Re: Strength Loss After Spinal Surgery/ TLSO

[Guest guest]

,

I am not offended in any way by your opinion. I totally appreciate

your sharing information.

A year ago, one of 's doctors started mentioning the possibility

of using a TLSO for her. I had seen a few kids online who used them.

So, we went to 3 other doctors as well and had long talks about the

TLSO. I demanded that they give me the citations for all of the

studies they mentioned about the supposed benefits/drawbacks to the

TLSO. It took a while, but I eventually researched online & /or

ordered copies of professional articles so that I could read for

myself what the doctors were talking about. (I would be happy to

email you links if you would like.)

All of the opinions seem to support what the doctors told us. The

TLSO was used on SMA patients beginning in the 1970's, but over the

years they discovered that it does not slow progression of scoliosis

and does not prevent inevitable curvature. The only concrete benefit

they found is that it may provide comfort to a child who is so bent

over that he/she cannot sit properly or breath. However, for a child

(like ) who has moderate trunk strength, if you put her in a TLSO

for a long time every day, she will completely lose that trunk

strength. Depending upon the child, that could be a huge risk you may

not want to take simply for the benefit of short-term comfort.

For kids in their teens or twenties, it was very common to have been

given a TLSO because that's what the doctors believed was best twenty

years ago. What I don't understand is that in certain parts of the US

(like the south), the TLSO is still routinely prescribed today. I

haven't been able to find out why that's the case. Do those doctors

know something? All of the research I've found so far favors not

prescribing the TLSO except in certain exceptional cases.

If anyone knows anything else on this matter, I would be eager to hear

about it.

Thanks,

>

> Anyway, hope I didn't offend by " second guessing " your doctor, but

> that's what these forums are for...the sharing of information and

> experiences.

>

> Take care,

>

[Guest guest]

,

I have to agree with . Though it definitely won't stop the inevitable, I

think it can help slow the progression. Jordan wore a TLSO during most waking

hours, and we believe it did provide a benefit. I know there are varying

opinions from the doctors, even the SMA " experts " , but the concept makes sense.

Scoliosis in SMA is not a congenital issue, it's caused by gravity. That

gravitational pull is strongest on the compressed spine when upright, so it

would " theoretically " make sense that providing support to reduce the affect of

the pull would have some positive impact (even if only minor) on the speed or

extent of the the curve. It probably did cause some loss in trunk support, but

I can also tell you that the " strapped in the back " TLSO had a positive impact

on his cough and VC. The rigidity of the device provided something stronger

than his SMA compromised abdominal muscles for his diaphragm to contract

against. This is significant because SMAers are

predominantly diaphramic breathers. Since his spinal fusion, he no longer uses

a TLSO, but we've noticed a big negative impact on his cough and VC as a result

of the reduced abdominal support.

Where we probably made a mistake was not have a new one made frequently enough

to keep up with his growth. Had we done this, I think would have helped more

with control of the " twisting " that occurs along with the collapsing. I think

the TLSO definietly helped with the twisting as well, but I think it could have

been better if we had new ones made more often.

Also, we are from the North (i.e. Western New York) and our doctors there, and

at JHU (in mid-Atlantic area), believe the TLSO is a good thing.

That's just my opinion based upon our experience...but I'm definitely not an

expert nor an MD. I suppose it's possible that if we hadn't used the TLSO the

progression might have been the same, or even slower...but it didn't seem like

it.

Jay

Re: Strength Loss After Spinal Surgery/ TLSO

,

I am not offended in any way by your opinion. I totally appreciate

your sharing information.

A year ago, one of 's doctors started mentioning the possibility

of using a TLSO for her. I had seen a few kids online who used them.

So, we went to 3 other doctors as well and had long talks about the

TLSO. I demanded that they give me the citations for all of the

studies they mentioned about the supposed benefits/drawbacks to the

TLSO. It took a while, but I eventually researched online & /or

ordered copies of professional articles so that I could read for

myself what the doctors were talking about. (I would be happy to

email you links if you would like.)

All of the opinions seem to support what the doctors told us. The

TLSO was used on SMA patients beginning in the 1970's, but over the

years they discovered that it does not slow progression of scoliosis

and does not prevent inevitable curvature. The only concrete benefit

they found is that it may provide comfort to a child who is so bent

over that he/she cannot sit properly or breath. However, for a child

(like ) who has moderate trunk strength, if you put her in a TLSO

for a long time every day, she will completely lose that trunk

strength. Depending upon the child, that could be a huge risk you may

not want to take simply for the benefit of short-term comfort.

For kids in their teens or twenties, it was very common to have been

given a TLSO because that's what the doctors believed was best twenty

years ago. What I don't understand is that in certain parts of the US

(like the south), the TLSO is still routinely prescribed today. I

haven't been able to find out why that's the case. Do those doctors

know something? All of the research I've found so far favors not

prescribing the TLSO except in certain exceptional cases.

If anyone knows anything else on this matter, I would be eager to hear

about it.

Thanks,

>

> Anyway, hope I didn't offend by " second guessing " your doctor, but

> that's what these forums are for...the sharing of information and

> experiences.

>

> Take care,

>

[Guest guest]

All I can say is what I have heard and read from doctors. I

originally was told about the TLSO being a regional preference by

Dr. Ianoccone in Dallas, whom I consider to be one of the top

experts on SMA. She told us that her spine specilists practically

never prescribe a TLSO anymore unless the family demands it for some

reason. Of all our doctors, she mailed me the most academic

research to back up what she was saying. The bone doctor at

Columbia (NYC) told us the same thing and pretty much cited the same

sources. He also said you see TLSO's prescribed in certian parts of

the country more than others.

I have no first hand knowledge of using a TLSO. does have the

ability to sit alone and turn and reach without toppling over. Most

of that ability she gained through pool therapy. I have no doubt

that if we put her in a TLSO every day, all that muscle tone would

disappear and she would become totally dependent upon it just to

remain upright. We decided we weren't willing to take that risk.

All of the academic resreach on TLSO's shows no evidence that it

will slow or avoid scoliosis. So, that's what we made our decision

on. I can't say that would be the right decision for everyone.

>

> ,

>

> I have to agree with . Though it definitely won't stop the

inevitable, I think it can help slow the progression. Jordan wore a

TLSO during most waking hours, and we believe it did provide a

benefit. I know there are varying opinions from the doctors, even

the SMA " experts " , but the concept makes sense. Scoliosis in SMA is

not a congenital issue, it's caused by gravity. That gravitational

pull is strongest on the compressed spine when upright, so it

would " theoretically " make sense that providing support to reduce

the affect of the pull would have some positive impact (even if only

minor) on the speed or extent of the the curve. It probably did

cause some loss in trunk support, but I can also tell you that

the " strapped in the back " TLSO had a positive impact on his cough

and VC. The rigidity of the device provided something stronger than

his SMA compromised abdominal muscles for his diaphragm to contract

against. This is significant because SMAers are

> predominantly diaphramic breathers. Since his spinal fusion, he

no longer uses a TLSO, but we've noticed a big negative impact on

his cough and VC as a result of the reduced abdominal support.

>

> Where we probably made a mistake was not have a new one made

frequently enough to keep up with his growth. Had we done this, I

think would have helped more with control of the " twisting " that

occurs along with the collapsing. I think the TLSO definietly

helped with the twisting as well, but I think it could have been

better if we had new ones made more often.

>

> Also, we are from the North (i.e. Western New York) and our

doctors there, and at JHU (in mid-Atlantic area), believe the TLSO

is a good thing.

>

> That's just my opinion based upon our experience...but I'm

definitely not an expert nor an MD. I suppose it's possible that if

we hadn't used the TLSO the progression might have been the same, or

even slower...but it didn't seem like it.

>

> Jay

>

> Re: Strength Loss After Spinal Surgery/ TLSO

>

> ,

> I am not offended in any way by your opinion. I totally appreciate

> your sharing information.

>

> A year ago, one of 's doctors started mentioning the

possibility

> of using a TLSO for her. I had seen a few kids online who used

them.

> So, we went to 3 other doctors as well and had long talks about

the

> TLSO. I demanded that they give me the citations for all of the

> studies they mentioned about the supposed benefits/drawbacks to

the

> TLSO. It took a while, but I eventually researched online & /or

> ordered copies of professional articles so that I could read for

> myself what the doctors were talking about. (I would be happy to

> email you links if you would like.)

>

> All of the opinions seem to support what the doctors told us. The

> TLSO was used on SMA patients beginning in the 1970's, but over

the

> years they discovered that it does not slow progression of

scoliosis

> and does not prevent inevitable curvature. The only concrete

benefit

> they found is that it may provide comfort to a child who is so

bent

> over that he/she cannot sit properly or breath. However, for a

child

> (like ) who has moderate trunk strength, if you put her in a

TLSO

> for a long time every day, she will completely lose that trunk

> strength. Depending upon the child, that could be a huge risk you

may

> not want to take simply for the benefit of short-term comfort.

>

> For kids in their teens or twenties, it was very common to have

been

> given a TLSO because that's what the doctors believed was best

twenty

> years ago. What I don't understand is that in certain parts of the

US

> (like the south), the TLSO is still routinely prescribed today. I

> haven't been able to find out why that's the case. Do those

doctors

> know something? All of the research I've found so far favors not

> prescribing the TLSO except in certain exceptional cases.

>

> If anyone knows anything else on this matter, I would be eager to

hear

> about it.

> Thanks,

>

>

> >

> > Anyway, hope I didn't offend by " second guessing " your doctor,

but

> > that's what these forums are for...the sharing of information and

> > experiences.

> >

> > Take care,

> >

>

>

>

>

>

>

>

[Guest guest]

,

I have been wearing a TLSO most of my life. During an adolescent

growth spurt I outgrew one right after it was made. Our insurance

wouldn't cover another for 9 more months, so I went without. My spine

went from about 80 degrees to 126 in that time. The TLSO did indeed

restrict my chest but it slowed my scoliosis significantly. In the

end, my severe scoliosis was bad on my respiratory system and is why I

became a poor candidate for the spinal surgery. If you go without the

TLSO (I loved going without it), I recommend keeping a very close eye

on her curvature.

All the best,

Alana

[Guest guest]

>.... does have the ability to sit alone and turn and reach

without toppling over.....

>

>

,

I understand that you want to keep the torso strength that she

has for as long a time as possible. How old is ? Danny had

started toppling over to one side because of the scoliosis by age 4,

and had to support that side with his arm locked in order to stay up

so only had the use of one arm for playing on the floor. However, once

he began wearing a TLSO, he was able to sit better again without his

arm for support and continued to do so through about age 7. Danny was

in the water daily at that age too, so he'd use his muscles a lot

then. Also, we always did other therapy and exercises daily through

ball throwing and catching, reaching out, etc. to work his torso and

other muscles. Anyway, I wanted you to know that wearing a TLSO

doesn't mean you have to just give up on those torso muscles...even

with it on, Danny could still do stuff to use them. I do wish that

more families or individuals who haven't used a TLSO would post about

their experiences with scolioses progression, lung function, mobility,

etc.

My advice, as unprofessional as it is ... Keep a close eye on how the

scoliosis is progressing with very frequent x-rays and exams and turn

to using a TLSO if it continues to increase quickly. Also, if

starts to lose mobility or function in other ways caused by the

scoliosis, consider the TLSO to help that. Also, be sure to keep in

mind the decrease of lung function, as the scoliosis can begin to

inhibit the lungs ability to expand.

I admire you for all the research you have done as well as your

willingness to take in the advice of us strangers in order to make

informed decisions for your daughter. In the end, you know and

her situation best.

~~