New Member

[Guest guest]

welcome to the family Jeff.

I live in mentor ohio,just north of Cleveland.

It's nice to have another Ohio crewbie,

Jimmy.

[Guest guest]

I live in Whitehall at 500 S Hamilton rd.

This is weird. I know Gahana is right down the street from me (well

maybe a couple of miles down the street) you would think our paths would

have crossed at some time.

JEFF

[Guest guest]

Welcome to the Crew, ! My name is Donna Hutyra and I am 35 and live in

Texas.

Donna

[Guest guest]

Susie,

Welcome we are a group of very different peoples with many of the same aches and

pains. We come here for support and to learn from others what works and what

doesn't. I hope you get what you came for. Again, welcome to our group.

G.

new member

hello my name is susie i am very new to computers both me and brad

are new to them but want to learn about them...brad is my hubby for

over 20 yars i was told i had fibromyalgia 5 years ago and would

enjoy talking to ppl that really know how i feel would love to meet

new people on here thank you.. hope to hear from you soon e-mail

addy is vikings80_11@...

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 Jacque,

Welcome to the group! I was wondering why you had bladder augmentation.

Bladder/bowel issues are interfering with my ability to work and I'm hoping to

have them addressed this summer (I teach and finding time for appts. during the

school year isn't easy.) I was offered a stimulator for my bladder at my last

appt., which at first sounded great. However, I have an intrathecal pump and

the thoughts of two implanted devices is not anything I would look forward to -

even if it did control my leakage (I self-cath, but leak).

I also need to address foot/toe problems - I have curling/hammer toes. On my

left foot, I've noticed a bone near my baby toe is protruding out now. I have

no idea why this is happening except maybe that there isn't room for it with the

deformities that continue to worsen. I haven't addressed foot deformities since

I first started down this path with LMC ten years ago. Over-due.

What type of foot/feet surgeries did you have? If any were for hammer

toes/rising arches, would you tell whether this problem continued after surgery?

Mine is from continuing spasticity and my fear is that if I had surgery to

correct the issues, the spasticity would make them all return.

Glad you're with us - Your job sounds very interesting. I teach special ed

(Exceptional Children). I love my job and after returning to work after a

nearly ten year absence, I truly appreciate how wonderful it is to be able to

work even though there are many days pain makes it difficult. Still, I wouldn't

trade what the pump did for my pain so I could return to teaching.

Kathy

New Member

Hi!

I just wanted to take a couple minutes to introduce

myself as a new member to this group. I am a member

of other Spina Bifida groups, but this one is new for

me. My name is Jacque (like Jackie) and I am a 27

year old woman born with Spina Bifida myelomeningocele

L5-S1. I am able to walk, have no learning

difficulties, I self-cath (and have since I was 7), I

have a VP shunt, oh and I'm a nurse I work in a

Childrens Hospital in the Medical Rehabilitation Unit-

mostly we have kids with traumatic brain injuries and

spinal cord injuries. I have had tethered cord

release twice- at 10 and 20 years of age; I've had two

VP shunt revisions, multiple foot surgeries, bladder

augmentation, and I had my vesicostomy closed when I

was 7 (so therefore started self-cathing). I noticed

through the posts I have read that a lot of memebers

are actually parents of kids with TC- so I'd just like

to offer myself as a resource if you have any

questions since I am am adult who had had TC twice and

has dealt with a lot of SB issues over the years as

well as being a nurse

Hope everyone is doing well and I look forward to

getting to know you all!

Take Care,

Jacque

[Guest guest]

I am still confused about MRI's showing " re-thethered " ... I thought that

after the first, the MRI is not uselful since they are always tethered? Randee

In a message dated 5/4/2008 7:25:35 A.M. Eastern Daylight Time,

elisaacd@... writes:

Hi Jacque! Welcome to the group. Thank you so much for offering yourself for

questions. I am a 29yr old mother to a 5yr old with lipomyelomeningocelHi

Jacque! Welcome to the group. Thank you so much for offering yourself for

questions. I am a 29yr old mother to a 5yr old with lipomyelomeningocel<WBR>e

and

has had untethering surgery twice. He can walk and run but it looks very

different than other kids. It seems as though he runs with his feet sticking

out

and he doesn't pick them up far, almost like he's shuffling when he runs.

That is why he trips alot. He just had an MRI and it doesn't sh

Nadeau

J W <_nursepooh4@..._ (mailto:nursepooh4@...) > wrote:

Hi!

I just wanted to take a couple minutes to introduce

myself as a new member to this group. I am a member

of other Spina Bifida groups, but this one is new for

me. My name is Jacque (like Jackie) and I am a 27

year old woman born with Spina Bifida myelomeningocele

L5-S1. I am able to walk, have no learning

difficulties, I self-cath (and have since I was 7), I

have a VP shunt, oh and I'm a nurse I work in a

Childrens Hospital in the Medical Rehabilitation Unit-

mostly we have kids with traumatic brain injuries and

spinal cord injuries. I have had tethered cord

release twice- at 10 and 20 years of age; I've had two

VP shunt revisions, multiple foot surgeries, bladder

augmentation, and I had my vesicostomy closed when I

was 7 (so therefore started self-cathing)was 7 (so there

through the posts I have read that a lot of memebers

are actually parents of kids with TC- so I'd just like

to offer myself as a resource if you have any

questions since I am am adult who had had TC twice and

has dealt with a lot of SB issues over the years as

well as being a nurse

Hope everyone is doing well and I look forward to

getting to know you all!

Take Care,

Jacque

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

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[Guest guest]

Hi Jacque! Welcome to the group. Thank you so much for offering yourself for

questions. I am a 29yr old mother to a 5yr old with lipomyelomeningocele and has

had untethering surgery twice. He can walk and run but it looks very different

than other kids. It seems as though he runs with his feet sticking out and he

doesn't pick them up far, almost like he's shuffling when he runs. That is why

he trips alot. He just had an MRI and it doesn't show retethering, he has

actually always run this way. Is it because of his condition or is that just the

way he was born to run? Thanks for all your help.

Nadeau

J W wrote:

Hi!

I just wanted to take a couple minutes to introduce

myself as a new member to this group. I am a member

of other Spina Bifida groups, but this one is new for

me. My name is Jacque (like Jackie) and I am a 27

year old woman born with Spina Bifida myelomeningocele

L5-S1. I am able to walk, have no learning

difficulties, I self-cath (and have since I was 7), I

have a VP shunt, oh and I'm a nurse I work in a

Childrens Hospital in the Medical Rehabilitation Unit-

mostly we have kids with traumatic brain injuries and

spinal cord injuries. I have had tethered cord

release twice- at 10 and 20 years of age; I've had two

VP shunt revisions, multiple foot surgeries, bladder

augmentation, and I had my vesicostomy closed when I

was 7 (so therefore started self-cathing). I noticed

through the posts I have read that a lot of memebers

are actually parents of kids with TC- so I'd just like

to offer myself as a resource if you have any

questions since I am am adult who had had TC twice and

has dealt with a lot of SB issues over the years as

well as being a nurse

Hope everyone is doing well and I look forward to

getting to know you all!

Take Care,

Jacque

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Welcome to the group Jacque! How in the world do you manage to work as a nurse

in a rehab...I too am a nurse but have been unable to work since 2005 and I

worked in Neonatal ICU, tiny patients! I have debilitating nerve pain and take

some meds to get me through each day but I certainly wouldnt be able to work

with the amount of pain I still have, nor would I be able to work if I took any

more as I wouldnt be able to think straight. Randee, I too am a bit confused

about MRI's and retethering, I have heard that the scar tissue from the first

surgery would make it impossible to tell if you are retethered. My NS says by

MRI I am not retethered right now, but my body and symptoms tell a much

different story. Makes no difference as I do not want another surgery and more

scar tissue anyway and even if I did, no insurance. I am going to ask the pain

management doc if there is anything different I can try for pain...I currently

am on Cymbalta and Lyrica but am no where near in good

control and could not afford to " add " anything on top of these (over $300. a

month already). Any one have any suggestions? Narcs do not work for me.

Thanks,

Randeejae@... wrote:

I am still confused about MRI's showing " re-thethered " ... I thought that

after the first, the MRI is not uselful since they are always tethered? Randee

In a message dated 5/4/2008 7:25:35 A.M. Eastern Daylight Time,

elisaacd@... writes:

Hi Jacque! Welcome to the group. Thank you so much for offering yourself for

questions. I am a 29yr old mother to a 5yr old with lipomyelomeningocelHi

Jacque! Welcome to the group. Thank you so much for offering yourself for

questions. I am a 29yr old mother to a 5yr old with lipomyelomeningocel<WBR>e

and

has had untethering surgery twice. He can walk and run but it looks very

different than other kids. It seems as though he runs with his feet sticking out

and he doesn't pick them up far, almost like he's shuffling when he runs.

That is why he trips alot. He just had an MRI and it doesn't sh

Nadeau

J W <_nursepooh4@..._ (mailto:nursepooh4@...) > wrote:

Hi!

I just wanted to take a couple minutes to introduce

myself as a new member to this group. I am a member

of other Spina Bifida groups, but this one is new for

me. My name is Jacque (like Jackie) and I am a 27

year old woman born with Spina Bifida myelomeningocele

L5-S1. I am able to walk, have no learning

difficulties, I self-cath (and have since I was 7), I

have a VP shunt, oh and I'm a nurse I work in a

Childrens Hospital in the Medical Rehabilitation Unit-

mostly we have kids with traumatic brain injuries and

spinal cord injuries. I have had tethered cord

release twice- at 10 and 20 years of age; I've had two

VP shunt revisions, multiple foot surgeries, bladder

augmentation, and I had my vesicostomy closed when I

was 7 (so therefore started self-cathing)was 7 (so there

through the posts I have read that a lot of memebers

are actually parents of kids with TC- so I'd just like

to offer myself as a resource if you have any

questions since I am am adult who had had TC twice and

has dealt with a lot of SB issues over the years as

well as being a nurse

Hope everyone is doing well and I look forward to

getting to know you all!

Take Care,

Jacque

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

now.

[Guest guest]

Everytime has been re-tethered her NSG has done

the prone and supine MRI's. You can actually see the

diffrence on the MRI. had one MRI and the cord

in the prone position did not move. The ones previous

moved! And, I who can not read an MRI could see it

after it was pointed out to me of course!!

Thanks,

Tommi

www.caringbridge.org/visit/amandapeters

--- Clement

wrote:

> Welcome to the group Jacque! How in the world do you

> manage to work as a nurse in a rehab...I too am a

> nurse but have been unable to work since 2005 and I

> worked in Neonatal ICU, tiny patients! I have

> debilitating nerve pain and take some meds to get me

> through each day but I certainly wouldnt be able to

> work with the amount of pain I still have, nor would

> I be able to work if I took any more as I wouldnt be

> able to think straight. Randee, I too am a bit

> confused about MRI's and retethering, I have heard

> that the scar tissue from the first surgery would

> make it impossible to tell if you are retethered. My

> NS says by MRI I am not retethered right now, but my

> body and symptoms tell a much different story.

> Makes no difference as I do not want another surgery

> and more scar tissue anyway and even if I did, no

> insurance. I am going to ask the pain management doc

> if there is anything different I can try for

> pain...I currently am on Cymbalta and Lyrica but am

> no where near in good

> control and could not afford to " add " anything on

> top of these (over $300. a month already). Any one

> have any suggestions? Narcs do not work for me.

> Thanks,

>

> Randeejae@... wrote:

> I am still confused about MRI's showing

> " re-thethered " ... I thought that

> after the first, the MRI is not uselful since they

> are always tethered? Randee

>

>

>

>

> In a message dated 5/4/2008 7:25:35 A.M. Eastern

> Daylight Time,

> elisaacd@... writes:

>

> Hi Jacque! Welcome to the group. Thank you so much

> for offering yourself for

> questions. I am a 29yr old mother to a 5yr old with

> lipomyelomeningocelHi

> Jacque! Welcome to the group. Thank you so much for

> offering yourself for

> questions. I am a 29yr old mother to a 5yr old with

> lipomyelomeningocel<WBR>e and

> has had untethering surgery twice. He can walk and

> run but it looks very

> different than other kids. It seems as though he

> runs with his feet sticking out

> and he doesn't pick them up far, almost like he's

> shuffling when he runs.

> That is why he trips alot. He just had an MRI and it

> doesn't sh

> Nadeau

>

> J W <_nursepooh4@..._

> (mailto:nursepooh4@...) > wrote:

> Hi!

> I just wanted to take a couple minutes to introduce

> myself as a new member to this group. I am a member

> of other Spina Bifida groups, but this one is new

> for

> me. My name is Jacque (like Jackie) and I am a 27

> year old woman born with Spina Bifida

> myelomeningocele

> L5-S1. I am able to walk, have no learning

> difficulties, I self-cath (and have since I was 7),

> I

> have a VP shunt, oh and I'm a nurse I work in a

> Childrens Hospital in the Medical Rehabilitation

> Unit-

> mostly we have kids with traumatic brain injuries

> and

> spinal cord injuries. I have had tethered cord

> release twice- at 10 and 20 years of age; I've had

> two

> VP shunt revisions, multiple foot surgeries, bladder

> augmentation, and I had my vesicostomy closed when I

> was 7 (so therefore started self-cathing)was 7 (so

> there

> through the posts I have read that a lot of memebers

> are actually parents of kids with TC- so I'd just

> like

> to offer myself as a resource if you have any

> questions since I am am adult who had had TC twice

> and

> has dealt with a lot of SB issues over the years as

> well as being a nurse

> Hope everyone is doing well and I look forward to

> getting to know you all!

>

> Take Care,

> Jacque

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it

> now.

>

> [Non-text portions of this message have been

> removed]

>

> **************Wondering what's for Dinner Tonight?

> Get new twists on family

> favorites at AOL Food.

>

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

>

> [Non-text portions of this message have been

> removed]

>

>

www.caringbridge.org/visit/amandapeters

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

,

I have heard too that you cannot tell a retether after someone has surgery

b/c the scar tissue obscures the view. And also because scar tissue is the

source of retethers. But I know others have been diagnosed with a retether

via MRI after surgery. Perhaps it was a CINE MRI that shows cord movement.

Scar tissue shouldn't alter that result. The other thing to consider is that

after untethering, the person will automatically retether from the scar

tissue that forms after surgery. The tether itself is not the problem. It is

when the tether becomes symptomatic. So, I guess the problem is not

necessarily whether a MRI can diagnose a tether, but rather if a MRI can

diagnose a retehter as the source of someone's problems as opposed to some

other cause. After my first surgery, my MRI looked normal, but I was

diagnosed as retethered due to symptoms. When he opened me up - sure enough.

There was extensive scar tissue that my MD said it looked like someone

poured super glue in my back.

As far as your pain, narcotics are often useless when it comes to

controlling neuropathy. They work to control my back pain, but don't do

squat for my neuropathy and leg pains. In fact, I just went to my follow up

appt 2 weeks early. They ordered an x-ray series and offered me a refill on

my breakthrough meds until I get the results son Tues. I turned them down.

I have a ton of them - but the don't fix the problem I need them to fix

right now.

I know how expensive these meds are. Barely any generics, let alone $4 meds.

But if you are on Lyrica and Cymbalta, there are many others you can try

* Depakote (Valporate Sodium - sp? And a $4 generic in one dose, I think). I

took this for chronic headaches. Worked great for pain, but caused me to

gain 40 lbs in 6 months and had to come off of it.

* Tegretol (carbamepazine - a $4 generic). This one worked well for my pain,

but I felt like everything was running in slow motion and it was just too

slow for me to function. But the pain control was great!

* Topamax (no generic unless you're not in US). I took this for about 10

years +/- and it was the best combo of pain control and side effects. Not

perfect at either, but did a decent job of pain control and only 1 really

annoying side effect - caused problems with the verbal area of my brain

making me sound dumb as a box of rocks. Does not cause weight gain.

*amatryptalline (sp - a $4 Rx). Tricyclic antidepressant. According to

journal articles, these are the best as controlling neuropathy and should be

considered a first line drug. They are also CHEAP! But they can have some

annoying side effects.

* Lamicatal (expensive as well, no generic, not used as often for

neuropathy, but have known people to take it

*Keppra (no generic, but name is not very expensive - when compared to other

anti-epileptic Rx). No major side effects. Can cause some weird psych stuff

when you frist start it. I got really weepy and depressed, but most wore off

after 2 weeks and gone by 4 weeks.

*Neurontin (comes in generic, but not $4, I don't' think). It is probably

the most widely used Rx for neuropathy (at least from SCI/D). It worked well

to control my pain, but I slept about 18 hours out of the day.

There are some other options, some of which are inexpensive - if you

haven't yet tried them already. I am on Keppra now, but will likely start

Cymbalta on Tues. If that doesn't work, then its back to Topamax and

sounding like a pain free moron (I can't even blame the pain on why I sound

like an idiot!)

Hope you can find one that works. Unfortunately there Is no easy way to find

the right Rx. It is just a matter of trial and error until you find the one

that provides the best balance between pain control and minimal side

effects.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Clement

Sent: Sunday, May 04, 2008 10:06 AM

To: tetheredspinalcord

Subject: Re: New Member

I have heard that the scar tissue from the first surgery would make it

impossible to tell if you are retethered. My NS says by MRI I am not

retethered right now, but my body and symptoms tell a much different story.

Makes no difference as I do not want another surgery and more scar tissue

anyway and even if I did, no insurance. I am going to ask the pain

management doc if there is anything different I can try for pain...I

currently am on Cymbalta and Lyrica but am no where near in good

control and could not afford to " add " anything on top of these (over $300. a

month already). Any one have any suggestions? Narcs do not work for me.

Thanks,

[Guest guest]

Thanks so much Jenn! I am printing this email and taking it with me to pain

management on Weds (I will black out your name and email) I have tried

Neurontin before and had the sleeping SE as well, do you know, does that

eventually go away if you stay on it long enough? I know when I first went on

the Lyrica I had the same SE but it seems to have adjusted and now I

occasionally have a day like that but at least its not every day. The Cymbalta

has helped me a lot but like you said, no generic. I think I was sleepy on that

too in the begining but no weight gain at least. The Lyrica has definately

helped with the " burning " anal pain but my leg pain actually seems increased. I

am not looking for " pain free " but I would like to try to get it down to a 6 or

so, consistently. I would love to not have to use the wheelchair to shop etc. or

not have sleepless nights due to pain. Am I being unrealistic? Maybe I should

just accept that this is the way it is and try to deal with it. I

understand what you are saying about the tether...and you are right, it really

doesn't matter whether its tethered but whether its symptomatic. If every

surgery is going to cause more scar tissue (which it will) then no more

untethers for me. I will just have to learn to cope somehow. Thanks Jenn for all

the info!! I can tell you,if you start the Cymbalta and decide to get off of it,

go REAL SLOW...it is very powerful (even though it doesnt make you feel dopey)

and I went off for a few months (weaned slowly but not slowly enough) and was

bouncing off of walls I was so dizzy and discombobulated! Ha Ha. Couldnt drive

etc. I wound up going back on as I could not tolerate the pain without it but

learned my lesson

Blessings,

JBobin wrote:

,

I have heard too that you cannot tell a retether after someone has surgery

b/c the scar tissue obscures the view. And also because scar tissue is the

source of retethers. But I know others have been diagnosed with a retether

via MRI after surgery. Perhaps it was a CINE MRI that shows cord movement.

Scar tissue shouldn't alter that result. The other thing to consider is that

after untethering, the person will automatically retether from the scar

tissue that forms after surgery. The tether itself is not the problem. It is

when the tether becomes symptomatic. So, I guess the problem is not

necessarily whether a MRI can diagnose a tether, but rather if a MRI can

diagnose a retehter as the source of someone's problems as opposed to some

other cause. After my first surgery, my MRI looked normal, but I was

diagnosed as retethered due to symptoms. When he opened me up - sure enough.

There was extensive scar tissue that my MD said it looked like someone

poured super glue in my back.

As far as your pain, narcotics are often useless when it comes to

controlling neuropathy. They work to control my back pain, but don't do

squat for my neuropathy and leg pains. In fact, I just went to my follow up

appt 2 weeks early. They ordered an x-ray series and offered me a refill on

my breakthrough meds until I get the results son Tues. I turned them down.

I have a ton of them - but the don't fix the problem I need them to fix

right now.

I know how expensive these meds are. Barely any generics, let alone $4 meds.

But if you are on Lyrica and Cymbalta, there are many others you can try

* Depakote (Valporate Sodium - sp? And a $4 generic in one dose, I think). I

took this for chronic headaches. Worked great for pain, but caused me to

gain 40 lbs in 6 months and had to come off of it.

* Tegretol (carbamepazine - a $4 generic). This one worked well for my pain,

but I felt like everything was running in slow motion and it was just too

slow for me to function. But the pain control was great!

* Topamax (no generic unless you're not in US). I took this for about 10

years +/- and it was the best combo of pain control and side effects. Not

perfect at either, but did a decent job of pain control and only 1 really

annoying side effect - caused problems with the verbal area of my brain

making me sound dumb as a box of rocks. Does not cause weight gain.

*amatryptalline (sp - a $4 Rx). Tricyclic antidepressant. According to

journal articles, these are the best as controlling neuropathy and should be

considered a first line drug. They are also CHEAP! But they can have some

annoying side effects.

* Lamicatal (expensive as well, no generic, not used as often for

neuropathy, but have known people to take it

*Keppra (no generic, but name is not very expensive - when compared to other

anti-epileptic Rx). No major side effects. Can cause some weird psych stuff

when you frist start it. I got really weepy and depressed, but most wore off

after 2 weeks and gone by 4 weeks.

*Neurontin (comes in generic, but not $4, I don't' think). It is probably

the most widely used Rx for neuropathy (at least from SCI/D). It worked well

to control my pain, but I slept about 18 hours out of the day.

There are some other options, some of which are inexpensive - if you

haven't yet tried them already. I am on Keppra now, but will likely start

Cymbalta on Tues. If that doesn't work, then its back to Topamax and

sounding like a pain free moron (I can't even blame the pain on why I sound

like an idiot!)

Hope you can find one that works. Unfortunately there Is no easy way to find

the right Rx. It is just a matter of trial and error until you find the one

that provides the best balance between pain control and minimal side

effects.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Clement

Sent: Sunday, May 04, 2008 10:06 AM

To: tetheredspinalcord

Subject: Re: New Member

I have heard that the scar tissue from the first surgery would make it

impossible to tell if you are retethered. My NS says by MRI I am not

retethered right now, but my body and symptoms tell a much different story.

Makes no difference as I do not want another surgery and more scar tissue

anyway and even if I did, no insurance. I am going to ask the pain

management doc if there is anything different I can try for pain...I

currently am on Cymbalta and Lyrica but am no where near in good

control and could not afford to " add " anything on top of these (over $300. a

month already). Any one have any suggestions? Narcs do not work for me.

Thanks,

[Guest guest]

Hhhm, I don't know how to answer your question, sorry.

I run funny too though if that helps LOL.

Jacque

--- Nadeau wrote:

> Hi Jacque! Welcome to the group. Thank you so much

> for offering yourself for questions. I am a 29yr old

> mother to a 5yr old with lipomyelomeningocele and

> has had untethering surgery twice. He can walk and

> run but it looks very different than other kids. It

> seems as though he runs with his feet sticking out

> and he doesn't pick them up far, almost like he's

> shuffling when he runs. That is why he trips alot.

> He just had an MRI and it doesn't show retethering,

> he has actually always run this way. Is it because

> of his condition or is that just the way he was born

> to run? Thanks for all your help.

> Nadeau

>

> J W wrote:

> Hi!

> I just wanted to take a couple minutes to introduce

> myself as a new member to this group. I am a member

> of other Spina Bifida groups, but this one is new

> for

> me. My name is Jacque (like Jackie) and I am a 27

> year old woman born with Spina Bifida

> myelomeningocele

> L5-S1. I am able to walk, have no learning

> difficulties, I self-cath (and have since I was 7),

> I

> have a VP shunt, oh and I'm a nurse I work in a

> Childrens Hospital in the Medical Rehabilitation

> Unit-

> mostly we have kids with traumatic brain injuries

> and

> spinal cord injuries. I have had tethered cord

> release twice- at 10 and 20 years of age; I've had

> two

> VP shunt revisions, multiple foot surgeries, bladder

> augmentation, and I had my vesicostomy closed when I

> was 7 (so therefore started self-cathing). I noticed

> through the posts I have read that a lot of memebers

> are actually parents of kids with TC- so I'd just

> like

> to offer myself as a resource if you have any

> questions since I am am adult who had had TC twice

> and

> has dealt with a lot of SB issues over the years as

> well as being a nurse

> Hope everyone is doing well and I look forward to

> getting to know you all!

>

> Take Care,

> Jacque

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Kathy,

I will hopefully answer all of your questions- if I

don't let me know please!

I had bladder augmentation when I was 16 because I

got recurrent kidney infections and they did

urodynamics and discovered my bladder didn't expand

when it got full- I just had reflux or leaked. Trust

me, it took a few months for them to figure it out- my

urologist actually told my mom it was because I didnt'

cath frequently enough but we told him that wasn't it

and he ordered more tests and realized it wasn't

I've always been good about cathing on time. I had to

irrigate my bladder every day for a while after my

surgery, then graduaally decreasing the frequency and

have since stopped doing that due to no more mucous.

Next question....foot surgeries. I've had a lot.

After my first tethered cord surgery, I had tendon

transfers and lengthenings on both feet including my

achilles. They also fused some toes (the joitns in

them) to keep them from being hammer toes. I now wish

they had honestly done all of my toes because the ones

I haven't had surgery on are becoming worse. I had my

big toe and little toe on my right foot worked on in

January of 2006- he lengthened the tendons and fused

the joints. Unfortuantely, the little toe is next to

a toe that is starting to curl sideways so it sticks

out weird. I really need to have the other toes fixed

but with work and money I jsut haven't had the heart

to go to my ortho doc again. Ths surgery wasn't bad-

I just don't like being off of work and then on

restricted duty for so long.

Take Care!

Jacque

--- DK Moulton wrote:

> Hi Jacque,

>

> Welcome to the group! I was wondering why you had

> bladder augmentation. Bladder/bowel issues are

> interfering with my ability to work and I'm hoping

> to have them addressed this summer (I teach and

> finding time for appts. during the school year isn't

> easy.) I was offered a stimulator for my bladder at

> my last appt., which at first sounded great.

> However, I have an intrathecal pump and the thoughts

> of two implanted devices is not anything I would

> look forward to - even if it did control my leakage

> (I self-cath, but leak).

>

> I also need to address foot/toe problems - I have

> curling/hammer toes. On my left foot, I've noticed

> a bone near my baby toe is protruding out now. I

> have no idea why this is happening except maybe that

> there isn't room for it with the deformities that

> continue to worsen. I haven't addressed foot

> deformities since I first started down this path

> with LMC ten years ago. Over-due.

>

> What type of foot/feet surgeries did you have? If

> any were for hammer toes/rising arches, would you

> tell whether this problem continued after surgery?

> Mine is from continuing spasticity and my fear is

> that if I had surgery to correct the issues, the

> spasticity would make them all return.

>

> Glad you're with us - Your job sounds very

> interesting. I teach special ed (Exceptional

> Children). I love my job and after returning to

> work after a nearly ten year absence, I truly

> appreciate how wonderful it is to be able to work

> even though there are many days pain makes it

> difficult. Still, I wouldn't trade what the pump

> did for my pain so I could return to teaching.

>

> Kathy

> New Member

>

>

> Hi!

> I just wanted to take a couple minutes to

> introduce

> myself as a new member to this group. I am a

> member

> of other Spina Bifida groups, but this one is new

> for

> me. My name is Jacque (like Jackie) and I am a 27

> year old woman born with Spina Bifida

> myelomeningocele

> L5-S1. I am able to walk, have no learning

> difficulties, I self-cath (and have since I was

> 7), I

> have a VP shunt, oh and I'm a nurse I work in a

> Childrens Hospital in the Medical Rehabilitation

> Unit-

> mostly we have kids with traumatic brain injuries

> and

> spinal cord injuries. I have had tethered cord

> release twice- at 10 and 20 years of age; I've had

> two

> VP shunt revisions, multiple foot surgeries,

> bladder

> augmentation, and I had my vesicostomy closed when

> I

> was 7 (so therefore started self-cathing). I

> noticed

> through the posts I have read that a lot of

> memebers

> are actually parents of kids with TC- so I'd just

> like

> to offer myself as a resource if you have any

> questions since I am am adult who had had TC twice

> and

> has dealt with a lot of SB issues over the years

> as

> well as being a nurse

> Hope everyone is doing well and I look forward to

> getting to know you all!

>

> Take Care,

> Jacque

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

Sorry Kathy, hate to disagree but I have found it extrememly difficult to find

surgeons, doctors, nurses, Neurologists etc with experience with TC. No, it is

not an extremely rare condition, and some may have heard of it but to have

personal experience is rare indeed. I am sure you will be in good hands at Mayo

though Jane. I am not sure about shunting the syrinx. Since I don't personally

have one (that I know of, haven't had a full spine MRI) I have never had to

research that much. I would say that since we (TC people) tend to overcompensate

with scar tissue, beware of any surgeries. I do know that TC is commonly missed

on MRI so I would rely more on symptoms that MRI's. There are many that have had

negative MRI's and then when they go in it looks like a super-glued mess in

there with adhesions and scar tissue. I am sorry that you are going through all

this but if it is any consolation, know that there are many of us out there

going through it with

you. It is VERY frustrating trying to deal with this, especially without proper

medical support. Personally, I believe I am retethered due to symptoms (negative

L-spine MRI) but will avoid another surgery at all costs due to the same things

Kathy was talking about. It's just not worth it for me. I try to find ways to

deal with the nerve pain (meds and rest mostly, using a cane and or wheelchair

when I need to) and I am lucky that as long as I stay close to a bathroom I can

usually make it. I have had a couple of incidents but not enough to warrant

surgery. Good luck at Mayo, I hope they are able to help you. In the meantime,

hang in there and feel free to write anytime. All questions are welcome, all

info appreciated.            

 Many Blessings,

Subject: Re: New Member

To: tetheredspinalcord

Date: Sunday, June 29, 2008, 4:59 PM

Hi Jane,

I think it's a misnomer that specialists (ie: neurologists and neurosurgeons) do

not know about tethered cord. It's not a rarely seen, incredible anomaly that

they see once in a lifetime - it's a condition that can occur due to previous

surgery, accidents, and of course a birth defect. There are so many types, so

many ways it will affect people ... if you have a specialist that doesn't know a

lot about tethered cords, you move on to a more populated area and you'll find

plenty that have experience with this condition. This is not to say it's a

common dx...but it's not the holy grail of medical dx's either.

That said - from what I've been told it is unusual to have an adult that has a

tethered cord due to a birth defect that is undiagnosed until adulthood.. I was

diagnosed with lipopmeningocele at 36. I've had five untetherings and I am

retethered; symptomatically and anatomically. I won't have any further

untetherings though - each one did the same thing as you describe below.. I

initially felt better with most of the surgeries, then got worse. With each

surgery new symptoms came on and then new symptoms would eventually rear their

head months later. A slippery slope.

I do not have a syrinx, but from what I've read, it can bring on symptoms that

are similar/same as those with tethered cord. I don't know how they treat it -

but I can tell you at the risk of repeating myself, I would not fear finding a

neurosurgeon (nsg) that is experienced with this condition. The bigger the

facility and the more populated the area that you seek treatment in the better

chance you have of finding someone that is very experienced..

I wish you tons of good luck with this next venture and hopefully this will be

your last one with this condition!

Kathy

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

I'm going on my own experience and ten years on this and the first list - I

lived in a rural area of Maine and between Portland and Boston had no problems

finding versed specialists. I now live in NC and in a metropolis area

(especially when compared with Maine), and again find that I am very good hands.

There are specialists that those with tethered cord tend to go to more often and

I'm sure people on the list can help you with common neuros and where they are.

Hopefully one will be near you or within driving distance.

Kathy

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

Honestly - be so very grateful that it's not worse. This is the mantra that has

gotten me through being what would be considered perfectly " normal " before

symptoms started and the ultimate diagnosis. Going from step aerobics more

times a week than I can count, raising four children and being extremely active

with them, who are very close in age and were young when I was diagnosed to

someone at times crippled with pain, at one point unable to use my left leg, and

all sorts of what I consider degrading issues (bowel and bladder).

Sorry - I'm tired so this isn't coming out as compassionately I hope to sound,

but if you can't find it in you to be grateful for it not being worse, for not

having some support system, for not having the medical technology that was able

to diagnose you, for being able to walk (if you are able), to breathe without a

machine, and to live to your mid-forties without symptoms, then I don't know

what else would get you through.

I look at it this way: I was dx'ed at 36, after my children were born, and my

diagnose could have been so much worse if the right conditions during formation

occurred. Instead, I was lucky - I was spared continual surgeries as a child,

spared knowing I had a birth defect, spared worrying about yet other issues

during pregnancies, and spared so much more. Just the way I get through it -

I'm sure there are others out there that can help with other ways.

Kathy

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

Thanks , your words of encouragement mean a lot.

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

It takes time to get by on being grateful. I went through the guilt also in the

beginning - I taught and now again teach in the area of special education. I've

taught a few children with what I would consider fairly severe cases of SB and

one student that has the most severe case I've ever seen or heard of. I knew

first-hand what I needed to be grateful for. However, that didn't stop me from

being quite angry at the roll of the dice that has made my life change

drastically - chronic pain that kept me from doing much beyond the " have to " .

The spasticity, the neuro problems that caused many issues that were visible -

horrible looking feet all of a sudden, cathing, then bowel trouble, then

diagnosed with Chiari from symptoms I ignored for years, etc. A multitude of

other neuro problems that I deal with daily.

Funny, it was the cathing that put me over the edge and almost cost me my life.

I couldn't imagine having to cath for the remainder of my life. Found it the

most degrading thing in the world. Now? I could care less and actually have

found positives (side of the road pee stop - no getting pee on my pants from

crouching).

I hated what it did to my family. The games I missed due to pain or surgery.

All I missed and they missed because of this. Then I realized how much we

gained. My kids are all grown now, 21-27 and they all say the same thing; they

are more compassionate and more understanding especially of hidden disabilities

and those that may look different or walk differently and what they must go

through daily than they ever would have been if I hadn't been diagnosed. I am

blessed in many ways to have had this condition. It changed my life for the

better in many, many ways and made my life hell in many ways (financial for one

for many years until I had a pump put in for pain and was finally able to return

to work last year).

You just have to find your way, be patient with yourself, remember that as hard

as it is on us, it's harder on those that love us, and that this too shall pass.

I'm not a very religious person, but I do believe in this - it will pass.

Something will come along and make your life bearable - the pain bearable, the

symptoms bearable and you won't get the life back you had before (more than

likely) but it will be a compromise you're willing to take because it's

improvement in life quality.

Be patient with yourself, learn to recognize the signs of depression in case it

starts to rear its ugly head, find things to do with your family that replace

what you used to be able to do, learn all you can about your condition and make

smart decisions with your gut, and be grateful when you're ready to be. Do not

feel guilty though - waste of time - huge waste of time and energy which those

with medical conditions do not have tons of - energy is vital for us - do not

feel guilty. It's a process and you'll find your way. Your own way. I didn't

mean to sound like you should get by, right this second on feeling grateful. As

I said, I am tired and I know I wasn't sounding as compassionate as I felt. I

apologize - it all takes time and it's a journey that you'll get through by

being patient with yourself, your loved ones, and your body.

Kathy

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

We all have our grieving period Jane, and you should, just don't get lost in it.

I personally am VERY grateful for everything I have but that doesn't mean that

once in a while I don't have an off period. It is ok to have compassion for

yourself. I have found that surrounding myself with the things that I love ie my

dogs, horses, plants etc helps keep me in the present moment which is usually a

great place to be. When the pain is too much then I knock myself out with meds.

Most of the time, I can alternate what I am doing from sitting to standing to

laying or whatever, gentle stretches help but sometimes, nothing helps and I

just need to get away from it. I love my art because it helps me get focused on

something besides my pain, actually, probably 80% of my pain control is in the

form of distraction, at least until I get on a good med regimine. Please be kind

to yourself. Try not to beat yourself up over not being able to accept it all

without a tear,

it is all part of the process and if you ever needed to love yourself, it is

now.                   Blessings,

Subject: Re: New Member

To: tetheredspinalcord

Date: Monday, June 30, 2008, 12:37 AM

Maybe that is why I feel so bad, because I know it could be so much worse. I

should be able to handle it better. I have a wonderful husband and two great

kids, and yes, I'm still walking. I think besides dealing with issues (pain and

bladder) and I'm upset with myself that I'm not recognizing all the good things

in my life. Believe me I know it could be worse, lots worse.

Jane

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane

[Guest guest]

In a message dated 6/29/2008 8:37:25 P.M. Eastern Daylight Time,

jjoyce55116@... writes:

I'm still walking. I think besides dealing with issues (pain and bladder)

and I'm upset with myself that I'm not recognizing all the good things in my

life. Believe me I know it could be worse, lots worse

Jane, yes it COULD be worse, a lot worse, but to YOU, this is YOUR worst...

and you have every right to take the time you need (and throw a bit of self

pity in there too!) to deal with this It's still no fun to deal with pain

and bladder issues daily when you've lived most of your life " normally " so far,

and will take time to come to terms with this. Fingers crossed for you that

it stabilizes here, and you can learn to bring these symptoms to a

manageable place with the docs help.

Connie

Mom to Sara 16, 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

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Thanks for the support, I think realizing that things are different and I'm

learning to appreciate all the good things in my life.  I struggle with my

condition taking over my life, to a certain degree it already has and coming to

terms with the losses. I'm definitely learning a lot of myself throughout the

process, which is good.

 

 Jane

New Member

Hello all:

I'm new to the group. I never knew that I had tethered cord syndrome

until I took a fall down the stairs 4 years ago at the age of 44.

(totally asymptomatic before this event) Within a few months I had

progressive symptoms that included pain, numbness, tingling and

bladder issues. By the end of 2004 I had a decompressive laminoplasty

with release of filum terminale. Following the surgery I had about 6

months of feeling very good. All of the symptoms I mentioned were

better. Gradually, I started to get worse and then plateaued,

within the last 6-8 months I've been getting worse. A lot more nerve

pain and increased episodes of incontinence. My NS is referring me to

the Mayo Clinic for an evaluation and a second opinion.

I have to admit that I'm fearful that they will say that I'm

re-tethered (but my most recent MRI don't indicate that) and I'm also

fearful that they will say that they can't do anything for me. I'm

not sure what I want to hear the doctors say. It would be nice if they

said everything will be okay, but I think that might be unrealistic.

The most recent MRI shows a new Syrinx which the NS said is quite

long, but not wide, which she said is good. Does anyone know about

Syrinx? Is putting in a shunt the only way to collapse the syrinx?

What I'm finding is that most people even those in the health care

field don't know much about tethered spinal cords. It is difficult to

try and explain my situation and how I feel. To most people I look

perfectly fine. I do my best to go to work everyday and fulfill my

responsibilities, but I really feel I'm alone even though I have an

extremely support family. I know that I'm very lucky, but it seems to

be getting more difficult each day. If anyone has any advice on how

to deal with our situation.

Thanks for listening.

Jane