Re: Hello, I am new!

October 25, 2000

Hi Terri...

This is a moderated list, so there can sometimes be a delay between

sending an email and seeing it posted to the list.

Hopefully, your son can be braced to see if that will stop the

progression of his curves. I think it's probably likely that your son

will eventually have to have surgery. However, it would be great if the

brace would halt progression until he is skeletally mature.

Be sure that you're seeing a qualified scoliosis specialist. You can

find a list of them at:

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

Best of luck.

Regards,

October 25, 2000

Terri,

With an 11 year old boy with curves of 54 and 46 degrees, not yet in

puberty, I would say the likelihood of non-surgical intervention being

successful is minimal. In puberty he is bound to have additional growth,

which will probably cause additional curving. As you say, we are not

doctors, so you have to take that into consideration in reading any of our

posts, but from my limited knowledge of scoliosis (a year and a half with a

daughter with double curves of 45 and 35), curves such as you describe

generally will progress when puberty hits, at which point, surgery will

probably be a necessity. While I am certainly not one to encourage people

to take such a step, sometimes there really isn't much other choice. So at

this point, I would say the following: if you haven't started a notebook,

start one now. Write down every question you have and leave room to write

down the answers. Take the notebook with you every time you take your son

to see the doctor. Write down what you are told. Let the doctor know you

have questions and try to ask as many as you can. Obviously, if you show

up with fifteen questions, you are not going to make an ally of the doctor

with interrogating him for half an hour, in addition to the examination

time. But try to see which questions are the most crucial and ask those.

Encourage your son to ask questions. If he feels like he is given a voice

this whole business will be a little easier for him. Take note of the

doctor's attitude towards being questioned. If you find the doctor to be

abrupt and not pleased with having to give more information than he has

volunteered, this may be an issue you want to think about. If he doesn't

want to talk with you like that in the office, how will you feel about

asking him questions after surgery is done? And how will he respond? This

is your kid, and believe it or not, getting what is best for your kid is

more important than padding the doctor's billfold. Get more than one

opinion. At least two, preferably three or four. Don't let them rush you

into getting surgery for your boy until you are certain (or as certain as

it's possible to be in that situation) that this is the best thing to do.

One other thing. Right now, I know you are scared. You are embarking upon

a journey that is confusing and overwheming, and can shake you to your

foundations. Parents who are comforted by the knowledge that they know

exactly what is necessary for their kid will find this journey unsettling

in the extreme because there will be many times when you will have more

questions than answers, and just when you think you have it figured out,

you will discover new questions. Treatment of scoliosis is not exact and

is ever changing. You are doing the right thing for your boy by asking for

information and support from this list. There are many people on this list

who are very knowledgeable and can be of help to you. You are doing the

right thing by searching for answers. I have a list of scoliosis web sites

that another list member sent me, and if you are interested, perhaps I

could e-mail it to you. You are a great mom, and your son is very

fortunate to have you there fighting for him. It's going to be OK for both

of you. Give him a hug and give yourself a hug. It's going to be a rocky

ride, but you will both come out of it OK.

One more thing. Check out Shriners' Hospitals. They specialize in

children, and scoliosis is at the top of the list of orthopedic conditions

that they treat. My daughter is getting her treatment through Shriners.

They are very, very good with children. There is no charge for their

services. Also no maximum income. If your kid has a qualifying condition,

you are accepted. They will provide treatment up to age 18, and up to age

21 if it is deemed medically necessary. My across the street neighbors had

a son almost 20 years ago. He had a deformed leg, which ultimately had to

be removed. Shriners did it all. The amputation, providing a prosthesis,

everything. They told his dad that two or three months before the boy

turns 21 to bring him in and they would make him one more leg. Prosthetic

limbs are very very spendy. So is scoliosis surgery. Check it out.

I would be happy to e-mail with you. You are not alone.

Blessings,

Cecile

> [Original Message]

> From: Terri Lawrenz <dougnter@...>

> <Scoliosis Treatmentegroups>

> Date: 10/25/00 12:59:32 PM

> Subject: Hello, I am new!

>

> First visit here!

>

> Last week my son was diagnosed with scoliosis. He has a 54 degree

> lumber curve and a 46 degree thoracic curve. I don't know much of

> anything about this condition so I am seeking support and to hear

> your stories. We see an orthopod at Gillete childrens center on Nov

> 22. Our doctor thinks surgery may be needed. What do you all think?

> The curve has progressed rapidly and he is only 11 years old, and has

> not hit puberty. Please share your stories and thoughts. I know you

> are not drs, but I want info and support from friends who can be

> honest and have been there. If you have had the surgery, how did it

> go?

>

October 25, 2000

" However, it would be great if the

brace would halt progression until he is skeletally mature. "

, thanks for your kind words and warm welcome. What are the

benefits of waiting until he is skeletally mature?

October 25, 2000

> " Be sure that you're seeing a qualified scoliosis specialist. "

Thanks for your info on that. My sons dr IS on the list.....number

269! Thanks! That gives me a little more faith.

October 25, 2000

Thank you soooo much !

That does make sense. I wondered how his growth would continue with

the rods in his spine. That makes a lot of sense. From research i

have done on the net, I have comes to discover that in a young child

who has not hit puberty, that his case will get considerably worse

once the puberty growth spurt hits. Therefore, I assumed that the

earlier the surgery, the better his chances of success would be. This

is something that I am confident that the dr will know best about and

will be the main factor for us. I am certain surgery will have to

take place eventually, but I will have to leave it up to the drs to

decide whether it is best to do it now or a couple years down the

road. If the dr feels his health is at risk(his growing lungs or

heart from the pressure of the rib cage)then I imagine he will want

to do it right away. I think that is how his MD feels, that he should

have it now, to avoid more serious trouble later in life. But of

course, he is only an MD and not a orthopedic. So he can't be

certain. Our appt on the 22nd should give us more insight. Thanks so

much for shedding some light for me!

October 25, 2000

Cecile, thank you so much for all of your words of encouragement. It

is comforting talking to others who have " been there " . I would love

for you to email me with your info and links. My email is

dougnter@... How old is your daughter? Is she in a brace now,

and is it working? What type of brace is best, or is that very

controversial?

I will tell you a little bit more about Josh. He has not complained

about anything, and we never noticed anything strange about his back

until in August when we were on vacation. He was at the pool and

diving in, when we noticed one shoulder blade sat different than the

other. Now, back in 4th grade, he took a fall from a high tower in

school and landed on that same shoulder, so we thought that perhaps

the abnormal shoulder was a result of his fall. After his fall, he

did have xrays done and his shoulder was fine, nothing broken. Just

bad bruising. He has not complained of any pain. A couple weeks ago,

I start to notice him slouching a lot and that his shoulder blade

seemed to be sticking out even worse. So I took his to the chiro. The

chiro referred him a regular physician to have xrays taken. The

doctor could tell just from looking at him without even seeing the

xrays that his curve would definately require bracing. After viewing

the xrays, he felt that it was neccessary to not mess around, but to

send him directly to " the best " , a pediatric othopedic at Gillette.

That is the appt we are waiting for on Nov 22nd. His radiology report

came back showing the curves at 54 and 46, much worse than my husband

and I expected. I feel so bad that I didn't notice it sooner. I feel

like I, as a parent, should have caught it before it got this bad. It

seems to be getting worse by the day.(maybe it is my phobia and my

imagination!) Now we have to play the waiting game. So for now, we

are gathering as much advice and info as possible to prepare

ourselves for whats ahead for poor Josh. He is very scared, but he

knows that surgery is probably a lot better choice for him, than

having to spend the next several years of his life in a brace.(jr

high and high school are hard enough!)

I appreciate you taking the time for such a detailed response. It is

good to know that there are good people out there such as yourself

that are willing to loan some support and encouragement. We will need

much of it in the months ahead.

Terri

October 26, 2000

Hi Terri,

My daughter is having sugery in January. She's scared, I'm scared. She's 16

with a double curve --60% thoracic and 38% lumbar.

I can't offer much help but it does sound like your son's case is rather

severe, especially since he's so young and has such a severe curve.

You know what they say... prepare for the worst , but hope for the best.

best to you,

Sissi

nitetrax@...

Kids' Page

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

What is now proved was once only imagined. ~ Blake

Hello, I am new!