Re: rate of reocurring tethered cord

[Guest guest]

Hiya ,

Hope this finds you well. I was just wondering if maybe you had your mri on a

disk that maybe one of us with chiari could look at it and maybe let you know if

have chiari or not, because when I look at my mri I can actually see the chiari.

Let us know.

Love to all

Tracey s

ACM2 11mm

Spina Bifida

Tethered Cord-Detethered Nov. 2, 2005

EDS

Fibromyalgia

Von Willebrand Disease

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

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hi Tracey,

First of all, thanks for responding to my e-mail. I actually just went to the

neurosurgeron and he is going to order MRI's of my complete back and head. I am

having issues in the past two months in which my neuropathy has gotten worse and

my toes have curled under... like a claw foot. We think it might just be

related to the possibilty of my calves not contracting when I walk. So I tend

to walk completely on my heels which tightens my arches and pulls my toes in. I

don't know its only a theory. Anyways, I asked him about my symptoms that I had

in the hospital and that is why he is ordering another MRI (along with nerve

conduction tests). I understand that sometimes it is sometimes hard to diagnose

ACM? Well if I have a problem I might ask you to take a look if you don't mind.

Thanks!!!

Re: rate of reocurring tethered cord

Hiya ,

Hope this finds you well. I was just wondering if maybe you had your mri on a

disk that maybe one of us with chiari could look at it and maybe let you know if

have chiari or not, because when I look at my mri I can actually see the chiari.

Let us know.

Love to all

Tracey s

ACM2 11mm

Spina Bifida

Tethered Cord-Detethered Nov. 2, 2005

EDS

Fibromyalgia

Von Willebrand Disease

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

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Filipi said the following on 8/30/2006 10:01 AM:

> Hi Everyone,

>

> I had a question for the group. I have had two detetherings for my

lipomeningomyelocele's. My neurosurgeon claims that the rate of

retether is a 5% chance. But since I had so much scar tissue and

arachnoiditis he said it might go as high as 10%. I know each case is

different but 'in general' is this percentage correct?

I have to wonder where your nsg got his numbers 5-10% chance of

retethering. Could it be 90 to 95 out of every 100 surgeries he has

performed, the patient has not retethered? In what period of time, 1

week? 10 years? I do not mean to be sarcastic, but the numbers just are

not out there for someone to state such a statistic. I asked my nsg what

the chances of my retethering were and he said there was no way to tell,

some do, some dont, there are so many different circumstances for each

patient. Look at our group here, 433 members, I am just guessing but I

would bet OUR number is around 70-80% have retethered or are currently

retethered. I think the optimistic approach is to just assume that you

will not retether, period.

Rick

[Guest guest]

Filipi said the following on 8/30/2006 10:31 PM:

> I am having issues in the past two months in which my neuropathy has gotten

worse and my toes have curled under... like a claw foot.

I have (had) hammer toes on my strong foot. It is not uncommon with tsc.

My physiologist and PT tried for 4 or 5 years to fix them naturally, all

to no avail. The last resort was surgery, my big toe was pinned

straight, second toe had the tendon on the bottom cut and attached to

the top, third toe, the surgeon just removed the end joint. Thats what

he should have done on the second toe, it was 2 surgeries and 2

different surgeons, the first one moved to another country. The fourth

and fifth toes are still curled but not bothersome. The cause is that

the muscle that pulls them curled will not release due to nerve damage

either from the tethered cord or from surgery. Mine occurred after

surgery so I assume the nsg had to cut some nerve roots in the release

process.

> We think it might just be related to the possibilty of my calves not

contracting when I walk. So I tend to walk completely on my heels which

tightens my arches and pulls my toes in. I don't know its only a theory.

Walking on your heels will eventually cause ankle, knee, hip, back, and shoulder

pain due to overcompensation and improper body alignment. The fix is to see an

orthotist who will adjust your shoes and make inserts so that you can walk with

weight evenly placed under your whole foot. In the beginning, my orthotist made

space for my hammer toes but the tips were still too sensitive and caused spasms

when they touched anything. Ask your nsg about these possibilities and for a

referral to an orthotist. I did not have any insurance problems.

Rick

ps: for more info, log in and search our group message archives at

http://health.groups.yahoo.com/group/tetheredspinalcord/ for hammer toes, I got

216 posts about it from Oct 31-2000 to the present.

[Guest guest]

Rick,

Hi there. Good to hear from you. I didn't take your remark as sarcastic. I

had a feeling in my gut that those figures aren't right. I have been looking

for medical articles to support or not support the statement. I guess I just

trusted him. I worked in the ICU as a nurse with him. I respected him as the

best NS in the area. I checked out his references and he has gotten many awards

for his skill as a NS, serves as assoc. professor at UCLA etc..... So I was

embarrassed to question his ability/ knowledge. I realize that he may be a

great NS in other areas and might not have the experience with TSC. Initially

when I had my surgical consult he said that the surgery would be straight

forward and easy. Well I made him work for his money. I had alot more scar

tissue and lipoma entangled in my nerves and filum terminale. Anyways, before I

ever have another cord release I will get references. Thanks Rick for your kind

reply.

Peace,

Re: rate of reocurring tethered cord

Filipi said the following on 8/30/2006 10:01 AM:

> Hi Everyone,

>

> I had a question for the group. I have had two detetherings for my

lipomeningomyelocele's. My neurosurgeon claims that the rate of

retether is a 5% chance. But since I had so much scar tissue and

arachnoiditis he said it might go as high as 10%. I know each case is

different but 'in general' is this percentage correct?

I have to wonder where your nsg got his numbers 5-10% chance of

retethering. Could it be 90 to 95 out of every 100 surgeries he has

performed, the patient has not retethered? In what period of time, 1

week? 10 years? I do not mean to be sarcastic, but the numbers just are

not out there for someone to state such a statistic. I asked my nsg what

the chances of my retethering were and he said there was no way to tell,

some do, some dont, there are so many different circumstances for each

patient. Look at our group here, 433 members, I am just guessing but I

would bet OUR number is around 70-80% have retethered or are currently

retethered. I think the optimistic approach is to just assume that you

will not retether, period.

Rick

[Guest guest]

I did a lot of research on retethering before deciding whether or not

to proceed with a detethering surgery for my then 5 month old

asymptomatic daughter. I agree that there is just not enough

statistic to make such a statement. I also dont understand the

symptomatic vs physical retethering. I understand what it means, but

if it going to get re-tethered anyway, and the second time around if

I am going to wait for symptoms, why not wait the first time? My ns

didnt have a proper answer.

But the general idea on retethering based on about 20-25 articles and

journals I read seemed to be that it depends on 2 things (a) amount

of incision/defect on the dura, and especially if the dura needed to

be patched up using an artificial material ( amount of scar tissue

generated. So, if there is a huge defect in the dura and that had to

be patched up, then there is a much higher chance of retethering.

They are researching with different kinds of material to see if that

reduces the chances of re-tethering. In these cases, there is a much

higher rate of retethering. In other cases, where dura is not

damaged, does not need to be patched up, or the incision on dura is

minimal - like fatty filum, the chances of retethering is very

minimal. So, the general recommendation seemed to be that in case of

a huge defect in dura, and especially with a lot of nerve

involvement, surgery should be undertaken after a lot of thought, and

in some complicated cases, can do more harm than good. But for a

fatty filum, surgery is always recommended because the benefit

outweighs the risks at a very high rate. So, even though lmc and

fatty filum present with similar/same symptoms, the prognosis of

these two conditions are very different.

My daughter fell somewhere in between these two categories - she had

a interspinal lipoma without a dural defect, and it seemed that it

was better to go ahead with surgery. The ns (all 4 of them) seemed

very confident that it was highly unlikely to re-tether. But I have

seen fatty filum people retethered, so I dont really believe them.

I do not know how representative this group is of the retethering

statistic. I know that when I am less worried with my issues, I tend

to visit the group less. So my guess is many people who have not

retethered do not visit unless they have issues. So, we mainly see

issues in the groups. That is just my opinion.

Abby.

>

> Rick,

>

> Hi there. Good to hear from you. I didn't take your remark as

sarcastic. I had a feeling in my gut that those figures aren't

right. I have been looking for medical articles to support or not

support the statement. I guess I just trusted him. I worked in the

ICU as a nurse with him. I respected him as the best NS in the

area. I checked out his references and he has gotten many awards for

his skill as a NS, serves as assoc. professor at UCLA etc..... So I

was embarrassed to question his ability/ knowledge. I realize that

he may be a great NS in other areas and might not have the experience

with TSC. Initially when I had my surgical consult he said that the

surgery would be straight forward and easy. Well I made him work for

his money. I had alot more scar tissue and lipoma entangled in my

nerves and filum terminale. Anyways, before I ever have another cord

release I will get references. Thanks Rick for your kind reply.

>

> Peace,

>

> Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

> lipomeningomyelocele's. My neurosurgeon claims that the rate of

> retether is a 5% chance. But since I had so much scar tissue and

> arachnoiditis he said it might go as high as 10%. I know each

case is

> different but 'in general' is this percentage correct?

>

> I have to wonder where your nsg got his numbers 5-10% chance of

> retethering. Could it be 90 to 95 out of every 100 surgeries he

has

> performed, the patient has not retethered? In what period of

time, 1

> week? 10 years? I do not mean to be sarcastic, but the numbers

just are

> not out there for someone to state such a statistic. I asked my

nsg what

> the chances of my retethering were and he said there was no way

to tell,

> some do, some dont, there are so many different circumstances for

each

> patient. Look at our group here, 433 members, I am just guessing

but I

> would bet OUR number is around 70-80% have retethered or are

currently

> retethered. I think the optimistic approach is to just assume

that you

> will not retether, period.

>

> Rick

>

>

[Guest guest]

Hi Abby,

Thanks for taking time to respond to my question. I am going to claim

ignorance... but am I right that LMC's carry a higher risk of retethering? I

thought I read that somewhere?

Thanks,

Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

> lipomeningomyelocele's. My neurosurgeon claims that the rate of

> retether is a 5% chance. But since I had so much scar tissue and

> arachnoiditis he said it might go as high as 10%. I know each

case is

> different but 'in general' is this percentage correct?

>

> I have to wonder where your nsg got his numbers 5-10% chance of

> retethering. Could it be 90 to 95 out of every 100 surgeries he

has

> performed, the patient has not retethered? In what period of

time, 1

> week? 10 years? I do not mean to be sarcastic, but the numbers

just are

> not out there for someone to state such a statistic. I asked my

nsg what

> the chances of my retethering were and he said there was no way

to tell,

> some do, some dont, there are so many different circumstances for

each

> patient. Look at our group here, 433 members, I am just guessing

but I

> would bet OUR number is around 70-80% have retethered or are

currently

> retethered. I think the optimistic approach is to just assume

that you

> will not retether, period.

>

> Rick

>

>

[Guest guest]

I asked our NS this week about the chances of my LMC daughter having her

cord re-tether. He told me 100% chance of it happening. The question is he

said will it cause her problems or not. Unfortunately, we were interupted

(by my almost 3 year old) and didn't have a chance to go back to this

subject. We will go back in 6 weeks, I am going to question him further on

what he meant.

Anne

Mama to le and Conner

Reply-To: tetheredspinalcord

To: <tetheredspinalcord >

Subject: Re: rate of reocurring tethered cord

Date: Fri, 1 Sep 2006 22:29:46 -0700

Hi Abby,

Thanks for taking time to respond to my question. I am going to claim

ignorance... but am I right that LMC's carry a higher risk of retethering? I

thought I read that somewhere?

Thanks,

Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

>lipomeningomyelocele's. My neurosurgeon claims that the rate of retether is

>a 5% chance. But since I had so much scar tissue and arachnoiditis he said

>it might go as high as 10%. I know each

case is

>different but 'in general' is this percentage correct?

>

>I have to wonder where your nsg got his numbers 5-10% chance of

>retethering. Could it be 90 to 95 out of every 100 surgeries he

has

>performed, the patient has not retethered? In what period of

time, 1

>week? 10 years? I do not mean to be sarcastic, but the numbers

just are

>not out there for someone to state such a statistic. I asked my

nsg what

>the chances of my retethering were and he said there was no way

to tell,

>some do, some dont, there are so many different circumstances for

each

>patient. Look at our group here, 433 members, I am just guessing

but I

>would bet OUR number is around 70-80% have retethered or are

currently

>retethered. I think the optimistic approach is to just assume

that you

>will not retether, period.

>

>Rick

>

>

[Guest guest]

,

As far as I have read, complicated lmc almost always retethers. I

didnt want to write that as it may scare some parents. lmc is a

general term for a lipoma that infiltrates from the outside to make a

tunnel thru the spine, dura and spinal cord - thereby causing a

defect in the spinal bones and dura. The severity of this may vary.

Most of them involve the nerves.

But lmc itself even in its milder form is a relatively severe

condition, and carries a very high risk of retethering.

I too have heard many times over that it will retether, but whether

it causes a problem or not is something that no one knows. I always

wonder about this statement. If anyone knows the answer, please let

me know. Re-tethering occurs almost immediately after un-tethering as

the body heals. If it will always re-tether, then why un-tether in

the first place? Why wait for symptoms the second time? Why not just

wait for symptoms the first time?

Abby.

> >

> >Rick,

> >

> >Hi there. Good to hear from you. I didn't take your remark as

> sarcastic. I had a feeling in my gut that those figures aren't

> right. I have been looking for medical articles to support or not

> support the statement. I guess I just trusted him. I worked in the

> ICU as a nurse with him. I respected him as the best NS in the

> area. I checked out his references and he has gotten many awards for

> his skill as a NS, serves as assoc. professor at UCLA etc..... So I

> was embarrassed to question his ability/ knowledge. I realize that

> he may be a great NS in other areas and might not have the

experience

> with TSC. Initially when I had my surgical consult he said that the

> surgery would be straight forward and easy. Well I made him work for

> his money. I had alot more scar tissue and lipoma entangled in my

> nerves and filum terminale. Anyways, before I ever have another cord

> release I will get references. Thanks Rick for your kind reply.

> >

> >Peace,

> >

> > Re: rate of reocurring tethered cord

> >

> >

> > Filipi said the following on 8/30/2006 10:01 AM:

> > > Hi Everyone,

> > >

> > > I had a question for the group. I have had two detetherings for

> my

> >lipomeningomyelocele's. My neurosurgeon claims that the rate of

retether is

> >a 5% chance. But since I had so much scar tissue and arachnoiditis

he said

> >it might go as high as 10%. I know each

> case is

> >different but 'in general' is this percentage correct?

> >

> >I have to wonder where your nsg got his numbers 5-10% chance of

> >retethering. Could it be 90 to 95 out of every 100 surgeries he

> has

> >performed, the patient has not retethered? In what period of

> time, 1

> >week? 10 years? I do not mean to be sarcastic, but the numbers

> just are

> >not out there for someone to state such a statistic. I asked my

> nsg what

> >the chances of my retethering were and he said there was no way

> to tell,

> >some do, some dont, there are so many different circumstances for

> each

> >patient. Look at our group here, 433 members, I am just guessing

> but I

> >would bet OUR number is around 70-80% have retethered or are

> currently

> >retethered. I think the optimistic approach is to just assume

> that you

> >will not retether, period.

> >

> >Rick

> >

> >

[Guest guest]

I'm sorry, I'm new. What does LMC stand for?

Anne Klein wrote: I asked our NS this week about

the chances of my LMC daughter having her

cord re-tether. He told me 100% chance of it happening. The question is he

said will it cause her problems or not. Unfortunately, we were interupted

(by my almost 3 year old) and didn't have a chance to go back to this

subject. We will go back in 6 weeks, I am going to question him further on

what he meant.

Anne

Mama to le and Conner

Reply-To: tetheredspinalcord

To: <tetheredspinalcord >

Subject: Re: rate of reocurring tethered cord

Date: Fri, 1 Sep 2006 22:29:46 -0700

Hi Abby,

Thanks for taking time to respond to my question. I am going to claim

ignorance... but am I right that LMC's carry a higher risk of retethering? I

thought I read that somewhere?

Thanks,

Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

>lipomeningomyelocele's. My neurosurgeon claims that the rate of retether is

>a 5% chance. But since I had so much scar tissue and arachnoiditis he said

>it might go as high as 10%. I know each

case is

>different but 'in general' is this percentage correct?

>

>I have to wonder where your nsg got his numbers 5-10% chance of

>retethering. Could it be 90 to 95 out of every 100 surgeries he

has

>performed, the patient has not retethered? In what period of

time, 1

>week? 10 years? I do not mean to be sarcastic, but the numbers

just are

>not out there for someone to state such a statistic. I asked my

nsg what

>the chances of my retethering were and he said there was no way

to tell,

>some do, some dont, there are so many different circumstances for

each

>patient. Look at our group here, 433 members, I am just guessing

but I

>would bet OUR number is around 70-80% have retethered or are

currently

>retethered. I think the optimistic approach is to just assume

that you

>will not retether, period.

>

>Rick

>

>

[Guest guest]

Hi Abby,

You have a valid point. I also wonder why they suggest surgery on infants that

are not yet having any symptoms. It seems to me since almost all LMS'c retether

then why not wait the first surgery to " buy time? " I had my first detethering

at the age of two after frequent UTI's. I am not sure if I already showed signs

of a neurogenic bladder before surgery or if my neurogenic bladder is as a

result from surgery? Either case it is what I was left with.

To give you a little hope.... After the first surgery I didn't have any signs or

symptoms (besides neurogenic bladder and all the things that come with that)

until last year at the age of 32. Honestly, I was like everyone else. I was

very physically active i.e biking, running, sailing, kayaking etc.... So I

hope this gives you some consolation for your sweet little girl. I wish her

never to be " retethered " . If she does I hope it is many, decades from now.

Thanks for your info:)

Peace,

Re: rate of reocurring tethered cord

> >

> >

> > Filipi said the following on 8/30/2006 10:01 AM:

> > > Hi Everyone,

> > >

> > > I had a question for the group. I have had two detetherings for

> my

> >lipomeningomyelocele's. My neurosurgeon claims that the rate of

retether is

> >a 5% chance. But since I had so much scar tissue and arachnoiditis

he said

> >it might go as high as 10%. I know each

> case is

> >different but 'in general' is this percentage correct?

> >

> >I have to wonder where your nsg got his numbers 5-10% chance of

> >retethering. Could it be 90 to 95 out of every 100 surgeries he

> has

> >performed, the patient has not retethered? In what period of

> time, 1

> >week? 10 years? I do not mean to be sarcastic, but the numbers

> just are

> >not out there for someone to state such a statistic. I asked my

> nsg what

> >the chances of my retethering were and he said there was no way

> to tell,

> >some do, some dont, there are so many different circumstances for

> each

> >patient. Look at our group here, 433 members, I am just guessing

> but I

> >would bet OUR number is around 70-80% have retethered or are

> currently

> >retethered. I think the optimistic approach is to just assume

> that you

> >will not retether, period.

> >

> >Rick

> >

> >

[Guest guest]

Hi Jozie,

Maybe I am mistaken but wasn't it your baby that was having surgery? If so how

is she? I have been thinking/praying for you all.

Peace,

Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

>lipomeningomyelocele's. My neurosurgeon claims that the rate of retether is

>a 5% chance. But since I had so much scar tissue and arachnoiditis he said

>it might go as high as 10%. I know each

case is

>different but 'in general' is this percentage correct?

>

>I have to wonder where your nsg got his numbers 5-10% chance of

>retethering. Could it be 90 to 95 out of every 100 surgeries he

has

>performed, the patient has not retethered? In what period of

time, 1

>week? 10 years? I do not mean to be sarcastic, but the numbers

just are

>not out there for someone to state such a statistic. I asked my

nsg what

>the chances of my retethering were and he said there was no way

to tell,

>some do, some dont, there are so many different circumstances for

each

>patient. Look at our group here, 433 members, I am just guessing

but I

>would bet OUR number is around 70-80% have retethered or are

currently

>retethered. I think the optimistic approach is to just assume

that you

>will not retether, period.

>

>Rick

>

>

[Guest guest]

Filipi wrote:

> Hi Abby,

>

> You have a valid point. I also wonder why they suggest surgery on infants

that are not yet having any symptoms.

Maybe it is because the LMC is very small and not yet intertwined in all

the nerves yet. Preventative surgery.

Someone asked what LMC is. It is short for lipomyelominingeocele, I dont

know if thats the correct spelling, best I can do. Now you know why we

just type LMC. A LMC is fatty tissue that intertwines in the nerve roots

in the dura, VERY difficult for a nsg to remove it all, thats why people

with LMC usually retether, the non-malignant fatty tumor usually

continues to grow unless it is all removed. So it makes sense to me that

in an infant with a very small LMC and no symptoms, to go in there and

get it out now.

Rick

[Guest guest]

(and the rest of the group)

For the first time in my life, I've been without words. I've been silently

lurking on this site just reading about everyone questions, etc. It's been sort

of therapeutic for me. When she'd sleep I'd go out to the computer room outside

her hospital room and just read all the posts it helped me feel like I wasn't

alone. Little Miss is a tough little girl. Within 4 days of her

surgery she was on Tylenol and Motrin (after a pretty bad reaction to Morphine)

and we brought her home on the 5th day. Other than being a bit fussier than

before and the inability to wear diapers you really wouldn't know anything had

occurred. The scar is hard for me to look at, though it looks good, it just

breaks my heart and reminds me of what she went through. As every parent on

this board has experienced, the sights and sounds of what your little one is

going through is nothing you'll forget anytime soon. However, within hours I

found myself very grateful for 's

condition. As I looked around the children's hospital it was so obvious that

her diagnosis could have been way worse. I, UNLIKE many of the weary eyed

parents in the hospital, get to take my child home. For that I have to be ultra

thankful.

At this point we are on 'stand by' as to her prognosis. The doctor's were

fabulous, but of course can't give you the golden ticket you're hoping for (the

ticket e.g. their reassurance that she'll be okay, as I know you all know, no

one can say).

The ns gave us the Polaroids of her spinal cord that he took during the

surgery, pretty amazing when you think about it but hard to believe that its

your child your looking at.

I can't thank everyone enough for your support, prayers and answers. Though

we realize we have a long, tough road ahead of us I am so grateful for all the

information I was able to extract from you all. Truly having this group to

'virtually' lean on, was such a help in my moment of crisis. Thanks again, Jozie

Filipi wrote:

Hi Jozie,

Maybe I am mistaken but wasn't it your baby that was having surgery? If so how

is she? I have been thinking/praying for you all.

Peace,

Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

>lipomeningomyelocele's. My neurosurgeon claims that the rate of retether is

>a 5% chance. But since I had so much scar tissue and arachnoiditis he said

>it might go as high as 10%. I know each

case is

>different but 'in general' is this percentage correct?

>

>I have to wonder where your nsg got his numbers 5-10% chance of

>retethering. Could it be 90 to 95 out of every 100 surgeries he

has

>performed, the patient has not retethered? In what period of

time, 1

>week? 10 years? I do not mean to be sarcastic, but the numbers

just are

>not out there for someone to state such a statistic. I asked my

nsg what

>the chances of my retethering were and he said there was no way

to tell,

>some do, some dont, there are so many different circumstances for

each

>patient. Look at our group here, 433 members, I am just guessing

but I

>would bet OUR number is around 70-80% have retethered or are

currently

>retethered. I think the optimistic approach is to just assume

that you

>will not retether, period.

>

>Rick

>

>

[Guest guest]

Hi gang,

Just back from a trip to southern California...and catching up on all

the list posts. Whew!

A comment or two on this topic...it's really hard to make the decision

to operate or not, when your child or you develop a lot of scar tissue

in response to the " insult " of the surgical incision. One of the

problem of repeated surgeries is that each time the incision gets a

little bigger, because the surgeon must remove all the old scars and

to see the surgical field, the incision is a little larger each time.

It's like being between a rock and a hard place. I'm sure the

surgeon might want to wait for concern of making even more scar tissue.

I've also heard that in Europe there is a tendency to wait a little

more than in the US for a cord release if a child has no tc symptoms.

The retethering is pretty much created by the scar tissue. I consulted

with a spinal cord surgeon, who told me that there was no way to open

the dura without creating some scar tissue.

My understanding is that in LMC, or lipomyelomeningocele, the damage

is done by the progressive pulling on the cord as we move, twist or

turn thru our lives because the cord isn't loose at the bottom, but

rather is tethered.

At first the vertebra do not close before the first month of a

pregnancy is over. About the same time the same tissue that made the

cord and vertebra forms a lipoma and that gets stuck in the back of

vertebra that failed to close (again in the soon-to-be-baby).

If the open back vertebra permits, the spinal nerves can herniate

outside the bone (like in regular spina bifida) just as the lipoma is

going inside - so they all become entangled along with the nerve

roots. By definition the lipoma is outside and inside the dura (or

it's a different kind of tether - intradural) abut the degree of

nerves tangled in it can vary.

The lipoma connected with LMC isn't like the lipomas that tend to

develop as we (I'm 60!!) age. They rarely grow other than in

proportion like for example an arm or leg, but will get larger if we

gain a lot of weight. I grew up with a huge uncorrected LMC and the

part of the lipoma that was subdural looked like a football laying

across my buttocks as an adult. As a child, it looked like a nerf

football, when I was nerf size <g>.

V

[Guest guest]

Jozie,

I so feel for you. I wrote to you because I had been thinking of you. At 7:30

on Mon morning I said a BIG prayer for you, Sweet and the surgeons.

Having tsc isn't easy but I would much rather have it than my three year old

little boy. It is hard seeing all the patients there at Mission Hospital. And

you are right that you are lucky to be at home now instead of the other patients

that can't leave. But it still is hard.

I just wanted to send my thoughts and prayers to you and your little girl. I am

so happy to hear that it well. Please let me know if you need anything. I am

down in Aliso Viejo.

Peace,

Re: rate of reocurring tethered cord

>

>

> Filipi said the following on 8/30/2006 10:01 AM:

> > Hi Everyone,

> >

> > I had a question for the group. I have had two detetherings for

my

>lipomeningomyelocele's. My neurosurgeon claims that the rate of retether is

>a 5% chance. But since I had so much scar tissue and arachnoiditis he said

>it might go as high as 10%. I know each

case is

>different but 'in general' is this percentage correct?

>

>I have to wonder where your nsg got his numbers 5-10% chance of

>retethering. Could it be 90 to 95 out of every 100 surgeries he

has

>performed, the patient has not retethered? In what period of

time, 1

>week? 10 years? I do not mean to be sarcastic, but the numbers

just are

>not out there for someone to state such a statistic. I asked my

nsg what

>the chances of my retethering were and he said there was no way

to tell,

>some do, some dont, there are so many different circumstances for

each

>patient. Look at our group here, 433 members, I am just guessing

but I

>would bet OUR number is around 70-80% have retethered or are

currently

>retethered. I think the optimistic approach is to just assume

that you

>will not retether, period.

>

>Rick

>

>

[Guest guest]

I totally understand where you are coming from, and what you are

questioning.

What I have gathered, over time, is it is done the first time because of

fear, unfamilarality, naivity (even if you know all the stuff beforehand,

somehow, once it hits you head on, all that you have known, somehow

disappears, temporarily......because of the shock of it all, the reality,

but yet it feeling like it isn't real)........and I'm not saying all that is

on the patients side of the Fence, there is another side as well. For

those with Lipomyelomenigocele, I imagine that it is done for the above

reasons, plus the noticable (for some) Lipoma, as well. That's just what

I've gathered and reasoned myself.

I have noticed that they do wait longer now, then they used to, alot of the

time. They wait until Symptoms show up (for the first time) more now then

they used to.

Me

Nebraska, USA

mymocha@...

but

if it going to get re-tethered anyway, and the second time around if

I am going to wait for symptoms, why not wait the first time? My ns

didnt have a proper answer.