Re: Scoliosis AND Fibromyalgia

[Guest guest]

Thanks! I will talk to my doctor about this. I have tried about

everything else. Elavil (sp?) helped but caused me to sleep so much

that I couldn't function at work.

On Jan 16, 2008, at 1:56 PM, L Howell <moonbeamblessings@...>

wrote:

> ,

> It's for nerve pain. Diabetes, fibro, etc. ~Moonbeam

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>

>

[Guest guest]

You have hit the nail on the head. Since I have scoliosis, all the

doctors have blamed my symptoms on that alone. I finally went and

saw a rheumatologist. She has diagnosed me with fibromyalgia as

well. I am supposed to start participating in a fibro clinic

sometime soon. This doctor is in addition to my pain management

doctor whom treats my pain due to scoliosis. I just don't think

people understand that when your spine curves that your muscles and

nerves are being stretched as well as the wear and tear of the

vertebrae causing bad degenerative arthritis prematurely. Put these

all together and try to do anything and your body wears out just

trying to compensate being in an upright position! Two years ago I

opted on having the smaller surgery in the lumbar region. Since that

did not relieve my pain, I opted to have the larger surgery. My

doctor won't do it now for some reason whereas he was ready and

willing two years ago. I don't know what changed with him. The only

doctor that I have seen up until recently has been my pain doctor.

When I went back to see my spine doctor, he told me I needed to learn

to live with the pain and stop going to see so many doctors. I have

no idea where he got that at. It really hurt because I trusted him

with my whole being and then he had the nerve to address me like

that! It seems that when I take my husband along with me, the

doctors take me more seriously. I now take him with me to my

appointments. He has mondays off and I schedule my appts for mondays

only!

On Fri 01/11/08 12:35 PM , Beverlee sent:

I can't imagine that men drs treat men patients as poorly as they

treat women. Especially women in pain. After anterior/posterior

fusion at the age of 45, I went back to work after 6 months, full

time as an ICU nurse. 12 hour shifts. It was backbreaking work on a

good day! But I loved my work and as I've said before, a brief stint-

6 months- at desk work caused more pain that being on my feet. But I

worked very closely with one dr- he was a real buddy to the ICU

nurses. He knew all of us on a personal basis- about our families,

etc. He knew all about my fusion and the many problems I had. But

when I had my incident when I broke my rod and fusion and was in the

worse pain I could imagine, he turned into a total stranger! He acted

like I was malingering! I was never late for work, never never called

in about my back except when I had to have the tops of my rods cut

down. I had a nerve pain so bad I could not move my right arm

forward. Not compatible with my work. But back to

the dr- he told me I needed to find " alternative " ways of taking

care of my pain. I had been to an acupuncturist and a chiropractor

many times to try to control my chronic pain. I went to a massage

therapist as often as I could afford it. This new pain was unlike any

pain I had experienced. I kept telling him that it felt like I was

walking on broken bones. The dr did not listen. He was hesitant to

give me pain meds. When he got me to a low dose of MS Contin he said

he just could not prescribe anything more. I absolutely insisted that

I be sent to a pain clinic. I was very very blessed that I have found

a place where my problems are understood and addressed. I have not

been back to the dr who I thought I knew so well. It was equally hard

to deal with the fact that I did not have a correct diagnosis until a

year and a half later. All I could say was that I had pain that got

much worse when I sat or stood for too long. I should not have cared

what others thought about me but

I will admit that I did. I can't count how many times I heard " my

back bothers me too. You just have to keep going " or " you have to put

it out of your mind " etc. It was very depressing at times. I feel so

bad for anyone who has not found a place of acceptance. I could not

have survived in the pain I had initially. I have learned so much

from this group. And I have realized how many problems others have in

finding pain relief. It is a major issue with so many people. Of

course I had to go to NYC from SC for my surgery so I have sure had

my problems. But I feel really blessed. Good luck to everyone in

finding your own relief! And a dr who will treat you with respect and

not like " it's all in your head " . My BP goes up just thinking about

it. Bea

Randie Meyer wrote: I had the opposite experience about my back

pain. They would NOT believe my scoliosis was causing my pain. Of

course they thought I was exaggerating, but they ran every test they

could think of to figure out why I'd be in pain. They said that

scoliosis doesn't cause pain. Right. Interesting that so many of us

with it have similar symptoms. It's gotten much better over the

years, but it just seems that a woman with back pain automatically

falls into the catagory of being weak, whiny, looking for attention

or a way to get out of working, or whatever. I have had so much

negative interaction in regards to my pain. If any of those people

had an inkling of how much I've suffered and kept going....but that's

the way it is. I wonder if men with scoliosis pain get as much crap

and disbelief. Men?

Re: Scoliosis AND Fibromyalgia

Debbie,

I know what you're saying about them not referring you

& discounting your pain. Also I know what you mean

about the pain being on the back burner & you kinda

'forget' about it until it screams at you 'here I AM

LADY!' It took me years for my doc to believe me about

my pain. I was in agony! After 4 yrs he referred me to

a pain clinic, but then it took a year or 2 to find

one that would accept me. So more waiting, wasting my

life. If it were the doctors in pain, it would be a

different story, we all know that. Once you find a doc

who 'gets' you & is willing to listen to you then

you've struck gold. Their ego is not invested in your

seeing someone else, they just want to help you find

something that works.

Also, some doctors seem to put you in a box, label

you. Like with you, since you have scoliosis ANY back

pain (cervical, thoracic, lumbar) is going to be

attributed to the scoliosis. They won't even search

for anything else because they see the scoliosis & say

well, there's your problem, you've just got to learn

to deal with the pain. Meanwhile you could have a

ruptured disc, broken hardware, arthritis, autoimmune

disorder, you name it. I've dealt with being in the

box when it comes to scoliosis and have had to talk

til I'm blue in the face sometimes. ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Looking for last minute shopping deals?

Find them fast with Search. http://tools. [4] search..

com/newsearch/ category. php?category= shopping

__________________________________________________________

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ [5]

[Guest guest]

Thanks, Bea; for your response. I have been on Vicodin of some sort for probably

3 years and just since last spring the Duragesic patches. That happened when I

wen to see my holistic doc for the first time in a long time and he took one

look at me and said " I think you need surgery! " That blew me and my husband

away; because of course he would try anything besides traditional medicine. But

I HAD done it all: acupuncture, yoga, massage, chiro, and pain meds. That's when

I first started to take surgery seriously; it took me all summer to find my

surgeon and schedule it. I still went thru some kind of breakdown emotionally

right before the surgery. I had said I would never have surgery (the nurse in

me) unless I couldn't walk or the pain got too bad. I had to admit to myself I

was at that point. Today, as I type this, I couldn't be happier I made that

decision. I'm really starting to make some strides in my physical health. And I

made the choice to only have my lumbar done. I

still have the 52+ degree thoracic curve but it seems to be doing really well.

All we have is today, and TODAY is very good for me. I hope its good for some of

you out there.

DEBBIE

P.S. Moonbeam, I'm on the coast now, in the redwoods. Probably has something

to do with my good frame of mind today.

Beverlee <bea_simmons@...> wrote:

I am so sorry you had such a horrible experience. As I try to put all

the facts in order as far as a revision in my future, may I ask how long you

were on pain meds before having the nightmare surgery? I have been on some sort

of morphine for almost 5 years, plus methadone for 3 1/2 years. I am fortunate

that I haven't needed an increase in my dose in years. I just wonder where it

leaves me as far as pain control post op. Thanks, Bea

debbie brickley <debbiebrickley@...> wrote: Well, since I'm reading all

these stories, I have to put my 2 cents in. Because I was on 50mcg Duragesic

patches and lots of Norco (Vicodin) before surgery, I was concerned about pain

control post-op. Well they put me on high doses of something (Dilaudid?) and 100

mcg of Duragesic postop. I was in pain but in a tunnel. I kept pushing the

button to self-medicate, but I was just getting further out there. I also had

problems with my IV's. The anthesiologist intern put a #14 in my left arm that

jabbed up into my elbow and was SO uncomfortable. There was no reason that I

needed a hose like that in my arm; I think she just did it because I had good

veins and it was practice.(That's what you get at a teaching hospital. Also, a

bunch of interns at 5am turning on the lights, rolling you over, ripping the

dressing off your back and then slapping a new one on.) Well, it took alot of

asking to get them to

change that! Anyway, they realized right before change of shift that I was

allergic to the IV pain med; all they had was oral pain meds ordered besides the

IV one I was allergic to. By that time I had thrown up all over EVERYTHING. To

make a long story short, I laid there hurting like hell in my own barf for 2

hours with my very young nurse in tears because no one would help her change me

and she didn't have an order to medicate me.. I still dont know what the whole

story was because I was so far out there. Just another story in the land of

surgery.

Debbie

Patti <pattijohnson@...> wrote: When you are in the hospital

and there are incidences where you are treated poorly, or you are not receiving

the treatment you should be getting, you can ask to speak to the floor nurse.

Tell her your problems, and you should get some results. I had a couple of

nurses who should have never been assigned to care for a patient with the

critical care that I required that first day after surgery. I complained to the

floor nurse and was moved to a different side of the surgery ward where I got

some fabulous care.

My first night after 11 hours of surgery, and one day in ICU, I was put in a

room with another patient. She was the victim of a terrible accident. Both of us

had critical needs. I begged for a private room from the floor nurse and my

surgeon the next morning. Lo and behold! I got my private room, but the air

conditioning didn't work. So I asked to be moved again. And before the day was

over, I was finally moved to a room in the " quiet side " they assured me I was

able to rest and heal, and prepare myself for the NEXT surgery which was only a

few days away.

So the message is speak up to the floor nurse and your doctors. You should get

results.

Patti

Re: Re: Scoliosis AND Fibromyalgia

I think mine tops the cake. While recovering in the hospital after my

initial scoliosis surgery, a nurse came in with pills for me to take. When I

told

her that I needed help to sit up, totally looking annoyed she replied,

" Honey, my back is just as bad as yours. " That whole ordeal (the hospital) was

the worst experience in my life.

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

[Guest guest]

Good Lord, Debbie, a #14 in your arm! While I

understand that teaching hospitals are necessary & I

had my 3 major surgeries at Baptist in Winston-Salem,

NC for all my other surgeries I chose nonteaching

hospitals. For my GERD & hernia surgery I chose a

'regular' hospital & my father was asking why wasn't I

going to Baptist. I told him 'I've been a guinea pig

for nearly 30 years, with my bed surrounded by ppl

watching what I was going thru and students hurting me

because they didn't know what they were doing.For this

surgery, I'm going to have the surgery done by a

doctor and my aftercare performed by nurses who know

what they are doing. It hurts enough to go through it

when they are experts in their fields, but I refuse to

subject myself to the torture of someone learning on

me if I don't have to.'

Mind you, I had just experienced a myelogram by a

student at Baptist who couldn't gain access to the

spinal canal. He tried for nearly 3 hours before

success. He stripped off his gloves & got a new needle

& made the area sterile more than 5 times.I was

begging for the attending. I had absolutely no

sedation or pain meds.Not a xanax.Nothing for pain.

All I got was a lidocaine injection. One lidocaine

injection at the beginning.

Of all the medical procedures I've endured I've never

had anything as torturous done. I was screaming, tears

& snot were all over my face & the pillow. I ripped

tears into the 'mattress' with my nails. He kept

hitting scar tissue and nerves making it feel like

electrical volts were running down my legs.

By the time the procedure was over & I got down off

the table, I physically could not walk. At this point,

that section of the hospital was closed for the day

since it was nearly 6:00. I walked very slowly &

gingerly for 20 feet before crumbling to the floor

unable to move another inch. No one was around but a

janitor. All other hospital staff had left. My father

went & got a wheelchair to get me out to the car. I

begged for pain meds because I knew it was only going

to increase in magnitude of pain as the evening wore

on. Guess what they gave me? Tylenol #3. When I looked

at the script I told him you've got to be kidding me.

I couldn't get anything stronger & for me, taking

Tylenol 3 is like drinking water. So, I went home &

spent the weekend in hell in the recliner. Can you

read between the lines here the venom I have for this

guy? I only hope that he will someday feel what he put

me thru. There were 3 of us in the room.I don't know

what level nurse or assistant was in there, but when I

was sitting up at the end she said, 'oh, did we make

you cry? did it really hurt?' Bitch. ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

,

I took elavil for a while as well. I was on 100mg. It

gave me dry mouth so bad that my gums were sticking to

my teeth & sometimes it would feel like I'd have to

peel my tongue free. I was first prescribed it for

migraines and a few years later as part of the

cocktail at the pain clinic. Even though I would take

it early in the evening, it would make me the

sleepiest around 7am when I had to get up for work. I

eventually stopped taking it & noticed no difference

without it other than the cotton mouth went away. ~Moonbeam

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

Your spine doctor told you to learn to live with the

pain & stop going to so many doctors? Un%%%%ing

believable! Excuse me, but if you were getting any

relief from anybody you wouldn't have to see other

doctors. Whether you see one doc or ten is of no

concern to him. He should be concerned that you are in

pain. You are not going to docs because you enjoy it

as a way to spend your day or because you'd really

rather give them your money than spend it on living

life. It's a shame that you're treated better when you

have your hubby along. Sometimes having a witness

helps. ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Kathy,

I had a bad experience with an IV back when I had my

back surg in 77. All weekend long I complained of my

arm hurting. It was wrapped up, I suppose to keep the

needle in, but nobody bothered to check it. Finally,

one of the nurses who was especially good to me came

on duty Monday morning. I told him my arm was burning

really bad. He unwrapped my arm & I had phlebitis. He

was po'd that nobody had bothered to listen to me or

my mother who was with me 24/7 during my entire 5 wk

stay. I still have problems with that arm to this day.

It's got arthritis in it really bad and the vein is

small & hard to get blood out of. ~Moonbeam

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Yes, all hospitals are different. After one hospital

stay, I sent a glowing report detailing the excellent

care I received. They even had good food- a first in

my experience. I ate all 3 meals & snacks. I've never

before gained weight while in the hospital, but this

particular time I did. I only had one prob with a

substitute sleeping pill being given to me one night

instead of ambien. I complained at the time & told the

nurse that particular med only made me anxious-which

it did. I was doing laps up & down the hall at 3am

when the night duty nurse came by my room after I went

in & opened the curtains, windows & turned on all the

lights to sit there & read. She gave me xanax & I

calmed down & dozed off. And, they didn't have zomig

for my migraine that I had as a result the following

day. I reported my headache at 6am & didn't receive

imitrex until nearly 3pm. This was after a nurse

friend, a vascular lab friend, & the chaplain had all

taken great pains to see that I got the meds for my

migraine in addition to the nurses assigned to me. My

doctor came to me the next day & said I should have

someone bring me migraine meds from home. Home was

over an hour away & I had elderly parents for whom

travel was difficult. Besides, I was in a hospital,

couldn't they order the meds? Even with that snafu, it

was a good stay. I included the problems with the

positive comments to the president. In general, it was

one of the most caring staff in all departments I'd

ever encountered. ~Moonbeam

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

That is horrible. How could they allow that to continue? You could have had a

stroke triggered by that.

Re: Scoliosis AND Fibromyalgia

Good Lord, Debbie, a #14 in your arm! While I

understand that teaching hospitals are necessary & I

had my 3 major surgeries at Baptist in Winston-Salem,

NC for all my other surgeries I chose nonteaching

hospitals. For my GERD & hernia surgery I chose a

'regular' hospital & my father was asking why wasn't I

going to Baptist. I told him 'I've been a guinea pig

for nearly 30 years, with my bed surrounded by ppl

watching what I was going thru and students hurting me

because they didn't know what they were doing.For this

surgery, I'm going to have the surgery done by a

doctor and my aftercare performed by nurses who know

what they are doing. It hurts enough to go through it

when they are experts in their fields, but I refuse to

subject myself to the torture of someone learning on

me if I don't have to.'

Mind you, I had just experienced a myelogram by a

student at Baptist who couldn't gain access to the

spinal canal. He tried for nearly 3 hours before

success. He stripped off his gloves & got a new needle

& made the area sterile more than 5 times.I was

begging for the attending. I had absolutely no

sedation or pain meds.Not a xanax.Nothing for pain.

All I got was a lidocaine injection. One lidocaine

injection at the beginning.

Of all the medical procedures I've endured I've never

had anything as torturous done. I was screaming, tears

& snot were all over my face & the pillow. I ripped

tears into the 'mattress' with my nails. He kept

hitting scar tissue and nerves making it feel like

electrical volts were running down my legs.

By the time the procedure was over & I got down off

the table, I physically could not walk. At this point,

that section of the hospital was closed for the day

since it was nearly 6:00. I walked very slowly &

gingerly for 20 feet before crumbling to the floor

unable to move another inch. No one was around but a

janitor. All other hospital staff had left. My father

went & got a wheelchair to get me out to the car. I

begged for pain meds because I knew it was only going

to increase in magnitude of pain as the evening wore

on. Guess what they gave me? Tylenol #3. When I looked

at the script I told him you've got to be kidding me.

I couldn't get anything stronger & for me, taking

Tylenol 3 is like drinking water. So, I went home &

spent the weekend in hell in the recliner. Can you

read between the lines here the venom I have for this

guy? I only hope that he will someday feel what he put

me thru. There were 3 of us in the room.I don't know

what level nurse or assistant was in there, but when I

was sitting up at the end she said, 'oh, did we make

you cry? did it really hurt?' Bitch. ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Never miss a thing. Make your home page.

http://www.. com/r/hs

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Randie,

You mentioned I could've had a stroke triggered by

that. I did have a stroke later that year. The

myelogram was done in January & my first TIAs were in

May. The stroke was July 9. I never thought about

connecting the myelogram. ~Moonbeam

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I know a woman who had a problem with her epidural. It took them 14 stabs before

they hit the right spot. She had a stroke right after giving birth. She didn't

sue because she was a nurse at the hospital. I went to a different hospital for

my ct myleo.

Re: Scoliosis AND Fibromyalgia

Randie,

You mentioned I could've had a stroke triggered by

that. I did have a stroke later that year. The

myelogram was done in January & my first TIAs were in

May. The stroke was July 9. I never thought about

connecting the myelogram. ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Be a better friend, newshound, and

know-it-all with Mobile. Try it now. http://mobile. /

;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

Randie,

Thanks so much for posting that information. I never

would've thought about anybody having a stroke from

such a procedure. And the poor woman who was poked 14

times for the epidural, goodness gracious as if she

wasn't in enough pain already!!!

The 1st myelogram I had was prior to my scoli surg in

1977 at age 11. Back then, they treated the myelogram

as a minor surgery & put you under general anesthesia

(at the hospital where I was, anyway. it might've been

different elsewhere). I was very nauseated the

following day & vomited on my favorite nurse. 1st &

only time I've ever puked on a person <said grinning

proudly>

The 2nd myelogram-well you read about that procedure.

They were trying to determine why I was having such

intense pain that the pain meds they were giving me

weren't helping. After all that, the tests didn't show

anything.

That same day I had a CT. It was the only time the

technician had ever done a full-spine CT (well

practically full spine...from T1-sacrum). That itself

took several hours of just lying still in the machine.

The guy kept checking on me to see if I was ok,

because I was under a vent & freezing. Had to lie

still & in a certain position, so there wasn't much

that could be done. He was sweet enough to get some

towels to shield my arms from the breeze somewhat.

I have a lump on the back of my head - right where

your head makes contact if you're lying flat on your

back (the occiput). I asked for a pillow, but they

said no. I was placing my hand under my head becuz it

was painful for that area to touch the 'mattress.'

Finally, some compassionate soul brought a washcloth

that she folded & placed under my head. It was better

than nothing.

I tell you, being sick is bad enough, but when you've

got bones going in different directions & bony

outgrowths...there just aren't a lot of ppl who

understand how uncomfortable bony protrusions are to

lie on. Suggest someone that they walk on their knees

& they wouldn't enjoy doing it for very long....

How was your myelogram performed? Were you sedated or

given anything for pain? Were the CT & myelogram done

at the same time? Same room? ~Moonbeam

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

Dear Randie, you mentioned bony outgrowths. Have you been tested for CMT

(Charcot-Marie-Tooth Disease)? I was only diagnosed last Tuesday and I've had

it all my life. It causes scoli! The side effects of CMT is daily fatigue,

possible scoliosis (it often occurs!), bone deformity, drop foot, possible

tremors, muscle twitching in various places, high arch and/or flat feet, deep

foot itch, swollen feet, pins and needles in the feet and lower legs, numbness

in feet, legs and possibly arms and hands, water cysts on the fingers, rolling

ankles, and frequent loss of balance or falling. Stress makes it worse. It is

inherited from one or both parents who are at least carriers. A DNA genetic

test will help confirm it, but one may have an EMG in a neuro lab to confirm it,

also. It is progressive, something WE all know about already!

Lana

L Howell <moonbeamblessings@...> wrote:

Randie,

Thanks so much for posting that information. I never

would've thought about anybody having a stroke from

such a procedure. And the poor woman who was poked 14

times for the epidural, goodness gracious as if she

wasn't in enough pain already!!!

The 1st myelogram I had was prior to my scoli surg in

1977 at age 11. Back then, they treated the myelogram

as a minor surgery & put you under general anesthesia

(at the hospital where I was, anyway. it might've been

different elsewhere). I was very nauseated the

following day & vomited on my favorite nurse. 1st &

only time I've ever puked on a person <said grinning

proudly>

The 2nd myelogram-well you read about that procedure.

They were trying to determine why I was having such

intense pain that the pain meds they were giving me

weren't helping. After all that, the tests didn't show

anything.

That same day I had a CT. It was the only time the

technician had ever done a full-spine CT (well

practically full spine...from T1-sacrum). That itself

took several hours of just lying still in the machine.

The guy kept checking on me to see if I was ok,

because I was under a vent & freezing. Had to lie

still & in a certain position, so there wasn't much

that could be done. He was sweet enough to get some

towels to shield my arms from the breeze somewhat.

I have a lump on the back of my head - right where

your head makes contact if you're lying flat on your

back (the occiput). I asked for a pillow, but they

said no. I was placing my hand under my head becuz it

was painful for that area to touch the 'mattress.'

Finally, some compassionate soul brought a washcloth

that she folded & placed under my head. It was better

than nothing.

I tell you, being sick is bad enough, but when you've

got bones going in different directions & bony

outgrowths...there just aren't a lot of ppl who

understand how uncomfortable bony protrusions are to

lie on. Suggest someone that they walk on their knees

& they wouldn't enjoy doing it for very long....

How was your myelogram performed? Were you sedated or

given anything for pain? Were the CT & myelogram done

at the same time? Same room? ~Moonbeam

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

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

Never miss a thing. Make your homepage.

[Guest guest]

I first had the dye injected then I was tilted then wheeled into a different

room for the CT. The only uncomfortable part for me was lying on my stomach. I

can't turn my head to the side, so what was I to do? I had to make due, and

suddenly toward the end of it I got this intense pain in my lower back that

radiated into my hips and legs. It lasted about a week. I think it was from

lying in a position that was pulling on muscles because my " normal " position is

somewhat leaned forward. Otherwise it wasn't bad. I certainly didn't have the

problems you had. If I'd read your post prior I wonder if I'd have chickened

out. Although I did walk out of the other hospital, the one where my neighbor

had the experience with the epidural. I didn't know about that at the time, all

I knew was they were disorganized and I didn't have a good feeling. I felt like

I didn't want anyone from there sticking a needle in my spine. Now I'm very glad

I listened to my intuition.

Re: Scoliosis AND Fibromyalgia

Randie,

Thanks so much for posting that information. I never

would've thought about anybody having a stroke from

such a procedure. And the poor woman who was poked 14

times for the epidural, goodness gracious as if she

wasn't in enough pain already!!!

The 1st myelogram I had was prior to my scoli surg in

1977 at age 11. Back then, they treated the myelogram

as a minor surgery & put you under general anesthesia

(at the hospital where I was, anyway. it might've been

different elsewhere). I was very nauseated the

following day & vomited on my favorite nurse. 1st &

only time I've ever puked on a person <said grinning

proudly>

The 2nd myelogram-well you read about that procedure.

They were trying to determine why I was having such

intense pain that the pain meds they were giving me

weren't helping. After all that, the tests didn't show

anything.

That same day I had a CT. It was the only time the

technician had ever done a full-spine CT (well

practically full spine...from T1-sacrum). That itself

took several hours of just lying still in the machine.

The guy kept checking on me to see if I was ok,

because I was under a vent & freezing. Had to lie

still & in a certain position, so there wasn't much

that could be done. He was sweet enough to get some

towels to shield my arms from the breeze somewhat.

I have a lump on the back of my head - right where

your head makes contact if you're lying flat on your

back (the occiput). I asked for a pillow, but they

said no. I was placing my hand under my head becuz it

was painful for that area to touch the 'mattress.'

Finally, some compassionate soul brought a washcloth

that she folded & placed under my head. It was better

than nothing.

I tell you, being sick is bad enough, but when you've

got bones going in different directions & bony

outgrowths.. .there just aren't a lot of ppl who

understand how uncomfortable bony protrusions are to

lie on. Suggest someone that they walk on their knees

& they wouldn't enjoy doing it for very long....

How was your myelogram performed? Were you sedated or

given anything for pain? Were the CT & myelogram done

at the same time? Same room? ~Moonbeam

____________ _________ _________ _________ _________ _________ _

Looking for last minute shopping deals?

Find them fast with Search. http://tools. search.. com/newsearch/

category. php?category= shopping

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

Randie,

It's a VERY good thing u listened to your intuition.

Since your neighbor had the problem with the

epidural-did she have any spinal problems?

I kinda lean forward from the hips. Its noticeable in

some pictures. Lying on my stomach is uncomfortable

for me unless I'm on a massage table that has the

special 'doughnut' for your head to be lower than your

body & facing forward. I remember when I was a

teenager & we'd lie out in the sun (tanning bed

businesses weren't in business yet)I'd be very pale on

the back because it wasn't comfy to lie on my front...

~Moonbeam

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

During my posterior phase of my surgery, I was placed on my stomach with my head

in a 'doughnut'. Because of being in that position for 11 hours, I came out of

surgery with a pressure wound to my forehead. It was an angry red wound that

looked much like a burn. Everyone who saw me said, " OMG, what happened to your

forehead? " It took a couple of months for the " burn " to heal. But I have a scar

across my forehead now that will be with me the rest of my life. I wear bangs to

cover it up. Never thought I would end up with a scar on my face for scoliosis

surgery.

Anyone else have this problem?

Patti

Re: Scoliosis AND Fibromyalgia

Randie,

It's a VERY good thing u listened to your intuition.

Since your neighbor had the problem with the

epidural-did she have any spinal problems?

I kinda lean forward from the hips. Its noticeable in

some pictures. Lying on my stomach is uncomfortable

for me unless I'm on a massage table that has the

special 'doughnut' for your head to be lower than your

body & facing forward. I remember when I was a

teenager & we'd lie out in the sun (tanning bed

businesses weren't in business yet)I'd be very pale on

the back because it wasn't comfy to lie on my front...

~Moonbeam

__________________________________________________________

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I can just see the puzzled looks on the faces now when

you say you got the scar from scoliosis surgery! I've

never heard of that happening-until now. Wow, that's

some severe burn for it to last like that & cause a

scar! ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

I've never heard of CMT. Thanks for this information!

So many of the symptoms listed are ones I have that

I've thought were due to my scoliosis: numbness,

tingling, rolling ankles, etc. I'm gonna do some

research on this for sure! ~Moonbeam

________________________________________________________________________________\

____

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

During my first surgery which was posterior and 12 hours on a doughnut, I

had a bad bruise on the side of my nose where the incubation tube came around.

It scabbed and then left a funny scar for about a year. After that it got a

lot less noticeable and it is completely gone now.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Dear Moonbeam, I so happy to have been able to help some people here. That's

great.

Lana

L Howell <moonbeamblessings@...> wrote:

I've never heard of CMT. Thanks for this information!

So many of the symptoms listed are ones I have that

I've thought were due to my scoliosis: numbness,

tingling, rolling ankles, etc. I'm gonna do some

research on this for sure! ~Moonbeam

__________________________________________________________

Be a better friend, newshound, and

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

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

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

Never miss a thing. Make your homepage.

[Guest guest]

Thank you for responding. That is encouraging news that your scar eventually

disappeared. It has been just over a year since my surgery, so maybe with a

little more time, the scar on my forehead will become less noticeable also.

Patti

Re: Re: Scoliosis AND Fibromyalgia

During my first surgery which was posterior and 12 hours on a doughnut, I

had a bad bruise on the side of my nose where the incubation tube came around.

It scabbed and then left a funny scar for about a year. After that it got a

lot less noticeable and it is completely gone now.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Has anyone had experience with Miami Children's

Hospital?

--- Khanley40@... wrote:

> My experience with that nurse who told me her back

> was worst than mine was

> just the beginning. That whole ordeal was a

> nightmare and we did report her

> and other incidences to not only the doctor but the

> head honcho of the

> hospital for the nurses. The problem was that the

> hospital was going through a

> major overhaul (had just merged with other

> hospitals) and everyone was

> reassigned. So I had nurses that never cared for

> someone who had surgery like mine.

> One of the nights there my morphine pump stopped

> working and my cathedar

> slipped. I begged all night telling the nurse

> something was wrong. Finally when

> my husband called and I told him he raced to the

> hospital and by that time

> the pain manager came in and couldn't believe that I

> had no pain medicine all

> night. The day nurse just started, checked my

> cathedar and also was upset

> that I had laid there all night with it like that.

>

> When I had to have my revision surgery I was

> petrified and so was my

> husband. He told the doctor he was going to hire

> private nurses to stay with me.

> The doctor told us he had no problem with that but

> to wait and see if I really

> needed it. He guaranteed me that the level of care

> I would receive would be

> tops. He was right. I was in Hospital for Special

> Surgery in NYC.

> Everyone was great. I never even had to call for

> the nurses. They were always

> right there. As a matter of fact we wrote the

> hospital and the doctor a letter

> to tell them how wonderful they were. To tell you

> the truth the first few

> days I don't even remember a lot. My husband said

> I started to run a fever and

> the nurse never left my side. He said they were

> all great. So let's

> remember not all health care professionals and

> hospitals are the same.

>

> As far as the general population goes I find the

> opposite happens. When

> people find out what types of surgeries I have had

> they always apologize for

> complaining about a backache to me. I usually tell

> them don't apologize I'm

> sure it really hurts to them. I didn't tell people

> at work for almost a year

> that I had this kind of surgery. They couldn't

> believe it. Unfortunately like

> everything else in this world, there are people who

> are sensitive to others

> and some insensitive. Unless you have gone through

> it yourself, most people

> can't relate. That's why this board is important

> because you can feel you

> are not alone and we can all " relate " .

>

> Kathy

>

>

>

> **************Start the year off right. Easy ways

> to stay in shape.

>

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

I know the message to which I'm responding is over a

month old, but I've been banned from the PC by my

roomie & it's difficult to answer anything if I by

chance to get to read it. Here's my chance: while your

nurse really is in need of a whack upside her head for

making such a comment, one of the nurses I had postop

came in & began cranking the head of the bed up.

Fortunately, someone stopped her, because back in 1977

you had to remain flat on your back for 30 days

postop. Even after she was told this by my mother &

another nurse, she then tried to lift me up by placing

her arm under my shoulders to take my meds! When she

was told that was a " no way " , she wanted me to lift my

head to take the pills. Did this woman just drop from

another planet? I'd been taking the pills & eating my

meals just fine lying flat on my back. All you need is

one of those flexible straws to slurp your drink with

& you're good to go...

Thankfully today they have you up very quickly, so

this isn't even an issue any more. It's just a fact in

the annals of time & history. Oh, and poor medical

treatment. ~Moonbeam

From: " Khanley40aol (DOT) com " <Khanley40aol (DOT) com>

Scoliosis Treatment

Sent: Sunday, January 13, 2008 5:41:13 AM

Subject: Re: Re: Scoliosis AND

Fibromyalgia

I think mine tops the cake. While recovering in the

hospital after my

initial scoliosis surgery, a nurse came in with pills

for me to take. When I told

her that I needed help to sit up, totally looking

annoyed she replied,

" Honey, my back is just as bad as yours. " That whole

ordeal (the hospital) was

the worst experience in my life

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

Hi,, I fixed the 'being moved against doctor's orders' problem by hand printing

a sign and taping it over my bed! It said: " SPINAL FUSION PATIENT! " I didn't

care what anybody thought or said, (and no one said anything, notwithstanding

what they may have thought), and had no problems. With so many accidents in

hospitals today, I didn't want to take any chances. At the time that I made the

sign (at home day before surgery), it wasn't clear if I'd be intubated during

surgery, and if I was, I'd be too sore or too groggy to respond if somebody

tried to move me. Thus, the sign. IT WORKED.

Lana

L Howell <moonbeamblessings@...> wrote:

I know the message to which I'm responding is over a

month old, but I've been banned from the PC by my

roomie & it's difficult to answer anything if I by

chance to get to read it. Here's my chance: while your

nurse really is in need of a whack upside her head for

making such a comment, one of the nurses I had postop

came in & began cranking the head of the bed up.

Fortunately, someone stopped her, because back in 1977

you had to remain flat on your back for 30 days

postop. Even after she was told this by my mother &

another nurse, she then tried to lift me up by placing

her arm under my shoulders to take my meds! When she

was told that was a " no way " , she wanted me to lift my

head to take the pills. Did this woman just drop from

another planet? I'd been taking the pills & eating my

meals just fine lying flat on my back. All you need is

one of those flexible straws to slurp your drink with

& you're good to go...

Thankfully today they have you up very quickly, so

this isn't even an issue any more. It's just a fact in

the annals of time & history. Oh, and poor medical

treatment. ~Moonbeam

From: " Khanley40aol (DOT) com " <Khanley40aol (DOT) com>

Scoliosis Treatment

Sent: Sunday, January 13, 2008 5:41:13 AM

Subject: Re: Re: Scoliosis AND

Fibromyalgia

I think mine tops the cake. While recovering in the

hospital after my

initial scoliosis surgery, a nurse came in with pills

for me to take. When I told

her that I needed help to sit up, totally looking

annoyed she replied,

" Honey, my back is just as bad as yours. " That whole

ordeal (the hospital) was

the worst experience in my life

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

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

Never miss a thing. Make your homepage.

[Guest guest]

I wish I'd thought of that. I just got back from my 3rd and 4th surgery. 3rd

being an anterior revision plus L5-S1, and 5 days later posterior revision on

L2-L4 removal and replacement of hardware etc. The next day the nurse walks in

and turns my bed into a slide as I'm screaming at her to leave the bed alone.

She then asks me if I want her to massage my back. I asked her if I was her

first back surgery patient. She said no, and I told her to never move a bed of a

person who is out of back surgery and to certainly not touch our back. Man!

Re: Re: Scoliosis AND

Fibromyalgia

I think mine tops the cake. While recovering in the

hospital after my

initial scoliosis surgery, a nurse came in with pills

for me to take. When I told

her that I needed help to sit up, totally looking

annoyed she replied,

" Honey, my back is just as bad as yours. " That whole

ordeal (the hospital) was

the worst experience in my life

____________ _________ _________ _________ _________ _________ _

Looking for last minute shopping deals?

Find them fast with Search. http://tools. search.. com/newsearch/

category. php?category= shopping

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

Never miss a thing. Make your homepage.