Re: Back again,,,,

[Guest guest]

Hello,

I'm 58 and had my first tc release when I was 51.

I was born with lipomyelomeningocele, and never had any sugery as a

child. I grew up with hamnmer toes, pes cavus feet, wasted calf

muscles, some bowel and bladder incontinence. Never had any pain, and

was stable for years.

In my mid-forties, I started having knee and hip pain. When it

developed into more bladder incontinence, I got to a neurosurgeon and

discovered my new diagnosis of tethered cord. (it took a while). The

first time they attempted surgery, it was canceled because my heart

went into v-tach under the anesthesia. The second time it was

successful, but then I had repeated infections of the surgical wound,

which led to prolonged and complicated healing. I had three good

years once I healed.

Now, I'm retethered, but my surgeons do not want to operate again.

Things I have now, that I did not have before age 45 are AFOs (the old

fashioned metal kind) on both legs, a scooter and wheelchair for

distances, a pain management doctor and a mixture of drugs that keep

the pain under control, a bowel program, and collagen injections at my

urethra to keep my bladder from dumping.

I went on SS disability October a year ago after my physiatrist urging

me to for over a year and am able to rest when I need to daily, now.

But I still live alone with lots of pets, can garden on good back

days, and date.

How much of my current problems are due to tc or to " aging with a

disability " (one of the new catch words) - who knows!

V

> I would like to find out about people who were born with spina bifida

> and didn't have detethering surgery untile later in life. (40+ yrs of

> age). Any info/experiences that people can provide would be

> appreciated. Thanks. )

[Guest guest]

Thanks for replying. It seems that a lot of the things that you

experienced are things that i have gone through too. I was born and

diagnosed with spina bifida right away. I also have bowel and bladder

problems and wear AFO's on both legs. My principal concern right now

is chronic lower back and leg pain. I believe it is associated with

the tethered cord. Just wondering if attempting to detether the cord

would be worth the time and pain, especially at this time of my life.

Hope all goes well with you in the future.)

> > Hi,

> >

> >

> > I would like to find out about people who were born with spina

> bifida

> > and didn't have detethering surgery untile later in life. (40+

yrs

> of

> > age). Any info/experiences that people can provide would be

> > appreciated. Thanks. )

[Guest guest]

Thanks for your reply. As with you, my calf muscles are under-

developed. I have had bladder and bowel problems from birth and am

now wearing AFO's. I have had chronic back and leg pain. It is only

because i recently found out that i do have a tethered cord that i am

wondering whether detethering would get rid or significantly reduce

this pain. It seems that there is some question of how long any

prospective positive results last as well as the question of how soon

retethering occurs. More things to ponder. Hope all goes as well as

possible with you. Take care. )

In tetheredspinalcord , " neveragain92 "

<neveragain92@y...> wrote:

> Hello,

> I'm 58 and had my first tc release when I was 51.

>

> I was born with lipomyelomeningocele, and never had any sugery as a

> child. I grew up with hamnmer toes, pes cavus feet, wasted calf

> muscles, some bowel and bladder incontinence. Never had any pain,

and

> was stable for years.

>

> In my mid-forties, I started having knee and hip pain. When it

> developed into more bladder incontinence, I got to a neurosurgeon

and

> discovered my new diagnosis of tethered cord. (it took a while). The

> first time they attempted surgery, it was canceled because my heart

> went into v-tach under the anesthesia. The second time it was

> successful, but then I had repeated infections of the surgical

wound,

> which led to prolonged and complicated healing. I had three good

> years once I healed.

>

> Now, I'm retethered, but my surgeons do not want to operate again.

> Things I have now, that I did not have before age 45 are AFOs (the

old

> fashioned metal kind) on both legs, a scooter and wheelchair for

> distances, a pain management doctor and a mixture of drugs that keep

> the pain under control, a bowel program, and collagen injections at

my

> urethra to keep my bladder from dumping.

>

> I went on SS disability October a year ago after my physiatrist

urging

> me to for over a year and am able to rest when I need to daily, now.

> But I still live alone with lots of pets, can garden on good back

> days, and date.

>

> How much of my current problems are due to tc or to " aging with a

> disability " (one of the new catch words) - who knows!

>

> V

>

> > I would like to find out about people who were born with spina

bifida

> > and didn't have detethering surgery untile later in life. (40+

yrs of

> > age). Any info/experiences that people can provide would be

> > appreciated. Thanks. )

[Guest guest]

Hi ya,

Read your concerns about your cronic back and leg pain. I'm

struggling with that same worries and think I can understand how you

feel.

I was diagnosed with tc two years ago at the grand age of 32 so I

don't fit your critria for being over 40, but I'm nearly there! I've

known about my spina bifida all my life and have dealt with my dodgy

feet and leaky bladder. In February, I wrote to the group for the

first time asking for other's stories in a vain hope that it would

help me to make a surgical decision. Listening to others made me

realise that I needed to get a second opnion before I did anything

else. I've been seeing a surgeon since diagnosis that I'm not

comfortable with and a couple of weeks ago I went and got a second

opinion from the best surgeon here in the UK. I followed this with a

two hour chat with Nina, who's also on this list. I could have

chatted to her for hours!!! Read her website, it's wonderful.

This surgeon's main concern was for my bladder function which is

deteriorating very slowly, but like you, my principal concern was and

still is the pain. I'm going to pain management in 2 weeks time and

I'm hoping that I will be able to at least control the level of pain

and maybe bring it down a notch or two. Are you taking any meds to

help alleviate your pain?

My new doc suggests surgery if my bladder continues to deteriorate OR

if my pain becomes less tolerable. It's a tough call for all of us

with tc because the chances of success with surgery are generally not

high.

I've been in turmoil since I saw the second surgeon as the original

guy seemed to think I was imagining the worsening of my symptoms.

This one took me seriously and gave me all the infomation I needed to

make up my mind about what I should or shouldn't do. Unfortunately,

this sent my brain into overload and I spent a good week being very

tearful and frightened.

I think what I'm trying to say is, that YOU are the only one who can

make the decision. Help yourself by finding a good neuro and gain as

much knowledge as you can.

After looking at the options, I think I'm prepared to put up with

some further worsening of my bladder function but not the pain.

Hope my ramblings help.

Good luck with your decision making.

Carey

Hove UK

> > > Hi,

> > >

> > >

> > > I would like to find out about people who were born with spina

> > bifida

> > > and didn't have detethering surgery untile later in life. (40+

> yrs

> > of

> > > age). Any info/experiences that people can provide would be

> > > appreciated. Thanks. )