Just found this group... here's my story

August 25, 2004

Hi to all,

A lot of very brave people here and reading your stories makes mine

seem like I shouldn't complain.

I'm 55 years old, I've had two healthy children and never any

problems at all even though I was born with SB and had surgery soon

after birth. My mother was told that I probably would not live at

all but if I did I would be paralyzed from the waist down with no

bowel or bladder control. None of that happened and I grew to be

5'8 " with no physical or neuro problems at all.

At age 53, in Jan, 2003 I began having burning, aching and throbbing

down my left leg and it felt as if my left leg from the knee down

was full of cement.

I saw a " spine specialist " at first and was sent for an MRI which he

said showed I had spinal stenosis. He noted my tethered cord also

and it became an interesting feature to discuss with his PA in the

office. I tried all the traditional treatments for pain relief

including the 3 steroid injections but nothing worked so after a

lengthy discussion we decided that he would do a laminectomy with

fusion. At one point detethering was discussed and he said " no, you

never detether a cord " .

In July of 2003 he did the surgery and came out afterward and told

my son that he could not complete the surgery because he hit the

dura and could not go any further. He repaired the dura and closed

me up. He kept me on large doses of morphine and even sent me home

on it. At first I thought that he had done his job because the pain

was so controlled. By the time I started physical therapy 6 weeks

later...all the pain returned and now with back pain left heel

weakness and numbing in my right foot and spasms starting in my

right leg. My hands are starting to spasm also He did another MRI

with contrast and an EMG and came up with some synovial cyst story

that I was not buying.

This started my search for a neurosurgeon, I saw several...at SUNY

hospital, at Beth Israel, I even made an appointment with a neuro in

Boston at Brigham Women's. They all said the same thing that I

STILL have spinal stenosis, that my cord which extends down to S2 is

being crushed and stabbed by degenerative bone changes and I need a

detethering.

I am set for surgery again at Long Island Jewish Hospital on Sept.

23. I will probably need more that one surgery because according to

the neuro any instrumentation needed to stabilize the spine cannot

be mixed with CSF fluid. I'm ok with the bone part but I have to

say that opening the dura and a possible CSF leak after surgery is

what's causing most of the anxiety for me.

Again I have to say that reading your posts about your experiences

has helped me to deal with what's coming, I hope I handle it as

bravely as all of you.

Judy

August 25, 2004

Hi Judy,

Gosh...so glad you found us. I'm definitely not one of the most

informed in this group....but tell ya what....it helps tremendously

knowing those here understand what's going on with spinal cord

problems! Alot of them have a vast knowledge of tethered spinal

cord as well as lots of other problems and they are soooo helpful.

I'm sure you will get plenty of response to all of your questions.

I wish you lots of luck and success with your upcoming surgery! I

know it will be a huge success for you because you're having surgery

on my birthday and that's a " good " day! (hehe)

Just wanted to welcome you.

Lynn

> Hi to all,

> A lot of very brave people here and reading your stories makes

mine

> seem like I shouldn't complain.

> I'm 55 years old, I've had two healthy children and never any

> problems at all even though I was born with SB and had surgery

soon

> after birth. My mother was told that I probably would not live at

> all but if I did I would be paralyzed from the waist down with no

> bowel or bladder control. None of that happened and I grew to be

> 5'8 " with no physical or neuro problems at all.

> At age 53, in Jan, 2003 I began having burning, aching and

throbbing

> down my left leg and it felt as if my left leg from the knee down

> was full of cement.

> I saw a " spine specialist " at first and was sent for an MRI which

he

> said showed I had spinal stenosis. He noted my tethered cord also

> and it became an interesting feature to discuss with his PA in the

> office. I tried all the traditional treatments for pain relief

> including the 3 steroid injections but nothing worked so after a

> lengthy discussion we decided that he would do a laminectomy with

> fusion. At one point detethering was discussed and he said " no,

you

> never detether a cord " .

> In July of 2003 he did the surgery and came out afterward and told

> my son that he could not complete the surgery because he hit the

> dura and could not go any further. He repaired the dura and

closed

> me up. He kept me on large doses of morphine and even sent me

home

> on it. At first I thought that he had done his job because the

pain

> was so controlled. By the time I started physical therapy 6 weeks

> later...all the pain returned and now with back pain left heel

> weakness and numbing in my right foot and spasms starting in my

> right leg. My hands are starting to spasm also He did another

MRI

> with contrast and an EMG and came up with some synovial cyst story

> that I was not buying.

> This started my search for a neurosurgeon, I saw several...at SUNY

> hospital, at Beth Israel, I even made an appointment with a neuro

in

> Boston at Brigham Women's. They all said the same thing that I

> STILL have spinal stenosis, that my cord which extends down to S2

is

> being crushed and stabbed by degenerative bone changes and I need

a

> detethering.

> I am set for surgery again at Long Island Jewish Hospital on Sept.

> 23. I will probably need more that one surgery because according

to

> the neuro any instrumentation needed to stabilize the spine cannot

> be mixed with CSF fluid. I'm ok with the bone part but I have to

> say that opening the dura and a possible CSF leak after surgery is

> what's causing most of the anxiety for me.

> Again I have to say that reading your posts about your experiences

> has helped me to deal with what's coming, I hope I handle it as

> bravely as all of you.

> Judy

August 25, 2004

I personally am hesitant to have surgeries but with your symptoms it

seems like a sure thing. Your symptoms sound sever but beyond that

you should consider sueing your original surgeon because his

treatment of your condition, is classic malpractice. Get a copy of

his account of your condition, I have never heard anything more

rediculous.

In fact I would worry more about what this Doctor did to you to

insult your condition, then opening the dura.

- In tetheredspinalcord , " Lynn Hannigan "

<hannigan@w...> wrote:

> Hi Judy,

> Gosh...so glad you found us. I'm definitely not one of the most

> informed in this group....but tell ya what....it helps

tremendously

> knowing those here understand what's going on with spinal cord

> problems! Alot of them have a vast knowledge of tethered spinal

> cord as well as lots of other problems and they are soooo

helpful.

> I'm sure you will get plenty of response to all of your

questions.

>

> I wish you lots of luck and success with your upcoming surgery! I

> know it will be a huge success for you because you're having

surgery

> on my birthday and that's a " good " day! (hehe)

>

> Just wanted to welcome you.

>

> Lynn

>

> > Hi to all,

> > A lot of very brave people here and reading your stories makes

> mine

> > seem like I shouldn't complain.

> > I'm 55 years old, I've had two healthy children and never any

> > problems at all even though I was born with SB and had surgery

> soon

> > after birth. My mother was told that I probably would not live

at

> > all but if I did I would be paralyzed from the waist down with

no

> > bowel or bladder control. None of that happened and I grew to

be

> > 5'8 " with no physical or neuro problems at all.

> > At age 53, in Jan, 2003 I began having burning, aching and

> throbbing

> > down my left leg and it felt as if my left leg from the knee

down

> > was full of cement.

> > I saw a " spine specialist " at first and was sent for an MRI

which

> he

> > said showed I had spinal stenosis. He noted my tethered cord

also

> > and it became an interesting feature to discuss with his PA in

the

> > office. I tried all the traditional treatments for pain relief

> > including the 3 steroid injections but nothing worked so after a

> > lengthy discussion we decided that he would do a laminectomy

with

> > fusion. At one point detethering was discussed and he said " no,

> you

> > never detether a cord " .

> > In July of 2003 he did the surgery and came out afterward and

told

> > my son that he could not complete the surgery because he hit the

> > dura and could not go any further. He repaired the dura and

> closed

> > me up. He kept me on large doses of morphine and even sent me

> home

> > on it. At first I thought that he had done his job because the

> pain

> > was so controlled. By the time I started physical therapy 6

weeks

> > later...all the pain returned and now with back pain left heel

> > weakness and numbing in my right foot and spasms starting in my

> > right leg. My hands are starting to spasm also He did another

> MRI

> > with contrast and an EMG and came up with some synovial cyst

story

> > that I was not buying.

> > This started my search for a neurosurgeon, I saw several...at

SUNY

> > hospital, at Beth Israel, I even made an appointment with a

neuro

> in

> > Boston at Brigham Women's. They all said the same thing that I

> > STILL have spinal stenosis, that my cord which extends down to

S2

> is

> > being crushed and stabbed by degenerative bone changes and I

need

> a

> > detethering.

> > I am set for surgery again at Long Island Jewish Hospital on

Sept.

> > 23. I will probably need more that one surgery because

according

> to

> > the neuro any instrumentation needed to stabilize the spine

cannot

> > be mixed with CSF fluid. I'm ok with the bone part but I have

to

> > say that opening the dura and a possible CSF leak after surgery

is

> > what's causing most of the anxiety for me.

> > Again I have to say that reading your posts about your

experiences

> > has helped me to deal with what's coming, I hope I handle it as

> > bravely as all of you.

> > Judy

August 25, 2004

My thanks to davidbrian and Lynn Hannigan for there supportive thoughts. It

does feel great to hear from people who have been there.

Judy

Re: Just found this group... here's my story

I personally am hesitant to have surgeries but with your symptoms it

seems like a sure thing. Your symptoms sound sever but beyond that

you should consider sueing your original surgeon because his

treatment of your condition, is classic malpractice. Get a copy of

his account of your condition, I have never heard anything more

rediculous.

In fact I would worry more about what this Doctor did to you to

insult your condition, then opening the dura.

- In tetheredspinalcord , " Lynn Hannigan "

<hannigan@w...> wrote:

> Hi Judy,

> Gosh...so glad you found us. I'm definitely not one of the most

> informed in this group....but tell ya what....it helps

tremendously

> knowing those here understand what's going on with spinal cord

> problems! Alot of them have a vast knowledge of tethered spinal

> cord as well as lots of other problems and they are soooo

helpful.

> I'm sure you will get plenty of response to all of your

questions.

>

> I wish you lots of luck and success with your upcoming surgery! I

> know it will be a huge success for you because you're having

surgery

> on my birthday and that's a " good " day! (hehe)

>

> Just wanted to welcome you.

>

> Lynn

>

> > Hi to all,

> > A lot of very brave people here and reading your stories makes

> mine

> > seem like I shouldn't complain.

> > I'm 55 years old, I've had two healthy children and never any

> > problems at all even though I was born with SB and had surgery

> soon

> > after birth. My mother was told that I probably would not live

at

> > all but if I did I would be paralyzed from the waist down with

no

> > bowel or bladder control. None of that happened and I grew to

be

> > 5'8 " with no physical or neuro problems at all.

> > At age 53, in Jan, 2003 I began having burning, aching and

> throbbing

> > down my left leg and it felt as if my left leg from the knee

down

> > was full of cement.

> > I saw a " spine specialist " at first and was sent for an MRI

which

> he

> > said showed I had spinal stenosis. He noted my tethered cord

also

> > and it became an interesting feature to discuss with his PA in

the

> > office. I tried all the traditional treatments for pain relief

> > including the 3 steroid injections but nothing worked so after a

> > lengthy discussion we decided that he would do a laminectomy

with

> > fusion. At one point detethering was discussed and he said " no,

> you

> > never detether a cord " .

> > In July of 2003 he did the surgery and came out afterward and

told

> > my son that he could not complete the surgery because he hit the

> > dura and could not go any further. He repaired the dura and

> closed

> > me up. He kept me on large doses of morphine and even sent me

> home

> > on it. At first I thought that he had done his job because the

> pain

> > was so controlled. By the time I started physical therapy 6

weeks

> > later...all the pain returned and now with back pain left heel

> > weakness and numbing in my right foot and spasms starting in my

> > right leg. My hands are starting to spasm also He did another

> MRI

> > with contrast and an EMG and came up with some synovial cyst

story

> > that I was not buying.

> > This started my search for a neurosurgeon, I saw several...at

SUNY

> > hospital, at Beth Israel, I even made an appointment with a

neuro

> in

> > Boston at Brigham Women's. They all said the same thing that I

> > STILL have spinal stenosis, that my cord which extends down to

S2

> is

> > being crushed and stabbed by degenerative bone changes and I

need

> a

> > detethering.

> > I am set for surgery again at Long Island Jewish Hospital on

Sept.

> > 23. I will probably need more that one surgery because

according

> to

> > the neuro any instrumentation needed to stabilize the spine

cannot

> > be mixed with CSF fluid. I'm ok with the bone part but I have

to

> > say that opening the dura and a possible CSF leak after surgery

is

> > what's causing most of the anxiety for me.

> > Again I have to say that reading your posts about your

experiences

> > has helped me to deal with what's coming, I hope I handle it as

> > bravely as all of you.

> > Judy

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

kathy@...,michelle@..., rick@...

August 25, 2004

Hey Judy

Geez...gotta say you're one of the brave ones! Sounds like you've really

been put through the mill. Ever think of hiring an attorney for that last

surgery??

I've had two spinal fluid leaks after untetherings and their not fun, but

really, not the worst thing in the world that can happen. One leak remained

under my skin (no CSF ever came to the outside world so to speak), but it

wouldn't stop leaking so my neurosurgeon went back in, found where the leak

was coming from (a stitch) and fixed it.

After another untethering (a few years later) I had another leak, however

this one went to the outside and it was gross, but other than that, on a

scale of one to ten, the worst part was laying flat in bed for about four

weeks while my doctors tried to decide what to do (surgery, no surgery and

wait it out...) I finally called and said I couldn't take laying flat

anymore and besides, with every movement in bed, fluid was coming out so

they opted to do surgery to correct it. They found the leak, fixed it and I

was fine (again.)

Kathy

Just found this group... here's my story

> Hi to all,

> A lot of very brave people here and reading your stories makes mine

> seem like I shouldn't complain.

> I'm 55 years old, I've had two healthy children and never any

> problems at all even though I was born with SB and had surgery soon

> after birth. My mother was told that I probably would not live at

> all but if I did I would be paralyzed from the waist down with no

> bowel or bladder control. None of that happened and I grew to be

> 5'8 " with no physical or neuro problems at all.

> At age 53, in Jan, 2003 I began having burning, aching and throbbing

> down my left leg and it felt as if my left leg from the knee down

> was full of cement.

> I saw a " spine specialist " at first and was sent for an MRI which he

> said showed I had spinal stenosis. He noted my tethered cord also

> and it became an interesting feature to discuss with his PA in the

> office. I tried all the traditional treatments for pain relief

> including the 3 steroid injections but nothing worked so after a

> lengthy discussion we decided that he would do a laminectomy with

> fusion. At one point detethering was discussed and he said " no, you

> never detether a cord " .

> In July of 2003 he did the surgery and came out afterward and told

> my son that he could not complete the surgery because he hit the

> dura and could not go any further. He repaired the dura and closed

> me up. He kept me on large doses of morphine and even sent me home

> on it. At first I thought that he had done his job because the pain

> was so controlled. By the time I started physical therapy 6 weeks

> later...all the pain returned and now with back pain left heel

> weakness and numbing in my right foot and spasms starting in my

> right leg. My hands are starting to spasm also He did another MRI

> with contrast and an EMG and came up with some synovial cyst story

> that I was not buying.

> This started my search for a neurosurgeon, I saw several...at SUNY

> hospital, at Beth Israel, I even made an appointment with a neuro in

> Boston at Brigham Women's. They all said the same thing that I

> STILL have spinal stenosis, that my cord which extends down to S2 is

> being crushed and stabbed by degenerative bone changes and I need a

> detethering.

> I am set for surgery again at Long Island Jewish Hospital on Sept.

> 23. I will probably need more that one surgery because according to

> the neuro any instrumentation needed to stabilize the spine cannot

> be mixed with CSF fluid. I'm ok with the bone part but I have to

> say that opening the dura and a possible CSF leak after surgery is

> what's causing most of the anxiety for me.

> Again I have to say that reading your posts about your experiences

> has helped me to deal with what's coming, I hope I handle it as

> bravely as all of you.

> Judy

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

kathy@...,michelle@..., rick@...

>

August 25, 2004

Gotta fix that spelling error in my fourth sentence. Sorry... " they're not

fun ... " Grrrrrrrrrr (Heheehhe)

Kathy

Just found this group... here's my story

>

> > Hi to all,

> > A lot of very brave people here and reading your stories makes mine

> > seem like I shouldn't complain.

> > I'm 55 years old, I've had two healthy children and never any

> > problems at all even though I was born with SB and had surgery soon

> > after birth. My mother was told that I probably would not live at

> > all but if I did I would be paralyzed from the waist down with no

> > bowel or bladder control. None of that happened and I grew to be

> > 5'8 " with no physical or neuro problems at all.

> > At age 53, in Jan, 2003 I began having burning, aching and throbbing

> > down my left leg and it felt as if my left leg from the knee down

> > was full of cement.

> > I saw a " spine specialist " at first and was sent for an MRI which he

> > said showed I had spinal stenosis. He noted my tethered cord also

> > and it became an interesting feature to discuss with his PA in the

> > office. I tried all the traditional treatments for pain relief

> > including the 3 steroid injections but nothing worked so after a

> > lengthy discussion we decided that he would do a laminectomy with

> > fusion. At one point detethering was discussed and he said " no, you

> > never detether a cord " .

> > In July of 2003 he did the surgery and came out afterward and told

> > my son that he could not complete the surgery because he hit the

> > dura and could not go any further. He repaired the dura and closed

> > me up. He kept me on large doses of morphine and even sent me home

> > on it. At first I thought that he had done his job because the pain

> > was so controlled. By the time I started physical therapy 6 weeks

> > later...all the pain returned and now with back pain left heel

> > weakness and numbing in my right foot and spasms starting in my

> > right leg. My hands are starting to spasm also He did another MRI

> > with contrast and an EMG and came up with some synovial cyst story

> > that I was not buying.

> > This started my search for a neurosurgeon, I saw several...at SUNY

> > hospital, at Beth Israel, I even made an appointment with a neuro in

> > Boston at Brigham Women's. They all said the same thing that I

> > STILL have spinal stenosis, that my cord which extends down to S2 is

> > being crushed and stabbed by degenerative bone changes and I need a

> > detethering.

> > I am set for surgery again at Long Island Jewish Hospital on Sept.

> > 23. I will probably need more that one surgery because according to

> > the neuro any instrumentation needed to stabilize the spine cannot

> > be mixed with CSF fluid. I'm ok with the bone part but I have to

> > say that opening the dura and a possible CSF leak after surgery is

> > what's causing most of the anxiety for me.

> > Again I have to say that reading your posts about your experiences

> > has helped me to deal with what's coming, I hope I handle it as

> > bravely as all of you.

> > Judy

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> kathy@...,michelle@..., rick@...

> >

August 25, 2004

Hi Katheen, (is it Katheen or Kathleen?)

Your words are absolutely what I wanted to hear, you went through a lot and

I don't think I'll want a surgeon to wait four weeks for a repair, but I'll

hope for the best outcome. thanks again.