Re: what's the worst case scenario?

[Guest guest]

Hi

I will be totally frank with you as I have/had tethered thickened filum

terminale AND arachnoid adhesions

I was told (in March 2001) that if I didn't have mine detethered in the

next 6 months I would be in a wheelchair within 18 months. Needless to say,

I had the surgery ... in July 2001!!

The nsg explained it (very simply) as, the damage to the cord via the

stretching mechanism would get worse and damage the nerves to my feet and

legs irreversibly, thus stopping signals going to my lower limbs, thereby

compromising my walking ability. My bladder (which up till then was very

good despite how tight I was tethered) would deteriorate to no control, and

there would be no way back to repair that damage.

Ultimately the decision is yours, BUT I would not have been in the much

better position I am now if I had not had the surgery. OK, I ended up with

erythromelalgia and spondylolisthesis, but at least I am still walking,

totally continent, driving, swimming, able to go to the gym etc, and

despite still having the deformed feet I feel a lot better than in the 2

years when my TC was deteriorating. Also, the surgery and the period

afterwards is horrid!, but as I said to AG some time ago, thickened filum

detethers have a much higher likelihood of pain relief and a good recovery

than other more complicated detethering surgery.

If you want to email me privately, please do. The email is always open

Regards

Nina

Bristol, UK

http://www.btinternet.com/~tetheredcordresources/

--On 07 April 2006 13:37 +0000 amandamariebaker

wrote:

> Hello everyone,

>

> I haven't been diagnosed yet but I'm certain that I have a tight filum

> terminale. I consider myself fortunate that I don't have traditional

> spina bifida or tethered cord. But, lately (esp since the birth of my

> son) my symptoms are worsening.

>

> I've had constant head/neck pain since I was 28 (I'm 35 now).

> I've always had a little strange pinched feeling in my lower

> back...and a fatty lump. I won't go into the other reasons I know I

> have tight filum terminale...just humor me and assume I do.

>

> Since having my son, my lower back pain has become very bothersome -

> to the point of waking me up at night. I'm also noticing very tight

> calves. And achiness in my legs...esp anteriorly just above my

> knees. Also, keep in mind that I've been on narcotics for (head) pain

> relief for 2 years now...and I suspect that this is masking my leg/hip

> pain somewhat.

>

> Can a tight filum terminale put your in a wheelchair if it goes

> untreated? My worst fear is that my doctors won't be able to identify

> that I have it. I've had the flip flop mri and, even to me, it

> doesn't look like tethered cord. But, mark my words, I KNOW I have it.

>

> So, what I really want to know is, what's going to happen to me if

> this is never treated? Give it to me straight...

>

> in land

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

[Guest guest]

amandamariebaker said the following on 4/7/2006 7:37 AM:

> Hello everyone,

>

> I haven't been diagnosed yet but I'm certain that I have a tight filum

> terminale.

If you do in fact have tight filim terminale, something is causing it.

Only thing I can think of to cause it, is it is tethered. Many cases,

the MRI does not show tethering.

Rick

[Guest guest]

Truthfully, nobody can positively say for sure. You

may or may not get worse from where you are

now.

I personally have not heard of Tethered Cord and

it's effects paralyizing somebody completely where

they need a Wheelchair. Maybe it has happened, I'm

just not aware of it. But there are those who

have choosen to use a Wheelchair, because of their

Symptoms, it was too risky to get around without

one...........such as Pain (much better when they are

sitting instead of trying to Walk), weak muscles.

I hope that made some kind of sense to you. If not,

let me know and I will try and explain better.

Me

Nebraska, USA

mymocha@...

> So, what I really want to know is, what's going to happen to me if

> this is never treated? Give it to me straight...

>

> in land

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

[Guest guest]

I really feel the need to comment here. My husband had recurring intermittent

episodes of total paralysis from just below the waist down starting about five

years ago. And I do mean total paralysis. No sensation or movement whatsoever.

He could not feel anything and he could not move his legs at all. As time went

on, they became more frequent and of longer duration. They started at 3 times

once a year and progressed to three weeks occuring about every three months. We

had no clue he had tethered cord. It had come to the point where he needed use

of a wheelchair, but our house was not equipped to handle it and he spent most

of his time in bed. Over those five years all of his symptoms progressively

worsened. I'll skip the details, but will respond privately to anyone who wants

more info. We had seen many, many, many doctors and then had the good fortune

to end up at the Chiari Institute. It is still too soon after his surgery to

tell how much function he will regain. If we had known he had tethered cord

five years or more ago, perhaps the damage could have been prevented. It would

have been worth the risk for us to try it knowing what we know now. Tethered

cord is a really big deal in my husbands case. Thank God if you are

non-symptomatic, but he went over twenty years virtually symptom free and then

he became totally disabled.

Re: what's the worst case scenario?

Truthfully, nobody can positively say for sure. You

may or may not get worse from where you are

now.

I personally have not heard of Tethered Cord and

it's effects paralyizing somebody completely where

they need a Wheelchair. Maybe it has happened, I'm

just not aware of it. But there are those who

have choosen to use a Wheelchair, because of their

Symptoms, it was too risky to get around without

one...........such as Pain (much better when they are

sitting instead of trying to Walk), weak muscles.

I hope that made some kind of sense to you. If not,

let me know and I will try and explain better.

Me

Nebraska, USA

mymocha@...

> So, what I really want to know is, what's going to happen to me if

> this is never treated? Give it to me straight...

>

> in land

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

[Guest guest]

Hi everyobe

I'm still very surprised every time you tell your husband's case, I really

hope he gets some improvement. How is it going so far? What type of tsc does

he have?

For those out there wanting to know positive stories...I was having episodes

like his (but not as severe to be completely paralyzed) but I could barely

walk across a room holding on to furniture, cane, anything, using my arms.

If I drove more than 20-25' I would lose my foot use. I would try to " save

up " my legs as much as possible by using cruise control, my sister came to

get me at work, she decided very kindly that I needed help. I was losing my

ability to work, care for my family and myself. Friends and family were

starting to think I was nuts and I was losing patience with them trying to

explain my problems in search of help. If I rested for 2-3 days after a bad

episode, I would gradually recover use of my legs and look pretty nl. The

bad days became more and more frequent until my whole life was a bad day

over and over. I was extremely desperate to say the least! I couldn't stand

watching my kids lives go by without being able to be part in thier

activities as much.

I had surgery, section fillum terminale, as I've told me story before,

everyday that goes by I am more and more grateful for having found my doctor

and having had surgery (I saw 6 more surgeons with no luck and a lot of dead

ends). By 11/05 I knew for sure that I needed surgery or I would be house

bound very soon. Since the surgery, as hard as the recovery is, I have never

had a day as bad as before the surgery.

Everyday I work hard to recover my work load and family relationships and my

strength...my legs hurt everyday but this is nothing compared to where I was

4 monthas ago...It has been amazing to see my legs start to respond to my

brain's commands again on a more reliable basis! I

Best wishes to all of you, every case is different so it's hard to say what

works for each but in some cases surgery is a good option.

AG

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: Re: what's the worst case scenario?

>Date: Mon, 17 Apr 2006 18:57:26 -0400

>

>I really feel the need to comment here. My husband had recurring

>intermittent episodes of total paralysis from just below the waist down

>starting about five years ago. And I do mean total paralysis. No

>sensation or movement whatsoever. He could not feel anything and he could

>not move his legs at all. As time went on, they became more frequent and

>of longer duration. They started at 3 times once a year and progressed to

>three weeks occuring about every three months. We had no clue he had

>tethered cord. It had come to the point where he needed use of a

>wheelchair, but our house was not equipped to handle it and he spent most

>of his time in bed. Over those five years all of his symptoms

>progressively worsened. I'll skip the details, but will respond privately

>to anyone who wants more info. We had seen many, many, many doctors and

>then had the good fortune to end up at the Chiari Institute. It is still

>too soon after his surgery to tell how much function he will regain. If we

>had known he had tethered cord five years or more ago, perhaps the damage

>could have been prevented. It would have been worth the risk for us to try

>it knowing what we know now. Tethered cord is a really big deal in my

>husbands case. Thank God if you are non-symptomatic, but he went over

>twenty years virtually symptom free and then he became totally disabled.

> Re: what's the worst case scenario?

>

>

> Truthfully, nobody can positively say for sure. You

> may or may not get worse from where you are

> now.

>

> I personally have not heard of Tethered Cord and

> it's effects paralyizing somebody completely where

> they need a Wheelchair. Maybe it has happened, I'm

> just not aware of it. But there are those who

> have choosen to use a Wheelchair, because of their

> Symptoms, it was too risky to get around without

> one...........such as Pain (much better when they are

> sitting instead of trying to Walk), weak muscles.

>

> I hope that made some kind of sense to you. If not,

> let me know and I will try and explain better.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > So, what I really want to know is, what's going to happen to me if

> > this is never treated? Give it to me straight...

> >

> > in land

> >

> >

> >

> >

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

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

>rick@...

> >

[Guest guest]

Thank you for sharing this. I wasn't certain how closely TCI looked at the

whole nervous system.

I hope your husband continues to improve.

's mom

Re: what's the worst case scenario?

Truthfully, nobody can positively say for sure. You

may or may not get worse from where you are

now.

I personally have not heard of Tethered Cord and

it's effects paralyizing somebody completely where

they need a Wheelchair. Maybe it has happened, I'm

just not aware of it. But there are those who

have choosen to use a Wheelchair, because of their

Symptoms, it was too risky to get around without

one...........such as Pain (much better when they are

sitting instead of trying to Walk), weak muscles.

I hope that made some kind of sense to you. If not,

let me know and I will try and explain better.

Me

Nebraska, USA

mymocha@...

> So, what I really want to know is, what's going to happen to me if

> this is never treated? Give it to me straight...

>

> in land

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

[Guest guest]

One thing that is very worried about is our three kids. We are watching

them very closely and if they show any signs of having Tethered cord we will

have them evaluated and treated as soon as possible. They are still very young

(1, 3 and 4) and we don't want to put them through sedation for an MRI just in

case. Dr. Milhorat doesn't feel that in my Husband's case that this is

heriditary thing.

If you have it, have it treated and spare yourself a lot of potential

suffering---but that's just my opinion. My husband didn't really think the

surgery was all that bad (relative to all his previous pain, etc. and the

potential for improvement.)

Re: what's the worst case scenario?

Truthfully, nobody can positively say for sure. You

may or may not get worse from where you are

now.

I personally have not heard of Tethered Cord and

it's effects paralyizing somebody completely where

they need a Wheelchair. Maybe it has happened, I'm

just not aware of it. But there are those who

have choosen to use a Wheelchair, because of their

Symptoms, it was too risky to get around without

one...........such as Pain (much better when they are

sitting instead of trying to Walk), weak muscles.

I hope that made some kind of sense to you. If not,

let me know and I will try and explain better.

Me

Nebraska, USA

mymocha@...

> So, what I really want to know is, what's going to happen to me if

> this is never treated? Give it to me straight...

>

> in land

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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

>

[Guest guest]

He is already starting to show some improvement, but there are other issues that

still need to be addressed, probably surgically. He would have the surgery

again in a heartbeat--we just wish we had known sooner. I am still angry and

confused at how so many supposedly good doctors totally missed it. Maybe if we

had known sooner, he would be in better shape now. I totally relate to your

story--was totally unable to work at all secondary to pain and inability

to get around. We are very hopeful that as time goes on, he will improve more

and more. Good luck to everyone who is considering this surgery--Don't be

afraid to do it.

Re: what's the worst case scenario?

>

>

> Truthfully, nobody can positively say for sure. You

> may or may not get worse from where you are

> now.

>

> I personally have not heard of Tethered Cord and

> it's effects paralyizing somebody completely where

> they need a Wheelchair. Maybe it has happened, I'm

> just not aware of it. But there are those who

> have choosen to use a Wheelchair, because of their

> Symptoms, it was too risky to get around without

> one...........such as Pain (much better when they are

> sitting instead of trying to Walk), weak muscles.

>

> I hope that made some kind of sense to you. If not,

> let me know and I will try and explain better.

>

> Me

> Nebraska, USA

> mymocha@...

>

> > So, what I really want to know is, what's going to happen to me if

> > this is never treated? Give it to me straight...

> >

> > in land

> >

> >

> >

> >

> >

> >

> >

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

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

>rick@...

> >

[Guest guest]

,

I have been off line lately for personal issues plus had to go to NY

with the kids. I will be checking all the old posts here and at WACMA

as I can. Please remember that each case is different and will

progress differently. Keep the tension off your cord as much as

possible until things get worked out...Let me know how you are doing.

Charnel

>

> Hello everyone,

>

> I haven't been diagnosed yet but I'm certain that I have a tight filum

> terminale. I consider myself fortunate that I don't have traditional

> spina bifida or tethered cord. But, lately (esp since the birth of my

> son) my symptoms are worsening.

>

> I've had constant head/neck pain since I was 28 (I'm 35 now).

> I've always had a little strange pinched feeling in my lower

> back...and a fatty lump. I won't go into the other reasons I know I

> have tight filum terminale...just humor me and assume I do.

>

> Since having my son, my lower back pain has become very bothersome -

> to the point of waking me up at night. I'm also noticing very tight

> calves. And achiness in my legs...esp anteriorly just above my

> knees. Also, keep in mind that I've been on narcotics for (head) pain

> relief for 2 years now...and I suspect that this is masking my leg/hip

> pain somewhat.

>

> Can a tight filum terminale put your in a wheelchair if it goes

> untreated? My worst fear is that my doctors won't be able to identify

> that I have it. I've had the flip flop mri and, even to me, it

> doesn't look like tethered cord. But, mark my words, I KNOW I have it.

>

> So, what I really want to know is, what's going to happen to me if

> this is never treated? Give it to me straight...

>

> in land

>