Surgery or Not?

April 20, 2008

thanks Patti

--- Patti <pattijohnson@...> wrote:

> " For me " ...the monitors went off because there was a

> medication or glucose that needed to be replaced

> (bag was empty). The morphine pump was sufficient

> and I did not need additional pain medication while

> on morphine. You can push the morphine " button "

> anytime you want, remembering that you cannot

> overdose on it because it has a " built in " feature

> that only lets you deliver the dosage every so many

> minutes. My " button " was a green glowing light and I

> hung onto it like it was my teddy bear. Your doctor

> or nurse will be willing to tell you how often the

> dosage can be delivered.

>

> Once the morphine was removed, I took Percoset on an

> " as need " basis. Others here are right, we all

> experience pain differently..some with a high

> tolerance and others not. Also, we all had our own

> set of circumstances, i.e., for me, I had 15

> vertebrae fused, 21 hours of surgery spaced 7 days

> apart. I cannot describe the pain for you. Could

> your own mother have described the pain of child

> birth labor when you had your first child? And would

> she have told you? It is a difficult surgery, but

> the pain meds work. They don't want you to hurt

> excessively because pain gets in the way of healing.

> That's why they say not to go into a pain deficit.

> It's hard to get ahead of it if you try to be too

> brave. And suffering with pain just to prove

> something benefits no one.

>

> One more thing: There is always a " head' nurse

> available to discuss problems. She is your " go to "

> person if the nurses are not responding to your

> son's needs. Then, of course, you can always call

> your doctor.

>

> [Non-text portions of this message have been

> removed]

>

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April 20, 2008

thanks for the info

--- KnightonND@... wrote:

>

> In a message dated 4/20/08 12:38:57 PM,

> p0etiss@... writes:

>

> > How often do you push the pump? How do you get a

> hold of the pain

> > management team? Was he able to walk independently

> when he left the hospital?

> >

> The pain pump is programmed for (1) continuous IV

> morphine and (2) patient

> administered additional morphine 'hits'. They will

> tell you what the interval

> is between each button push. It can be

> reprogrammed to dispense more with

> the continuous drop or to be able to push the button

> more often.

>

> To request the pain management team, all you have to

> do is ask a nurse. It

> is one of the patient rights and you are his

> advocate. Since he has had no

> other surgery and therefore no morphine, he should

> do just fine with

> controlling his pain using the morphine pump.

>

> Your son should be able to walk independently when

> he is discharged albeit

> very slowly and gingerly so you'll want to be right

> there with him. He may get

> a PT session to instruct him about how to 'log roll'

> out of bed, do steps,

> etc. He'll figure it all out soon enough on his

> own, that's the way of 19 year

> olds - thank goodness!!

>

> **************

> Need a new ride? Check out the largest

> site for U.S. used car listings at AOL Autos.

>

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

>

> [Non-text portions of this message have been

> removed]

>

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April 20, 2008

I don't know how to describe the pain other than to say it consuming. I've never

known a time in my adult life when I didn't worry about either my dogs or my

kids or whatever. During the first three days, I can say that there was no other

thought in my head but my body. It wasn't unbearable because of the meds, but I

had trouble sleeping for long because I'd stiffen up and then when I'd move it

felt like my body was fused-which it was- but I mean like every inch of me

resisted movement. Yet you have to move so after awhile I got to where I just

grit my teeth and move and the pain would subside once I was in the new

position. Moving from my side to my back hurt because then you're putting

pressure on the incision, but that also subsides. It'll make him a stronger

person. And he's lucky to have you there with him. I was all alone most of the

time and I really wanted not to be.

Mattresses. Any

> > > hints?

> > > >

> > > > Hi, people!

> > > >

> > > > Back in 1996, when I was 16, I was fused T5 to

> > L4.

> > > > One year after

> > > > that, I started experiencing pain as I changed

> > my

> > > > mattress into a

> > > > harder one. I somehow felt that it stayed too

>

=== message truncated ===

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April 22, 2008

Hi Gail,

Your son is so fortunate to have such a caring, concerned and loving mother.

That you were so ready to stop the process if there were any serious reasons not

to proceed with the surgery shows how much you want the best for him. I waited

far too long to have my curve corrected because I had no pain until my 40s. Plus

I had not been followed by a doctor after being told my curve would not advance

after puberty. My curve progressed rapidly the last few years and I started

having numerous problems. Having the surgery at 45 was not easy. I was glad to

hear that others were allowed to have a family member with them immediately

after surgery. I was not. I would be sure that your doctor and the hospital will

allow you to be there and plan accordingly. I would not want any assumptions to

cause you or your son any upset at such a difficult time.

As to pain... your son should have a pain management team. He will almost surely

have a morphine pump and will be able to manage it himself. Be careful of

wanting to 'help' him along and push it for him. He may wake briefly and

complain of pain or say 'yes' if asked, but be able to go immediately back to

sleep without actually needing more medication. There is danger of his having

too much, which can depress his respirations, if he isn't alert enough to push

his own button. In describing the pain, I guess the best I could say is it felt

like I had been hit by an ax in the side. I had anterior and posterior

approaches, fused from T1 to L5, with bone taken from the hip and a rib. I can

honestly say I had very little pain in my back. The pain that gave me the most

problem was from the side incision and the hose pipe sized chest tube. Or at

least it felt that big. It gave me problems the entire time, draining a lot for

days. After it was removed I still felt pain and was unable

to turn over from my back to my side for weeks. Since your son will have

posterior only, his pain will be different. It is hard to compare the pain to

labor pains, but I had natural childbirth with my last child and I guess the

pain was comparable. The back surgery pain was not worse, just different. There

was never any pins and needles pain for me, or sharp nerve pain. More a deep

ache. I can't diminish the fact that he will have pain. I had thought that since

I had not had back pain from my " big " surgery that surely I wouldn't from having

the tops of my rods cut off a couple of years later. Wrong. It hurt. But your

son will be able to ask for medication as soon as he needs it after surgery and

the pain management specialist will be sure he is kept as comfortable as

possible to aid in his recovery. He will need to be encouraged to stay on top of

his pain after the pump is stopped. It will require much less medication if he

doesn't think he needs to wait until he is in

pretty bad discomfort before taking something. He will be able to take deep

breaths, move around better and just all around recover more rapidly if he stays

comfortable. It is his right to have his pain addressed and in the slim chance

that you feel it isn't being done, don't hesitate to ask to see a nurse manager

and take it up with his doctor at the first available time. But this has been

recognized as such a major factor in recovery that I feel sure, with the

excellent surgeon taking care of him, he will have his pain managed.

After he returns home, it is very individual as to how long he will need a

strong pain reliever. He should not hesitate to ask for what he needs. I did not

need any more morphine after a week or so at home, but others have needed it for

a couple more months. It is very individual.

I'm sure there may be days when you may second guess yourself because no parent

wants to see her child in any kind of distress, no matter how old the child is.

My heart goes out to you. I would so much rather have the problem than have

either of my children have it, so I know how difficult this is for you. You have

an excellent surgeon for your son, he has made his recommendation and your son

has made an informed decision. I agree with the person who said that he will

have so many benefits in having an improved self image in his young adult years

that the pluses outweigh the minuses. I'm sure you have had moments where you

'what if' about any possible problem. Any parent would do that. I will keep your

son and you in my prayers. You will be busy for a while, but please let us know

how things are going when you can. God bless you both. And don't forget to take

care of yourself.

Bea

Gail Merri <p0etiss@...> wrote: I was

wondering if you all would be willing to share

and try to describe the pain you felt right after you

had your fusion surgery. I want to get an idea when

the time comes of what my son is experiencing. Is it

a sharp, dull, throbbing, pins and needles,

excruciating worse than labor pains, etc. And how

long the highest level of pain lasts for and anything

you can think of to help me understand what that is

like and what I can do for him from an

emotional/psychological perspective as well as

advocate if he is not receiving the proper amount of

pain meds he needs. thanks.

--- Gail Merri <p0etiss@...> wrote:

> I am glad to hear your nephew is doing well Randi.

> Thanks for your reply and my best to you.

> --- Randie Meyer <taknitlite@...> wrote:

>

> > My nephew was fused from T4-L5 at age 16. He's 26

> > and doing fine so far.

> >

> > Mattresses. Any

> > hints?

> > >

> > > Hi, people!

> > >

> > > Back in 1996, when I was 16, I was fused T5 to

> L4.

> > > One year after

> > > that, I started experiencing pain as I changed

> my

> > > mattress into a

> > > harder one. I somehow felt that it stayed too

> > rigid

> > > and didn't match

> > > the shape of my lower-back so that part of my

> > lumbar

> > > area didn't make

> > > contact with the surface of the mattress.

> Putting

> > a

> > > pillow under my

> > > knees solved the problem and I've slept like

> that

> > > ever since.

> > >

> > > I guess my spine and I are getting older. My

> > current

> > > mattress is

> > > pretty hard and the pillow under the knees is

> not

> > > enough to make me

> > > feel right. So I bought a 2-inch thick foam

> > mattress

> > > topper. It

> > > didn't feel firm enough in the lumbar area so I

> > put

> > > a folded towel

> > > underneath the topper and it worked. After a few

> > > weeks It's starting

> > > to sag and It's not that comfortable anymore. I

> > > guess the poor

> > > quality of my foam topper doesn't help. Maybe

> good

> > > quality memory

> > > foam would do.

> > >

> > > I would be grateful to get your hints/advice/

> > > opinions on the topic of

> > > beds and mattresses. I know that each one of us

> is

> > > different, but

> > > still I think we understand our problems and

> > > " special " needs

> > > sometimes even better than doctors.

> > >

> > > Thanks.

> > >

> > > PS: I have already read some posts on this

> topic.

> > > Has anybody noticed

> > > that the search engine of the forum doesn't work

> > too

> > > well? (I always

> > > get only a few matches, if any, when I search

> for

> > > something)

> > >

> > > <!--

> > >

> > > #ygrp-mkp{

> > > border:1px solid

> > > #d8d8d8;font- family:Arial; margin:14px

> > > 0px;padding: 0px 14px;}

>

=== message truncated ===

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April 23, 2008

Bea,

thank you so very much for your thoughtful reply. I

can't tell you now much it means to me. I could feel

your sincerity and understanding. I am usually a

person who is a confident decision maker. I have

faced many challenges in my life but this is just

something unlike anything else. Have you heard of Dr.

Shufflebarger? I am so sorry you have had to go

through the surgerie yourelf. How are you doing now? I

will keep you in my prayers as well. Gail ---

Beverlee <bea_simmons@...> wrote:

> Hi Gail,

>

> Your son is so fortunate to have such a caring,

> concerned and loving mother. That you were so ready

> to stop the process if there were any serious

> reasons not to proceed with the surgery shows how

> much you want the best for him. I waited far too

> long to have my curve corrected because I had no

> pain until my 40s. Plus I had not been followed by a

> doctor after being told my curve would not advance

> after puberty. My curve progressed rapidly the last

> few years and I started having numerous problems.

> Having the surgery at 45 was not easy. I was glad to

> hear that others were allowed to have a family

> member with them immediately after surgery. I was

> not. I would be sure that your doctor and the

> hospital will allow you to be there and plan

> accordingly. I would not want any assumptions to

> cause you or your son any upset at such a difficult

> time.

>

> As to pain... your son should have a pain management

> team. He will almost surely have a morphine pump and

> will be able to manage it himself. Be careful of

> wanting to 'help' him along and push it for him. He

> may wake briefly and complain of pain or say 'yes'

> if asked, but be able to go immediately back to

> sleep without actually needing more medication.

> There is danger of his having too much, which can

> depress his respirations, if he isn't alert enough

> to push his own button. In describing the pain, I

> guess the best I could say is it felt like I had

> been hit by an ax in the side. I had anterior and

> posterior approaches, fused from T1 to L5, with bone

> taken from the hip and a rib. I can honestly say I

> had very little pain in my back. The pain that gave

> me the most problem was from the side incision and

> the hose pipe sized chest tube. Or at least it felt

> that big. It gave me problems the entire time,

> draining a lot for days. After it was removed I

> still felt pain and was unable

> to turn over from my back to my side for weeks.

> Since your son will have posterior only, his pain

> will be different. It is hard to compare the pain to

> labor pains, but I had natural childbirth with my

> last child and I guess the pain was comparable. The

> back surgery pain was not worse, just different.

> There was never any pins and needles pain for me, or

> sharp nerve pain. More a deep ache. I can't diminish

> the fact that he will have pain. I had thought that

> since I had not had back pain from my " big " surgery

> that surely I wouldn't from having the tops of my

> rods cut off a couple of years later. Wrong. It

> hurt. But your son will be able to ask for

> medication as soon as he needs it after surgery and

> the pain management specialist will be sure he is

> kept as comfortable as possible to aid in his

> recovery. He will need to be encouraged to stay on

> top of his pain after the pump is stopped. It will

> require much less medication if he doesn't think he

> needs to wait until he is in

> pretty bad discomfort before taking something. He

> will be able to take deep breaths, move around

> better and just all around recover more rapidly if

> he stays comfortable. It is his right to have his

> pain addressed and in the slim chance that you feel

> it isn't being done, don't hesitate to ask to see a

> nurse manager and take it up with his doctor at the

> first available time. But this has been recognized

> as such a major factor in recovery that I feel sure,

> with the excellent surgeon taking care of him, he

> will have his pain managed.

>

> After he returns home, it is very individual as to

> how long he will need a strong pain reliever. He

> should not hesitate to ask for what he needs. I did

> not need any more morphine after a week or so at

> home, but others have needed it for a couple more

> months. It is very individual.

>

> I'm sure there may be days when you may second guess

> yourself because no parent wants to see her child in

> any kind of distress, no matter how old the child

> is. My heart goes out to you. I would so much rather

> have the problem than have either of my children

> have it, so I know how difficult this is for you.

> You have an excellent surgeon for your son, he has

> made his recommendation and your son has made an

> informed decision. I agree with the person who said

> that he will have so many benefits in having an

> improved self image in his young adult years that

> the pluses outweigh the minuses. I'm sure you have

> had moments where you 'what if' about any possible

> problem. Any parent would do that. I will keep your

> son and you in my prayers. You will be busy for a

> while, but please let us know how things are going

> when you can. God bless you both. And don't forget

> to take care of yourself.

>

> Bea

>

> Gail Merri <p0etiss@...> wrote:

> I was wondering if you all would be

> willing to share

> and try to describe the pain you felt right after

> you

> had your fusion surgery. I want to get an idea

> when

> the time comes of what my son is experiencing. Is

> it

> a sharp, dull, throbbing, pins and needles,

> excruciating worse than labor pains, etc. And how

> long the highest level of pain lasts for and

> anything

> you can think of to help me understand what that is

> like and what I can do for him from an

> emotional/psychological perspective as well as

> advocate if he is not receiving the proper amount

> of

> pain meds he needs. thanks.

> --- Gail Merri <p0etiss@...> wrote:

>

> > I am glad to hear your nephew is doing well

> Randi.

> > Thanks for your reply and my best to you.

> > --- Randie Meyer <taknitlite@...> wrote:

> >

> > > My nephew was fused from T4-L5 at age 16. He's

> 26

> > > and doing fine so far.

> > >

> > > Re: Surgery or

> Not?

> > >

> > > I know you are all probably really, really sick

> of

> > > me

> > > by now. I am not normally like this but as you

> > know

> > > this is a huge decision effecting my son's

> health

> > > for

> > > the rest of his life.

> > > We are just about two weeks away from my 19

> year

> > old

> > > son's scoliosis fusion surgery (posterior). He

> has

> > a

> > > 50 degree curve measured by one surgeon and a

> 52

> > > degree curve measured by another surgeon. He is

> > > being

> > > fused from T-2 to T12.

> > >

> > > He has donated his own blood and the doctor is

> > > taking

> > > the bone from his rib for the bone graft.

> > >

> > > My dilemma as you know is do we wait until it

> > > progresses (we have good insurance now and I

> think

> > > this is when it would be least disruptive to

> his

> > > life

> > > in terms of time between his freshman and

> > sophomore

> > > years of college) or do we wait and see what

> > happens

> > > down the road.

> > >

> > > My fears....once he is fused the areas above

> and

> > > below

> > > the fusion will over the years get more stress

> and

> > > he

> > > will have to have surgery anyway or a second

> > > surgery,

> > > that he will have pain for the rest of his life

> > > while

> > > he has none now and will he have paralysis,

> > > infection,

> > > pneumonia and all kinds of things that can

> happen

> > as

> > > a

> > > result of surgery. My son as far as we know is

> > > otherwise in fine health. He has never been a

> > > physically active kid but generally has never

> had

> > > any

> > > health problems.

> > >

> > > His surgeon has many many years of experience

> and

>

=== message truncated ===

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April 23, 2008

Dear Gail. It progresses, period. He should have the operation. He'll be glad

he did, in my opinion. My pain disappeared!

lj

Gail Merri <p0etiss@...> wrote:

I know you are all probably really, really sick of me

by now. I am not normally like this but as you know

this is a huge decision effecting my son's health for

the rest of his life.

We are just about two weeks away from my 19 year old

son's scoliosis fusion surgery (posterior). He has a

50 degree curve measured by one surgeon and a 52

degree curve measured by another surgeon. He is being

fused from T-2 to T12.

He has donated his own blood and the doctor is taking

the bone from his rib for the bone graft.

My dilemma as you know is do we wait until it

progresses (we have good insurance now and I think

this is when it would be least disruptive to his life

in terms of time between his freshman and sophomore

years of college) or do we wait and see what happens

down the road.

My fears....once he is fused the areas above and below

the fusion will over the years get more stress and he

will have to have surgery anyway or a second surgery,

that he will have pain for the rest of his life while

he has none now and will he have paralysis, infection,

pneumonia and all kinds of things that can happen as a

result of surgery. My son as far as we know is

otherwise in fine health. He has never been a

physically active kid but generally has never had any

health problems.

His surgeon has many many years of experience and his

practice is devoted to this area of medicine

specifically. I am told he invented some of the

instrumentation they use now but I never actually

asked him that question. He said he has never had a

patient who became paralyzed as a result of this

surgery.

My son decided to have the surgery but I am not sure

he understands the possible implications down the road

and he doesn't really want to talk to me about this.

So one final yea or nay...would you do it if it were

your son....one last what do you think and I promise

to shut up.

My heart goes out to all of you on here who have

suffered so and been through so much. I feel so

selfish asking you for anything on here but at the

same time think that maybe because of what you have

been through you are more knowledgeable and would

understand how hard it is to make this decision.

Ok...shutting up now. One last huge thank you.

--- diane neuman <ne-mandiane@...> wrote:

> We bought the 4 and 6 inch memory foam toppers-much

> better then the just the foam ones, at least for

> us-it seems what works for one doesn't necessarily

> work for the next. One of my girlfriends has one

> those newer style air mattresses that she stuck on

> top of her mattress and then added a memory foam

> topper to that and adjusts the amount of air-seems

> to be doing the trick for her for now.. I still am

> thankful for having two different comfortable

> couches-sometimes there is simply no mattress that

> will work..

>

> hope you find something

> Diane

>

> Mattresses. Any hints?

>

> Hi, people!

>

> Back in 1996, when I was 16, I was fused T5 to L4.

> One year after

> that, I started experiencing pain as I changed my

> mattress into a

> harder one. I somehow felt that it stayed too rigid

> and didn't match

> the shape of my lower-back so that part of my lumbar

> area didn't make

> contact with the surface of the mattress. Putting a

> pillow under my

> knees solved the problem and I've slept like that

> ever since.

>

> I guess my spine and I are getting older. My current

> mattress is

> pretty hard and the pillow under the knees is not

> enough to make me

> feel right. So I bought a 2-inch thick foam mattress

> topper. It

> didn't feel firm enough in the lumbar area so I put

> a folded towel

> underneath the topper and it worked. After a few

> weeks It's starting

> to sag and It's not that comfortable anymore. I

> guess the poor

> quality of my foam topper doesn't help. Maybe good

> quality memory

> foam would do.

>

> I would be grateful to get your hints/advice/

> opinions on the topic of

> beds and mattresses. I know that each one of us is

> different, but

> still I think we understand our problems and

> " special " needs

> sometimes even better than doctors.

>

> Thanks.

>

> PS: I have already read some posts on this topic.

> Has anybody noticed

> that the search engine of the forum doesn't work too

> well? (I always

> get only a few matches, if any, when I search for

> something)

>

> <!--

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April 23, 2008

Dear Gail, it took me a while to remember well enough to respond to your

question.

The pain meds were sufficient and the most discomforting thing I felt was

fatigue. Demand rehab for him. Don't let his PT send him right home! Mine

tried to do that, and thankfully, my MD noticed it on my chart and had me

discharged right into a rehab facility.

One more thing. Make a sign to put over his bed, " Spinal Fusion Patient. "

Don't want somebody moving him wrong. I had one.

Lj

Gail Merri <p0etiss@...> wrote:

I plan to stay at the hospital every night he has to

be there. Why did the monitors keep going off? Was

the morphine pump sufficient or did you need pain meds

beyond that? The Dr. said he will be on the morphine

pump for 60 hours followed by percoset. Can you try

to describe what the pain felt like? Thanks.

--- Patti <pattijohnson@...> wrote:

> Gail,

> You will probably want to plan to be with him

> through the first night after his surgery. He will

> be on a morphine pump probably, which he can self

> administer. My husband stayed with me and it was so

> reassuring just to open my eyes and see him there,

> vigilant, supportive, loving, caring. This is a

> tough surgery, no doubt about it. He helped me get

> my sips of water, and helped adjust the pillows, and

> got the nurse to come when the monitors started

> beeping, which they seemed to do so often. The first

> two or three days were hard. And I think the nights

> were the longest. After the lights went out and my

> husband went home, I was left with the hospital

> noises and the beeping monitors, and of course, the

> pain. It was suggested that I have my favorite music

> to soothe me. So if he has an MP3 player, load it up

> with his favorite music. I played my favorite CD

> over and over again.

>

> I had no interest in food for a couple of weeks

> because of nausea and just plain disinterest. So

> they put me on the feeding tube for awhile, and my

> appetite was slow to come back. I think I was off

> the morphine before the week was over and they were

> giving me Percocet and later Darvocet. Then I had to

> have the second surgery! Wow! After two weeks, I was

> doing so much better, weak as a new born, but so

> glad to be alive. When they wheeled me out into the

> sunshine the day they took me to the Rehab Facility

> (not everyone has to do this), I couldn't get enough

> of that sunshine on my face. And the pain was

> completely managable with Percocet. I never had a

> problem getting pain medication, and I had no

> problem getting off it.

>

> So the short answer is, yes, there will be pain, and

> it will be continuous. AND YES, the pain medication

> they give you will take care of it. He will sleep

> through most of it. You are a good mother to be so

> caring and so protective. He is going to be alright.

>

> Patti

>

> Re: Surgery or

> Not?

> > >

> > > I know you are all probably really, really

> sick of

> > > me

> > > by now. I am not normally like this but as you

> > know

> > > this is a huge decision effecting my son's

> health

> > > for

> > > the rest of his life.

> > > We are just about two weeks away from my 19

> year

> > old

> > > son's scoliosis fusion surgery (posterior). He

> has

> > a

> > > 50 degree curve measured by one surgeon and a

> 52

> > > degree curve measured by another surgeon. He

> is

> > > being

> > > fused from T-2 to T12.

> > >

> > > He has donated his own blood and the doctor is

> > > taking

> > > the bone from his rib for the bone graft.

> > >

> > > My dilemma as you know is do we wait until it

> > > progresses (we have good insurance now and I

> think

> > > this is when it would be least disruptive to

> his

> > > life

> > > in terms of time between his freshman and

> > sophomore

> > > years of college) or do we wait and see what

> > happens

> > > down the road.

> > >

> > > My fears....once he is fused the areas above

> and

> > > below

> > > the fusion will over the years get more stress

> and

> > > he

> > > will have to have surgery anyway or a second

> > > surgery,

> > > that he will have pain for the rest of his

> life

> > > while

> > > he has none now and will he have paralysis,

> > > infection,

> > > pneumonia and all kinds of things that can

> happen

> > as

> > > a

> > > result of surgery. My son as far as we know is

> > > otherwise in fine health. He has never been a

> > > physically active kid but generally has never

> had

> > > any

> > > health problems.

> > >

> > > His surgeon has many many years of experience

> and

> > > his

> > > practice is devoted to this area of medicine

> > > specifically. I am told he invented some of

> the

> > > instrumentation they use now but I never

> actually

> > > asked him that question. He said he has never

> had

> > a

> > > patient who became paralyzed as a result of

> this

> > > surgery.

> > >

> > > My son decided to have the surgery but I am

> not

> > sure

> > > he understands the possible implications down

> the

> > > road

> > > and he doesn't really want to talk to me about

> > this.

> > >

> > > So one final yea or nay...would you do it if

> it

> > were

> > > your son....one last what do you think and I

> > promise

> > > to shut up.

> > >

> > > My heart goes out to all of you on here who

> have

> > > suffered so and been through so much. I feel

> so

> > > selfish asking you for anything on here but at

> the

> > > same time think that maybe because of what you

> > have

> > > been through you are more knowledgeable and

> would

> > > understand how hard it is to make this

> decision.

> > >

> > > Ok...shutting up now. One last huge thank you.

>

=== message truncated ===

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April 24, 2008

In a message dated 4/24/08 9:20:27 AM, fyfer1949@... writes:

> Demand rehab for him. Don't let his PT send him right home!

>

It may be age related, but my son at age 19 did prefectly fine with coming

home when discharged and, in fact, it probably helped him because he was so

happy to be home again, being totally pampered by me, surrounded by family,

friends, our pets and his 'toys' - you know video games, cable, movie rentals,

carry

out food favorites, etc.

**************

Need a new ride? Check out the largest

site for U.S. used car listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

April 24, 2008

Hi, Gail.

First of all. Please, don't apologize or feel

selfish for keeping on asking. I think that all of us agree that

scoliosis surgery is something very serious and your insistence is

perfectly justified.

I am a male, like your son. I had my surgery at 16, 12 years ago.

Regarding the possible negative implications of your son's surgery.

I'm not an expert on the subject, but from the research I've done, I

think it must be taken into account that:

-Very rarely a surgical scoliosis patient regrets having undergone

surgery – I certainly don't.

-Major curves due to Adolescent Idiopatic Scoliosis are rarely

painful for teenagers but they very often become painful later on.

-A non operated 50 degree curve is very likely to keep on progressing

at a rate of 0,5 to 1 degree per year in adulthood.

-Your sons lumbar vertebrae will not be fused, which according to

some studies, decreases the odds of suffering premature deterioration

of his unfused spine. And he will keep a great deal of his current

spine mobility – the torathic spine is not too mobile-. Furthermore,

there are studies suggesting that, unlike former procedures, current

procedures for this surgery don't cause premature deterioration of

the unfused lower spine.

-Regarding the post-op pain. Personally, I don't remember it as

something terrible. Just something I had to go through. I am not sure

about that, but I don't think I was given too many pain meds and I

didn't even have any of those morphine pumps. After leaving the

hospital I didn't have to take any pain medication. Being only 16

probably helped (young and flexible bones and muscles) The worst pain

for me, was the " psychological " pain caused by the feeling of strong

dependence on other people's help to carry out the most basic tasks.

Your son is very unlikely to regret his decision. And don't forget

that, after all, it must be his decision. Surgery is very likely to

improve his life in the sort and long terms and prevent problems that

he may not be facing right now but he would have to face later in

life.

Best of lucks for you and your child.

>

> > We bought the 4 and 6 inch memory foam toppers-much

> > better then the just the foam ones, at least for

> > us-it seems what works for one doesn't necessarily

> > work for the next. One of my girlfriends has one

> > those newer style air mattresses that she stuck on

> > top of her mattress and then added a memory foam

> > topper to that and adjusts the amount of air-seems

> > to be doing the trick for her for now.. I still am

> > thankful for having two different comfortable

> > couches-sometimes there is simply no mattress that

> > will work..

> >

> > hope you find something

> > Diane

> >

> > Mattresses. Any hints?

> >

> > Hi, people!

> >

> > Back in 1996, when I was 16, I was fused T5 to L4.

> > One year after

> > that, I started experiencing pain as I changed my

> > mattress into a

> > harder one. I somehow felt that it stayed too rigid

> > and didn't match

> > the shape of my lower-back so that part of my lumbar

> > area didn't make

> > contact with the surface of the mattress. Putting a

> > pillow under my

> > knees solved the problem and I've slept like that

> > ever since.

> >

> > I guess my spine and I are getting older. My current

> > mattress is

> > pretty hard and the pillow under the knees is not

> > enough to make me

> > feel right. So I bought a 2-inch thick foam mattress

> > topper. It

> > didn't feel firm enough in the lumbar area so I put

> > a folded towel

> > underneath the topper and it worked. After a few

> > weeks It's starting

> > to sag and It's not that comfortable anymore. I

> > guess the poor

> > quality of my foam topper doesn't help. Maybe good

> > quality memory

> > foam would do.

> >

> > I would be grateful to get your hints/advice/

> > opinions on the topic of

> > beds and mattresses. I know that each one of us is

> > different, but

> > still I think we understand our problems and

> > " special " needs

> > sometimes even better than doctors.

> >

> > Thanks.

> >

> > PS: I have already read some posts on this topic.

> > Has anybody noticed

> > that the search engine of the forum doesn't work too

> > well? (I always

> > get only a few matches, if any, when I search for

> > something)

> >

> > <!--

> >

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> === message truncated ===

>

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> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

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>

April 24, 2008

Lana, we decided he will have the surgery. He isn't

in pain but could be down the road. Thanks.

--- Lana Jarvis <fyfer1949@...> wrote:

> Dear Gail. It progresses, period. He should have

> the operation. He'll be glad he did, in my opinion.

> My pain disappeared!

> lj

>

> Gail Merri <p0etiss@...> wrote:

> I know you are all probably really, really

> sick of me

> by now. I am not normally like this but as you know

> this is a huge decision effecting my son's health

> for

> the rest of his life.

> We are just about two weeks away from my 19 year old

> son's scoliosis fusion surgery (posterior). He has a

> 50 degree curve measured by one surgeon and a 52

> degree curve measured by another surgeon. He is

> being

> fused from T-2 to T12.

>

> He has donated his own blood and the doctor is

> taking

> the bone from his rib for the bone graft.

>

> My dilemma as you know is do we wait until it

> progresses (we have good insurance now and I think

> this is when it would be least disruptive to his

> life

> in terms of time between his freshman and sophomore

> years of college) or do we wait and see what happens

> down the road.

>

> My fears....once he is fused the areas above and

> below

> the fusion will over the years get more stress and

> he

> will have to have surgery anyway or a second

> surgery,

> that he will have pain for the rest of his life

> while

> he has none now and will he have paralysis,

> infection,

> pneumonia and all kinds of things that can happen as

> a

> result of surgery. My son as far as we know is

> otherwise in fine health. He has never been a

> physically active kid but generally has never had

> any

> health problems.

>

> His surgeon has many many years of experience and

> his

> practice is devoted to this area of medicine

> specifically. I am told he invented some of the

> instrumentation they use now but I never actually

> asked him that question. He said he has never had a

> patient who became paralyzed as a result of this

> surgery.

>

> My son decided to have the surgery but I am not sure

> he understands the possible implications down the

> road

> and he doesn't really want to talk to me about this.

>

> So one final yea or nay...would you do it if it were

> your son....one last what do you think and I promise

> to shut up.

>

> My heart goes out to all of you on here who have

> suffered so and been through so much. I feel so

> selfish asking you for anything on here but at the

> same time think that maybe because of what you have

> been through you are more knowledgeable and would

> understand how hard it is to make this decision.

>

> Ok...shutting up now. One last huge thank you.

>

> --- diane neuman <ne-mandiane@...> wrote:

>

> > We bought the 4 and 6 inch memory foam

> toppers-much

> > better then the just the foam ones, at least for

> > us-it seems what works for one doesn't necessarily

> > work for the next. One of my girlfriends has one

> > those newer style air mattresses that she stuck on

> > top of her mattress and then added a memory foam

> > topper to that and adjusts the amount of air-seems

> > to be doing the trick for her for now.. I still am

> > thankful for having two different comfortable

> > couches-sometimes there is simply no mattress that

> > will work..

> >

> > hope you find something

> > Diane

> >

> > Mattresses. Any

> hints?

> >

> > Hi, people!

> >

> > Back in 1996, when I was 16, I was fused T5 to L4.

> > One year after

> > that, I started experiencing pain as I changed my

> > mattress into a

> > harder one. I somehow felt that it stayed too

> rigid

> > and didn't match

> > the shape of my lower-back so that part of my

> lumbar

> > area didn't make

> > contact with the surface of the mattress. Putting

> a

> > pillow under my

> > knees solved the problem and I've slept like that

> > ever since.

> >

> > I guess my spine and I are getting older. My

> current

> > mattress is

> > pretty hard and the pillow under the knees is not

> > enough to make me

> > feel right. So I bought a 2-inch thick foam

> mattress

> > topper. It

> > didn't feel firm enough in the lumbar area so I

> put

> > a folded towel

> > underneath the topper and it worked. After a few

> > weeks It's starting

> > to sag and It's not that comfortable anymore. I

> > guess the poor

> > quality of my foam topper doesn't help. Maybe good

> > quality memory

> > foam would do.

> >

> > I would be grateful to get your hints/advice/

> > opinions on the topic of

> > beds and mattresses. I know that each one of us is

> > different, but

> > still I think we understand our problems and

> > " special " needs

> > sometimes even better than doctors.

> >

> > Thanks.

> >

> > PS: I have already read some posts on this topic.

> > Has anybody noticed

> > that the search engine of the forum doesn't work

> too

> > well? (I always

> > get only a few matches, if any, when I search for

> > something)

> >

> > <!--

> >

> > #ygrp-mkp{

> > border:1px solid

> > #d8d8d8;font-family:Arial;margin:14px

> > 0px;padding:0px 14px;}

> > #ygrp-mkp hr{

> > border:1px solid #d8d8d8;}

> > #ygrp-mkp #hd{

> >

>

color:#628c2a;font-size:85%;font-weight:bold;line-height:122%;margin:10px

> > 0px;}

> > #ygrp-mkp #ads{

> > margin-bottom:10px;}

> > #ygrp-mkp .ad{

> > padding:0 0;}

> > #ygrp-mkp .ad a{

> > color:#0000ff;text-decoration:none;}

> > -->

> >

> > <!--

> >

> > #ygrp-sponsor #ygrp-lc{

> > font-family:Arial;}

> > #ygrp-sponsor #ygrp-lc #hd{

> > margin:10px

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>

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April 24, 2008

Thank you so much for taking the time to write such a

lengthy reply. It is much appreciated. He is going

to go ahead and have the surgery. I just have to hope

for the best. In one way, once it is over the

decision and time (we have been dealing with this and

waiting for a year) won't be looming over our heads.

It sounds like you are doing well. I am happy for

you.

Ampra79 <ampra79@...> wrote:

> Hi, Gail.

>

> First of all. Please, don't apologize or feel

> selfish for keeping on asking. I think that all of

> us agree that

> scoliosis surgery is something very serious and your

> insistence is

> perfectly justified.

>

> I am a male, like your son. I had my surgery at 16,

> 12 years ago.

> Regarding the possible negative implications of your

> son's surgery.

> I'm not an expert on the subject, but from the

> research I've done, I

> think it must be taken into account that:

> -Very rarely a surgical scoliosis patient regrets

> having undergone

> surgery – I certainly don't.

> -Major curves due to Adolescent Idiopatic Scoliosis

> are rarely

> painful for teenagers but they very often become

> painful later on.

> -A non operated 50 degree curve is very likely to

> keep on progressing

> at a rate of 0,5 to 1 degree per year in adulthood.

> -Your sons lumbar vertebrae will not be fused, which

> according to

> some studies, decreases the odds of suffering

> premature deterioration

> of his unfused spine. And he will keep a great deal

> of his current

> spine mobility – the torathic spine is not too

> mobile-. Furthermore,

> there are studies suggesting that, unlike former

> procedures, current

> procedures for this surgery don't cause premature

> deterioration of

> the unfused lower spine.

> -Regarding the post-op pain. Personally, I don't

> remember it as

> something terrible. Just something I had to go

> through. I am not sure

> about that, but I don't think I was given too many

> pain meds and I

> didn't even have any of those morphine pumps. After

> leaving the

> hospital I didn't have to take any pain medication.

> Being only 16

> probably helped (young and flexible bones and

> muscles) The worst pain

> for me, was the " psychological " pain caused by the

> feeling of strong

> dependence on other people's help to carry out the

> most basic tasks.

>

> Your son is very unlikely to regret his decision.

> And don't forget

> that, after all, it must be his decision. Surgery is

> very likely to

> improve his life in the sort and long terms and

> prevent problems that

> he may not be facing right now but he would have to

> face later in

> life.

>

> Best of lucks for you and your child.

>

> >

> > > We bought the 4 and 6 inch memory foam

> toppers-much

> > > better then the just the foam ones, at least for

> > > us-it seems what works for one doesn't

> necessarily

> > > work for the next. One of my girlfriends has

> one

> > > those newer style air mattresses that she stuck

> on

> > > top of her mattress and then added a memory foam

> > > topper to that and adjusts the amount of

> air-seems

> > > to be doing the trick for her for now.. I still

> am

> > > thankful for having two different comfortable

> > > couches-sometimes there is simply no mattress

> that

> > > will work..

> > >

> > > hope you find something

> > > Diane

> > >

> > > Mattresses. Any

> hints?

> > >

> > > Hi, people!

> > >

> > > Back in 1996, when I was 16, I was fused T5 to

> L4.

> > > One year after

> > > that, I started experiencing pain as I changed

> my

> > > mattress into a

> > > harder one. I somehow felt that it stayed too

> rigid

> > > and didn't match

> > > the shape of my lower-back so that part of my

> lumbar

> > > area didn't make

> > > contact with the surface of the mattress.

> Putting a

>

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April 24, 2008

Someone said to have a sign put up stating back fusion. This is a very good

idea. I had a nurse do this after I was put in a regular wheelchair to take me

down for an xray. I almost passed out from the pain because it was knocking into

the middle of my back. I didn't make it to xray. I was later told by a nurse

that there are special wheelchairs for back surgery patients where the back goes

all the way up to your head. She then put up the sign.

Re: Surgery or

> Not?

> > >

> > > I know you are all probably really, really sick

> of

> > > me

> > > by now. I am not normally like this but as you

> > know

> > > this is a huge decision effecting my son's

> health

> > > for

> > > the rest of his life.

> > > We are just about two weeks away from my 19

> year

> > old

> > > son's scoliosis fusion surgery (posterior). He

> has

> > a

> > > 50 degree curve measured by one surgeon and a

> 52

> > > degree curve measured by another surgeon. He is

> > > being

> > > fused from T-2 to T12.

> > >

> > > He has donated his own blood and the doctor is

> > > taking

> > > the bone from his rib for the bone graft.

> > >

> > > My dilemma as you know is do we wait until it

> > > progresses (we have good insurance now and I

> think

> > > this is when it would be least disruptive to

> his

> > > life

> > > in terms of time between his freshman and

> > sophomore

> > > years of college) or do we wait and see what

> > happens

> > > down the road.

> > >

> > > My fears....once he is fused the areas above

> and

> > > below

> > > the fusion will over the years get more stress

> and

> > > he

> > > will have to have surgery anyway or a second

> > > surgery,

> > > that he will have pain for the rest of his life

> > > while

> > > he has none now and will he have paralysis,

> > > infection,

> > > pneumonia and all kinds of things that can

> happen

> > as

> > > a

> > > result of surgery. My son as far as we know is

> > > otherwise in fine health. He has never been a

> > > physically active kid but generally has never

> had

> > > any

> > > health problems.

> > >

> > > His surgeon has many many years of experience

> and

>

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April 24, 2008

Regarding x-rays days after surgery: I was taken to the x-ray lab on a gurney.

Then they wanted me to stand up! I begged them not to make me do it, but they

insisted that I had to stand in order to do the x-ray. I was in desperate pain,

my legs felt like they were crumbling they were so weak and I had nothing to

hold onto. I was sobbing for help. When they finally brought me out to the hall

on the gurney where my husband waited he could not understand what had happened,

how they had hurt me. I was nearly hysterical. And my surgeon was furious, and

the physical therapist at the hosital was furious. I think heads rolled over

that one. I was not in my brace when they made me stand ...this was just a few

days following my second surgery (anterior first, one week later the

posterior--15 vertebrae). I'll never forget that nightmare experience.

Patti

Re: Surgery or

> Not?

> > >

> > > I know you are all probably really, really sick

> of

> > > me

> > > by now. I am not normally like this but as you

> > know

> > > this is a huge decision effecting my son's

> health

> > > for

> > > the rest of his life.

> > > We are just about two weeks away from my 19

> year

> > old

> > > son's scoliosis fusion surgery (posterior). He

> has

> > a

> > > 50 degree curve measured by one surgeon and a

> 52

> > > degree curve measured by another surgeon. He is

> > > being

> > > fused from T-2 to T12.

> > >

> > > He has donated his own blood and the doctor is

> > > taking

> > > the bone from his rib for the bone graft.

> > >

> > > My dilemma as you know is do we wait until it

> > > progresses (we have good insurance now and I

> think

> > > this is when it would be least disruptive to

> his

> > > life

> > > in terms of time between his freshman and

> > sophomore

> > > years of college) or do we wait and see what

> > happens

> > > down the road.

> > >

> > > My fears....once he is fused the areas above

> and

> > > below

> > > the fusion will over the years get more stress

> and

> > > he

> > > will have to have surgery anyway or a second

> > > surgery,

> > > that he will have pain for the rest of his life

> > > while

> > > he has none now and will he have paralysis,

> > > infection,

> > > pneumonia and all kinds of things that can

> happen

> > as

> > > a

> > > result of surgery. My son as far as we know is

> > > otherwise in fine health. He has never been a

> > > physically active kid but generally has never

> had

> > > any

> > > health problems.

> > >

> > > His surgeon has many many years of experience

> and

>

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April 25, 2008

that is horrible. I would think they could take the

xray with the patient laying down?

--- Patti <pattijohnson@...> wrote:

> Regarding x-rays days after surgery: I was taken to

> the x-ray lab on a gurney. Then they wanted me to

> stand up! I begged them not to make me do it, but

> they insisted that I had to stand in order to do the

> x-ray. I was in desperate pain, my legs felt like

> they were crumbling they were so weak and I had

> nothing to hold onto. I was sobbing for help. When

> they finally brought me out to the hall on the

> gurney where my husband waited he could not

> understand what had happened, how they had hurt me.

> I was nearly hysterical. And my surgeon was furious,

> and the physical therapist at the hosital was

> furious. I think heads rolled over that one. I was

> not in my brace when they made me stand ...this was

> just a few days following my second surgery

> (anterior first, one week later the posterior--15

> vertebrae). I'll never forget that nightmare