Re: New member with tons of info on non-surgical treatments for scoliosi

Posted April 16, 2004 · April 16, 2004

Dear Mikeala,

You have a 70 degree curve and are 14 years old. What is your lung function?

Have you been tested? Pain is not the issue at 14 years old-it is what is

happening to your lungs. Please get them tested immediately.

Jolene

Posted April 17, 2004 · April 17, 2004

Dear Mikeala and her Mom,

I feel as though i should chirrup at this point. I think Mikeala is doing a

wonderful job and admire her commitment. I had a severe scoliosis around

her age and did much the same as she is - weekly pt, ballet, swimming,

exercises twice a day. Even when my curves reached 76 and 65 degrees (I had

an " s " curve), one could barely tell I had a scoliosis.

What " undid " me and sent me to the operating room was having two children

in three years. My spine just went kaput, and surgery was the only option.

Still, I didn't have to go through it till I was 32, and while they were

still casting people, I did not have to stay in bed for a year! Techniques

improve all the time, so I personally don't think waiting is a bad idea. On

the other hand, given my experience with the " great crashing spine " after

the birth of my second child, you might want discuss what effect eventual

pregnancy and childbirth could have on Mikeala's scoliosis.

In the meantime I wish you all the best and congratulate you on your

courage in following your chosen path.

Best,

from Italy

Posted April 17, 2004 · April 17, 2004

> Dear Mikeala,

> You have a 70 degree curve and are 14 years old. What is your lung

function?

> Have you been tested? Pain is not the issue at 14 years old-it is

what is

> happening to your lungs. Please get them tested immediately.

> Jolene

>

> Hello Jolene,

My name is Robin Sandhoff and am Mikeala's mother. I have to disagree

with your statement that pain is not an issue at 14 years of age

because we are in contact with children in her situation that have

tremendous pain. The doctors have agreed that exercise whether you

are 14 or 94 is really the key to managing pain. Unfortunately, it is

something that you really can't do once you are in pain. What she is

trying to say to you is that if you stay on a rigorous regime of

stretching, swimming, yoga, etc.. it really helps to minimize your

pain level BEFORE it becomes an issue. Also, her heart and lungs are

still functioning 100 %. We have just had her hand x-rayed to see if

her growth plates have closed. Good news! She is finished growing...

We have been told that there is the posibility of continuing into her

adult years to progress at 1 degree per year. On the other hand, we

have also been told that she may not see any further progression. At

this point, we are continuing to have her see a chiropractor 3X a

week and she has physical therapy 5X a week. Both docs are

continuosly amazed at how she looks. Her back shows no signs of any

disfiguration... the x-rays are the only way you would be able to

tell that she is 70 degrees. Should we see further progression, I

think Mikaela will know that it is time to look at the other options.

For now, she is in amazing health because she is incredibly committed

to staying healthy.

In health,

Robin Sandhoff

>

Posted April 17, 2004 · April 17, 2004

Dear from Italy,

Thank you so much for your support! We have been through hell with

all of the " Alternative " docs out there. The only thing we have found

that really helps is exercise and chiropractic adjustments.

Unfortunately, she has seen so many kids her age in pain and with

surgeries that weren't successful... ie, more pain than when they

started, broken hardware, infection, all kinds of things. I think she

really just wants to wait until it's absolutely necessary. Her lungs,

heart and physical condition is still perfect... I'm always amazed

myself, but she does sacrifice alot of her social life to stay that

way. She knows it is just part of what she must do being a scoliotic.

Her curves are: T1-T6 47 degrees, T6-T12 70 degrees and T12-L4 40

degrees. I have talked to her doctors about pregnancy, birth

etc...they said that it is really something that they can't predict.

Obviously, she will have a better chance of not having her

back " collapse " if she stays in great shape. Who knows, I just try to

take one day at a time. Emotionally, this has been EXTREMELY hard on

her. I just wish that I could take it all away for her. I have posted

extensively on some of the alternative sites... mostly I was trying

to warn other families as to the scam that STRS in Baton Rouge was

pulling off. " Dr. Copes " basically took $26,000.00 from us and

promised that Mikaela would have her spine return to normal if she

followed their protocol. The story that I posted is incredibly long,

if you are interested, I'll give you the link so that you can read

it. Once again, thanks for your support!

In health,

Robin Sandhoff

-

-- In Scoliosis Treatment , Birch <nancyb@l...> wrote:

> Dear Mikeala and her Mom,

>

> I feel as though i should chirrup at this point. I think Mikeala is

doing a

> wonderful job and admire her commitment. I had a severe scoliosis

around

> her age and did much the same as she is - weekly pt, ballet,

swimming,

> exercises twice a day. Even when my curves reached 76 and 65

degrees (I had

> an " s " curve), one could barely tell I had a scoliosis.

>

> What " undid " me and sent me to the operating room was having two

children

> in three years. My spine just went kaput, and surgery was the only

option.

> Still, I didn't have to go through it till I was 32, and while they

were

> still casting people, I did not have to stay in bed for a year!

Techniques

> improve all the time, so I personally don't think waiting is a bad

idea. On

> the other hand, given my experience with the " great crashing spine "

after

> the birth of my second child, you might want discuss what effect

eventual

> pregnancy and childbirth could have on Mikeala's scoliosis.

>

> In the meantime I wish you all the best and congratulate you on your

> courage in following your chosen path.

>

> Best,

> from Italy

Posted April 17, 2004 · April 17, 2004

Hi Robin,

In reading your post, you sound like any mother whose child is going through

a difficult life. My children, thankfully, were healthy but the same

feelings were seen in my mother for both myself and my cerebral palsy

brother. I have three other brothers who did not have the extensive health

problems so my mother had some break that way. She is now in her 80's and

still feels bad for myself and my one brother. I believe that he and I have

stronger personalities and more compastion because of our health situations.

I'm glad you are willing to share our experiences with some of these

" Alternative " doctors, who take unfair advantage of people in difficult

circumstances and " scam " them. I believe this is the place for sharing both

the good and the bad. How else can we learn? Each situation is unique and

what works for one doesn't necesarily work for another but we would all like

to be aware of the scams and avoid those.

Llweyn in BC

Re: New member with tons of info on

non-surgical treatments for scoliosi