Re: Strength Loss After Spinal Surgery

October 5, 2006

Hi ,

I do not had a spinal surgery and my scoliosis is 2x 45 degrees (like

an " S " ).

When I was around 20 (I am 35 now) my doctor told me not to do the

surgery. He said I will lose my upper body control. He told me I

would be absolutely stiff and could not use my arms as I do it now.

Furthermore he told me that

I asked about the developement of the scoliosis in the future and he

answered that my bones are kind of stiff in that age. Surely it will

not get any better but only slightly worse. I definitively would lose

life quality if I decide for the surgery.

I also concerned about my lung and the other organs but he reassured

me that this is not so much a problem. You know it from pregnant

women - the organs find a place and breathing problems can be dealt

with breathing-exercises, too.

An other important point he made was the risk of anaesthesia. This is

such a big surgery and the risk not to wake up is not small. (This is

15 years ago - I do not know how it is today.) Furthermore we are not

used to have pain in that way that we do not fall down or to scrape a

knee like other children do. So we feel the pain more than other

persons. This is a BIG surgery and much, much pain for a long time.

As for my part I am glad I did not take the surgery as I live well

with the scoliosis and have not pain. Funny but true.

I am very interested in reading what the other members of this group

will answer you.

All the best for !

Have a nice day,

Camilla (from Germany)

>

> We are getting close to the point where we will have to start

> seriously thinking about spinal surgery for . Her scoliosis

> went from 18 degrees last year to 38 degrees now. We had a long

> talk with her doctors about it this week. I have heard many adults

> with SMA recount how they lost strength after having rods inserted

> as a child or pre-teen. Some people who could walk as a child told

> me that they went into this surgery walking and then came out and

> never walked again. But, when I asked the doctor about this, he

said

> the only evidence is that the surgery may limit the ability to

reach

> but nothing more. In extreme cases, he said that a patient who

used

> a manual chair prior to surgery may have to go with power since

they

> can no longer arch their back to propel the manual chair. He said

> that there is no risk to losing any real strength or function you

> had prior to this surgery. The only risk, he said, is the inherent

> risk in any surgery.

>

> has never walked, and can sit up only if placed in that

> position. She can roll over on the hard floor, but not in bed. She

> can lift her arms and feed herself, and is able to lean forward and

> reach while in her power chair. The doctor said she will not lose

> any of these abilities after the spinal surgery. However, many

> people I talk to have said this is not true. We are afraid she may

> lose the limited mobility she now has.

>

> Can anyone here share any experience they may have had with

strength

> or function loss after spinal surgery as a child?

>

> Thank you so much,

>

October 5, 2006

,

This is an interesting question, and you will probably get varying responses

from people. I can only tell you what we experienced with Jordan (age 17, type

2) since his spine was fused 3 months before his 12th birthday. Jordan has lost

a lot of functionality since his fusion, and we personally believe much of it

was accelerated from the fusion. However, if you talk to a doctor they may say

it was just part of the normal SMA progression. We don't fully agree with that

based upon the progression history we had seen with Jordan for the prior 12

years (it seemed much slower before the fusion). Prior to the fusion, Jordan

was very active, had pretty good use of his arms, and could lift them above his

head (with effort) enough to throw a wiffle ball. After the fusion, Jordan was

never able to throw a ball, or lift his arms over his head, again. We were

essentially led to believe that all he might lose is some trunk support (he

could sit pretty stable on his own then...or

would prop his arms for support), but would gain in his ability to use his arms

for reaching out, etc. Unfortunately, the opposite happened and he lost some of

the ability to use his arms as well. In addition, though the fusion concept we

understood was to help his respiratory function, we didn't realize that the

" help " is for the long term...and that he would lose some vital capacity in the

short term. Jordan lost 30-50% of the reduced vital capacity he already had

after his fusion, and has continued to lose more ever since. In addition, he

now has very limited use of his arm, and his neck has gotten significantly

weaker because the fusion does not allow him to use his back posture to help

strengthen and stablize his head position. All the support comes from his head.

As a result, he spends a huge amount of time either tilted back in his chair, or

proping his head with his arm to keep his neck from tiring out too fast.

I can't tell you for sure that the fusion accelerated his functional losses, but

I can tell you that, if it didn't contribute, it's very coincidental that his

SMA decided to progress at a faster rate than before the fusion. That could be

the case, but it doesn't seem like it to us.

All that being said, who knows whether we'd be in a better position without the

fusion. I suppose his functionality could be worse than it is if we hadn't done

it, but it doesn't seem like it. I don't know how we'd handle it if we could go

back an do it again...but I think we'd delay it as long as possible. (Although

some doctors say to do it early because the correction will be better). But,

don't let doctors tell you crankshafting doesn't happen because it does...we've

seen it with Jordan. In hind sight, it seems to me that the curve progresses

with growth spurts because if I remember correctly, Jordan's would be stable for

a while, then move, then be stable for a while, then move again...etc. You

might not see her scoliosis change much in the next year. The trouble is, many

doctors say the curves can just " take off " , and then control can be lost. We

researched and prayed about it a long time. I guess it's not an exact science,

and doctors have many different

opinions. I'd think about getting more than one opinion regarding timing.

Jay

Strength Loss After Spinal Surgery

We are getting close to the point where we will have to start

seriously thinking about spinal surgery for . Her scoliosis

went from 18 degrees last year to 38 degrees now. We had a long

talk with her doctors about it this week. I have heard many adults

with SMA recount how they lost strength after having rods inserted

as a child or pre-teen. Some people who could walk as a child told

me that they went into this surgery walking and then came out and

never walked again. But, when I asked the doctor about this, he said

the only evidence is that the surgery may limit the ability to reach

but nothing more. In extreme cases, he said that a patient who used

a manual chair prior to surgery may have to go with power since they

can no longer arch their back to propel the manual chair. He said

that there is no risk to losing any real strength or function you

had prior to this surgery. The only risk, he said, is the inherent

risk in any surgery.

has never walked, and can sit up only if placed in that

position. She can roll over on the hard floor, but not in bed. She

can lift her arms and feed herself, and is able to lean forward and

reach while in her power chair. The doctor said she will not lose

any of these abilities after the spinal surgery. However, many

people I talk to have said this is not true. We are afraid she may

lose the limited mobility she now has.

Can anyone here share any experience they may have had with strength

or function loss after spinal surgery as a child?

Thank you so much,

October 5, 2006

Well I just had my surgery done 2 yrs ago and although i am not a child(20 now

but had it done a few months before i was 18), my neck has become a little

weaker, but i think that is mainly because with scoliosis before my head used

to rest on my shoulder so i never used a lot of my neck muscles. I do doubt she

will be able to bend as much as before. When you first have the surgery it is

hard to move a lot, but after a few months you gain a bit of your movement

back.Such as bending, before i could bend down to tie a shoe pretty much, but

now i can only bend enough to touch the bottom mid part of my leg. Oh and I'm

not sure if this is the case with everyone but I personally can no longer lay

on hard surfaces, like they have to have a bit of padding.

Also, if can raise her arms high then she should be ok with feeding i

think. But if it is like me, I had limited arm movement where i can pretty much

not raise my arms too much higher off my armrests so i had to get used to

eating since i became a bit taller.

I wish you guys luck with the surgery and just have to say ive always heard

that it is better to get it done early because you can have more

improvement.(But i was given that advice too late in life that it didn't

matter). Strength and a bit mobility may be lost but it is just sooo much

better in the long-run in my opinion. Good Luck!!

-Preet

<way2square@...> wrote: