Re: Strength Loss After Spinal Surgery/ head control

[Guest guest]

My opinion on head control... when your spine is

curved you learn a new way to hold your head, so that

it is even with your hips... when you go and

straighten your back it TOTALLY throws off your head!

When I started driving I had to get lateral supports

and it caused me to sit a bit straighter... my head

went crazy on me. Its all the equalibrium going on. Of

course I do believe strength is lost in the neck while

you are stuck in bed for so long and are not forced to

use those muscles... but in my experience I did get

back most of my head control once my body totally

understood its new 'location'.

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

> Hi . I'm sorry y'all are getting to that point.

> The decision to go ahead is NEVER easy. I did want

> to ask you if wears a TLSO and how her lung

> function has been affected by the progression of her

> scoliosis. Wearing a TLSO really slowed h's

> progression and kept her curve flexible so that we

> could get nearly perfect correction. Our reason for

> going ahead was not necessarilly her curve (since it

> was still so flexible) but more that her lung

> function is fairly poor for a 10yr old w/ type 2 and

> had it decreased any more they would not have

> operated at all. SO.... On Aug 14 h had her

> fusion done at Vanderbilt childrens. The surgery

> went amazingly well (she only recieved one unit of

> blood as a precaution) and they achieved a great

> correction. The only snafu, to put it mildly, was

> that they insisted on trying to extubate h right

> after surgery. I had insisted on waiting at least 24

> hours, but they believed that it would work out fine

> to extubate to bi-pap

> immediately. After 15 minutes of h gasping for

> breath and begging them to help her and them trying

> about 5 different masks, I insisted that they

> reintubate her (they had called me into recovery to

> try to get bi-pap to work). She suffered no lasting

> physical damage, but it was terrifying for her.

> h also had some very unexpected GI

> complications. She developed a post-op illeus and

> then gastroparesis. Because of this, she was without

> nutrition for 3 weeks before they could get her PICC

> placed and start TPN and lipids. She weighed 87lbs

> when she went into surgery and 76 when she left the

> hospital 4 weeks later. I needed to mention this

> because it could have a LOT to do with the strength

> issues that she has had.

> It's been almost 8 weeks since h's surgery and

> she is still having head control issues. She had

> such great head control before that she didn't even

> have a headrest on her chair. After surgery she

> couldn't hold her head up at all. Now she's able to

> hold it up for several hours before she gets worn

> out and has to have her boppy. She always has to

> have help in the van. I *think* that part of the

> reason for her severe head control loss is that the

> curve in her spine was angled so that for her head

> to be upright, her neck was completely sideways (if

> you'd like I can send pre and post-op x-ray pics).

> Since we straightened her so much, her body just has

> to adjust to the new position. Also, the lack of

> nutrition probably (certainly!) caused major muscle

> loss which is making the recovery time on head

> control more lengthy. I hope I'm making some sense

> here *LOL* I do know that several of our friends

> have had some head control issues for a few weeks

> after surgery, but I don't

> know of any of them who have not recovered their

> head control.

> h is still having some issues with weakness in

> her arms and hands as well, but again that is

> probably due in large part to the lack of nutrition.

> I don't know of anyone else who has experienced

> strength loss as severe as h's, but I do believe

> that there will always be some loss involved. It's

> only logical!

> First they are given the anaesthesia, then they

> don't move as much for a few weeks. If a bit of

> strength was not lost I think it would be a miracle.

>

> The good news is that even with the complications

> that h has had, she is regaining her strength

> slowly but surely. Even with the complications, I

> believe that we made the right decision by going

> ahead with her fusion. She is already breathing

> easier! A few days after surgery she fell asleep in

> her chair without her bi-pap. We had her hooked up

> to a pulse-ox, so I just watched carefully to see

> what was going to happen. For the first time in

> about 5 years, h did not desat when she fell

> asleep -- ON NARCOTICS!!!!!!!!! I was more than

> amazed. I can't wait to see how her PFT turns out at

> her next appointment in a few months.

> Anyway, I'm really sorry about the novella. I just

> know that getting as much information as I could

> made me feel SO much better about surgery. I hate

> going into anything blind!

> If you'd like to see the x-rays let me know and

> I'll send them. I was going to scan and send them to

> a few other people anyway, so it would be no trouble

> at all. If you have any other questions I'd be more

> than happy to answer them. You can e-mail me off

> chat at Mom2ArmyBratz@... or if it would be

> easier, you can give me a call pretty much anytime

> at (270)303-6265. We're in Kentucky, so it's central

> time and I'm usually up from 6am to about midnight.

> Hugs

> Jeni

>

> <way2square@...> wrote:

> 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,

>

>

>

>

>

>

>

> Love and Hugs

> Jeni

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I never regained my head control after my fusion. I can hold my head up

when sitting up but if it is bumped or moved in anyway without headrest,

it will fall over and I need assistance to re-position.

*~~* wrote:

> My opinion on head control... when your spine is

> curved you learn a new way to hold your head, so that

> it is even with your hips... when you go and

> straighten your back it TOTALLY throws off your head!

> When I started driving I had to get lateral supports

> and it caused me to sit a bit straighter... my head

> went crazy on me. Its all the equalibrium going on. Of

> course I do believe strength is lost in the neck while

> you are stuck in bed for so long and are not forced to

> use those muscles... but in my experience I did get

> back most of my head control once my body totally

> understood its new 'location'.

>

>

>

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

> <mailto:mom2armybratz%40>> wrote:

>

> > Hi . I'm sorry y'all are getting to that point.

> > The decision to go ahead is NEVER easy. I did want

> > to ask you if wears a TLSO and how her lung

> > function has been affected by the progression of her

> > scoliosis. Wearing a TLSO really slowed h's

> > progression and kept her curve flexible so that we

> > could get nearly perfect correction. Our reason for

> > going ahead was not necessarilly her curve (since it

> > was still so flexible) but more that her lung

> > function is fairly poor for a 10yr old w/ type 2 and

> > had it decreased any more they would not have

> > operated at all. SO.... On Aug 14 h had her

> > fusion done at Vanderbilt childrens. The surgery

> > went amazingly well (she only recieved one unit of

> > blood as a precaution) and they achieved a great

> > correction. The only snafu, to put it mildly, was

> > that they insisted on trying to extubate h right

> > after surgery. I had insisted on waiting at least 24

> > hours, but they believed that it would work out fine

> > to extubate to bi-pap

> > immediately. After 15 minutes of h gasping for

> > breath and begging them to help her and them trying

> > about 5 different masks, I insisted that they

> > reintubate her (they had called me into recovery to

> > try to get bi-pap to work). She suffered no lasting

> > physical damage, but it was terrifying for her.

> > h also had some very unexpected GI

> > complications. She developed a post-op illeus and

> > then gastroparesis. Because of this, she was without

> > nutrition for 3 weeks before they could get her PICC

> > placed and start TPN and lipids. She weighed 87lbs

> > when she went into surgery and 76 when she left the

> > hospital 4 weeks later. I needed to mention this

> > because it could have a LOT to do with the strength

> > issues that she has had.

> > It's been almost 8 weeks since h's surgery and

> > she is still having head control issues. She had

> > such great head control before that she didn't even

> > have a headrest on her chair. After surgery she

> > couldn't hold her head up at all. Now she's able to

> > hold it up for several hours before she gets worn

> > out and has to have her boppy. She always has to

> > have help in the van. I *think* that part of the

> > reason for her severe head control loss is that the

> > curve in her spine was angled so that for her head

> > to be upright, her neck was completely sideways (if

> > you'd like I can send pre and post-op x-ray pics).

> > Since we straightened her so much, her body just has

> > to adjust to the new position. Also, the lack of

> > nutrition probably (certainly!) caused major muscle

> > loss which is making the recovery time on head

> > control more lengthy. I hope I'm making some sense

> > here *LOL* I do know that several of our friends

> > have had some head control issues for a few weeks

> > after surgery, but I don't

> > know of any of them who have not recovered their

> > head control.

> > h is still having some issues with weakness in

> > her arms and hands as well, but again that is

> > probably due in large part to the lack of nutrition.

> > I don't know of anyone else who has experienced

> > strength loss as severe as h's, but I do believe

> > that there will always be some loss involved. It's

> > only logical!

> > First they are given the anaesthesia, then they

> > don't move as much for a few weeks. If a bit of

> > strength was not lost I think it would be a miracle.

> >

> > The good news is that even with the complications

> > that h has had, she is regaining her strength

> > slowly but surely. Even with the complications, I

> > believe that we made the right decision by going

> > ahead with her fusion. She is already breathing

> > easier! A few days after surgery she fell asleep in

> > her chair without her bi-pap. We had her hooked up

> > to a pulse-ox, so I just watched carefully to see

> > what was going to happen. For the first time in

> > about 5 years, h did not desat when she fell

> > asleep -- ON NARCOTICS!!!!!!!!! I was more than

> > amazed. I can't wait to see how her PFT turns out at

> > her next appointment in a few months.

> > Anyway, I'm really sorry about the novella. I just

> > know that getting as much information as I could

> > made me feel SO much better about surgery. I hate

> > going into anything blind!

> > If you'd like to see the x-rays let me know and

> > I'll send them. I was going to scan and send them to

> > a few other people anyway, so it would be no trouble

> > at all. If you have any other questions I'd be more

> > than happy to answer them. You can e-mail me off

> > chat at Mom2ArmyBratz@... <mailto:Mom2ArmyBratz%40>

> or if it would be

> > easier, you can give me a call pretty much anytime

> > at (270)303-6265. We're in Kentucky, so it's central

> > time and I'm usually up from 6am to about midnight.

> > Hugs

> > Jeni

> >

> > <way2square@... <mailto:way2square%40>> wrote:

> > 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,

> >

> >

> >

> >

> >

> >

> >

> > Love and Hugs

> > Jeni

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________

>