complete fusion inevitable...now when

[Guest guest]

athan is 11 1/2. He is starting to hit puberty, but I hear it can take up to

2 years for it to finish?????

He is a quad with a now 80-90 degree curve. A complete fusion, no growth rods,

needs to happen. Docs say it will improve his quality of life as he'll be able

to sit without bracing??????????

My fear is doign the fusion too soon, or too late????? If the chest cavity does

not reach adult size before the fusion, then the lungs will not be able to fully

expand and we will become more prone to pneumonias, or at least this is what I

have learned from my research?????

I do not want to jump into surgery placing my child at risk for more illnesses,

but I do not want to wait and we wind up calcifying into this

curve?????????????????????????????/

Needing ideas, advice, to hear from those been three done that

Thanks

[Guest guest]

Hi Tonni,

I am so sorry to here about athan's situation. Having three sons of my own

I know the worry and fear you must be dealing with.

I don't have experience with your son's type of scoliosis as mine developed when

I was 16 and pretty much fully grown. I have read about other children who are

his age and who have serious curvatures and my understanding is that the

surgeons usually want to use growth rods for the very reasons you stated -

allowing the chest cavity to grow to allow full heart/lung function.

If I were in your shoes, I would seek as many opinions as possible and search

for surgeons who work exclusively with children like athan. You may have to

travel a bit to find such a specialist, but it will be worth it in the long run.

My heart goes out to you and athan, I will keep you in my thoughts and

prayers.

Jeanne

complete fusion inevitable...now when

athan is 11 1/2. He is starting to hit puberty, but I hear it can take up

to 2 years for it to finish?????

He is a quad with a now 80-90 degree curve. A complete fusion, no growth rods,

needs to happen. Docs say it will improve his quality of life as he'll be able

to sit without bracing??????????

My fear is doign the fusion too soon, or too late????? If the chest cavity

does not reach adult size before the fusion, then the lungs will not be able to

fully expand and we will become more prone to pneumonias, or at least this is

what I have learned from my research?????

I do not want to jump into surgery placing my child at risk for more

illnesses, but I do not want to wait and we wind up calcifying into this

curve?????????????????????????????/

Needing ideas, advice, to hear from those been three done that

Thanks

[Guest guest]

Hello,

 

I had my first fusion at the age of 17, however they discovered the 45 degree

curve when I was 12.  They would not complete the surgery at that time, because

I was still growing.  I believe I would have been much better off had they done

the surgery much sooner as they allowed the curve to progress over 5 years and

then could not do anything but stabilize it.  So, I now have a fused spine that

is extremely curved and my second surgery worsened it.  Not trying to scare you

AT ALL, just letting you know that from my experience waiting did not provide

good results.  So, you just have to ask yourself if the chance of lung issues

outweighs the possibility of pain in the future.  I am in pain 24 hours a day

and I ALWAYS wonder if this would be true had my parents gone through with the

surgery when I was only 12 rather than 17.  Hope my experiences help you and

feel free to email me if you have any further questions.  Also, I have

decreased lung

capacity and lung function now due to the severe curves, so it can happen if

you wait too long as well.

God Bless,

Paige

From: Tonni <tbrende7@...>

Subject: complete fusion inevitable...now when

Scoliosis Treatment

Date: Sunday, June 6, 2010, 1:44 PM

 

athan is 11 1/2. He is starting to hit puberty, but I hear it can take up to

2 years for it to finish?????

He is a quad with a now 80-90 degree curve. A complete fusion, no growth rods,

needs to happen. Docs say it will improve his quality of life as he'll be able

to sit without bracing??????????

My fear is doign the fusion too soon, or too late????? If the chest cavity does

not reach adult size before the fusion, then the lungs will not be able to fully

expand and we will become more prone to pneumonias, or at least this is what I

have learned from my research?????

I do not want to jump into surgery placing my child at risk for more illnesses,

but I do not want to wait and we wind up calcifying into this

curve?????????????????????????????/

Needing ideas, advice, to hear from those been three done that

Thanks

[Guest guest]

Although you are dealing with scoliosis issues, since athan is a quad, I am

guessing he has Congenital or Neuromuscular Scoliosis. There are many

differences between Congenital and Neuromuscular Scoliosis, and Idiopathic

Scoliosis (scoliosis of unknown cause).

You will most definitely get a great deal of support, and suggestions on this

list; but, you will find most have or are dealing with issues relating to

Idiopathic Scoliosis. It may be of benefit to go to www., and

search Congenital and/or Neuromuscular Scoliosis (or even juvenile scoliosis),

and join a number of lists in addition to this one. Each list comes from a

different angle, and you will be better able to make a decision with information

from each.

S.

complete fusion inevitable...now when

athan is 11 1/2. He is starting to hit puberty, but I hear it can take up to

2 years for it to finish?????

He is a quad with a now 80-90 degree curve. A complete fusion, no growth rods,

needs to happen. Docs say it will improve his quality of life as he'll be able

to sit without bracing??????????

My fear is doign the fusion too soon, or too late????? If the chest cavity does

not reach adult size before the fusion, then the lungs will not be able to fully

expand and we will become more prone to pneumonias, or at least this is what I

have learned from my research?????

I do not want to jump into surgery placing my child at risk for more illnesses,

but I do not want to wait and we wind up calcifying into this

curve?????????????????????????????/

Needing ideas, advice, to hear from those been three done that

Thanks

[Guest guest]

Thank you Paige for your truth. I am so sorry to hear of your pain and the fact

that your parents were also in my boat thinking it best to wait. I know their

pain all to well, but your words hit my heart, for I think I am seeing that I

must not wait. This is soo hard. He is only 4 1/2 foot tall, which is greta

cause I can still carry him, but I do not want my needs to play any role in

this decision. I will find a way to care for him no matter how tall he gets, but

I know daily it gets harder. I need to be sure that doesn't play any factor here

and part of me fears I am waiting only so I am sure that it is not a factor and

then that too is wrong?????

 

CRAZY he is only 11 and he has been thru so much.

 

Thanks again, for I need to hear all truths

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to

dance in the rain. "  

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't

sit alone, who wants to. He can't stand alone, who needs to. He can't speak our

language, but is more understood than most. He can melt anger with a smile. He

can quiet a loud room without speaking. And he can teach every single one of us

that the little things are what are important. He is our gift and we are forever

grateful.

http://johnathanourgift.synthasite.com/index.php

 

From: Tonni <tbrende7@...>

Subject: complete fusion inevitable...now when

Scoliosis Treatment

Date: Sunday, June 6, 2010, 1:44 PM

 

athan is 11 1/2. He is starting to hit puberty, but I hear it can take up to

2 years for it to finish?????

He is a quad with a now 80-90 degree curve. A complete fusion, no growth rods,

needs to happen. Docs say it will improve his quality of life as he'll be able

to sit without bracing??????????

My fear is doign the fusion too soon, or too late????? If the chest cavity does

not reach adult size before the fusion, then the lungs will not be able to fully

expand and we will become more prone to pneumonias, or at least this is what I

have learned from my research?????

I do not want to jump into surgery placing my child at risk for more illnesses,

but I do not want to wait and we wind up calcifying into this

curve?????????????????????????????/

Needing ideas, advice, to hear from those been three done that

Thanks