Perthese Disease
From: Jean Long (creative@enter.net)
Fri Jun 28 15:21:44 2002
Emma,
I had Perthese Disease as a child and was crippled for 3 years, never healed
though, just the best it would ever get.
I had my hip replaced in 1994 at the age of 45. I also had it revised
(re-replaced 2 times in 2000, same hip) due to suspected infection. It
isn't it good shape now, excessive bone loss. I will now need a cadaver if
any work has to be done on it in the future which is highly likely unless I
die young.
They wouldn't replace mine either until it was bone on bone and it wouldn't
let me step on it anymore.
I saved having the operation for several years by going to a chiropractor
who aligned my hips weekly.
After it was bone on bone he couldn't help anymore and at last appointment I
had screamed in pain, at which time he said it was beyond his help now.
Try to save it as long as you can, the replacement is "nothing" like your
own.
I didn't have the good results I expected and know of others that had it
done due to Perthese Disease who also had failed hip replacements. Maybe you
will be one of the lucky one's, never know though.
This site is really for people who suffer from adhesions (scar tissue),
usually pelvic and abdominal (which I also have).
Some have hip or leg pain but it isn't from their hip...... it is from their
abdominal/pelvic adhesions.
You just lucked out that I happened to be here to see your post and answer
you.
There is a site http://members.tripod.com/totallyhip1/index1.htm for people
who have or are getting hip replacements.
Scroll down and go to Discussion Board #1 which is the most widely used
board. I find most of the people on there have had "successful" hip
replacements though so I didn't relate as well to them, however the are very
nice and helpful.
This address may take you directly to Discussion Board #1
http://members.tripod.com/totallyhip1/index1.htm.
If you go to Discussion Board #2 at Delpi, which is also at
http://www.totallyhip.org there are also some people who had Perthese Disease.
Allot of the people with on-going problems are on that one, but it's not as
widely used.
There is also a support group for Perthese Disease but I found it to be more
for parents of kids with Perthese.
I forget what the web address is, but I think I found it by searching for
Legg/Calf Perthese Disease.
I am very busy right now so I don't have the time to research but wanted to
get back to you on this since no-one else would be able to on here.
I am presently on Oxycontin for all of my pain problems, allot more than the
hip.
A heating pad will also help your hip.
Feel free to email me personally if you need to talk at creative@enter.net.
Good Luck,
P.S. That was my post you found on here.
JEAN (from PA)
"You can't spend the rest of your life letting someone else tell you how you
feel,
or tell you that you just see things wrong" - Dr. Phillip McGraw, Ph.D.
-----Original Message-----
From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]On Behalf
Of Emma
Sent: Friday, June 28, 2002 2:43 PM
To: Multiple recipients of list ADHESIONS
Subject: Re: Millie-Broken bones !!!!
Hello! I came across this site as I was searching for any information
about Perthese disease...or, more particularly adults with hip problems
who suffered with perthese disease as a child. Doctors are reluctant to
give full hip-replacements to patients of 30 years old (because they
don't last particularly well on active, young people). Are there any
alternatives? How does a thirty year old cope with a very painful,
mis-shaped, arthritic hipjoint? Any thoughts or ideas?
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