Welcome B.J.! My name is Summer. I am close to your age at 25. I am also in
a wheelchair full time. Just wanted to say hi!

Summer


In a message dated 1/4/2009 5:11:54 P.M. Eastern Standard Time,
no_reply@yahoogroups.com writes:




Hi My name is B.J. Reynolds. I am 28 years old. I have Spina Bifida since I
was born. I am in
a wheelchair all the time. I just wanted to introduce  myself and to make
some new friends.
Have a good and I hope to hear from  you guys soon.....




**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

Hi Debbie.

Knew a BJ some time ago who lived in Scranton PA where are u from? take care!
Charlie in Connecticut!

No Good Deed Goes Unpunished!

--- On Sun, 1/4/09, bj_reynolds2001 <no_reply@yahoogroups.com> wrote:

From: bj_reynolds2001 <no_reply@yahoogroups.com>
Subject: [Spina Bifida Central] Hey
To: spinabifidacentral@yahoogroups.com
Date: Sunday, January 4, 2009, 5:11 PM






Hi My name is B.J. Reynolds. I am 28 years old. I have Spina Bifida since I was
born. I am in
a wheelchair all the time. I just wanted to introduce myself and to make some
new friends.
Have a good and I hope to hear from you guys soon.....















[Non-text portions of this message have been removed]

Hi My name is B.J. Reynolds.  I am 28 years old.  I have Spina Bifida since I
was born.  I am in
a wheelchair all the time. I just wanted to introduce myself and to make some
new friends.
Have a good and I hope to hear from you guys soon.....

--- In spinabifidacentral@yahoogroups.com, "born2teach2000"
<born2teach2000@...> wrote:
>
> Hi!
>    I am new to this so I am going to try. I am anxious to be able to
> communicate with others born with SB. I am 34 years old, married, and
> am a teacher. I am interested in hearing from other women( especially
> those who have had children)
>
> Thanks, Debbie
>
Hi Debbie. I am 27 yrs old and was born with Spina Bifida. I am married
as well and we have 2 children together, who don't have SB. I am
interested in hearing from women too who have SB and have children.

Lia

--- In spinabifidacentral@yahoogroups.com, "krista_d79"
<krista_d79@...> wrote:
>
> Hello,
> This is new to me.  I have never encountered anyone else with spina
> bifida other than myself.  I am hoping to meet people that I can call
> my friend and share my thoughts and feeling on having this
> birthdefect.  I am looking forward to getting to know you all.
> God bless!
> Krista
>
Hi Krista. My name is Lisa and I was born with Spina Bifida. Welcome to
the group!!

Lisa

Darryl:? I've thought that too:??Just do the surgery, I'm not going to get
any?better without taking the risk, and its better than withering away ----? But
then I also don't want someone digging in my back who doesn't want to be there!?
I want a surgeon who who at least wants to help me!
-Heather


[Non-text portions of this message have been removed]

Yes, tethered cord is when the spinal cord gets caught on the scar tissue around
your lesion.? It is often diagnosed when kids hit a growth spurt and the cord
and nerves are stretched.? So yes, it feels like the nerves are being pulled.?
When I had my?cord released (age 11) there was so much tension on my cord that
it slipped up my spinal column 2 inches while I was on the O.R. table!? The cord
can become re-attached (re-tethered). Subsequent release procedures are more
risky because there is less tissue to work with and more chance of hitting vital
nerves, causing more damage.


[Non-text portions of this message have been removed]

A lot...lol. Surgery was done when it shouldn't have been done. That was  the
biggest problem. 2 days after the surgery when my mom finally saw the
surgeon he told her "She was lucky she still could use her hands." Scar tissue 
was
all the way up my back. Before surgery I could move my hips a little and  feel
to my hips. After surgery I was paralyzed from about chest down and have
stomach spasms which have just been recently diagnosed as myocolonic seizures.
After the tether cord surgery I still had to have the bladder surgery that they
  were trying to avoid in the first place, which caused even more problems.
So, I  was in and out of the hospital for a good year. I had about 8 or 9
surgeries  during that time and also ended up with mono because of the hospital
putting a  girl with mono in the same room as me when I had absolutely no immune
system.  Not a fun year.

Summer


In a message dated 1/3/2009 10:19:42 A.M. Eastern Standard Time,
lisamarien1981@... writes:

Summer  sorry to hear that. What went  wrong??

**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

--- In spinabifidacentral@yahoogroups.com, LightningGrl2121@... wrote:
>
> Oh they can make you much worse if they do screw up. It happened to
me. I
> was paralyzed a lot more then what I was before surgery. It isn't fun.
>
> Summer
>
>
> In a message dated 1/2/2009 9:08:02 P.M. Eastern Standard Time,
> sendtodaryl@... writes:
>
>
>
>
> I am finding the same thing ,, I am comforted by the fact I am not
alone in
> my pain and frustration.
>
> Don't you just hate those words,,"I could make  you worse".. Like I
am having
> a great life with
> all this pain.and falling  down. lol. I even considered telling him
to do it
> anyway and just cut the dang  nerve
> no matter what happens .. my big problem is I need sleep. I can get
  kinda
> grumpy with little sleep.
>
> Daryl
>
> I grew up near Pittsburgh  PA and had great care there, but when I
moved to
> Northern CA, I moved away  from my entire medical support system.?
Any SB
> clinics are for pediatrics only  and they will not take new adult
patients, so I'm
> left with doctors who don't  have a clue about SB care.? I saw the
> neurosurgeons at UCSF, where they are  supposed to be great.? They
took a look at my MRI
> and said "We can't guarantee  we can make you better, but we could
make you
> worse." - so they don't want to  touch me!? So my only option seems
to be to
> wither away - not a great option  in my opinion!
>
> I don't have any clever answers, but it's kind of  helpful to know
there are
> several of us in the same  boat.
> -Heather
>
> [Non-text portions of this message have been  removed]
>
> It sounds like several of us are in the same boat.? I had my  first
cord
> release when I was 11.? Now it seems to be tethered again - I am
losing function
> and feeling?in my left leg and foot.? My balance is getting  worse,
and if I
> start to fall, I cannot regain my balance.? I have also been
dealing with
> changes in my bowel function.?
>
> __________________________________________________________
> Instant  Messaging, free SMS, sharing photos and more... Try the new
Yahoo!
> Canada  Messenger at _http://ca.beta.http://ca.http://ca._
> (http://ca.beta.messenger.yahoo.com/)
>
> [Non-text  portions of this message have been removed]
>
>
>
>
> **************New year...new news.  Be the first to know what is making
> headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)
>
>
> [Non-text portions of this message have been removed]
>
Summer sorry to hear that. What went wrong??

Lisa

Hi I am new here and I have learned so much all ready reading the e-
mails. I am 64 years old and was born with spina bifida . I can walk ok
and my spin was closed at birth. I have been incontinent all my life as
a result of the spina bifida. It is good to have a site like this. I
have learned how to handle the incontinence for different situations
and if any one would like to talk about this feel free to e-mail me.
Is there any lady's in the north Texas area that have spina bifida that
would like to have some one to talk to. It would be nice to have a lady
to talk to that understands what it is to have spina bifida. Please e-
mail me at
Woodys111@...

Oh they can make you much worse if they do screw up. It happened to me. I
was paralyzed a lot more then what I was before surgery. It isn't fun.

Summer


In a message dated 1/2/2009 9:08:02 P.M. Eastern Standard Time,
sendtodaryl@... writes:




I am finding the same thing ,, I am comforted by the fact I am not alone in
my pain and frustration.

Don't you just hate those words,,"I could make  you worse".. Like I am having
a great life with
all this pain.and falling  down. lol. I even considered telling him to do it
anyway and just cut the dang  nerve
no matter what happens .. my big problem is I need sleep. I can get  kinda
grumpy with little sleep.

Daryl

I grew up near Pittsburgh  PA and had great care there, but when I moved to
Northern CA, I moved away  from my entire medical support system.? Any SB
clinics are for pediatrics only  and they will not take new adult patients, so
I'm
left with doctors who don't  have a clue about SB care.? I saw the
neurosurgeons at UCSF, where they are  supposed to be great.? They took a look
at my MRI
and said "We can't guarantee  we can make you better, but we could make you
worse." - so they don't want to  touch me!? So my only option seems to be to
wither away - not a great option  in my opinion!

I don't have any clever answers, but it's kind of  helpful to know there are
several of us in the same  boat.
-Heather

[Non-text portions of this message have been  removed]

It sounds like several of us are in the same boat.? I had my  first cord
release when I was 11.? Now it seems to be tethered again - I am  losing
function
and feeling?in my left leg and foot.? My balance is getting  worse, and if I
start to fall, I cannot regain my balance.? I have also been  dealing with
changes in my bowel function.?

__________________________________________________________
Instant  Messaging, free SMS, sharing photos and more... Try the new Yahoo!
Canada  Messenger at _http://ca.beta.http://ca.http://ca._
(http://ca.beta.messenger.yahoo.com/)

[Non-text  portions of this message have been removed]




**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

I am finding the same thing ,, I am comforted by the fact I am not alone in my
pain and frustration.

Don't you just hate those words,,"I could make you worse".. Like I am having a
great life with
all this pain.and falling down. lol.  I even considered telling him to do it
anyway and just cut the dang nerve
no matter what happens .. my big problem is I need sleep.  I can get kinda
grumpy with little sleep.


Daryl



I grew up near Pittsburgh PA and had great care there, but when I moved to
Northern CA, I moved away from my entire medical support system.? Any SB clinics
are for pediatrics only and they will not take new adult patients, so I'm left
with doctors who don't have a clue about SB care.? I saw the neurosurgeons at
UCSF, where they are supposed to be great.? They took a look at my MRI and said
"We can't guarantee we can make you better, but we could make you worse." - so
they don't want to touch me!? So my only option seems to be to wither away - not
a great option in my opinion!

I don't have any clever answers, but it's kind of helpful to know there are
several of us in the same boat.
-Heather

[Non-text portions of this message have been removed]

It sounds like several of us are in the same boat.? I had my first cord release
when I was 11.? Now it seems to be tethered again - I am losing function and
feeling?in my left leg and foot.? My balance is getting worse, and if I start to
fall, I cannot regain my balance.? I have also been dealing with changes in my
bowel function.?


       __________________________________________________________________
Instant Messaging, free SMS, sharing photos and more... Try the new Yahoo!
Canada Messenger at http://ca.beta.messenger.yahoo.com/

[Non-text portions of this message have been removed]

--- In spinabifidacentral@yahoogroups.com, jenjay@... wrote:
>
> Lisa-- Found this page that sort of explains it.
>
> Btw, I still can't get into my Yahoo messenger!!!
>
>
> Jenny
> **************New year...new news.  Be the first to know what is making
> headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)
>
>
> [Non-text portions of this message have been removed]
>
oh sorry jenny

lisa

_NeurosurgeryToday.org  | What is Neurosurgery | Patient Education Materials
| tethered spinal cord_
(http://www.neurosurgerytoday.org/what/patient_e/tethered.asp)
**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

Lisa-- Found this page that sort of explains it.

Btw, I still can't get into my Yahoo messenger!!!


Jenny
**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

It could. Not sure though.

Summer


In a message dated 1/2/2009 8:46:54 P.M. Eastern Standard Time,
lisamarien1981@... writes:

So  does tethered cord have anything to do with the pulling of nerves??
The  pain I get in my lower back feels like a pulling  sensation.

**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

--- In spinabifidacentral@yahoogroups.com, LightningGrl2121@... wrote:
>
> I'm not on it much, but sure. _LightningPrincess21@..._
> (mailto:LightningPrincess21@...) . I  also have AIM LightningLove54.
>
> Summer
>
>
> In a message dated 1/2/2009 8:25:10 P.M. Eastern Standard Time,
> lisamarien1981@... writes:
>
> Summer  can I add you to my yahoo  messenger??
>
> **************New year...new news.  Be the first to know what is making
> headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)
>
>
> [Non-text portions of this message have been removed]
>
So does tethered cord have anything to do with the pulling of nerves??
The pain I get in my lower back feels like a pulling sensation.

Lisa

I'm not on it much, but sure. _LightningPrincess21@..._
(mailto:LightningPrincess21@...) . I  also have AIM LightningLove54.

Summer


In a message dated 1/2/2009 8:25:10 P.M. Eastern Standard Time,
lisamarien1981@... writes:

Summer  can I add you to my yahoo  messenger??

**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

--- In spinabifidacentral@yahoogroups.com, LightningGrl2121@... wrote:
>
> tether cord is when the spinal cord is pulled down usually by scar
tissue.
>
> Summer
>
>
> In a message dated 1/2/2009 8:17:44 P.M. Eastern Standard Time,
> lisamarien1981@... writes:
>
> Okay  basically what is tethered cord and how does it  happen??
>
> **************New year...new news.  Be the first to know what is making
> headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)
>
>
> [Non-text portions of this message have been removed]
>
Summer can I add you to my yahoo messenger??

Lisa

tether cord is when the spinal cord is pulled down usually by scar  tissue.

Summer


In a message dated 1/2/2009 8:17:44 P.M. Eastern Standard Time,
lisamarien1981@... writes:

Okay  basically what is tethered cord and how does it  happen??

**************New year...new news.  Be the first to know what is making
headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)


[Non-text portions of this message have been removed]

--- In spinabifidacentral@yahoogroups.com, hcmerrell@... wrote:
>
> It sounds like several of us are in the same boat.? I had my first
cord release when I was 11.? Now it seems to be tethered again - I am
losing function and feeling?in my left leg and foot.? My balance is
getting worse, and if I start to fall, I cannot regain my balance.? I
have also been dealing with changes in my bowel function.?
>
> I grew up near Pittsburgh PA and had great care there, but when I
moved to Northern CA, I moved away from my entire medical support
system.? Any SB clinics are for pediatrics only and they will not take
new adult patients, so I'm left with doctors who don't have a clue
about SB care.? I saw the neurosurgeons at UCSF, where they are
supposed to be great.? They took a look at my MRI and said "We can't
guarantee we can make you better, but we could make you worse." - so
they don't want to touch me!? So my only option seems to be to wither
away - not a great option in my opinion!
>
> I don't have any clever answers, but it's kind of helpful to know
there are several of us in the same boat.
> -Heather
>
>
> [Non-text portions of this message have been removed]
>
Okay basically what is tethered cord and how does it happen??

It sounds like several of us are in the same boat.? I had my first cord release
when I was 11.? Now it seems to be tethered again - I am losing function and
feeling?in my left leg and foot.? My balance is getting worse, and if I start to
fall, I cannot regain my balance.? I have also been dealing with changes in my
bowel function.?

I grew up near Pittsburgh PA and had great care there, but when I moved to
Northern CA, I moved away from my entire medical support system.? Any SB clinics
are for pediatrics only and they will not take new adult patients, so I'm left
with doctors who don't have a clue about SB care.? I saw the neurosurgeons at
UCSF, where they are supposed to be great.? They took a look at my MRI and said
"We can't guarantee we can make you better, but we could make you worse." - so
they don't want to touch me!? So my only option seems to be to wither away - not
a great option in my opinion!

I don't have any clever answers, but it's kind of helpful to know there are
several of us in the same boat.
-Heather


[Non-text portions of this message have been removed]

HI, I haven't been on here in awhile. My son is 16 now and this board
was so helpful when he was younger. We are looking to relocate in New
Mexico. It will be around the Las Cruces area. I am just wondering
about doctors in the area? He still sees neuro, ortho, and uro on a
regular basis. Anyone have any suggestions? Or do you head over to El
Paso. Also, what kind of help does the state have. In Michigan we have
a fund called Children's Special Health Care Services. It pays for
anything that our insurance doesn't. Anything like that there? Any info
would be helpful. Thanks
Kathi

Wow we have a lot in common .. but I have a theory... lol.

I will say to this point it has not been confirmed and doctors hate when you
offer your own opinion especially when they are in a specialty.  So I tread
carefully.

I confess I don't know what a syrinx is..

My left leg has spasms and what I call hot shooting pains, seemingly like yours
and
very patchy feeling from the belly on down.

The last visit to the doc's he tested my leg strength and reflexes.. He smiled
and said
  it seemed like your leg strength is okay... for now. Then he tested reflexes
... the knee
one worked,, but the ankle one he had no response.  I may have started something
  that will end up with him taking away my license.

I have had a lot of trouble with balance lately when on my crutches.. weebles
wobble... lol.
but I do fall down.

From the MRI's and the specialist, my affected level is L5 S1 not exactly sure
what that means.
I know they invited 4 other doctors into the room to have a look at me.
That is par for the course with me.. but that is a whole other story.. Feel like
a guinea pig sometimes.

4 years ago hey talked about scar tissue and no significant growth.. I was
thinking they were looking for cancer.
But now I am thinking they were looking at a tethered cord.  Now I know what a
sausage feels like.
I am big around my chest and shoulders it was a tight fit.. haha.

I was a mess when I was born and the doctors said they had not seen such a
complicated
  miss mash of nerves in their careers to that point.

Anyway my point is I think that because of the nerves being irritated it is
causing a lot of
spasaming throughout my abdomen.. specifically my bladder.  I am having a lot of
trouble
cathing.  Everything is so tight and have to wait and be very patient till I can
sneak the cath
inside. This has been going on for the last 2 years.  I can feel my abdomen
spasm after trying
to cath and now I have to be in my w/chair sitting to go pee.  what a pain that
is.
Normally I can stand on my left leg.. right is amputated and was non
functioning, but now
it takes too long and get too tired.

I know I am very very lucky to even be able to stand and walk short distances
with crutches
and am very grateful to God for it, but to loose abilities is scary and
frustrating and my brain
thinks of a lot of different ways it could further change my life.  I thought I
might have an option to
regain or stop this loss, but feel I may have been written off with doctors.

I wish there were doctors specifically trained in certain disabilities.  The GP
I have and the
urologist I think they think I am a bit nuts.

I might need to look at options besides cathing and have not a clue about the
alternatives.

How do you deal with the pain.. anything specific? .. How much does it take to
create the pain?
Don't mean to obsess but I am in the midst of the same thing it sounds like.

Daryl




Hi Daryl,

I've always had a little problem with back and leg pain, but I think that's
mainly because I have a syrinx right above where my lesion is which is right on
top of my sciatic nerve.  So, when bumped or irritated just the right way, I get
some pretty good stinging burning pains for a little bit.  My problem I've been
having is tightness and spasming in the left leg, seemingly mostly with the
abductor muscles.  That makes it hard to stretch it out for things like cathing.

Amber K.

--,_._,___


       __________________________________________________________________
Instant Messaging, free SMS, sharing photos and more... Try the new Yahoo!
Canada Messenger at http://ca.beta.messenger.yahoo.com/

[Non-text portions of this message have been removed]

Hi Krista:? I'm Heather.? I'm a 43 yr. old mom with SB.? We have a?5 yr. old
son.? We live in Northern CA.? Feel free to contact me to chat.


[Non-text portions of this message have been removed]

Hi Daryl,

I've always had a little problem with back and leg pain, but I think that's
mainly because I have a syrinx right above where my lesion is which is right on
top of my sciatic nerve.  So, when bumped or irritated just the right way, I get
some pretty good stinging burning pains for a little bit.  My problem I've been
having is tightness and spasming in the left leg, seemingly mostly with the
abductor muscles.  That makes it hard to stretch it out for things like cathing.

Amber K.


----- Original Message -----
From: Daryl DCL
To: spinabifidacentral@yahoogroups.com
Sent: 1/1/2009 4:51:27 PM
Subject: Re: [Spina Bifida Central] Re: tethered cord


I feel for you Amber.
I am in the same boat ,, I have had 4 MRI's and the conclusion was, he wouldn't
touch me with a 10 foot pole.
He is the best guy in our area for back surgery.
I am in a lot of pain and I also have feeling loss. It comes and goes but over
time it has not come back fully.
I have hyper sensitivity all around the area of surgeries and there were 8
before the age of 5. My pain goes from
shooting pain down my leg to flooding pain that almost makes me pass out.

The only option they gave for me was to take Neurontin. But in Canada in order
for it to be covered by the
Government I have to lie and say I am epileptic. My concern is will it work ,,
how long will it work and
if I stop taking it will the Government try to take away my licence since I will
be labeled epileptic?

I can get relief from pain but it is only short term. If anything touches the
area..clothing bedding it will set me off.
I have had my problem for 10 years or more and has gotten progressively worse.

I would love to hear about your symptoms and how you cope if you would like to
send an email .. always like to chat.

Daryl

I'm jumping into this talk about tethered cord kind of in the middle, so if this
has already been discussed please forgive me. I'm wondering what the tell tale
signs of tethered cord problems are? And if tethered cord can have an affect on
the muscles, especially around the leg area? I've been having some awful times
with my left leg which is the only one that has movement and feeling, and I'm
wondering now if tethered cord might actually be to blame. Has anybody ever had
a problem with tightness in the leg to the point that it was really difficult to
pull the leg aside (like for cathing), and if so, how did it get resolved?

Thanks,
Amber K.

-
> After my MRI showed that I do indeed have a tethered cord, I was
sent to a specialist. All he did was tell me he didn't feel
comfortable and would rather send me on to Doctors that see this type
of thing regularly. Ugh! I feel like I just keep tossed around. I
wish someone would just tell me how bad it is and what my options
are. The waiting game is not fun, especially when it comes to your
health. Now, I have to sit and wait for the University of Minnesota
to call for an appointment. I have confidence in them.....I think.
>
> Sara
>
>
>
> SEA
>

Hi Sarah. Yeah I am going to the Mayo in Rochester to get my MRI
done to see if I have tethered cord. I know the feeling of being
tossed around from one doc to the next.....

Lisa
> --- On Mon, 12/15/08, r_rhubley <r_rhubley@. ..> wrote:
>

__________________________________________________________
Instant Messaging, free SMS, sharing photos and more... Try the new Yahoo!
Canada Messenger at http://ca.beta.messenger.yahoo.com/

[Non-text portions of this message have been removed]




[Non-text portions of this message have been removed]

I got mine on the 31st.

Amber K.


----- Original Message -----
From: Sara Schneider
To: spinabifidacentral@yahoogroups.com
Sent: 1/1/2009 3:57:03 PM
Subject: Re: [Spina Bifida Central] ssa.gov


you'll get it fri. i always get mine on the 1st so i was paid on dec. 30th.

much love in Christ,
sara 23/f/WI

--- On Tue, 12/30/08, CharlieinCT <cpatsky@...> wrote:
From: CharlieinCT <cpatsky@...>
Subject: [Spina Bifida Central] ssa.gov
To: "sbgroup" <SBMoms-N-Dads@yahoogroups.com>, "sbgroup s"
<spinabifidacentral@yahoogroups.com>
Date: Tuesday, December 30, 2008, 9:23 AM

was just curious when I would get my disability check in January 09 this Friday
the 2nd as I normally get it on the 3rd here is the link:http://ssa.gov/

No Good Deed Goes Unpunished!

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]




[Non-text portions of this message have been removed]

I feel for you Amber.
I am in the same boat ,, I have had 4 MRI's and the conclusion was, he wouldn't
touch me with a 10 foot pole.
He is the best guy in our area for back surgery.
I am in a  lot of pain and I also have feeling loss.  It comes and goes but over
time it has not come back fully.
I have hyper sensitivity all around the area of surgeries and there were 8
before the age of 5. My pain goes from
shooting pain down my leg to flooding pain that almost makes me pass out.

The only option they gave for me was to take Neurontin.   But in Canada in order
for it to be covered by the
Government I have to lie and say I am epileptic.  My concern is will it work ,,
how long will it work and
if I stop taking it will the Government try to take away my licence since I will
be labeled epileptic?

I can get relief from pain but it is only short term.  If anything touches the
area..clothing bedding it will set me off.
I have had my problem for 10 years or more and has gotten progressively worse.

I would love to hear about your symptoms and how you cope if you would like to
send an email .. always like to chat.

Daryl








I'm jumping into this talk about tethered cord kind of in the middle, so if this
has already been discussed please forgive me.  I'm wondering what the tell tale
signs of tethered cord problems are?  And if tethered cord can have an affect on
the muscles, especially around the leg area?  I've been having some awful times
with my left leg which is the only one that has movement and feeling, and I'm
wondering now if tethered cord might actually be to blame.  Has anybody ever had
a problem with tightness in the leg to the point that it was really difficult to
pull the leg aside (like for cathing), and if so, how did it get resolved?

Thanks,
Amber K.

-
> After my MRI showed that I do indeed have a tethered cord, I was
sent to a specialist.  All he did was tell me he didn't feel
comfortable and would rather send me on to Doctors that see this type
of thing regularly.  Ugh!  I feel like I just keep tossed around. I
wish someone would just tell me how bad it is and what my options
are.  The waiting game is not fun, especially when it comes to your
health.  Now, I have to sit and wait for the University of Minnesota
to call for an appointment.  I have confidence in them.....I think.
>
> Sara
>
>
>
> SEA
>

Hi Sarah. Yeah I am going to the Mayo in Rochester to get my MRI
done to see if I have tethered cord. I know the feeling of being
tossed around from one doc to the next.....

Lisa
> --- On Mon, 12/15/08, r_rhubley <r_rhubley@. ..> wrote:
>


       __________________________________________________________________
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you'll get it fri. i always get mine on the 1st so i was paid on dec. 30th.

much love in Christ,
sara 23/f/WI

--- On Tue, 12/30/08, CharlieinCT <cpatsky@...> wrote:
From: CharlieinCT <cpatsky@...>
Subject: [Spina Bifida Central] ssa.gov
To: "sbgroup" <SBMoms-N-Dads@yahoogroups.com>, "sbgroup s"
<spinabifidacentral@yahoogroups.com>
Date: Tuesday, December 30, 2008, 9:23 AM













was just curious when I would get my disability check in January 09 this Friday
the 2nd as I normally get it on the 3rd here is the link:http://ssa.gov/

No Good Deed Goes Unpunished!



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