Re: My experience with Asthma/Milwaukee Brace - 70's

November 3, 2008

Dear Sara,

We are new to all of this stuff with scoliosis as well, but a helpful forum

I've found is at the national scoliosis foundation. Just google " National

Scoliosis Forum " and you should be directed to that site.

That site was very helpful in helping me locate a surgeon for my child.

I've had to do some searching on the site for information on surgery and

things, but for the most part, the people there are very supportive and

informative. They share the same feelings, which helps a lot.

For information on surgeries and other things related to scoliosis, you can

also check out scoliosisnutty.com. *Very* comprehensive site! Run by a

lady who has scoliosis.

The biggest thing to remember (and that I've found out) is that you are not

in this alone. Someone, somewhere, can direct you to the information that

you are looking for.

My experience with Asthma/Milwaukee Brace -

70's

My Scoliosis was diagnosed when I was probably 13. I was in 9th grade. I

had - had asthma all my life and about the same time my asthma took a turn

for the worse. I was also diagnosed with a chronic lung infection and was in

and out of the hospital every month. I was on all kinds of medicine

including prednisone which had terrible side effects (still does)!

One doctor wanted to operate for the scoliosis but thankfully my parents

didn't do that as he turned out to be a quack. The experts in Boston said no

as I could not lay flat. I had to sleep nearly sitting up and had PT daily

to literally bang the mucus out of me. I had terrible coughing fits. The

asthma and infection alone was a nightmare. I didn't go to school at all in

10th grade - had a school supplied tutor at home and it took two years. The

11th grade I went 1/2 days.

So the Milwaukee brace was the alternative. It was a torture chamber for me.

I could't breath and when I had couping fits someone had to help me get out

of it quick as I would choke. I tried to wear as much as possible but the

two medical issues together made it nearly impossible. Not to be gross but I

used to cough up a cup full of mucus every night.

I didn't know until later that my beloved mom - who passed years ago -

thought I had Cystic Fibrosis and they weren't telling her. I had few

friends in my home area (not out and about)but made friends with people who

were in Boston Children's with me. Two of them died from Cystic Fib.

I never thought about dying but never thought of adult hood either.

The scoliosis seemed so unimportant at the time. When last I saw a Dr. for

that - 30 plus years ago - he said it hadn't gotten worse while in the brace

and should stay the same.

My asthma continued to be bad through the 30's but not as bad as in HS. Now

my asthma is well under control but over the years the scoliosis has gotten

very bad. When I see xrays it just makes me cringe to look. A big bad ssss.

I do have pain and that is worse all the time as well. My left hip and leg

are bothering me a lot. I have had pneumonia twice this year and they think

the scoliosis combined with my already compromised lungs are the reason.

I am terrified as I said in previous postings - about surgery. Also I don't

even no where to begin about Drs. and surgery. I have conflicting reports

about the doctors in Boston.

Thank you for your support and any further advice.

Sara

November 3, 2008

I have belonged to this group for about 6 mos. and found the support great. Had

scoliosis for 40 years and lived with and it ignored it. Just can't be ignored

anymore. I have looked on a lot of sites but not heard of the scoliosis nutty.

Thank you!!!!

From: adorote1 <adorote1@...>

Subject: Re: My experience with Asthma/Milwaukee Brace -