Re: Lookie Rods or Hearrington Rod????

[Guest guest]

I don't know about the others but I had a herrington

rod put in when I was 9, and my sister had hers done

when she was 14. It was a bigger deal for her because

she had started to curve. Mine on the other hand was

optional at the time, and my parents thought it was

best to do it when I was young. Unfortunately, they

were never told that it was suppose to be changed

every year or so as I grew, so I have a very slight

curve, no one notices but I do.

--- lundgren <johnsapca2004@...> wrote:

> my Question is this,i have a few close friends with

> sma,none of which

> were given the option to have those surgical rods

> put next to the

> spinal cord to keep it straight,now most of my

> friends have curvature

> of there spine to around 45 degrees or more,don't

> quote me here,but

> why does everyone that has spina bifida,and

> curvature of the

> spine,automatically get rods in there back,whats

> wrong with these mda

> doctors are they scared to do that kind of

> surgery,or why not just lie

> to the patient with sma,and tell them if they put

> these rods in it

> will kill them,Thats BS. the rods are put in to keep

> the spinal column

> straight all the way through life.

>

> My Fiancee is 40yrs old and got her

> Hearrington rod when she

> was 13,the doctors told her that if she had not had

> this surgery,she

> would have been paralyzed from the chest down.to

> this day her Spina

> Bifida is weird,she's not paralyzed from the waist

> down or even from

> the knees down,her left leg is paralyzed from the

> waist down,and she

> can move her right leg,she's short at 4'5 " ,she

> does'nt have a Shunt.we

> are getting married on 06/17/06 here in colorado

> springs

>

> all replies welcome thanks john

>

>

>

>

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[Guest guest]

I also had the Harrington rods put in plus a pelvic support rod to keep it

steady during the first few years. I had the option of removing it when I was

12yrs old, but didn't. Today, knock on wood, no serious problems. I know I am

losing some tush fats and muscle tone (35 yrs sitting down can do that, wink)

so where they meet is beginning to protrude a tad. I fear if I lose too much

in that area it may lead to pressure soars....maybe even surgery to remove

the pelvic rod, who knows. I will cross that bridge, if and when I get there.

I never lost any sensation except where the scar is....sort of numbish.

Angie

(My surgeon was Dr. Gillespie and his asst was Dr. Cameron - Jan.1975)

On 2005.10.21 14:14, lundgren wrote:

> my Question is this,i have a few close friends with sma,none of which

> were given the option to have those surgical rods put next to the

> spinal cord to keep it straight,now most of my friends have curvature

> of there spine to around 45 degrees or more,don't quote me here,but

> why does everyone that has spina bifida,and curvature of the

> spine,automatically get rods in there back,whats wrong with these mda

> doctors are they scared to do that kind of surgery,or why not just lie

> to the patient with sma,and tell them if they put these rods in it

> will kill them,Thats BS. the rods are put in to keep the spinal column

> straight all the way through life.

>

> My Fiancee is 40yrs old and got her Hearrington rod when she

> was 13,the doctors told her that if she had not had this surgery,she

> would have been paralyzed from the chest down.to this day her Spina

> Bifida is weird,she's not paralyzed from the waist down or even from

> the knees down,her left leg is paralyzed from the waist down,and she

> can move her right leg,she's short at 4'5 " ,she does'nt have a Shunt.we

> are getting married on 06/17/06 here in colorado springs

>

> all replies welcome thanks john

>

>

>

>

>

>

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[Guest guest]

I had my Herrington rods put in when I was 16. I have no doubt I

would've died shortly thereafter *without* the surgery.

Jenn

[Guest guest]

hi ,

i'm the same age as your fiancee, tracy, and was considering the harrington rods

at age 13 also. i suspect that the differences between SMA and Spina Bifida are

why many SMA folks my age didn't have the surgery. Folks with Spina Bifida

typically are much stronger respiratory-wise and their muscles don't

irreversibly atrophy with extended periods of bed rest the way SMA folks'

muscles do.

I have SMA 2. By the time I was 13, my curvature was 126 degrees and my vital

capacity was down by 80% of normal for girls my age. Because there was already

so much skeletal deformity and my breathing was so impaired, they didn't think

I'd make it and would likely need a trach (common protocol at the time) and be

vent dependent. Mom left the decision to me. I opted out.

At the time, they weren't willing to do the rods on younger kids because they

still had too much growing to do. Also, people spent many weeks lying flat.

now they rarely use rods, doing fusions instead, so people can be younger.

also, people are sitting up within a day or two, and non-invasive ventilation

options have improved a lot. my niece was 7 and was sitting up for a couple of

minutes the 1st day. she's benefited greatly, but i think made the right choice

for my circumstances.

it'd be interesting to hear about the process others, with less severe

curvatures of my generation, went through who didn't have it done.

alana

[Guest guest]

I was ten when they did mine. I was operated on in Canada, Ontario at

Toronto's Sick Children's Hospital in January 1975.

My spine was 118 bent to the left and the spinal rods were telescopic so they

did a guess-a-met using my mothers spine as a growth guide. My spinal rods

grew with me likely within the next two years and has fused thereafter

nicely.

Having SMA2 myself, I suppose my respiratory system was strong enough. I did

do a lot of " log rolling " because I couldn't lay out flat enough for the

striker frames (the ones that flip you over with no bed underneath - kinda

like a flar, hard hammock). It took me 7 months to recupe; got a bad chest

cold from my roommate in the hospital rehab unit, so went back in for that. I

outgrew my wheelchair's seating and had to be refitted. I grew 7 and a half

inches in the 7hr surgery!

Angie

On 2005.10.21 16:20, alrt@... wrote:

> hi ,

>

> i'm the same age as your fiancee, tracy, and was considering the harrington

> rods at age 13 also. i suspect that the differences between SMA and Spina

> Bifida are why many SMA folks my age didn't have the surgery. Folks with

> Spina Bifida typically are much stronger respiratory-wise and their muscles

> don't irreversibly atrophy with extended periods of bed rest the way SMA

> folks' muscles do.

>

> I have SMA 2. By the time I was 13, my curvature was 126 degrees and my

> vital capacity was down by 80% of normal for girls my age. Because there

> was already so much skeletal deformity and my breathing was so impaired,

> they didn't think I'd make it and would likely need a trach (common

> protocol at the time) and be vent dependent. Mom left the decision to me.

> I opted out.

>

> At the time, they weren't willing to do the rods on younger kids because

> they still had too much growing to do. Also, people spent many weeks lying

> flat. now they rarely use rods, doing fusions instead, so people can be

> younger. also, people are sitting up within a day or two, and non-invasive

> ventilation options have improved a lot. my niece was 7 and was sitting up

> for a couple of minutes the 1st day. she's benefited greatly, but i think

> made the right choice for my circumstances.

>

> it'd be interesting to hear about the process others, with less severe

> curvatures of my generation, went through who didn't have it done.

>

> alana

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

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[Guest guest]

Well many people our age with DMD, including me, have gotten the surgery and our

respiratory functions are usually worse than those with SMA (SMA 2 at least),

and our muscles irreversibly atrophy. I think my breathing was at 60%. But I

have noticed people with SMA seem to get sick more often than those with DMD.

Maybe that's another reason. and maybe they thought of it like SMA 1.

Re: Lookie Rods or Hearrington Rod????

hi ,

i'm the same age as your fiancee, tracy, and was considering the harrington

rods at age 13 also. i suspect that the differences between SMA and Spina

Bifida are why many SMA folks my age didn't have the surgery. Folks with Spina

Bifida typically are much stronger respiratory-wise and their muscles don't

irreversibly atrophy with extended periods of bed rest the way SMA folks'

muscles do.

I have SMA 2. By the time I was 13, my curvature was 126 degrees and my vital

capacity was down by 80% of normal for girls my age. Because there was already

so much skeletal deformity and my breathing was so impaired, they didn't think

I'd make it and would likely need a trach (common protocol at the time) and be

vent dependent. Mom left the decision to me. I opted out.

At the time, they weren't willing to do the rods on younger kids because they

still had too much growing to do. Also, people spent many weeks lying flat.

now they rarely use rods, doing fusions instead, so people can be younger.

also, people are sitting up within a day or two, and non-invasive ventilation

options have improved a lot. my niece was 7 and was sitting up for a couple of

minutes the 1st day. she's benefited greatly, but i think made the right choice

for my circumstances.

it'd be interesting to hear about the process others, with less severe

curvatures of my generation, went through who didn't have it done.

alana

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

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[Guest guest]

I never walked, but I was a very independent boy and would drive around

the house on a self-propelled three-wheeled plastic motorcycle. Some

people didn't realize that I had any sort of disability.

That all changed after I had the rods surgery, which the Dr. said I'd

need later.

The surgery went terribly wrong. Everything changed that September,

Friday the 13th, 1991, when I had the surgery to put rods in. I never

could bounce back from the shock of the surgery and developed a raging

Pseudomonas infection and all the abilities I had before I soon lost.

The surgeon didn't admit there was a problem or give me nutrition. I

got down to 35 pounds and what thin muscles I had wasted away, which,

let me tell you, sucked. The infection racked my body. Three months

passed. I saw many horrors. The infection specialist ended up saving

my life with a mix of insanely hardcore strong IV antibiotics layered on

each other, like chemotherapy. Some doctors said I would not live. I

didn't believe them and I lived. Despite the fact that soon in 1992 I

ended up on tube feedings, and, because I lost the muscle to breathe on

my own, a Bipap 1992-1994 and a trach and ventilator 1994-present,

despite the fact the rods didn't fuse and my spine is now a twisted,

cadesus-like torturous mess that still requires painkillers every 4 hrs

to tolerate, the fact is, I survived. I beat it. I survived, dammit.

I advise those on the list, never have back surgery preemptively. Don't

risk it unless your spine is curved and causing problems (mine barely

had a curve pre-surgery). Under the best of circumstances it is a huge,

catastrophic blow to your system and all the little ways it compensates.

And never have major surgery on the 13th. Heh.

Nick