Re: Beds

June 24, 2004

I thought you were the foam person, a! Thank You. Cary

June 24, 2004

Cary...My husband and I each control our own side which is good because I am

always fooling with mine. Don't worry if he likes it firm. Judy

June 25, 2004

In a message dated 24/06/2004 23:04:18 Central Standard Time, LambyQ@...

writes:

> Cary...My husband and I each control our own side which is good because I

> am

> always fooling with mine. Don't worry if he likes it firm. Judy

>

Sounds good to me! Cary

August 10, 2004

Hey Simone....

I've tried everything through the years, including waterbeds! I finally

found one that is wonderful.....a pillow top mattress. I believe there were 3

styles of comfort and after lying on them at the store, I went with the softest.

It is so great! We got it prior to my revision, and I haven't had one nights

discomfort with it. My husband loves it too! I most definitely would

recommend them.

Good luck!

Hugs....

August 10, 2004

Hi Simone...

I've done a lot of research on beds, and have tried several myself. I

had always believed the fable of " firm mattresses are better " until I

stayed at my sister's house on vacation. The bed I slept on was old

and the mattress was super soft. I thought I probably wouldn't be

able to walk after sleeping on it one night. To my surpise, I awoke

the next morning feeling better than I had in years. It was a

valuable lesson for me.

My current mattress is hand made, and has firm support, but is very

soft to the touch. It's a McRoskey Airflex. The mattresses that I've

heard the most about from other scoliosis patients are the

TempurPedic, and the Select Comfort (or other air filled mattress).

Both are fairly expensive. Whatever you do, I would highly recommend

that you find a bed that has a 30, 60, or 90 day return policy.

I've known a few people who claim that they can only sleep on really

hard surfaces, but I personally can't imagine that.

Regards,

August 10, 2004

Hi, Simone:

If you visit the Feisty site at and click the link at the left

for Database, you'll see a few databases for which people have

entered information about their mattresses.

Myself, I can't sleep on anything hard. I have a Tempur-pedic. If the

Tempur-pedic is out of price range, you can get a two-inch

thick " mattress topper " of the same kind of foam which provides many

of the same benefits: no hammocking or pressure points, better spinal

alignment, etc.

Others report liking the adjustable " sleep number " mattresses, which

are actually adjustable inflatables. And here's a public service

request. Hey, everyone with an opinion: don't just put it here in the

postings, go add it to the database at the site itself.

Cheers,

Elissa

> Hi All

>

> I was wondering what kind of beds people sleep on, do you have a

special one or just go down the local shop and buy a mattress, I was

thinking that mine was too hard, I have a 4 poster bed with a hard

mattress and have been looking at companies that do special

mattresses, any thoughts?

>

> Simone aka Nutty

> Re: Hi Diane

>

> Hello Diane......I had my revision surgery 3 years ago now in

2001.

> Unfortunately I didn't know about flatback at that time and being

naive about how

> specialized the revision is, I chose to go with the doctors who

did my original

> surgery in 1977. I think they did the right thing, using pedicle

screws and the

> Isola instrumentation, but I don't believe they did the

osteotomies required

> for the flatback. I am currently looking into this and being on

the West

> Coast, may need to go see someone like Dr. Bradford or Hu in San

Francisco.

> Was there anything in particular I can tell you about? The

surgery itself

> and subsequent recovery was what I had expected....quite a long

recovery period

> involved. I have to admit that I didn't mind wearing the TLSO

brace near as

> much as the original surgery 20-odd years ago though, using the

Milwaukee

> Brace! The feeling itself is hard to describe....the surgery and

instrumentation

> in the lower back is just there - I am constantly aware of it

24/7. It's like

> carrying something heavy and uncomfortable around. The clanking

I hear I'm

> sure is the instrumentation hitting bone. There is no pain with

it, it just

> sounds peculiar. I'm sure that revision would help you Diane.

And Dr. Boachie

> will be able to tell you how much straightening to expect. Good

luck and best

> wishes, and please be sure and let us all know how thing work

out!!

> Hugs...........

>

August 10, 2004

At 06:59 PM 8/10/2004 +0000, you wrote:

>H

>My current mattress is hand made, and has firm support, but is very

>soft to the touch. It's a McRoskey Airflex.

I had one of these when I first had the surgery (I believe they made them

in San Francisco, where we lived). I also had a board under the bed for

years, even took it to college with me. Years later, I bought a Perfect

Sleeper queen mattress, and it was heaven (no need for the board

anymore.) But after my recent surgeries, it doesn't feel right. I found

the foam mattresses like the TempuPedic to be too hot for California. I had

an air mattress in the hospital, that worked pretty well (and cheaper than

the newer mattresses.)

Maybe a softer mattress would be better for me now. Guess I'll have to

check out the new ones.

NB

August 10, 2004

Although my wife loves a pillow top, it is very painful for me to

sleep on it. Don't know if different fusions respond differently to

different sleeping surfaces, but...

....

> I've tried everything through the years, including waterbeds! I

finally

> found one that is wonderful.....a pillow top mattress. I believe

there were 3

> styles of comfort and after lying on them at the store, I went

with the softest.

> It is so great! We got it prior to my revision, and I haven't had

one nights

> discomfort with it. My husband loves it too! I most definitely

would

> recommend them.

August 10, 2004

Hola

Yes I will be having a good look around and doing lots of laying on beds in

shops

Thanks

Simone aka Nutty

Re: Beds

Although my wife loves a pillow top, it is very painful for me to

sleep on it. Don't know if different fusions respond differently to

different sleeping surfaces, but...

...

> I've tried everything through the years, including waterbeds! I

finally

> found one that is wonderful.....a pillow top mattress. I believe

there were 3

> styles of comfort and after lying on them at the store, I went

with the softest.

> It is so great! We got it prior to my revision, and I haven't had

one nights

> discomfort with it. My husband loves it too! I most definitely

would

> recommend them.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

August 10, 2004

If you don't want to replace your mattress, then you can get a memory-foam

(theraputic) mattress topper. That is what I have, especially since my

husband and I disagree on mattresses and this was a compromise.

Llweyn

Beds

Hi All

I was wondering what kind of beds people sleep on, do you have a special one

or just go down the local shop and buy a mattress, I was thinking that mine

was too hard, I have a 4 poster bed with a hard mattress and have been

looking at companies that do special mattresses, any thoughts?

Simone aka Nutty

Re: Hi Diane

Hello Diane......I had my revision surgery 3 years ago now in 2001.

Unfortunately I didn't know about flatback at that time and being naive

about how

specialized the revision is, I chose to go with the doctors who did my

original

surgery in 1977. I think they did the right thing, using pedicle screws

and the

Isola instrumentation, but I don't believe they did the osteotomies

required

for the flatback. I am currently looking into this and being on the West

Coast, may need to go see someone like Dr. Bradford or Hu in San

Francisco.

Was there anything in particular I can tell you about? The surgery itself

and subsequent recovery was what I had expected....quite a long recovery

period

involved. I have to admit that I didn't mind wearing the TLSO brace near

as

much as the original surgery 20-odd years ago though, using the Milwaukee

Brace! The feeling itself is hard to describe....the surgery and

instrumentation

in the lower back is just there - I am constantly aware of it 24/7. It's

like

carrying something heavy and uncomfortable around. The clanking I hear

I'm

sure is the instrumentation hitting bone. There is no pain with it, it

just

sounds peculiar. I'm sure that revision would help you Diane. And Dr.

Boachie

will be able to tell you how much straightening to expect. Good luck and

best

wishes, and please be sure and let us all know how thing work out!!

Hugs...........

August 11, 2004

,

Excellent point. We are all individual and may have

very different needs when it comes to beds and other

important decisions involving physical comfort.

Thanks for reminding me once again not to " prescribe "

for everyone else!

Best,

--- Blackledge <scottb2@...> wrote:

---------------------------------

Although my wife loves a pillow top, it is very

painful for me to

sleep on it. Don't know if different fusions respond

differently to

different sleeping surfaces, but...

....

> I've tried everything through the years, including

waterbeds! I

finally

> found one that is wonderful.....a pillow top

mattress. I believe

there were 3

> styles of comfort and after lying on them at the

store, I went

with the softest.

> It is so great! We got it prior to my revision, and

I haven't had

one nights

> discomfort with it. My husband loves it too! I

most definitely

would

> recommend them.

Support for scoliosis-surgery veterans with Harrington

Rod Malalignment Syndrome. Not medical advice. Group

does not control ads or endorse any advertised

products.

August 12, 2004

Elissa and Simone,

I also HIGHLY recommend the Tempur-pedics...they get a 5-star rating in my book.

The matress was not in our budget so we opted for the matress topper...it's

terrific! We now have toppers on all the beds in our home.

All the best,

Beth

--------- Re: Hi Diane

> >

> > Hello Diane......I had my revision surgery 3 years ago now in

> 2001.

> > Unfortunately I didn't know about flatback at that time and being

> naive about how

> > specialized the revision is, I chose to go with the doctors who

> did my original

> > surgery in 1977. I think they did the right thing, using pedicle

> screws and the

> > Isola instrumentation, but I don't believe they did the

> osteotomies required

> > for the flatback. I am currently looking into this and being on

> the West

> > Coast, may need to go see someone like Dr. Bradford or Hu in San

> Francisco.

> > Was there anything in particular I can tell you about? The

> surgery itself

> > and subsequent recovery was what I had expected....quite a long

> recovery period

> > involved. I have to admit that I didn't mind wearing the TLSO

> brace near as

> > much as the original surgery 20-odd years ago though, using the

> Milwaukee

> > Brace! The feeling itself is hard to describe....the surgery and

> instrumentation

> > in the lower back is just there - I am constantly aware of it

> 24/7. It's like

> > carrying something heavy and uncomfortable around. The clanking

> I hear I'm

> > sure is the instrumentation hitting bone. There is no pain with

> it, it just

> > sounds peculiar. I'm sure that revision would help you Diane.

> And Dr. Boachie

> > will be able to tell you how much straightening to expect. Good

> luck and best

> > wishes, and please be sure and let us all know how thing work

> out!!

> > Hugs...........

> >

August 17, 2004

Hi All,

One of my favorite malls here in land (The Arundel Mills Malls) has one of

those " Sleep Number " bed stores in it. I like to go shopping there because,

while it's a rather big mall (an outlet store mall), I strategically plan my

mall trip so that about half-way thru shopping, I go in there and " test " the

beds! Luckily for me, they never seem to have the same salesperson there every

time, so they don't know that I've " tested " the beds previously!!

I don't know about the rest of my fellow Flatbackers, but shopping is now on my

list of " things I like to do " ...even a short shpooing trip lands me on the couch

or my vibrating Lazy-boy for some time afterwards. But I don't mind the Mills

Mall because #1) they have the sleep number bed store and there's a Dairy

Queen in the mall!!

All the best,

Beth

--------- Re: Beds

>

> Although my wife loves a pillow top, it is very painful for me to

> sleep on it. Don't know if different fusions respond differently to

> different sleeping surfaces, but...

>

> ...

> > I've tried everything through the years, including waterbeds! I

> finally

> > found one that is wonderful.....a pillow top mattress. I believe

> there were 3

> > styles of comfort and after lying on them at the store, I went

> with the softest.

> > It is so great! We got it prior to my revision, and I haven't had

> one nights

> > discomfort with it. My husband loves it too! I most definitely

> would

> > recommend them.

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

> Syndrome. Not medical advice. Group does not control ads or endorse any

> advertised products.

>

July 23, 2005

Doug / Kimi,

I never even knew Invacare made beds! Wow and weird!

I have an adjustable bed by Ultramatic. It's queensize, so hubby and I can

sleep together. The only time I raise my head is to " do-my-duty " on the

bedpan. I will put the foot up to do chest therapy if I get a bad chest cold

(knock on wood ... it's been 18yrs since I had to do that). Otherwise, I lay

flat with leg pillows.

The mattress it came with has two sides; one firm and one soft. The soft side

is up and I have a 2 " memory foam topper plus a 1 " medium density memory foam

slab big enough to cover my boney hips/pelvic/butt area when laying on my

back....only on my half of the bed. This puts me 3 " higher than hubby ... I

threaten to roll over him if he snores too loud, LOL! (It's an idle threat

considering I can't roll on my own).

Angie

On 2005.07.23 13:01, Kendra wrote:

> Doug, I'm only 22 and I completely understand. When I was a teenager

> or younger I didn't have a problem adapting to new furniture or a new

> routine. Now I get very cranky and I dread a new situation I know I

> will be facing.

>

> I had one of those beds in NY. I was so excited to get it because I

> could turn myself at night (just sitting it up and then rolling with

> gravity) and thinking I'll sleep so well. That wasn't really true. The

> only sound nights I had in that bed were the ones I passed out on due

> to medication. I was always uncomfortable because the mattress is so

> thin and " dead. " Also, the entire underneath is made of springs. I

> ended up putting 3 cardboard pieces under the mattress so I wasn't a

> victim of the springs in my hips and shoulders at night (3 pieces so

> that the bed would still move and bend properly). I also glued

> multiple egg crate pieces to the top mattress (because they moved

> around too much otherwise - be careful if you try it though, you need

> furniture-specific glue and sometimes the crates bunch up after a while).

>

> Now that I'm back to sleeping on a regular mattress, I miss the

> functions of sitting up and elevating my legs on my own.

>

> Kendra

>

> > The things I hate about ageing with SMA are (I just turned 48): My

>

> body not

>

> > being able to adjust to new things and situations, I just bought a new

> > Invacare adjustable bed, after sleeping in my bed I had as a child

>

> for 40

>

> > some years. I thought hey I can raise my head and feet and be oh so

>

> comfy.

>

> > After having it for a week now I hate it with a passion. Its

>

> institutional

>

> > looking, hard to get the Hoyer under, the mattress is hard and my hip

> > screams in pain all night. I have been sitting in a wheelchair that I'm

> > uncomfortable in all day long for 3 years. We got a new toilet that

>

> I have a

>

> > horrendous time sitting on. Everytime my parents say their getting

>

> something

>

> > new, I cringe cause I know its gonna be hell for me. Now see when I was

> > younger I could adapt my body and myself to these situations and

>

> just go on.

>

> > I used to look forward to getting new appliances etc, know what I

>

> mean, but

>

> > not anymore. Ok, done now, I feel better LOL...Doug

> >

> > (my parents are talking about getting a new bathroom sink, which I

>

> lean on

>

> > to straighten my underwear cringe cringe LOL)

>

> 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:

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>

July 24, 2005

I have this type of bed too, but I had a place custom make the mattress for

about $200. Its comfy as can be. Maybe you can do something like that?

Doug <doug696@...> wrote:

I do use egg crate foam under my hip, but it doesn't work on this lousy bed,

its like sleeping on a sack of springs! I wanted to be able to raise my head

because I thought it would help with keeping my airway clear. I cough all

night long and my lungs rattle, when I sit up it goes away. I can only sleep

my right side because of scoliosis, and the minute I'm turned over I can

feel things closing up, and I imagine what little secretions are present

clog the smaller airway. Does that sound right? Raising the bed gives

minimal relief and the higher I go drives my hip into the bed more, so go

figure. It always seems to be a " damned if I do, and damned if I don't "

situation. I tried Robinol and another drug someone mentioned on this list,

and they did absolutely nothing for the secretion problem. My doctor gave me

a patch for the back of my ear, Transderm-Scop or something like that, but

I'm reluctant to take things he prescribes. He's totally clueless to Sma

and its problems, I have to be my own doctor most times, and rely on these

invaluable lists for info. Ooops, getting off topic here LOL. As for the

bed, I got a real good deal on it. I'd rather make a $800 mistake than a

$2000 one. They included a mattress, free shipping (which was outrageous),

most stores the mattress was extra. Here's a link to the ugly piece of

machinery LOL.............Doug

http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0 &

oidOfCategory=-1610621042 & oidOfProduct=536969476 & prodID=5410IVC

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:

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July 24, 2005

Why not just put another mattress on it? That's what I always did. Sometimes

they're smaller, but then I just put something at the foot of it to keep it from

sliding.

Doug <doug696@...<mailto:doug696@...>> wrote: