Scoliosis Surgery

[Guest guest]

Comment to the group as well...

[Guest guest]

Jeni,

I wanted to make sure and share somthing with you, hopefully before your

ortho appointment. initially was recommended to have a posterior only

fusion due to our first Doctors opinion that he did not recommend an anterior

due

to respiratory risk. I met a woman thankfully who gave me a name for a second

opinion. Fortunately the Doctor who actually did the surgery uses a newer

technique that allows them to do anterior and posterior in one 8-10 hour

surgery.

They do the front first through small incisions on the side, going in through

a small space created by going between ribs, and collapsing the lung on that

side. They were able to releases and fusions with minimal trauma except a chest

tube afterward, they turned him over and were able to do the backside. I

strongly suggest you make sure to discuss options. I was told by multiple

sources

if you only do the back, the front can continue to grow and over time you end

up with a " crankshaft " twisting deformtiy that is worse then the original.

Our experience was an 8 hour surgery followed by a 2 week ICU stay, to direct

discharge home. He remained on the vent for 5 days, and was weaned to BIAP.

Pain was manage through a patient controlled button. The main increase in pain

occured when he was weaned from the vent they had to jump from narcotics to

ibuprofen! To avoid respiratory depression that might interfere with coming off

vent.

We are professional log rollers now, which started then and will continue

on...

We have a ceiling track lift system which is the most awesome device ever

invented. We have a special sling for lifting since the surgery. If you would

like info on it go to

http://www.waverleyglen.com/trans.html this was the most helpful piece of

equipment we have ever gotten. It works like a dream, and has saved my back and

promotes safe transfers.

Please let me know if I can help with any questions...

Ronna

[Guest guest]

I thought removing the growth plates would also stop that crankshafting?

The docs I've heard speak on this have said the front and back was much

more invasive so it's great if there is an alternative technique. This

whole scoliosis surgery thing has me scared and I'm glad Bernie doesn't

need it yet. Jeni, I hope all goes well for h!

Ronna, what shape of sling did you choose? We are looking at lifts these

days - a ceiling track portable one like the waverly one you mention.

Any other opinions on best kind and shape of slings and lifts?

Thanks everyone,

bettylou

mominsearch@... wrote:

>

>

> Jeni,

>

> I wanted to make sure and share somthing with you, hopefully before your

> ortho appointment. initially was recommended to have a posterior

> only

> fusion due to our first Doctors opinion that he did not recommend an

> anterior due

> to respiratory risk. I met a woman thankfully who gave me a name for a

> second

> opinion. Fortunately the Doctor who actually did the surgery uses a newer

> technique that allows them to do anterior and posterior in one 8-10 hour

> surgery.

> They do the front first through small incisions on the side, going in

> through

> a small space created by going between ribs, and collapsing the lung on

> that

> side. They were able to releases and fusions with minimal trauma except

> a chest

> tube afterward, they turned him over and were able to do the backside. I

> strongly suggest you make sure to discuss options. I was told by

> multiple sources

> if you only do the back, the front can continue to grow and over time

> you end

> up with a " crankshaft " twisting deformtiy that is worse then the original.

>

> Our experience was an 8 hour surgery followed by a 2 week ICU stay, to

> direct

> discharge home. He remained on the vent for 5 days, and was weaned to BIAP.

> Pain was manage through a patient controlled button. The main increase

> in pain

> occured when he was weaned from the vent they had to jump from narcotics to

> ibuprofen! To avoid respiratory depression that might interfere with

> coming off

> vent.

>

> We are professional log rollers now, which started then and will continue

> on...

>

> We have a ceiling track lift system which is the most awesome device ever

> invented. We have a special sling for lifting since the surgery. If you

> would

> like info on it go to

> http://www.waverleyglen.com/trans.html

> <http://www.waverleyglen.com/trans.html> this was the most helpful piece of

> equipment we have ever gotten. It works like a dream, and has saved my

> back and

> promotes safe transfers.

>

> Please let me know if I can help with any questions...

>

> Ronna

>

[Guest guest]

I wonder what would happen to me now, if I was born in the 90's?

By the sounds of it, I am glad I wasn't.

I suppose I am lucky...maybe my health and abilities at the same ages as

today's kids was better. I can only assume so as I think today's doctors

would have done things differently and I would be worse off ...

Sure my fusion is my entire spine (It was known as the Harrington) and it went

right up my back to just below my neck base...allowing my head to move. I had

a pelvic rod inserted to support the base of the spinal rods and the spinal

rods were telescopic (it extended some to allow me to grow ... they used my

mothers spine length as a guide/marker). I never caved forward, never twisted

nor tilted during the remaining years of growth.

The surgery didn't interfere with my lungs functions either. It actually

increased them.

All I know is even though back in the 70's medicine wasn't advance, the

doctors kept to the basic, simple procedures........and they worked for me.

What Jeni describes scares the crap out of me! If our lungs are so precious,

why do a surgery that collapses them PLUS why fuse the spine vertebrae in

that manner? Did I understand that this procedure does not involve rods? Is

it a method of inserting " material " in between each vertebrae? Its no wonder

it could cause a " crankshaft " .........duh!!!!!!!!! I know I ain't no doctor,

but my simple, layman brain says ... that could shift, slip out of place way

easier than a screwed in rod.

Track lifts are great when it can be afforded.

I am fortunate enough to have a husband who can lift me unassisted.

Angie

On Tuesday 06 June 2006 07:54, mominsearch@... wrote:

> Jeni,

>

> I wanted to make sure and share somthing with you, hopefully before your

> ortho appointment. initially was recommended to have a posterior

> only fusion due to our first Doctors opinion that he did not recommend an

> anterior due to respiratory risk. I met a woman thankfully who gave me a

> name for a second opinion. Fortunately the Doctor who actually did the

> surgery uses a newer technique that allows them to do anterior and

> posterior in one 8-10 hour surgery. They do the front first through small

> incisions on the side, going in through a small space created by going

> between ribs, and collapsing the lung on that side. They were able to

> releases and fusions with minimal trauma except a chest tube afterward,

> they turned him over and were able to do the backside. I strongly suggest

> you make sure to discuss options. I was told by multiple sources if you

> only do the back, the front can continue to grow and over time you end up

> with a " crankshaft " twisting deformtiy that is worse then the original.

>

> Our experience was an 8 hour surgery followed by a 2 week ICU stay, to

> direct discharge home. He remained on the vent for 5 days, and was weaned

> to BIAP. Pain was manage through a patient controlled button. The main

> increase in pain occured when he was weaned from the vent they had to jump

> from narcotics to ibuprofen! To avoid respiratory depression that might

> interfere with coming off vent.

>

> We are professional log rollers now, which started then and will continue

> on...

>

> We have a ceiling track lift system which is the most awesome device ever

> invented. We have a special sling for lifting since the surgery. If you

> would like info on it go to

> http://www.waverleyglen.com/trans.html this was the most helpful piece of

> equipment we have ever gotten. It works like a dream, and has saved my back

> and promotes safe transfers.

>

> Please let me know if I can help with any questions...

>

> Ronna

>

>

>

[Guest guest]

We used a universal sling that was specially designed to be a combination of

a hammock and traditional usling to give more stability with the lift. U

slings are great because they are water resistant for bathing and can easily be

put

on and off while sitting in their chair. I can send pictures if you like.

Ronna

[Guest guest]

No you don't sound like an idiot--just a caring mama! I got my surgery when I

was 6 so I can't remember much about the recovery except that when I had my

G-tube surgery it hurt FAR worse than the back surgery. So maybe it won't be as

bad as her G-tube surgery.

I don't know for sure about the rod being at risk of movement but when I fell

3 yrs ago and broke my femur it did not cause any pain/problems to my spinal rod

(that I know of). I don't think you can have a MRI with the metal in your back

so watch out for that. -a

Jenifer Woody <mom2armybratz@...> wrote:

First I want to thank everyone who responded to my questions. I have

been running CRAZY trying to get ready for MDA camp (she leaves Sunday) and get

things in order for surgery. We were actually hoping for a July surgery date (to

miss less school), but no such luck. h's surgery is scheduled for August

14th at 7:15am. We'll have to be there at 6am -- ICK! On the 10th she'll have

the pre-op appointment and then her patch appointment (meeting w/ the

anesthesiologist, surgical nurses etc) We're not looking forward to the bending

x-rays and other pre-op stuff that will be difficult for us and uncomfy for her,

but we know it's necessary. The doc thinks he'll be able to get full correction;

because of the constant bracing h's curve has remained fairly flexible. We

are still dreading the post-op weeks of recovery and I'm still wondering how I'm

going to lift her without causing terrible pain. I about kicked myself after her

g-tube surgery for causing her pain

(wondered if I

had made the right choice), so the guilt from this one should be HUGE. Any

advice on the guilt issue?

I really hate to sound like an idiot here, but I'm also worried about lifting

her even after she's healed on the outside! I keep thinking " what if I break

something in there? " Is it possible to accidentally mess up a fusion w/ rods?

Ok, now I'm babbling.......

Thanks again to everyone who responded and if y'all think of anything else that

might be helpfull please let us know!

Love and Hugs

Jeni

[Guest guest]

The whole lifting thing is going to be hard. I got

lucky and didnt have too much post op pain once we

were all said and done. As for the guilt... you just

have to keep reminding yourself that you are doing

everything the best that you can! h probably will

hurt and probably will yell... just know she isnt

yelling AT YOU she is yelling at the pain! As for

popping a rod... I think you'd have to do something

crazy weird to do that. I have been fused for over 10

years now and havent had any problems. I have done

some crazy stuff to include flipping my chair! Those

things are in there nice and good!!! I wish ya all the

best of luck. Surgery is no fun!

--- Jenifer Woody <mom2armybratz@...> wrote:

> First I want to thank everyone who responded to my

> questions. I have been running CRAZY trying to get

> ready for MDA camp (she leaves Sunday) and get

> things in order for surgery. We were actually hoping

> for a July surgery date (to miss less school), but

> no such luck. h's surgery is scheduled for

> August 14th at 7:15am. We'll have to be there at 6am

> -- ICK! On the 10th she'll have the pre-op

> appointment and then her patch appointment (meeting

> w/ the anesthesiologist, surgical nurses etc) We're

> not looking forward to the bending x-rays and other

> pre-op stuff that will be difficult for us and

> uncomfy for her, but we know it's necessary. The doc

> thinks he'll be able to get full correction; because

> of the constant bracing h's curve has remained

> fairly flexible. We are still dreading the post-op

> weeks of recovery and I'm still wondering how I'm

> going to lift her without causing terrible pain. I

> about kicked myself after her g-tube surgery for

> causing her pain (wondered if I

> had made the right choice), so the guilt from this

> one should be HUGE. Any advice on the guilt issue?

> I really hate to sound like an idiot here, but I'm

> also worried about lifting her even after she's

> healed on the outside! I keep thinking " what if I

> break something in there? " Is it possible to

> accidentally mess up a fusion w/ rods?

> Ok, now I'm babbling.......

> Thanks again to everyone who responded and if

> y'all think of anything else that might be helpfull

> please let us know!

>

>

>

> Love and Hugs

> Jeni

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I was thinking pretty much what said here...But I did want to find out

more about her chair flipping?!?! hehe WHAT were you doing?? hehehe

I also don't recall a huge amount of post op pain either. I believe some

nurses came to the house several times to help my parents though. Kind of show

them the best way to do things and they might have even stayed with me for

periods of time so my parents could get out for a bit. Will you be able to get

some help like this? Maybe they can help you with the lifting thing.

*~~* <abrcrombsweetie@...> wrote:

The whole lifting thing is going to be hard. I got

lucky and didnt have too much post op pain once we

were all said and done. As for the guilt... you just

have to keep reminding yourself that you are doing

everything the best that you can! h probably will

hurt and probably will yell... just know she isnt

yelling AT YOU she is yelling at the pain! As for

popping a rod... I think you'd have to do something

crazy weird to do that. I have been fused for over 10

years now and havent had any problems. I have done

some crazy stuff to include flipping my chair! Those

things are in there nice and good!!! I wish ya all the

best of luck. Surgery is no fun!

--- Jenifer Woody wrote:

> First I want to thank everyone who responded to my

> questions. I have been running CRAZY trying to get

> ready for MDA camp (she leaves Sunday) and get

> things in order for surgery. We were actually hoping

> for a July surgery date (to miss less school), but

> no such luck. h's surgery is scheduled for

> August 14th at 7:15am. We'll have to be there at 6am

> -- ICK! On the 10th she'll have the pre-op

> appointment and then her patch appointment (meeting

> w/ the anesthesiologist, surgical nurses etc) We're

> not looking forward to the bending x-rays and other

> pre-op stuff that will be difficult for us and

> uncomfy for her, but we know it's necessary. The doc

> thinks he'll be able to get full correction; because

> of the constant bracing h's curve has remained

> fairly flexible. We are still dreading the post-op

> weeks of recovery and I'm still wondering how I'm

> going to lift her without causing terrible pain. I

> about kicked myself after her g-tube surgery for

> causing her pain (wondered if I

> had made the right choice), so the guilt from this

> one should be HUGE. Any advice on the guilt issue?

> I really hate to sound like an idiot here, but I'm

> also worried about lifting her even after she's

> healed on the outside! I keep thinking " what if I

> break something in there? " Is it possible to

> accidentally mess up a fusion w/ rods?

> Ok, now I'm babbling.......

> Thanks again to everyone who responded and if

> y'all think of anything else that might be helpfull

> please let us know!

>

>

>

> Love and Hugs

> Jeni

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

> I really hate to sound like an idiot here, but I'm also worried

> about lifting her even after she's healed on the outside! I keep

> thinking " what if I break something in there? " Is it possible to

> accidentally mess up a fusion w/ rods?

I've heard stories about stuff coming loose, etc. But one time,

thanks to our wheelchair-unfriendly house, Lee slipped while

getting me out of the bath. I fell and literally smacked the

edge of the tub perpendicular to the middle of my back. I

had a big bruise, but my " gadgets " remained intact. I actually

think I would've been hurt worse without metal rods on

my spine.

Jenn

[Guest guest]

My rods moved when I went to a concert from the vibrations and they had been

in for 5 months. I had to have further surgery and apparently if the metal

is going to losen there is nothing you can do about it. You can't spend your

life worrying about these things, you just have to get on with life.

I had a total of 7 back operations in 4 years. I had infection, I have had

metal in, metal tightened, metal taken out, metal put back in. If you want

to talk to me about any of this feel free.

I had my last surgery last december and my breathing increased from 49% to

69% with the surgery and despite the hell I went through it has been worth

it for my breathing alone. I started my surgeries at 24 and I don't know

anyone older than me with SMA to have gone through this so late. My last

operation was just before I was 28.

Helli

x

>From: " jennifer " <nekrosys@...>

>Reply-

>

>Subject: Re: Scoliosis Surgery

>Date: Wed, 14 Jun 2006 15:07:36 -0000

>

>

> > I really hate to sound like an idiot here, but I'm also worried

> > about lifting her even after she's healed on the outside! I keep

> > thinking " what if I break something in there? " Is it possible to

> > accidentally mess up a fusion w/ rods?

>

>I've heard stories about stuff coming loose, etc. But one time,

>thanks to our wheelchair-unfriendly house, Lee slipped while

>getting me out of the bath. I fell and literally smacked the

>edge of the tub perpendicular to the middle of my back. I

>had a big bruise, but my " gadgets " remained intact. I actually

>think I would've been hurt worse without metal rods on

>my spine.

>

>Jenn

>

>

>

[Guest guest]

I think one of the reasons you have had a tougher time with your spinal

surgery is because you were 24 years old. If done when younger, say anywhere

from 10 to 15 the risks are lower. Its during this stage of growth that our

bones mature and it can form around the rods better and solidify more

securely. Once we mature, bone density can be maintained or lost but a heck

of a lot harder to grow therefore metal rods under such stress may shift

more. Yet even so, every body is different.

I am curious what procedure did they use on you Heli? Did they think to wrap

support wires around your spinal column to help keep the rods in place?

Angie

On Thursday 15 June 2006 08:29, Helen Hellicopter wrote:

> My rods moved when I went to a concert from the vibrations and they had

> been in for 5 months. I had to have further surgery and apparently if the

> metal is going to losen there is nothing you can do about it. You can't

> spend your life worrying about these things, you just have to get on with

> life. I had a total of 7 back operations in 4 years. I had infection, I

> have had metal in, metal tightened, metal taken out, metal put back in. If

> you want to talk to me about any of this feel free.

> I had my last surgery last december and my breathing increased from 49% to

> 69% with the surgery and despite the hell I went through it has been worth

> it for my breathing alone. I started my surgeries at 24 and I don't know

> anyone older than me with SMA to have gone through this so late. My last

> operation was just before I was 28.

> Helli

> x

>

> >From: " jennifer " <nekrosys@...>

> >Reply-

> >

> >Subject: Re: Scoliosis Surgery

> >Date: Wed, 14 Jun 2006 15:07:36 -0000

> >

> >

> > > I really hate to sound like an idiot here, but I'm also worried

> > > about lifting her even after she's healed on the outside! I keep

> > > thinking " what if I break something in there? " Is it possible to

> > > accidentally mess up a fusion w/ rods?

> >

> >I've heard stories about stuff coming loose, etc. But one time,

> >thanks to our wheelchair-unfriendly house, Lee slipped while

> >getting me out of the bath. I fell and literally smacked the

> >edge of the tub perpendicular to the middle of my back. I

> >had a big bruise, but my " gadgets " remained intact. I actually

> >think I would've been hurt worse without metal rods on

> >my spine.

> >

> >Jenn

>

>

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[Guest guest]

Can people with SMA-II have corrective scoliosis surgery after the first

one? I've had my rods put in when I was 9 and since then I have grown, but

the rods haven't. I was told by my doctor that I cannot have any further

back surgeries done because it would be too risky and could damage my spine

and leave me paralyzed. I was told once a patient has rods put in, no

further back surgeries are allowed due to the risk of further damage. Is

this true? I'd rather go through several months of hell than keep suffering

with this pain I am in for the rest of my life.

Does anyone know of a good neurologist I could go see regarding my arm pain

and my back? The specialist I see at the MDA clinic is in Chicago at Rush

Hospital. He's not helping. He's been my doctor for about 20 years now.

But I need someone who can actually help me. I cannot find any doctor that

is willing to figure out what is causing my pain. They don't even believe

me.

Blessed Be,

Meg

( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

( <http://blog.myspace.com/sexytear> http://blog.myspace.com/sexytear)

_____

From: [mailto: ] On

Behalf Of Helen Hellicopter

Sent: Thursday, June 15, 2006 7:30 AM

Subject: RE: Re: Scoliosis Surgery

My rods moved when I went to a concert from the vibrations and they had been

in for 5 months. I had to have further surgery and apparently if the metal

is going to losen there is nothing you can do about it. You can't spend your

life worrying about these things, you just have to get on with life.

I had a total of 7 back operations in 4 years. I had infection, I have had

metal in, metal tightened, metal taken out, metal put back in. If you want

to talk to me about any of this feel free.

I had my last surgery last december and my breathing increased from 49% to

69% with the surgery and despite the hell I went through it has been worth

it for my breathing alone. I started my surgeries at 24 and I don't know

anyone older than me with SMA to have gone through this so late. My last

operation was just before I was 28.

Helli

x

>From: " jennifer " <nekrosysisoc (DOT) <mailto:nekrosys%40isoc.net> net>

>Reply-@gro <mailto:%40> ups.com

>@gro <mailto:%40> ups.com

>Subject: Re: Scoliosis Surgery

>Date: Wed, 14 Jun 2006 15:07:36 -0000

>

>

> > I really hate to sound like an idiot here, but I'm also worried

> > about lifting her even after she's healed on the outside! I keep

> > thinking " what if I break something in there? " Is it possible to

> > accidentally mess up a fusion w/ rods?

>

>I've heard stories about stuff coming loose, etc. But one time,

>thanks to our wheelchair-unfriendly house, Lee slipped while

>getting me out of the bath. I fell and literally smacked the

>edge of the tub perpendicular to the middle of my back. I

>had a big bruise, but my " gadgets " remained intact. I actually

>think I would've been hurt worse without metal rods on

>my spine.

>

>Jenn

>

>

>

[Guest guest]

I had SIX surgeries before they fused my back! Each

time I had a growth spurt, they put in a new rod!

--- " Meg W. " <pink-tulip@...> wrote:

> Can people with SMA-II have corrective scoliosis

> surgery after the first

> one? I've had my rods put in when I was 9 and since

> then I have grown, but

> the rods haven't. I was told by my doctor that I

> cannot have any further

> back surgeries done because it would be too risky

> and could damage my spine

> and leave me paralyzed. I was told once a patient

> has rods put in, no

> further back surgeries are allowed due to the risk

> of further damage. Is

> this true? I'd rather go through several months of

> hell than keep suffering

> with this pain I am in for the rest of my life.

>

>

>

> Does anyone know of a good neurologist I could go

> see regarding my arm pain

> and my back? The specialist I see at the MDA clinic

> is in Chicago at Rush

> Hospital. He's not helping. He's been my doctor

> for about 20 years now.

> But I need someone who can actually help me. I

> cannot find any doctor that

> is willing to figure out what is causing my pain.

> They don't even believe

> me.

>

>

>

> Blessed Be,

>

> Meg

>

> ( <http://www.myspace.com/sexytear>

> http://www.myspace.com/sexytear)

>

> ( <http://blog.myspace.com/sexytear>

> http://blog.myspace.com/sexytear)

>

> _____

>

> From:

> [mailto: ] On

> Behalf Of Helen Hellicopter

> Sent: Thursday, June 15, 2006 7:30 AM

>

> Subject: RE: Re: Scoliosis Surgery

>

>

>

> My rods moved when I went to a concert from the

> vibrations and they had been

>

> in for 5 months. I had to have further surgery and

> apparently if the metal

> is going to losen there is nothing you can do about

> it. You can't spend your

>

> life worrying about these things, you just have to

> get on with life.

> I had a total of 7 back operations in 4 years. I had

> infection, I have had

> metal in, metal tightened, metal taken out, metal

> put back in. If you want

> to talk to me about any of this feel free.

> I had my last surgery last december and my breathing

> increased from 49% to

> 69% with the surgery and despite the hell I went

> through it has been worth

> it for my breathing alone. I started my surgeries at

> 24 and I don't know

> anyone older than me with SMA to have gone through

> this so late. My last

> operation was just before I was 28.

> Helli

> x

>

> >From: " jennifer " <nekrosysisoc (DOT)

> <mailto:nekrosys%40isoc.net> net>

> >Reply-@gro

> <mailto:%40> ups.com

> >@gro

> <mailto:%40> ups.com

> >Subject: Re: Scoliosis Surgery

> >Date: Wed, 14 Jun 2006 15:07:36 -0000

> >

> >

> > > I really hate to sound like an idiot here, but

> I'm also worried

> > > about lifting her even after she's healed on the

> outside! I keep

> > > thinking " what if I break something in there? "

> Is it possible to

> > > accidentally mess up a fusion w/ rods?

> >

> >I've heard stories about stuff coming loose, etc.

> But one time,

> >thanks to our wheelchair-unfriendly house, Lee

> slipped while

> >getting me out of the bath. I fell and literally

> smacked the

> >edge of the tub perpendicular to the middle of my

> back. I

> >had a big bruise, but my " gadgets " remained intact.

> I actually

> >think I would've been hurt worse without metal rods

> on

> >my spine.

> >

> >Jenn

> >

> >

> >

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________________

[Guest guest]

What?!!!!!!

Your rods were not telescopic? They didn't consider you would grow?

I find that hard to believe that the surgeon overlooked such an obvious thing?

You were 9, did they think you would stay that way?

Any risks are varied and dependant upon the individuals situation.

Find out what they would be based on YOU.

Good luck.

Angie

On Friday 16 June 2006 15:20, Meg W. wrote:

> Can people with SMA-II have corrective scoliosis surgery after the first

> one? I've had my rods put in when I was 9 and since then I have grown, but

> the rods haven't. I was told by my doctor that I cannot have any further

> back surgeries done because it would be too risky and could damage my spine

> and leave me paralyzed. I was told once a patient has rods put in, no

> further back surgeries are allowed due to the risk of further damage. Is

> this true? I'd rather go through several months of hell than keep

> suffering with this pain I am in for the rest of my life.

>

>

>

> Does anyone know of a good neurologist I could go see regarding my arm pain

> and my back? The specialist I see at the MDA clinic is in Chicago at Rush

> Hospital. He's not helping. He's been my doctor for about 20 years now.

> But I need someone who can actually help me. I cannot find any doctor that

> is willing to figure out what is causing my pain. They don't even believe

> me.

>

>

>

> Blessed Be,

>

> Meg

>

> ( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

>

> ( <http://blog.myspace.com/sexytear> http://blog.myspace.com/sexytear)

>

> _____

>

> From: [mailto: ] On

> Behalf Of Helen Hellicopter

> Sent: Thursday, June 15, 2006 7:30 AM

>

> Subject: RE: Re: Scoliosis Surgery

>

>

>

> My rods moved when I went to a concert from the vibrations and they had

> been

>

> in for 5 months. I had to have further surgery and apparently if the metal

> is going to losen there is nothing you can do about it. You can't spend

> your

>

> life worrying about these things, you just have to get on with life.

> I had a total of 7 back operations in 4 years. I had infection, I have had

> metal in, metal tightened, metal taken out, metal put back in. If you want

> to talk to me about any of this feel free.

> I had my last surgery last december and my breathing increased from 49% to

> 69% with the surgery and despite the hell I went through it has been worth

> it for my breathing alone. I started my surgeries at 24 and I don't know

> anyone older than me with SMA to have gone through this so late. My last

> operation was just before I was 28.

> Helli

> x

>

> >From: " jennifer " <nekrosysisoc (DOT) <mailto:nekrosys%40isoc.net> net>

> >Reply-@gro <mailto:%40>

> > ups.com @gro <mailto:%40>

> > ups.com Subject: Re: Scoliosis Surgery

> >Date: Wed, 14 Jun 2006 15:07:36 -0000

> >

> >

> > > I really hate to sound like an idiot here, but I'm also worried

> > > about lifting her even after she's healed on the outside! I keep

> > > thinking " what if I break something in there? " Is it possible to

> > > accidentally mess up a fusion w/ rods?

> >

> >I've heard stories about stuff coming loose, etc. But one time,

> >thanks to our wheelchair-unfriendly house, Lee slipped while

> >getting me out of the bath. I fell and literally smacked the

> >edge of the tub perpendicular to the middle of my back. I

> >had a big bruise, but my " gadgets " remained intact. I actually

> >think I would've been hurt worse without metal rods on

> >my spine.

> >

> >Jenn

>

>

[Guest guest]

Hi there,

Just as an FYI, you 'can' have an MRI if you've had a fusion and have

metal in your back, I've had one done The only problem is they

aren't as clear (because of the metal) as they would be

otherwise...the metal causes artifacts. here is an excerpt from an

MRI safety page about having an MRI with rods in the back:

" Rods in the Back - These may cause artifact; but will not cause you

harm. Depending on how big the rods are and the area we are scanning,

this may/may not affect the results of your study. "

And speaking of spinal fusions in general...I had mine in 1975 when I

was 15. I was fused from T-10 to L-4, and they only implanted one

Harrington rod...that was the 'norm' at the time.

I found out through routine x-rays years later (appx 1990) that my

rod had broken...I hadn't experienced any pain, so I had no idea. It

snapped cleanly in half about 2 inched down from the top.

My SMA and spinal docs at Rancho said it was a " somewhat common

occurrence " with the early harrington rods, and that it really wasn't

a big deal. They said the rod was put in at the time of my fusion to

help keep everything straight while the fusion itself healed, and

that once the fusion healed, the rod had essentially done it's

intended job.

I had fears that the rod might move, because mine is only attached to

my spine by hooks at the top and bottom of my fusion...not to every

single vertebrae. The docs said this couldn't happen, because my

fusion was 15+ years old, it had had time for my own bodies bones and

tissues to grow around the rod, keeping it in place. So even though

it was broken, it wasn't going anywhere. And they were right, it's

been 15 years since I found out it was broken, and it hasn't gone

anywhere

Anyway, that's my .02¢

--- " a B. " <kristina45231@...> wrote:

> I don't know for sure about the rod being at risk of movement but

> when I fell 3 yrs ago and broke my femur it did not cause any

> pain/problems to my spinal rod (that I know of). I don't think you

> can have a MRI with the metal in your back so watch out for that.

> -a

__________________________________________________

[Guest guest]

> My SMA and spinal docs at Rancho said it was a " somewhat common

> occurrence "

Rancho = Rancho Los Amigos in Cali?

[Guest guest]

--- hollyrp@... wrote:

> > My SMA and spinal docs at Rancho said it was a " somewhat common

> > occurrence "

>

> Rancho = Rancho Los Amigos in Cali?

Yep, that's the place. I had my spinal fusion there in 1975 Have

you been there too?

__________________________________________________

[Guest guest]

I had scoliosis surgery at age 12, with a 60 degree curve. I am SO

happy I got it despite it being very difficult and a major surgery. I

have 2 titanium rods, and I am 4ft 8 in talk but proportionate. Being

short and not having the horrid back pain I used to and a greater

quality of life for myself (I'm speaking from my experience) was worth it.

My regret is not working with the best Dr. I went to a Dr who had

done MANY fusions at a teaching hospital, but few on thos with

disabilities like ours... so a lot was ignored, like physical therapy

and such that would have aided my recovery. The Dr basically took the

" handle me with kid gloves " approach and I was bed-ridden for recovery

for 6 months. I know kids dont hae this sort of thing now 17 yrs

later - and for the most part now I hear of positive stories.

I'm happy it was done when it was and we didnt wait... I'm sure some

other parents can give some better feedback.

>

> Dear All,

> My daughter, age 9 with SMA type II has�just been advised to undergo

the scoliosis surgery next year maybe in June or July.� It is

something which we don't expect to come so early (no doubt I know that

she will need to�go thru that eventually). Me and my husband are still

unprepared for this surgery.��I hope�anyone�can help to�answer my

questions below:

> �

> 1) what type of implant should we consider ? the doctor said the

implant will be one time only and her back will be�fused/fixed so she

will not grow any taller on her upper limb.� is this the�only choice

she has�?�she is only 9, we really hope we can defer this surgery...�

> 2) is there any other type of implant that she�will " grow " with her

height ?� maybe the type that she needs another surgery when she is

older ?� the doctor said, since she is wheelchair bound, so her height

is not something we should consider, that's why he recommended this

implant which need one time operation only.� but we are really not sure

> 3) we have tried to tell the doctor to defer the surgery but the

doctor advised us that as the curve is 45 degree, it is better to do

it early, less risky, better recovery, what is your advice ?� he said

if we wait longer, the curve maybe even worst and even more risky to

do the surgery.�

> �

> Btw, is there any other alternative we can do ?

> �

> I am sorry to ask so many questions.� I really need�anyone who

can�share with me the experience.� Thanks.� Mee Ling

>

>

>

>

>

[Guest guest]

I agree it should be done before the curve gets worse.  I think mine was done

too late (at 13 y/o) and now my left lung is compromised.

Good luck!

 

________________________________

From: Foo Mee Ling <mlfooec@...>

; sma@...

Sent: Friday, November 28, 2008 11:21:48 PM

Subject: Scoliosis Surgery

Dear All,

My daughter, age 9 with SMA type II has just been advised to undergo the

scoliosis surgery next year maybe in June or July.  It is something which we

don't expect to come so early (no doubt I know that she will need to go thru

that eventually). Me and my husband are still unprepared for this surgery.  I

hope anyone can help to answer my questions below:

 

1) what type of implant should we consider ? the doctor said the implant will be

one time only and her back will be fused/fixed so she will not grow any taller

on her upper limb.  is this the only choice she has ? she is only 9, we really

hope we can defer this surgery... 

2) is there any other type of implant that she will " grow " with her height ? 

maybe the type that she needs another surgery when she is older ?  the doctor

said, since she is wheelchair bound, so her height is not something we should

consider, that's why he recommended this implant which need one time operation

only.  but we are really not sure

3) we have tried to tell the doctor to defer the surgery but the doctor advised

us that as the curve is 45 degree, it is better to do it early, less risky,

better recovery, what is your advice ?  he said if we wait longer, the curve

maybe even worst and even more risky to do the surgery. 

 

Btw, is there any other alternative we can do ?

 

I am sorry to ask so many questions.  I really need anyone who can share with me

the experience.  Thanks.  Mee Ling

[Guest guest]

I had mine done when I was 12 (I'm 50 now) at Rancho Los Amigos in Downey,

CA.....in 1970. My scoliosis was crushing my liver and lung. My parents & I were

told that I probably would not survive the procedure. It took two 12 hour

surgeries....both a month apart. I was on a vent for 6 weeks, but then weaned

off. Without the surgery, I would have died. But, because of it, I was able to

go

vent-free up until 3 years ago. The surgery did not stunt my growth, so I

feel that it was a good thing.

Vicki

SMAI/II

**************Finally, one site has it all: your friends, your email, your

favorite sites. Try the NEW AOL.com.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000006)

[Guest guest]

Hey,

I'm 16 and I got the surgery when I was 10 or 11. I got 2 titanium rods placed

in my back. The surgery itself added like 3 inches to my height. They said I

wouldn't grow much because of the rods but I'm like around 4'11'' now (probably

taller but I have contractors). I was going to wait longer to get my surgery but

that year the back brace was becoming really painful and I noticed I was having

a hard time breathing. Well, I got a chest cold and ending up collapsing a lung.

So a few months later I got the surgery. The recovery process in the hospital is

usually 14 days for me it was only like 10 and I weaned myself off the

painkillers not long afterward. I don't really care that I'm short. The hardest

part was the pain but since I got the surgery I haven't had ANY lung problems at

all. If you wait too long her lungs will probably get worse and they won't be

able to straighten her back as well. I was really afraid to get my surgery done

but I knew what

would happen if I didn't so now I don't regret any of it. I wouldn't recommend

more than 1 major surgery.

~Allegra

From: Foo Mee Ling <mlfooec@...>

Subject: Scoliosis Surgery

, sma@...

Date: Friday, November 28, 2008, 9:21 PM

Dear All,

My daughter, age 9 with SMA type II has just been advised to undergo the

scoliosis surgery next year maybe in June or July.  It is something which we

don't expect to come so early (no doubt I know that she will need to go thru

that eventually). Me and my husband are still unprepared for this surgery.  I

hope anyone can help to answer my questions below:

 

1) what type of implant should we consider ? the doctor said the implant will be

one time only and her back will be fused/fixed so she will not grow any taller

on her upper limb.  is this the only choice she has ? she is only 9, we really

hope we can defer this surgery... 

2) is there any other type of implant that she will " grow " with her height ? 

maybe the type that she needs another surgery when she is older ?  the doctor

said, since she is wheelchair bound, so her height is not something we should

consider, that's why he recommended this implant which need one time operation

only.  but we are really not sure

3) we have tried to tell the doctor to defer the surgery but the doctor advised

us that as the curve is 45 degree, it is better to do it early, less risky,

better recovery, what is your advice ?  he said if we wait longer, the curve

maybe even worst and even more risky to do the surgery. 

 

Btw, is there any other alternative we can do ?

 

I am sorry to ask so many questions.  I really need anyone who can share with me

the experience.  Thanks.  Mee Ling

[Guest guest]

Yes I agree. They never did mine. They thought I wouldn't survive the

surgery, because my scoliosis was to severe, and because I wasn't on a

ventilator at the time. I'm now thirty six, on a ventilator, and the

doctors say that my scoliosis will probably be what kills me, because my

organs will be crushed. My wife had her back surgery done when she was

three, it did stunt her growth, but I don't think that matters. If her

scoliosis had progressed, she would have ended up being short anyway.

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Lori G

Sent: Saturday, November 29, 2008 7:44 AM

Subject: Re: Scoliosis Surgery

I agree it should be done before the curve gets worse. I think mine was

done too late (at 13 y/o) and now my left lung is compromised.

Good luck!

________________________________

From: Foo Mee Ling <mlfooec@... <mailto:mlfooec%40> >

<mailto:%40> ;

sma@... <mailto:sma%40smasupport.com>

Sent: Friday, November 28, 2008 11:21:48 PM

Subject: Scoliosis Surgery

Dear All,

My daughter, age 9 with SMA type II has just been advised to undergo the

scoliosis surgery next year maybe in June or July. It is something which we

don't expect to come so early (no doubt I know that she will need to go thru

that eventually). Me and my husband are still unprepared for this surgery.

I hope anyone can help to answer my questions below:

1) what type of implant should we consider ? the doctor said the implant

will be one time only and her back will be fused/fixed so she will not grow

any taller on her upper limb. is this the only choice she has ? she is only

9, we really hope we can defer this surgery...

2) is there any other type of implant that she will " grow " with her height ?

maybe the type that she needs another surgery when she is older ? the

doctor said, since she is wheelchair bound, so her height is not something

we should consider, that's why he recommended this implant which need one

time operation only. but we are really not sure

3) we have tried to tell the doctor to defer the surgery but the doctor

advised us that as the curve is 45 degree, it is better to do it early, less

risky, better recovery, what is your advice ? he said if we wait longer,

the curve maybe even worst and even more risky to do the surgery.

Btw, is there any other alternative we can do ?

I am sorry to ask so many questions. I really need anyone who can share

with me the experience. Thanks. Mee Ling

[Guest guest]

I¹m like you Vicki. My parents waited too long for the surgery and I ended

up having a 118 degree curve which they corrected to 78 but it took two 17

hr surgeries (two wks apart) and I was on a vent in ICU for a couple months.

I was 15 I think...maybe 14. I did wean off the vent & trach, just took a

long time. I also lost a lot of strength and ability that I had had before,

and I got a really bad pressure sore on my back which healed but I still

can¹t tolerate any weight on it, it even hurts when I wear a jean jacket

because of the weight of the material! Still I¹m very glad I had the

surgery because I was in so much pain all the time with my scoliosis so bad.

On 11/29/08 5:33 PM, " VickiLJurney@... " <VickiLJurney@...> wrote:

>

>

>

> I had mine done when I was 12 (I'm 50 now) at Rancho Los Amigos in Downey,

> CA.....in 1970. My scoliosis was crushing my liver and lung. My parents & I

> were

> told that I probably would not survive the procedure. It took two 12 hour

> surgeries....both a month apart. I was on a vent for 6 weeks, but then weaned

> off. Without the surgery, I would have died. But, because of it, I was able to

> go

> vent-free up until 3 years ago. The surgery did not stunt my growth, so I

> feel that it was a good thing.

>

> Vicki

> SMAI/II

> **************Finally, one site has it all: your friends, your email, your

> favorite sites. Try the NEW AOL.com.

> (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom0000000

> 6)

>

>

[Guest guest]

I tend to be a lurker, but I thought I should offer my opinion here. My

daughter, ne, is 11 1/2 yrs old, and is a type 2. ne also has

scoliosis. I opted to go for the " growth rod " surgery for her, as I did not

want to stunt her growth. The growth rod surgery is a new concept,

relatively speaking. It is even newer in its use for SMA kids. Some of the

kids have the surgery as young as 3 yrs old. In the 30+ kids that I know who

have had the growth rod surgery, ALL have been successful, and the parents

have been happy they chose that route.

ne has her rods place (she has 4) when she was age 9. We waited until 9

because she had some very difficult pulmonary problems after a surgery at

age 4 and her surgeon was very concerned about the problems repeating

themselves. ne wore her TLSO faithfully every day, from the time she got

up until the time she went to bed. Scoli x-rays showed that her curve was

about 100* BUT --- BUT, she remained flexible -- meaning that her spine

could be pushed back into alignment.

The rods were placed by a surgeon who understands SMA VERY well and has a

great deal of experience in SMA patients. ne was in the hospital for 10

days. The rods are lengthened (telescoped) every 6-9 mos. These surgeries

are about 1 hour long. It takes longer for them to position her on the

table! After the growth rod extension, almost all of the kids go home same

day or the very next day.

The absolutely critical piece to this surgery and the recovery is to follow

Dr. Bach's extubation protocol. This protocol is also endorsed by Dr.

Schroth (Wisc) and Dr. Kathleen Swoboda (Utah). These 3 docs are

considered to be the worldwide experts in SMA. I've attached the protocol

information. By doing the growth rod surgery so young, not only does it

support the child's normal growth process, but it also allows room for the

lungs to continue to grow and expand normally.

Now I know that many people are not comfortable with these repeat surgeries.

But, if the surgeon and anesthesiologist are familiar with the unique needs

of an SMA patient (extubation to bi-pap, no supplemental O2, use of the

CoughAssist), the surgery is not as worrisome as it may seem.

After the initial rod placement, ne has had 3 extensions and will have

her 4th next month. She is now 5'6 " and 120lbs. We will continue to extend

the growth rods until she stops growing -- around age 14 or so. I fully

expect her to be 6' when we're done. (I am 5'10 " and her dad is 6'8 " ) ne

notices a positive difference in her breathing after the rods have been

extended. She also likes the support the rods give her when sitting.

Mee Ling, where do you live? It is vitally important to have a surgeon who

is very knowledgable about SMA and has done many of extension surgeries.

Also, post op wise, the PICU staff also must be familiar with the extubation

protocol (and be willing to follow it) and NIV -- non-invasive ventilation.

If you'd like to discuss this further, contact me at nesmom@....

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma-angels.com/neRose

On Sat, Nov 29, 2008 at 12:21 AM, Foo Mee Ling <mlfooec@...> wrote:

> Dear All,

> My daughter, age 9 with SMA type II has just been advised to undergo the

> scoliosis surgery next year maybe in June or July. It is something which we

> don't expect to come so early (no doubt I know that she will need to go thru

> that eventually). Me and my husband are still unprepared for this

> surgery. I hope anyone can help to answer my questions below:

>

> 1) what type of implant should we consider ? the doctor said the implant

> will be one time only and her back will be fused/fixed so she will not grow

> any taller on her upper limb. is this the only choice she has ? she is only

> 9, we really hope we can defer this surgery...

> 2) is there any other type of implant that she will " grow " with her height

> ? maybe the type that she needs another surgery when she is older ? the

> doctor said, since she is wheelchair bound, so her height is not something

> we should consider, that's why he recommended this implant which need one

> time operation only. but we are really not sure

> 3) we have tried to tell the doctor to defer the surgery but the doctor

> advised us that as the curve is 45 degree, it is better to do it early, less

> risky, better recovery, what is your advice ? he said if we wait longer,

> the curve maybe even worst and even more risky to do the surgery.

>

> Btw, is there any other alternative we can do ?

>

> I am sorry to ask so many questions. I really need anyone who can share

> with me the experience. Thanks. Mee Ling

>

>

[Guest guest]

I had my surgery back in 1986, when I was 16. In my opinion, we

waited *way* too long. I almost died twice during the ten hour

surgery. My doctor later told me that if I had waited just six

months longer, I probably would've died from one of my ribs tearing

through my diaphragm.

Jenn