Re: Scoliosis or curvature of the spine??????????????????

January 3, 2006

Hi john,

Believe me john, even i hav tis doubt SMA type II

people are never even considered to any type of

surgery . Ive been to plenty of doctors for spinal

correction but none wants to take up tis case of mine.

Doctors hav treated 70% of spine curvature of

patitents but when it comes to SMA type II " its a risk

factor for them " to operate as the reasons said by my

doctor was : Its a risk bcoz sma people cant come to

consciouness from the anesthesia they give and they

are worried abt the healing period it takes as the

patient shud be in bed untill it heals. accordingly

other parts may get weakneed..

anyway " IS THERE SOMEONE IN THIS GROUP BEIN SMA TYPE

II GONE UNDER SPINAL CORRECTION " ?

Deepa

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

> i have a question for everyone here,i have a few

> friends that have

> sma type 2,they were never offered any type of

> surgery to keep there

> backs straight later in life,what is it about

> sma,that is differant to

> someone born with lets say spina bifida,everyone i

> know that was born

> with spina bifida including my wife has either

> lookie rods or a

> herrington rod in the back to keep the spine

> straight,especially later

> in life. any answers would be helpful.

>

> thanks john in colorado

>

Love u

__________________________________

for Good - Make a difference this year.

http://brand./cybergivingweek2005/

January 3, 2006

hello deepa

i m from sma frens

myself ashu suchdeva from india

i read ur msgs in sma mails

my father is having the same prob sma 2 i guesss

i want to be in touch with u so that if any one of us find some way out we

cud be helped

if u feel so

do reply me my

thanx

ashu suchdeva

deepa narasimhan <deepatarzan@...> wrote:

Hi john,

Believe me john, even i hav tis doubt SMA type II

people are never even considered to any type of

surgery . Ive been to plenty of doctors for spinal

correction but none wants to take up tis case of mine.

Doctors hav treated 70% of spine curvature of

patitents but when it comes to SMA type II " its a risk

factor for them " to operate as the reasons said by my

doctor was : Its a risk bcoz sma people cant come to

consciouness from the anesthesia they give and they

are worried abt the healing period it takes as the

patient shud be in bed untill it heals. accordingly

other parts may get weakneed..

anyway " IS THERE SOMEONE IN THIS GROUP BEIN SMA TYPE

II GONE UNDER SPINAL CORRECTION " ?

Deepa

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

> i have a question for everyone here,i have a few

> friends that have

> sma type 2,they were never offered any type of

> surgery to keep there

> backs straight later in life,what is it about

> sma,that is differant to

> someone born with lets say spina bifida,everyone i

> know that was born

> with spina bifida including my wife has either

> lookie rods or a

> herrington rod in the back to keep the spine

> straight,especially later

> in life. any answers would be helpful.

>

> thanks john in colorado

>

Love u

__________________________________

for Good - Make a difference this year.

http://brand./cybergivingweek2005/

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.

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January 3, 2006

I have Type l/ll SMA and had a spinal fusion when I was 12 yrs. old (1970). I

have one harrington rod, and my spine is fused from T2 to the sacrum. It took

two 12 hour surgeries to do the job. Weeks before the surgery, I was trached

and giving aggressive RT to expand my lungs. Then, two weeks before the

surgery, the doctor's installed a halo and leg pins and put me in traction on a

stryker frame bed. I was put on a vent during surgery to survive the anesthesia

and only stayed on it 4 or 5 days afterward while I was in ICU. Overall, I was

in the hospital (off and on) for 6 months. I did lose some strength, but it was

worth the risk.

Nowadays, there have been so many advances in anesthesia, pulmonary support,

and orthopedic medicine that I imagine that the process would not take as long

or be as risky for those who are young with SMA.

Vicki

January 3, 2006

Hi Deepa,

I have SMA type II and I have had spinal surgery. I have Harrington rods in

my spine. I still have quite a bit of residual curvature cuz I was 13 years

old when the surgery was performed and the scoliosis had already progressed

so bad that it was impossible to correct it all. The surgery (14 years ago)

went fine without any major complications.

I've read a lot and have several friends plus my young sister with SMA so I

know something. And I can tell that what the doctors have told about it

being difficult for us to come out of anesthesia is complete rubbish and

simply wrong.

Those doctors who say so probably don't know the difference between SMA and

other muscular diseases. The biggest difference as regards anesthesia is

that our diaphragms work fine while other MD's affect the diaphragm as well

as other breathing muscles. In a normal person, the diaphragm takes care of

about 60 per cent of breathing. It is the single biggest breathing muscle.

SMA does not affect the diaphragm as much as it would in most other muscular

diseases. As a consequence, we tend to wake up from anesthesia more easily

than people with other MD's.

Another difference between SMA and other MD's is that the general

progression in SMA can be slower than in other muscular diseases so that

being bedridden and immobile is somewhat less harmful to us than it would be

for people with some other MD's (but still far more harmful than for

ablebodied people).

Even so, there are always risks involved in any general anesthesia so

special precautions may be in order, but my point is simply that the risks

for us are not as great as one could assume.

However, there are many other issues involved in spinal surgery besides

anesthesia. Nowadays in Europe and America, children with SMA often undergo

spinal surgery early on in life, as soon as the scoliosis starts to progress

fast. But if you are an adult with a significant amount of scoliosis that

has persisted for years, the surgery may involve complications because your

body has adapted itself to the scoliosis. Readjustment to a life with a more

straight back can be difficult and painful. That is why surgery for adults

is more risky than for children.

I have a friend who had the surgery when she was well in her twenties and

her scoliosis was very bad. After surgery, the scoliosis was almost

completely gone but she developed excruciating pain in her leg such that for

years she could hardly sit up in her wheelchair. Even today, it is very hard

for her to be dressed for instance because there are very precise ways in

which she needs to be moved so that she is not in pain.

So, the surgery for us is an issue where you need to measure the pro's and

con's. The benefits can include better breathing capacity in the long run as

your lungs are not compressed. The downside can include some of loss of

function. It is a tricky game for an adult who has not had surgery.

Personally, I believe that for the children the issue may be more

straightforward since they tend to benefit of the surgery in many cases.

I am still happy that I had the surgery. My scoliosis is bad now (go to

http://personal.inet.fi/koti/taija.heinonen/ if you want to see what I mean)

but at age 36 it would be even worse if I had not had the surgery. Before

the surgery, I wore a body jacket which was difficult, sometimes painful and

led to me being hospitalised every spring and autumn due to pneumonia

because I could not breathe good with the body jacket preventing the

movement of my diaphragm.

This is a long message but if you've read this far, you at least have some

insight.

Write to me, Deepa, if you have any more questions. I have been to Delhi and

Bangalore. Where do you live?

smiles

Taya

Re: Scoliosis or curvature of the

spine??????????????????

> Hi john,

>

> Believe me john, even i hav tis doubt SMA type II

> people are never even considered to any type of

> surgery . Ive been to plenty of doctors for spinal

> correction but none wants to take up tis case of mine.

> Doctors hav treated 70% of spine curvature of

> patitents but when it comes to SMA type II " its a risk

> factor for them " to operate as the reasons said by my

> doctor was : Its a risk bcoz sma people cant come to

> consciouness from the anesthesia they give and they

> are worried abt the healing period it takes as the

> patient shud be in bed untill it heals. accordingly

> other parts may get weakneed..

>

> anyway " IS THERE SOMEONE IN THIS GROUP BEIN SMA TYPE

> II GONE UNDER SPINAL CORRECTION " ?

>

> Deepa

>

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

>

>> i have a question for everyone here,i have a few

>> friends that have

>> sma type 2,they were never offered any type of

>> surgery to keep there

>> backs straight later in life,what is it about

>> sma,that is differant to

>> someone born with lets say spina bifida,everyone i

>> know that was born

>> with spina bifida including my wife has either

>> lookie rods or a

>> herrington rod in the back to keep the spine

>> straight,especially later

>> in life. any answers would be helpful.

>>

>> thanks john in colorado

>>

>

> Love u

>

> __________________________________

> for Good - Make a difference this year.

> http://brand./cybergivingweek2005/

>

> 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.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

January 3, 2006

hi john,

i have type 2...my scoliosis was so severe by the the time i was 14,

the age at which they were willing to do the rod, but my respiratory

system was deemed too fragile for such a surgery at the the time

(1980). technology has changed. my type 2 niece just had her surgery

at age 8.

alana

berkeley, CA

>

> i have a question for everyone here,i have a few friends that have

> sma type 2,they were never offered any type of surgery to keep there

> backs straight later in life,what is it about sma,that is differant

to

> someone born with lets say spina bifida,everyone i know that was born

> with spina bifida including my wife has either lookie rods or a

> herrington rod in the back to keep the spine straight,especially

later

> in life. any answers would be helpful.

>

> thanks john in colorado

>

January 3, 2006

hi john,

i have type 2...my scoliosis was so severe by the the time i was 14,

the age at which they were willing to do the rod, but my respiratory

system was deemed too fragile for such a surgery at the the time

(1980). technology has changed. my type 2 niece just had her surgery

at age 8.

alana

berkeley, CA

>

> i have a question for everyone here,i have a few friends that have

> sma type 2,they were never offered any type of surgery to keep there

> backs straight later in life,what is it about sma,that is differant

to

> someone born with lets say spina bifida,everyone i know that was born

> with spina bifida including my wife has either lookie rods or a

> herrington rod in the back to keep the spine straight,especially

later

> in life. any answers would be helpful.

>

> thanks john in colorado

>

January 17, 2006

Hi,

I wonder if scoliosis is one that every SMA'er will have eventually or surgery

is

a must. Can someone please share with me. tq, ML

VickiLJurney@... wrote: