump in there, I

need a broken coccyx removed and the best of the best wont do it for

fear of paralysis. Beware of those who do not know, what they do not

know. I am still learning every day about this crazy thing called TC.

There is so much to know and yet the " textbook " version is sadly

lacking. I am so grateful for forums such as this where I can ask

people who are actually living it, otherwise I am sure I would go

nuts. So much of it doesnt make sense, ie my bowel and bladder

function seems to come and go...my pains and " sensations " move

around. I have recently started getting the crawly, wasp stinging

sensations on my upper extremities, I don't know if it is medication

related (on Neurontin) or if I have T-spine trouble (I know I have C-

spine damage) I have a lot of T-spine pain and they wanted an MRI but

I dont have the money. Curious that you are tethered in two spots,

perhaps if and when I can find funding I should get that MRI. Suzy, I

know you must be going crazy trying to decide what to do. As you

said, you have had these conditions a long time, why do they feel it

is nearing an emergency state? What are the consequenses of not doing

surgery? More nerve damage? Won't surgery cause more nerve damage in

and of itself, especially if they aren't familiar with your

abnormalities? It appears, in talking with others with TC, that " we "

do not tolerate spinal insults well. Just the fact that we are

tethered shows that we have a tendency to " overgrow " tissue and

especially after surgery with scar tissue (which compresses nerves as

well) I know there are others who have had fusions, I hope they

respond to you. I would be too scared to get one myself, I cant even

wear earrings without a major inflamation reaction! Well, just listen

to your gut...dont let them rush you into anything and remember that

surgery seldom " returns or restores " anything. Many

Many Blessings,

>

> Hi!

>

> I've just joined the group. I am a 47 year-old female, married and

a mother of two

> teenaged boys.

>

> I had surgery for spina bifida occulta when I was an infant in

1962. From what I

> understand I wouldn't have walked had I not received the surgery.

I've lived most of my

> life with back pain, but I had no further surgeries or checkups as

far as spine issues were

> concerned until 2004/5, when I told my internist I was experiencing

shooting nerve pain

> from my spine down my right leg with accompanying weakness. This

was a new kind of

> pain, like lightening bolts accompanied by the inability to bear

weight on my right side.

> Initial x-rays showed a grade 3 spondylolisthesis at L5/S1 with

significant nerve root

> compression. CTs and MRIs revealed diastematomyelia, pars defects

at L4 and L5, and a

> tethered cord in two places (T11 and L5). I also have a mildly

neurogenic bladder and a

> cavovarus right foot. Of course some of these issues were there all

along, but I only

> learned of them after the MRI via a local neurosurgeon in 2005.

>

> Over the last two years I've been experiencing deterioration in

mobility, gait, bladder and

> bowel function with increased pain in my spine, legs and feet and

tingling in my forearms

> and hands.

>

> Meanwhile, my internist sent me to a foot specialist at a teaching

hospital for issues w/

> the cavovarus foot. I took my spine films along, knowing that the

one was likely

> connected to the other. When the doctor saw my films he said 1) I

need foot surgery, and

> he thinks I'll do very well, but 2) I MUST address the back first,

and he feels I'm nearing an

> emergency situation. The consensus is that I need to take action

within the next 6-8

> months. The spondylolisthesis is pretty dramatic on an x-ray, and

most of my counsel has

> been to get that worked on pronto, via laminectomy and a 360

fusion. My local

> neurosurgeon propeses this and is certainly capable of doing this

kind of surgery, but he

> told me up front that he had never seen a diastematomyelia outside

a textbook, and I'm

> not sure how familiar he is with tethered cords and the long term

issues related to the

> spina bifida occulta. I'm concerned that the tethering and the

diastematomyelia would

> complicate the surgery, so I'm off to teaching hospitals for more

opinions.

>

> I had a second MRI this week to contrast with my 2005 films, and

the only appreciable

> change is that there is some fluid on my spine now in the vacinity

of the uppermost

> tethered site. The spondylolisthesis is scary looking but stable,

and still pressing on the

> root of the L5/S1 nerve bundle. It appears to be naturally fused,

so it's probably very old.

>

> I have so many questions as I try to understand my rather unique

physiology and its

> implications! It helps me to read your messages.

>

> I'll close by saying that I'm concerned the orthopaedic repair of

my L5/S1 issues isn't the

> only repair I need. I think I probably need detethering surgery,

but no one I've seen so far

> has done it, in particular on an adult. There are teaching

hospitals 100 miles north and

> south of me, and I have an appointment at one next Wednesday. I

have a referral to the

> other one, but we haven't been able to schedule an appointment yet.

>

>

> Thanks! I apologize for the length of my introduction. I hope it's

clear.

>

> Suzy

>

[Guest guest]

Despite my previous post, I will contradict myself now

LOL. If in fact you are going to go to the DC area I

totally recommend Dr. Robery Keating at Childrens

National Medical Center- Childrens DC (not sure which

they call it now). He was my neurosurgeon from when I

was 13 till 22nd and I loved him. He mentioend

several times he actually does operate on adults- not

sure the circumstances or anything, but it's worth

checking out. He has a great bedside manner (VERY

important to me) and is a great surgeon. He has been

in the news before- I know one of the instances was

with SB babies and then also some other high-profile

cases but I'm drawing a blank right now. Sorry, it's

2:12 am and I'm at work. Anyways, just thought I'd

give you his name and my recommendation if you go to

the DC area!

Jacque

--- shovels_without_shoes wrote:

> , thank you for your quick reply.

>

> I live in Huntsville, Alabama. Great town, if

> anyone's looking for a new home! My

> appointment next week is in Nashville at Vanderbilt

> (where my sb surgery was conducted

> in '62). I'm also trying to get a referral to a

> specialist named Mark Hadley at UAB

> (Birmingham). My dearest friend lives in the DC

> area and is encouraging me to consider

> s Hopkins in my referrals as well, since I would

> have her support locally. I feel sure

> one of these sources will be a good fit for what I

> need.

>

> The reason I've been told to hurry up and get the

> laminectomy and fusion is that if I wait

> much longer I'll reach an emergency situation with

> loss of bladder and bowel function that

> never return. So, the surgery would be to stabilize

> the declining neurological function. I

> don't expect much improvement, but I'd like to try

> and prevent things from getting worse.

>

> I'm tethered in two spots because of my spina bifida

> incision site, I think. Top and bottom

> of the scar. Two fatty " pillows " on my back at the

> tethered spots. No one I've seen has

> suggested detethering surgery, but none of them have

> ever done it, so there's that. My

> symptoms fit TCS, but they also fit the

> spondylolisthesis, and that's what looks most

> urgent in the films, I guess, therefore the

> suggestion for lam. and fusion.

>

> I hate not to use my local neurosurgeon; he's

> wonderful. That said, I believe it's in my best

> interest to seek help from a group who would look at

> my films and not say " wow! I've

> never seen that before... " I'm thinking the

> neurosurgeon who helps me will be the one

> who sees enough cases like mine that they don't find

> my films to be that dramatic.

>

> Suzy

>

>

>

>

> > >

> > > Hi!

> > >

> > > I've just joined the group. I am a 47 year-old

> female, married and

> > a mother of two

> > > teenaged boys.

> > >

> > > I had surgery for spina bifida occulta when I

> was an infant in

> > 1962. From what I

> > > understand I wouldn't have walked had I not

> received the surgery.

> > I've lived most of my

> > > life with back pain, but I had no further

> surgeries or checkups as

> > far as spine issues were

> > > concerned until 2004/5, when I told my internist

> I was experiencing

> > shooting nerve pain

> > > from my spine down my right leg with

> accompanying weakness. This

> > was a new kind of

> > > pain, like lightening bolts accompanied by the

> inability to bear

> > weight on my right side.

> > > Initial x-rays showed a grade 3

> spondylolisthesis at L5/S1 with

> > significant nerve root

> > > compression. CTs and MRIs revealed

> diastematomyelia, pars defects

> > at L4 and L5, and a

> > > tethered cord in two places (T11 and L5). I

> also have a mildly

> > neurogenic bladder and a

> > > cavovarus right foot. Of course some of these

> issues were there all

> > along, but I only

> > > learned of them after the MRI via a local

> neurosurgeon in 2005.

> > >

> > > Over the last two years I've been experiencing

> deterioration in

> > mobility, gait, bladder and

> > > bowel function with increased pain in my spine,

> legs and feet and

> > tingling in my forearms

> > > and hands.

> > >

> > > Meanwhile, my internist sent me to a foot

> specialist at a teaching

> > hospital for issues w/

> > > the cavovarus foot. I took my spine films

> along, knowing that the

> > one was likely

> > > connected to the other. When the doctor saw my

> films he said 1) I

> > need foot surgery, and

> > > he thinks I'll do very well, but 2) I MUST

> address the back first,

> > and he feels I'm nearing an

> > > emergency situation. The consensus is that I

> need to take action

> > within the next 6-8

> > > months. The spondylolisthesis is pretty

> dramatic on an x-ray, and

>

=== message truncated ===

[Guest guest]

Hello to everyone,

My name is Sally. I found your group through the adult support network for

people with Spina Bifida. A little about myself: I was born with Spina Bifida,

lipomeningomyeocele, tethered spinal cord. I am 54 years old and live about 20

miles north of San Francisco. My spinal problem has resulted in over 28

surgeries mostly to my feet and legs, however I have had 3 back surgeries two of

which were tethered cord surgeries. The last tethered cord surgery was in 1992

at UCSF. Since around 1997 I have had progressive problems related to bowel and

bladder function, weakness in my legs and inversion of my left foot. I have

discovered that despite the two surgeries my cord is still tethered at the filum

terminale level. However the doctors who performed the tethered cord surgeries

do not want to go back in again. I have consulted with Dr. McClone in

Chicago about a year and a half ago and am debating about whether to do a third

tethered cord surgery as I know it will ultimately result in more scarring and

possible (perhaps probably) more tethering. I am hoping for any imput any of you

may have as to whether a third surgery might be beneficial? I would love to hear

from any of you about your own experiences with this problem.

Thank you

sally

[Guest guest]

Hi Sally, glad you found us, sorry you had to. We all have our own

opinion about surgeries so you will get varying opinions. Personally,

I am avoiding any more surgeries because I feel that it does just

cause more scar tissue plus, I know what limitations I have now, and

for now I can deal (most days lol) Surgery is always a risk and

seldom returns anything. Anxiously awaiting a better option, hope

they're working on one Blessings,

>

> Hello to everyone,

>

> My name is Sally. I found your group through the adult support

network for people with Spina Bifida. A little about myself: I was

born with Spina Bifida, lipomeningomyeocele, tethered spinal cord. I

am 54 years old and live about 20 miles north of San Francisco. My

spinal problem has resulted in over 28 surgeries mostly to my feet

and legs, however I have had 3 back surgeries two of which were

tethered cord surgeries. The last tethered cord surgery was in 1992

at UCSF. Since around 1997 I have had progressive problems related to

bowel and bladder function, weakness in my legs and inversion of my

left foot. I have discovered that despite the two surgeries my cord

is still tethered at the filum terminale level. However the doctors

who performed the tethered cord surgeries do not want to go back in

again. I have consulted with Dr. McClone in Chicago about a

year and a half ago and am debating about whether to do a third

tethered cord surgery as I know it will ultimately result in more

scarring and possible (perhaps probably) more tethering. I am hoping

for any imput any of you may have as to whether a third surgery might

be beneficial? I would love to hear from any of you about your own

experiences with this problem.

> Thank you

>

> sally

>

>

[Guest guest]

Hi Sally,

I've only had one tethered cord release surgery in 2004,( and two c-spine

surgeries) but have several indications that I'm retethered, but nothing is

definative on my MRIs.  My neurosurgeons(mine plus a referral) and I agree not

to just go in and take a look, but they will continue to monitor me for more

deficits.  I guess it comes down to how much can you take and only you can

answer that one.

You probably are an expert on subject, but continue to learn about it and seek

out the best doctors you can find.

and welcome to the group.

Jane

Re: Introduction

Hello to everyone,

My name is Sally. I found your group through the adult support network for

people with Spina Bifida. A little about myself: I was born with Spina Bifida,

lipomeningomyeocele , tethered spinal cord. I am 54 years old and live about 20

miles north of San Francisco. My spinal problem has resulted in over 28

surgeries mostly to my feet and legs, however I have had 3 back surgeries two of

which were tethered cord surgeries. The last tethered cord surgery was in 1992

at UCSF. Since around 1997 I have had progressive problems related to bowel and

bladder function, weakness in my legs and inversion of my left foot. I have

discovered that despite the two surgeries my cord is still tethered at the filum

terminale level. However the doctors who performed the tethered cord surgeries

do not want to go back in again. I have consulted with Dr. McClone in

Chicago about a year and a half ago and am debating about whether to do a third

tethered cord surgery as I

know it will ultimately result in more scarring and possible (perhaps probably)

more tethering. I am hoping for any imput any of you may have as to whether a

third surgery might be beneficial? I would love to hear from any of you about

your own experiences with this problem.

Thank you

sally

[Guest guest]

I think that it is a decision that everyone has to make on their own. I get

to a point where so much scar tissue builds up and I become so miserable I

start to consider surgery again -- even though each time I swear I will

never do it again. The problem is that the scar tissue reaches a point

where no matter what I do I cannot live an even reasonable appoximation of a

normal life. Currently my uroglogist is pushing for me to at least have my

NSG to take a look, as well as my pain management doc and my neurlogist has

simply quit. LOL, he has written 'DO NOT RETURN' all over every document

that has my name on it. That leaves me pretty much up the creek without a

paddle. I was pretty depressed about the whole thing for awhile -- but

finally realized seeing the doctor doesn't mean actually having the

surgery.

Like you, my problems are primarily bladder and bowel. I just can't stand

it anymore. I sleep only 3 hours a night since I am unable to roll-over and

instead just wake up. If nothing else, maybe it is time to see my local

Spina Bifida Clinic since I'm sure menopause is also being thrown into the

mix. Joy joy!

M.

> Hello to everyone,

>

> My name is Sally. I found your group through the adult support network for

> people with Spina Bifida. A little about myself: I was born with Spina

> Bifida, lipomeningomyeocele, tethered spinal cord. I am 54 years old and

> live about 20 miles north of San Francisco. My spinal problem has resulted

> in over 28 surgeries mostly to my feet and legs, however I have had 3 back

> surgeries two of which were tethered cord surgeries. The last tethered cord

> surgery was in 1992 at UCSF. Since around 1997 I have had progressive

> problems related to bowel and bladder function, weakness in my legs and

> inversion of my left foot. I have discovered that despite the two surgeries

> my cord is still tethered at the filum terminale level. However the doctors

> who performed the tethered cord surgeries do not want to go back in again. I

> have consulted with Dr. McClone in Chicago about a year and a half ago

> and am debating about whether to do a third tethered cord surgery as I know

> it will ultimately result in more scarring and possible (perhaps probably)

> more tethering. I am hoping for any imput any of you may have as to whether

> a third surgery might be beneficial? I would love to hear from any of you

> about your own experiences with this problem.

> Thank you

>

> sally

>

>

[Guest guest]

Sugery to prevent any progressive problems related to bowel and

bladder function and weakness to your legs and inversion of your

foot is similiar to why I had a 5th TSC surgery at 45 years old.

Surgery is not an prevention to our " problems " . The body will

naterully create more scare tissue and re-attach the cord and after

your 6 month honeymoon that this was the right descion----I and a

majority of seasoned vets will agree-not worth the time, effort and

money-

it is hard to live with what we have but the magic wand is not a

knife-----I could be wrong?

>

> Hello to everyone,

>

> My name is Sally. I found your group through the adult support

network for people with Spina Bifida. A little about myself: I was

born with Spina Bifida, lipomeningomyeocele, tethered spinal cord. I

am 54 years old and live about 20 miles north of San Francisco. My

spinal problem has resulted in over 28 surgeries mostly to my feet

and legs, however I have had 3 back surgeries two of which were

tethered cord surgeries. The last tethered cord surgery was in 1992

at UCSF. Since around 1997 I have had progressive problems related

to bowel and bladder function, weakness in my legs and inversion of

my left foot. I have discovered that despite the two surgeries my

cord is still tethered at the filum terminale level. However the

doctors who performed the tethered cord surgeries do not want to go

back in again. I have consulted with Dr. McClone in Chicago

about a year and a half ago and am debating about whether to do a

third tethered cord surgery as I know it will ultimately result in

more scarring and possible (perhaps probably) more tethering. I am

hoping for any imput any of you may have as to whether a third

surgery might be beneficial? I would love to hear from any of you

about your own experiences with this problem.

> Thank you

>

> sally

>

>

[Guest guest]

I'll second that

> >

> > Hello to everyone,

> >

> > My name is Sally. I found your group through the adult support

> network for people with Spina Bifida. A little about myself: I was

> born with Spina Bifida, lipomeningomyeocele, tethered spinal cord.

I

> am 54 years old and live about 20 miles north of San Francisco. My

> spinal problem has resulted in over 28 surgeries mostly to my feet

> and legs, however I have had 3 back surgeries two of which were

> tethered cord surgeries. The last tethered cord surgery was in 1992

> at UCSF. Since around 1997 I have had progressive problems related

> to bowel and bladder function, weakness in my legs and inversion of

> my left foot. I have discovered that despite the two surgeries my

> cord is still tethered at the filum terminale level. However the

> doctors who performed the tethered cord surgeries do not want to go

> back in again. I have consulted with Dr. McClone in Chicago

> about a year and a half ago and am debating about whether to do a

> third tethered cord surgery as I know it will ultimately result in

> more scarring and possible (perhaps probably) more tethering. I am

> hoping for any imput any of you may have as to whether a third

> surgery might be beneficial? I would love to hear from any of you

> about your own experiences with this problem.

> > Thank you

> >

> > sally

> >

> >

[Guest guest]

Hi Dianne,

 

My daughter was also born with spine bifida and with tethered cord and hers was

mycomylengia , not sure the other one is occulta as u said. She also had dimple

and hariy skin and was sent to Boston children's hospital and there neursurgeon

Dr. recommended surgery when she was 5 months old and don't ask even for

us those 6 hours were so... long but then everything went well . She is now 7

and few months back she complained about back pain and it was getting worse for

her.

 

It was so.. much worse that we took her back to same NS Dr. . He said that

nothing is much noticeable and he did recommend doing MRI and the urology study.

 

So In MRI they found that scarrin is there around her spine and then urology

study showed that she had some of the reflext changes since she was born.

We never noticed any bladder and bowel moment changes in her. Pain was the only

symptom and after these 2 reports Dr. told that she need another surgery so that

her symtoms doesn't get worse.

 

We again went thru this pain and don't ask everything went well but risks are

always there. Dr. told that as nerves are involved so nobody knows if something

gets damage during surgery.

 

So. 3oth of June her surgery was done. She stayed 8 days in hospital and for 17

days she was on complete bed rest on flat bed . and then last to last week her

bladder moments and bowel moments started normally. And that day was my Happiest

day of life I would say as everybody was still questionnable about it.

 

I would suggest u that defnitely go for MRI and go for Urology study and then

ask Doctors about what exactly is going on. As you don't want her symtoms to get

worse so... just take detailed infor about it from Doctors.

 

Hope you will find good solution to it and ur daugther feels good.

Please don't hesitate to ask any questions.

 

This group is wonderful. I also got a lot info about TCS here.

 

Jas

Subject: Introduction

To: tetheredspinalcord

Date: Tuesday, August 4, 2009, 9:20 AM

 

Hi. My name is Diane and I have a 6-year-old daughter, Christiana, who was born

with tethered cord/spina bifida occulta. At birth the doctor noticed a hairy

patch, skin tag and dimple so she was sent immediately to Boston Children's

Hospital where she was MRI'd and diagnosed. Her nuerosurgeon, Dr. Madsen,

reccomended surgery at 3 months of age. It was a very scary time for us, but we

decided to listen to the doctor and go through with the surgery. That was the

longest 6 hours of my life. But she came through it just fine. Now, 6 years

later, we are having some problems that I'm not sure are related to the surgery

or if there is a possibility of re-tethering. My daughter is unable to control

either her bladder or bowel muscles and so she is catheterized 4-5 times daily.

We are still trying to work on a bowel program for her, but are concerned about

school next year as she will be going for full days. Her urologist tells me that

it is probably just a side

effect of the surgery, but I am not so sure. So, I am trying to get her an

appt. with her nuerosurgeon to do an MRI to check. I was wondering if anyone had

an experience like this and could; 1, give me tips to help her in school, and 2,

let me know if there are other, more definite signs of re-tethering. I may be

overrecating, I'm not sure. It could be that the urologist is right when he says

she doesn't need another MRI. All I can say is that I am so glad I found this

group. All these years I have been trying to answer questions on my own with no

one to talk to about what goes on who actually understands. So, much thanks for

allowing me to join your group.