hello

[Guest guest]

In a message dated 11/09/2000 11:04:53 AM Pacific Standard Time,

Scoliosis Treatmentegroups writes:

<< If anyone can give good advice or just give some good pointers on

how to deal the back pain sometimes, I am open to anything. >>

Dear Rose,

If you are experiencing breathing difficulties as you wrote, the good advice

you asked for is something you may not want to hear. As one with " breathing

difficulties " from an S curve that progressed in 3 months from nothing to

over 65, the only long term prognosis want to have surgery to stop the

progression. Yes, my breathing was compromised by the rapidly growing curve,

but the surgery stopped it's further damage and perhaps death by suffocation.

Back pain helps...microwaved heat pads, ice gel packs, rest, cushions,

magnets, a good mattress, massage and myofascial release from an experienced

therapist, a TENS unit, good car seat positioning, maintaining good

nutrition, keeping extra weight off, realistic physical job demands,

exercise, and physical therapy are all short term things that have helped

me. I don't respond well to medicines to relieve pain, maybe you will. But

all the above will not cure the cause of the back pain for any length of

time if the progression is beyond the surgical point. And since you

mentioned breathing difficulties you need to address that reality through the

consultations of experienced adult scoliosis doctors.

Jolene in Central California...now 53, spinal fusion with hip bone only 1960

at age 13, 54% lung capacity, severe S curve with lower curve never

stabilized.

[Guest guest]

In a message dated 03/07/2001 10:09:40 AM Pacific Standard Time,

dreamworksperf@... writes:

> Hi my name is Beth. I don't have scoliosis but my 13 yr old daughter,

> Crystal, does. we were scheduled for surgery on April 3rd, but, it has been

> postponed. You see, Crystal has been in a lot of pain the last 3 weeks.

> Twice

> this last week, we went to the ER because she could not handle the pain

> anymore. The ER doctors were not at all sympathetic, you see, scoliosis is

> not supposed to hurt. We saw her Orthopedic Surgeon on Monday, he said that

> the pain must be coming from somewhere else and we need to find out where

>

--------

Dear Beth,

I know how frustrated you must be to have the doctor's deny pain

associated with scoliosis and see you daughter in pain. I am 46 yrs. old,

mother of two teenagers with scoliosis & I have scoliosis, as well. I had my

1st scoli surgery in 1977 & I can remember as far back as 8th grade, sitting

in class 7 having severe sciatica pain radiating down my right leg. I still

have that pain today, only worse, and only now has it been determined to be

associated with my scoliosis.

I agree with the advice that Racine gave you - make sure that

your daughter is as specific as possible when describing the pain; i.e.

location, type of pain & if it radiates from one point to another.

Good luck to you.

[Guest guest]

Hi Beth...

I would encourage your daughter to try to be as specific as possible

when describing her pain. Not only exact location, but whether it's a

burning pain, a dull ache, whether it radiates, whether it's there all

the time or comes and goes, if anything brings on the pain or makes it

go away, etc. It's difficult for everyone, and especially kids, to

describe the specifics of pain, and therefore difficult to diagnose the

origin. You might want to get another opinion. You can find a list of

scoliosis specialists at: http://www.srs.org/htm/mbrlst/mbrlst.htm.

Regards,

[Guest guest]

I would ask for a show of hands those who suffer pain from scoliosis

but around here that would be a lot of people. I haven't figured out

where they get the idea that scoliosis doesn't hurt. Maybe it doesn't

in most people but I had pain at 10 years old. The pain lead to the

discovery of scoliosis. By the time I was finally operated on at 12 I

could barely stand it. It is painful to some people but doctor's

don't seem to acknowledge this.

I discuss problem with chronic pain with a neurosurgeon in Saint

. He said that the curvature may in some cases cause a traction

effect on the nerves by slightly stretching the nerves toward the

curvature. He said that this would cause pain but not show up

anywhere.

Advil is a good pain killer for back problems. Your daughter might

get some relief from it. Advil, the real one not generic, is still my

choice for pain relief over and above my normal pain medication.

(Morphine Sulfate)However your best bet is getting a good family

doctor to access her for pain. The family doctor might be a bit more

sympathetic.

ly I understand the problem you are facing with your daughter. I

don't know any other route to go besides the orthopedic surgeon and

your family doctor. You might get in touch with a Shriner Hospital

and ask for a second opinion. Perhaps there are others that can give

you a few more pieces of advice.

[Guest guest]

Some people do not have pain with scoliosis, but many

of us did/do. Do not belief anyone who insists it

does not hurt. Find a doctor who will help.

=====

Jeanette

__________________________________________________

[Guest guest]

Dear Beth

What did the doctor say after the MRI? What other tests are they going to

do? I'm just wondering whether they have cancelled it indefinitely now and

what did the doctor suggest you do next.

Scoliosis caused pain for me and stress worsened and still worsens it for

me. It might be that she was just totally stressed out because of the

upcoming surgery. Have you considered taking her for massage therapy or

something like that. Just something to try to help her relax before the

surgery date.

Another thought: How well is she informed about the surgery and subsequent

recovery period? Maybe if she can get into contact with someone who have

been through it, or someone who can give her positive objective information

about what to expect, she will feel better about it. I believe we should be

honest with kids and tell them it is going to hurt, but it will get better.

Take care

Sanette

----- Original Message -----

From: <dreamworksperf@...>

................were scheduled for surgery on April 3rd, but, it has been

> postponed. You see, Crystal has been in a lot of pain the last 3 weeks.

...............................Does anyone have

> any ideas about where this pain could be coming from or how to find out or

> what to do

[Guest guest]

ERs are for heart attacks and gunshot wounds. In my experience anyway. Amber

was having pain before her surgery too. In fact, her doctor asked if she was

having pain. She usually had it after sitting in a desk at school all day

and when tired. ER docs probably don't know less than you about scoliosis.

It's a highly specialized field of medicine. What does her spine surgeon say

about it? Does she have an orthopedic?

Sissi

Kids

http://home.isoa.net/~nitetrax/dillon.htm

Work

www.thealbanyjournal.com

Play

www.thealbanyjournal.com/nitetrax.htm

Life is just one damned thing after another. ~ Elbert Hubbard

hello

> Hi my name is Beth. I don't have scoliosis but my 13 yr old daughter,

> Crystal, does. we were scheduled for surgery on April 3rd, but, it has

been

> postponed. You see, Crystal has been in a lot of pain the last 3 weeks.

Twice

> this last week, we went to the ER because she could not handle the pain

> anymore. The ER doctors were not at all sympathetic, you see, scoliosis is

> not supposed to hurt. We saw her Orthopedic Surgeon on Monday, he said

that

> the pain must be coming from somewhere else and we need to find out where

> before we undergo surgery. But we have no clue where this pain is coming

> from. MRI of her spine didn't show a reason for severe pain. Now we are at

a

> loss for what to do next. I can't stand to see her hurting, I would do

> anything to take the pain away even take the pain myself. Does anyone have

> any ideas about where this pain could be coming from or how to find out or

> what to do? Everyday is becoming more and more of a challenge. I thought

> there was a beginning to an end in sight when we had surgery scheduled,

but

> now there feels like there is no hope for an end.By the way we live in

Texas

> in a little town called Santa Fe (its between Galveston and Houston).

> Thankyou, Beth

>

>

>

>

[Guest guest]

OK. after reading the post again, I realize you have already talked to her

doctor. Could be he's just being thorough. I hope so anyway. We didn't find

out until Amber's moving spinal series that a few of her vertabrae that had

rotated had fused together. This was causing stress to the muscles. Can't

the doc prescribe a mild muscle relaxer?

Sissi

Kids

http://home.isoa.net/~nitetrax/dillon.htm

Work

www.thealbanyjournal.com

Play

www.thealbanyjournal.com/nitetrax.htm

Life is just one damned thing after another. ~ Elbert Hubbard

[Guest guest]

Hi, Beth

From what I understand, some scoliosis people hurt and some don't. Mikes

didn't hurt until it got past 60 degrees. What hurt the most was when he

would be " adjusted " to take some of the pressure off, then the tension would

cause it to shift back out. He could feel it " going " . We tried a light

brace to hold him in place (none of his doctors ever prescribed one), but it

didn't help. As his curve got close to 80 degrees he said it pinched in his

chest. His lung capacity diminished. His fitness level dropped, causing

more muscle pains. Because his back was pulling him over sideways, he had to

hold himself erect which caused lower back aches and tiredness. In all, a

bad situation. All this strained his legs and feet, too.

I don't know how severe your daughters curve is. Mike was at 87 when he had

surgery. We tried and tried to get SSI for him, but they were unsympathetic

and we're still fighting.

I know about anguishing over your childrens pain. Many of us do.

I also know about kids avoiding facing it. Mike wouldn't read any of the

kids scoliosis emails and seldom reads any of these unless I specifically

request it. I think it just adds to the situation.

We will pray for your daughter.

Marcia

hello

> Hi my name is Beth. I don't have scoliosis but my 13 yr old daughter,

> Crystal, does. we were scheduled for surgery on April 3rd, but, it has

been

> postponed. You see, Crystal has been in a lot of pain the last 3 weeks.

Twice

> this last week, we went to the ER because she could not handle the pain

> anymore. The ER doctors were not at all sympathetic, you see, scoliosis is

> not supposed to hurt. We saw her Orthopedic Surgeon on Monday, he said

that

> the pain must be coming from somewhere else and we need to find out where

> before we undergo surgery. But we have no clue where this pain is coming

> from. MRI of her spine didn't show a reason for severe pain. Now we are at

a

> loss for what to do next. I can't stand to see her hurting, I would do

> anything to take the pain away even take the pain myself. Does anyone have

> any ideas about where this pain could be coming from or how to find out or

> what to do? Everyday is becoming more and more of a challenge. I thought

> there was a beginning to an end in sight when we had surgery scheduled,

but

> now there feels like there is no hope for an end.By the way we live in

Texas

> in a little town called Santa Fe (its between Galveston and Houston).

> Thankyou, Beth

>

>

>

>

[Guest guest]

Sissi...

What is a moving spinal series?

--

[Guest guest]

It's an X-ray that shows the spine while moving. Amber had hers just about

10 days before her surgery. She was scheduled for a complete spinal fusion

because she had a double or S shaped curve. After reveiwing the moving

spinal series, her doctor had to change plans. She only had the thoracic

curve fused because he had to remove the vertabrae which had fused together

improperly. He repaired these with bone from her hip. This procedure is new

and was done through her side under her arm. Her doctor said he actually

pioneered the procedure.

Anyway, she'll most likely need to have the lumbar curve fused at a later

date. The surgery was twelve hours long as it was. The lumbar fusion would

have taken another 8 hours, which was entirely too long to remain under

anesthesia.

We are very happy with the results. Amber now has a only a 17% curve (it was

64%).

Sissi

Kids

http://home.isoa.net/~nitetrax/dillon.htm

Work

www.thealbanyjournal.com

Play

www.thealbanyjournal.com/nitetrax.htm

Life is just one damned thing after another. ~ Elbert Hubbard

Re: hello

> Sissi...

>

> What is a moving spinal series?

>

> --

>

>

[Guest guest]

Red,<br>Hi! I don't know alot about this...I have

only had hypothyroidism for one year now,and I'm

finding if I take my meds and eat right and get moving I

feel like I did before I found out about this. I can

understand what you are feeling because I went to my doctor

and was like I'm not crazy,but I'm starting to think

I'm going crazy.I know how it is to feel scare,and I

know that your true friends are the ones that know

something is wrong and will be there with you until the

end.Know that you will get to feeling better once they

find out what is going on.I don't know all the

answers,but I have a feeling that you are a very stong

person,and once you know what's going on you will set out to

beat it.<br>You will find alot of good ladies to talk

to here.I have talked to a few of them. Please keep

us updated on what is going on with you,and know

that I'm sending all my good thoughts your

way.<br><br>Take care,<br>Tracey

[Guest guest]

Hang in there. You remind me a little of my

daughter who is 12. She is 5' tall and weighs 65 lbs. She

also eats ALL THE TIME. She is regularly monitored by

her doctor who tries to reassure me that I'm doing

all I can. She also has some mood swings & a variety

of other challenges, but you are certainly coping

with much more than she is. <br><br>I have

hypothyroidism (and a few other assorted diagnoses). My daughter

has ADHD & depression. The stress you are feeling

about how well you are is probably contributing to some

of your complaints, but you have several hallmarks

of hypothyroidism (feeling cold, feeling tired, poor

weight regulation & frequent infectious illnesses).

<br><br>Keep working with your dr. I frequently get VERY VERY

frustrated because I don't feel like we have found the end

of the diagnosis road for me. I want to be better &

I want it NOW! But I've been on the road long

enough to notice that there is forward progress (not

fast enough for me - but it's there) and I am far

better now than I was when I started. <br><br>Hang tough

through the setbacks & try not to get too discouraged.

You will get better. If you can find some outlets to

revive yourself emotionally (meditation, journaling,

chatting with friends, music, anything at all (healthy)

that makes you feel good), that can help keep your

spirits up.<br><br>In the meantime, know that there are

others who understand how you're feeling & we're rooting

for you! ~Rtz

[Guest guest]

Wow Red you sound exactly like me when I was your

age. I was always sick..tempermental and ate all the

time with out gaining weight. <br><br>I wasnt told

what was wrong with me until I was 19 years old. But

during my teenage years I was always tired and depressed

because I didnt know what was wrong with me. <br><br>I

was told I had Hashimoto's disease. Its a form of

Hypothryoidism. The weird thing aboutmy case was I was told when

I started taking synthyroid for my problem I would

start to gain weight. Well that happened. For the

longest time until I was 22 yrs old I could eat anything

I wanted and never gain a pound, I was always under

125 lbs. I loved it..hehe.<br>Now I have fight to

maintain my 155-160lbs figure that I dont love. I am 5'6

...by the way.<br><br>I dont really have any

suggestions for you except to make sure you doctor tests you

for Hasimoto's.<br><br>Thyroid problems have cased a

lot of trouble for me in my years. Weight problems,

sickness like mono, infertility, emotional problems,and

hair loss just to name a few. <br><br>I know its

hard..especailly when the doctors dont even know whats going on

with you..AND thats thier jobs. hehe But at least you

have a place to talk now..and maybe we can help

you.<br><br>I am willing to answer any questions you

have..please feel free to e-mail me privately if you would

like.<br>a1cbrandy@...<br><br>God bless,<br>

[Guest guest]

Hi Cherie! Nice to meet you. I have been married

for almost 2 years, second marriage for both of us. I

have 3 kids, 15, Dylan 9, and Macee 7, 2 dogs, a

cat and a bird. I am also overweight, have been for

about 10 years, but within the last 2 years I have

gained an additional 45-50lbs. I kept telling the doc

that there was something wrong, but they wouldn't do

any kind of testing. Well since I have been diagnosed

I have lost close to 20lbs, still not having too

much energy, and I hate that, because I feel like I am

letting the kids down when I just don't feel like doing

anything with them or taking them places. There could also

be something else going along with it. I have

extremely horrible muscle and joint pain, so bad at times I

can't walk. And it doesn't discriminate against ANY

joint in my body. The doc tested me for rheumatoid

arthritis, lupus, and some other things. My sed rate is

elevated, but they can't find out what's wrong. I have good

days and bad. Hopefully tomorrow won't be a bad day I

have to take my son to a dr's appt that will more than

likely last all day.<br><br>Anyway, sorry to be so

longwinded. I'm glad you joined the other group too!!

<br><br>Suzanne

[Guest guest]

Hey again Suzanne,<br> I understand not having

energy. I see these paid ads on tv and want to work out

but cant seem to get energized and motivated to get

up and do any of it. I did for awhile and lost 4o

something lbs then over the winter i got lazy and tired and

gained about 30lbs of what i lost back that i need to

relose...I was takin xenadrine rfa-1 and it helped alot but

not if im not exercising.I can only take one at a

time cause 2 makes me too jittery. But i did have the

energy to walk and do weights.Anyway..I feel little

better but not as energetic as I would like. I need to

be cleaning house and dont have the want to well

part of me does but i get overwhelmed really

easy...well i have mild carpal in my right arm but it only

bothers me now when i am on computer awhole lot but i

have cut down alot of that time. joint pain but its in

my hands mostly...well better go for now. God

bless,Cherie

[Guest guest]

I know exactly what you are talking about. I see

the ads too. I start feeling so guilty also because

there are days that I just can't summon up the energy

to do anything whatsoever. The kids and my hubby are

wonderful, they do it all when I can't or just don't feel

good. But sometimes I feel that they think I use it as

a crutch and that's just not it at all. So far I've

lost a little weight, but have stopped. I get so

frustrated with it. And now I have to be strong for my son,

he was diagnosed yesterday, officially, with

cerebral palsy, so I need to focus all my energies into

that. <br><br>Suzanne

[Guest guest]

Donna,

Many prayers coming your way.

in Ark

[Guest guest]

Well suzanne I can understand focusing on your

child.I know I put mine over me all the time,just the

mother in us coming out..anyway its just hard sometimes

juggling everything,housework,bills etc.. and what the

kids want or need that it just makes you feel

tired,overwhelmed and that you just dont have the energy to do it

all much less exercise. WEll hang in there girl..and

my prayers are with you and your son. God

bless,Cherie

[Guest guest]

Hey Donna,

Hon...I'm sorry to hear that you've been feeling down and that you are

having complications. I will say a prayer for you!

I missed the support group meeting too. I will also definitely be at the

next one. I missed seeing everyone and it will be great to catch up with

you too! Give me a call anytime...919 231 1289...

Hugs,

Amber

_________________________________________________________

[Guest guest]

Donna, I got your posts. Sorry you are having some problems, I can relate.

Take care.

Kathie

[Guest guest]

Dear Donna, Sorry to hear you're having problems and feeling depressed. It

feels bad feeling bad. What can we do? This note comes with a great big

hug, and a wish for a better day for you. Talk to us. Let us hear you and

help, if only by listening. I always enjoy your posts. Fondly, PhillyJude

[Guest guest]

I am so sorry Donna. Will keep you in my prayers. I do nor remember,

though, were you having any symtpoms? Did you expect a negative

scope?

Laurie

( whose weight bounced back up - ugh!!

> WELL MY LAST POST WORKED...SO I WILL TRY AGAIN...SORRY I MISSED THE

> MEETING..BEEN DEPRESSED....I HAD ENDO DONE....STOMACH FULL OF

> BILE,BILE REFLUX, THEY TOOK 3 BIOPSIES, IM WAITING FOR RESULTS,

> GASTRITUS, DOC THINKS ITS MUCH WORSE THAN SHE ORIGINALLY

> THOUGHT...DISCUSSING NEW MEDICINE OR POSSIBLE SURGERY....ALSO

> PROBLEMS WITH ONE OF MY ARMS FROM BRACHIOPLASTY..IT KEEPS FILLING

> WITH FLUID AND I HAVE TO KEEP HAVING IT DRAINED....MY ARMS ARE

> HOWEVER LOOKING MUCH BETTER AND I AM FINALLY BECOMING PLEASED SINCE

> SWELLING IS GOING DOWN....STILL VERY IMPRESSED WITH THE TUMMY

TUCK..I

> PROMISE I WILL TRY TO MAKE IT TO THE NEXT MEETING...GOOD LUCK TERESA

> WITH EVERYTHING....EVERYONE PLEASE SAY A LITTLE PRAYER FOR ME

> DONNA BRECKENRIDGE

> 5/19/00

> 328/145

[Guest guest]

Donna,

I will be praying for you!!!!

I had no idea your scope was negative?

Keep us informed,I did miss you at the meeting. Are you back at work?

WHat are you NOT able to do ?

LoveYA!

Lori---

>

>

>

>

> > WELL MY LAST POST WORKED...SO I WILL TRY AGAIN...SORRY I MISSED

THE

> > MEETING..BEEN DEPRESSED....I HAD ENDO DONE....STOMACH FULL OF

> > BILE,BILE REFLUX, THEY TOOK 3 BIOPSIES, IM WAITING FOR RESULTS,

> > GASTRITUS, DOC THINKS ITS MUCH WORSE THAN SHE ORIGINALLY

> > THOUGHT...DISCUSSING NEW MEDICINE OR POSSIBLE SURGERY....ALSO

> > PROBLEMS WITH ONE OF MY ARMS FROM BRACHIOPLASTY..IT KEEPS FILLING

> > WITH FLUID AND I HAVE TO KEEP HAVING IT DRAINED....MY ARMS ARE

> > HOWEVER LOOKING MUCH BETTER AND I AM FINALLY BECOMING PLEASED

SINCE

> > SWELLING IS GOING DOWN....STILL VERY IMPRESSED WITH THE TUMMY

> TUCK..I

> > PROMISE I WILL TRY TO MAKE IT TO THE NEXT MEETING...GOOD LUCK

TERESA

> > WITH EVERYTHING....EVERYONE PLEASE SAY A LITTLE PRAYER FOR ME

> > DONNA BRECKENRIDGE

> > 5/19/00

> > 328/145

[Guest guest]

In a message dated 7/5/01 9:25:52 AM Central Daylight Time,

lorireplogle@... writes:

> TERESA

> > > WITH EVERYTHING....EVERYONE PLEASE SAY A LITTLE PRAYER FOR ME

> > > DONNA BRECKENRIDGE

> > > 5/19/00

> > > 328/145

>

Hi Donna,

I'll definitely say a prayer for you and you do the same....it seems as

though someone put a spell on me lately but I'm hoping after surgery tomorrow

I will be able to come back with a vengence. I'm thrilled you are happy with

your tummy tuck and hope to have the same results. Maybe this depression that

we are both experiencing can be lifted!! I'll be thinking of you!

in Raleigh

MGB 11/22/99 270/130 size 24/6