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?