newbie... and boy do i need help and support

[Guest guest]

hi, i was diagnosed with scoliosis when i was 8 years old, i was

placed in a back brace (the milwaki for a start) and well to make a

long story short i didnt like my brace so i stupidly didn't wear it.

when i was about 17 the doctor told me I needed surgery, well i

threatened to run away from home if my mom tried to make me... i

guess i was a bit of a brat. since the time i was 18 i have had

little to no health insurance but now i am 26, and thanks to the love

of my life i finally have health insurance that will cover my

surgery. it is at this point that i am lost, i was looking online for

some patients stories about post surgery, but they all seem to be

teenage girls, i dont know if what they went through will be the same

as what i should expect. And naturally i am scared to death of going

through office visits again, particularly since i know that they will

culminate with me on an operating table, so i have not actually seen

a doctor, in fact i'm leaving it up to my boyfriend to schedule the

initial appointment with my doctor so i can get a referral to a

specialist.

well now that i have posted my life story i'm really not sure what

else to say, but i guess what i am really hoping for is contact from

people who were diagnosed in their preteens or teens but didnt

recieve surgery til around their 20's and any info or support they

can give. thanks

[Guest guest]

Hi Tati,

The key difference in post-surgical recovery between a teenager and

someone your age is a somewhat longer and usually more painful

recovery process. Just how big that difference is depends on a wide

variety of factors, including how severe your curvature is and what

surgical approach your surgeon would use, among other issues. But it

also depends a lot on you. If you're physically fit, in generally

good health, have a great mental attitude, and that love of your life

will help you out, your recovery will go much faster and more

smoothly.

Recovery for a 26 year old shouldn't be too bad. I'm 30 and just had

surgery 8 weeks ago. The first week in the hospital was horrific, and

the 2nd and 3rd weeks were quite trying, as well. But by the 5th week

I was almost completely back to normal, and today I'm 95% of my old

self. I think it's safe to say for almost any adult that you'll

be " restricted " at a minimum during your first 6 weeks of recovery;

many teenagers recover twice as fast and return to school after only

3 weeks.

It's perfectly natural to be scared of surgery. I was scared out of

my mind. But there are tens of thousands of people out there who are

proof that you CAN handle surgery.

And by the way, just because one doctor told you that you needed

surgery several years ago doesn't necessarily mean it's appropriate

in your case. No matter what, I strongly encourage you to get a 2nd

opinion.

Good luck!

Dave

> hi, i was diagnosed with scoliosis when i was 8 years old, i was

> placed in a back brace (the milwaki for a start) and well to make a

> long story short i didnt like my brace so i stupidly didn't wear

it.

> when i was about 17 the doctor told me I needed surgery, well i

> threatened to run away from home if my mom tried to make me... i

> guess i was a bit of a brat. since the time i was 18 i have had

> little to no health insurance but now i am 26, and thanks to the

love

> of my life i finally have health insurance that will cover my

> surgery. it is at this point that i am lost, i was looking online

for

> some patients stories about post surgery, but they all seem to be

> teenage girls, i dont know if what they went through will be the

same

> as what i should expect. And naturally i am scared to death of

going

> through office visits again, particularly since i know that they

will

> culminate with me on an operating table, so i have not actually

seen

> a doctor, in fact i'm leaving it up to my boyfriend to schedule the

> initial appointment with my doctor so i can get a referral to a

> specialist.

> well now that i have posted my life story i'm really not sure what

> else to say, but i guess what i am really hoping for is contact

from

> people who were diagnosed in their preteens or teens but didnt

> recieve surgery til around their 20's and any info or support they

> can give. thanks

[Guest guest]

Hi Tati

I was 26 when I had my surgery. There is no way to sugar coat it to make it

sound like a breeze, but I agree that mental attitude is an extremely

important factor. For me the first few days after surgery were the

absolute worst part of the whole process. After that each day I felt

stronger and more like my old self. I can't comment on the procedure today

because I had my surgery 26 years ago!! Back then it was bed for the first

3 weeks, then a body cast for 6 months. But from a " feel well "

standpoint -- I felt pretty good about 2 weeks post-op, and feeling really

good by the time I left the hospital at 3 weeks. I was back to work 2

months post-op.

I had a 79 degree thorasic curve which was corrected to 33 degrees. I grew

1 1/2 inches on the operating table!

I had decided to do the surgery because of the progressive back pain I was

experiencing -- after recovering from the surgery, my back pain was pretty

much gone & for the first time since being diagnosed, I forgot about the

scoliosis altogether.

I also agree with Dave, you should get a second opinion and learn as much as

you can so the decision you make is an informed one. Having scoliosis does

not necessary equate to having surgery. Each person is different.

Gloria

[Guest guest]

Hi Tati,

I am so sorry that you are having to go thru this. I too was diagnosed

when I was around 11 but in my case, I had an ignorant family Dr. who

informed my mother that I would " outgrow " the curvature! (This was in

the 60's and at that time, Dr.'s were considered to by " demi-Gods " that

you never questioned, so my parents just let it go.) Unfortunately, I

woke up every day with backaches, but didn't realize that this was

abnormal!! Anyway, at 22, I was informed that I should see about getting

the rod surgery and even had an appointment lined up with a Dr. I then

discovered I was pregnant with my 1st child and of course, everything

came to a screeching halt. Soon after having my daughter, my husband and

I moved 250 miles away and due to the fact that I didn't have what I

considered to be to much pain, I just went merrily on with my life! I

would have a " flare-up " about once a year that would literally put me

down for about 3 weeks, but I didn't think that it was drastic enough to

require surgery. In 1983, after the birth of my 2nd daughter, I started

having real problems. In Oct. of 1984, it was discovered that my spine

(that was originally a double curvature, upper 45 degrees, lower 35

degrees, had advanced into a triple curvature with a 35 deg. in my neck,

68 in thoracic, and 53 in lumbar.) At that time I was 33 years old and

because I had waited so long, I not only needed the rod implantation, but

also a complete reconstruction of the entire thoracic spine! This meant

2 surgeries scheduled a week apart. If I had the surgery when I had been

your age (or younger), I probably would not of had to have the

reconstruction work done. I believe it was that factor that made my

recovery so painful as well as then causing me to become completely

disabled. Unfortunately, no one had ever told me of the consequences of

not having the surgery back when I was 22! I know how frightened you

are, believe me, I honestly thought that I was not going to survive the

surgeries! (As I had stated in my " intro " letter, my condition had

become life threatening.) The thought of leaving my 2 girls (9 years &

18 months), was unthinkable to me. The surgeries were literally a living

hell. This was largely due to a Dr. that had what is commonly called in

the medical field as the " Super Star syndrome " ! He decided that I was

abusing drugs and therefore didn't allow me the pain medication needed

after the surgeries. Please be very selective when you choose a Dr.! Be

sure to ask what course of pain control that he will give to you not only

while you are in the hospital, but also when you go home. Also, make

sure that he will cooperate with your own physician once you are home.

There was a gal in her 30's that came in to see me during my recovery

that had the same procedure as I had and she was doing well. There were

numerous factors attributing to the problems that I had, 1 of the biggest

was a improperly made brace. I have only talked with a couple of other

people that have had to have this surgery and they were lucky enough to

not have had the reconstruction problem so they had just the rod

implants. One of these gals even got pregnant with no problems at all.

The key is catching it early enough and I am hoping that you have done

so. The rod surgery is no picnic, but it sure is better than the

alternative of allowing it to go to far to where it becomes life

threatening! Go ahead and see the Dr. and if you are not 100%

comfortable with him, FIND ANOTHER ONE! You really need to have a good

working relationship with your Dr. for you to have the best possible care

and recovery. I hope I haven't bored you, but I don't want to ever see

anyone go through what I had to go through. Good luck and keep me

posted! My prayers are with you.

Sincerely,

Kathie

[Guest guest]

Hi " Boy do I need help " ,

I'm 58 years old and didn't have my first surgery till I was 32 (that was

back in the dark ages of Harrington rods and plaster casts for a year).

You'll be fine - in a way your hard-headedness paid off as the techniques

for fixing you up have been greatly refined - you'll be in and out of the

hospital in a matter of days and with a new back to boot. There are lots of

people who have been operated on after their teen-age years ( I even heard

of a 70+ year-old woman who had the surgery). So get your appointments - be

sure to get more than one opinion: see two, or better three scoliosis

surgery specialists, (ones who are members of the Scoliosis Research

Society are considered tops - they have a web site, or if you tell us where

you live, I'm pretty sure someone on the list can give you names - I would,

but I live in Europe which I don't think is too handy for you). Good luck

and keep us posted.

from Italy

[Guest guest]

Kathie,

Was (is) the " superstar " (facetious) doctor in California also?

Thanks,

loriann

[Guest guest]

well i'm in massachusettes, but i dont even know how the whole

referal process is handle... wont my PCP just refer me to a certain

doc? also i have another question, like i said b4 i'm 26 i do not

have any children but i plan to have some... probably 2, so would it

be better to plan on having children before or after surgery, or does

it not really matter... plus if it is fine to have them after how

long after surgery should i wait before getting pregnant?

[Guest guest]

Hi Tati...

You will be able to have children after your surgery. I think doctors

usually suggest waiting at least a year before getting pregnant. One

thing to consider, however, is that carrying children, putting them in

car seats, etc., is very difficult on one's back. If there's enough

time, I would recommend having children and waiting until they're about

5 years old before having the surgery.

It sounds like you're in an HMO. If that's the case, you'll need a

referral from your PCP. I don't know what resources doctors use to

refer patients to specialists. If possible, it might be good to get

your PCP to refer you to someone on this list:

http://www.srs.org/htm/mbrlst/mbrlst.htm

Regards,

[Guest guest]

To Racine,

, what do you think about this page being inundated with the stuff about

nutrients, etc.? Ysabol is a separate group, right? I get really confused

at times, and I notice that each group now has a statement at the bottom of

the page. Anyway, those are really administrative things. What I am asking

you is about the first question in the paragraph. I apologize for

digressing.

Carole

[Guest guest]

does whatever it wants in terms of adverstising. We can't

control what they put on the bottom of the messages or on the web

pages. They have to pay their bills like everyone else. It's

something that we have to live with.

However there is an increase in spam messages concerning certain

questionable products which I delete before they even reach the

group.

I hope that answers your question even though you addressed it to

.

Leger

[Guest guest]

Carole...

The Scoliosis Treatment list is a different forum than

ScolioChat. I am not the owner of either list.

Regards,

scolioly2@... wrote:

> , what do you think about this page being inundated with the stuff about

> nutrients, etc.? u