Anyone here diagnosed LCPD and has had this Hip Resurfacing?

[n2motherhood]

I just joined as I just found this site today and have been reading through it most of today.  After reading all that I have I am wondering if anyone here has been diagnosed with Legg-Calve-Perthes and has had Hip Resurfacing?  Obviously if your wondering what the Heck is Legg-Calve-Perthes then I guess the answer would be no!    I did not know what it was either until my daughter was diagnosed with it at the age of 10.  In the Reader's Digest version I will share with you what it is:  It effects only the hips one or both, it is common more so in boys than girls and it is more common in younger ages such as around age 7.  The older you are the worst it is on the hip joints.  For some unknown reason the blood supply shuts off to the femoral head causing it to slowly die, soften and become somewhat deformed.  At some point the blood supply re-establishes itself in much the same strange way it stopped.  I belong to a site of parent's mostly who have children with this disease, however there are a few adults who have had it.  There are many ways in which to go about treating it with outter devices that are pinned to the inner bone, or surgery and casting.  We went the latter.  She is now 19, she had it in BOTH hips and suffers from arthritis, winters are worse.  She was left having to find a new way to do certain things as her Range of Motion is very limited.  She walks with a gate (limp).  We were told any future surgery would involve needing Total Hip Replacement.  We have looked into it and feel it is not for us as the whole idea of bone removal is a "no go"!  At her young age it would leave her in a wheel chair in her 50's or so give or take a few years.  However we are looking into the Hip Resurfacing as it sounds so much closer to what we would be comfortable with.  What we don't know is if her femoral head is deformed if she would even be a canidate?  And one of the mother's on my LCPD group has a son who has needed Hip Replacement since he was 10, his more serious than my daughters.  But she has been told that the Hip Resurfacing is somewhat like a tire in that it will need to be "retreaded" leaving particles loose in the body cavity.  Has anyone hear that?  We would like to know as much as possible before we make any decisions.  Right now time is on our side, but at some point it won't be.  I would appreciate any response to my questions.
Thank you
N2motherhood

[Pat Walter]

Hello

Welcome to our group.

I don't personally know another child that had Legg-Calve-Perthes, but Kaibree http://www.surfacehippy.info/kaibree2006.php  had  severe protrusio acetabuli   in both hips. She was 14 when she had both hips resurfaced.  She too would have ended up in a wheel chair later in life without hip resurfacing.

I don't know where you live, but I would suggest you ask me or check my list http://www.surfacehippy.info/listofdoctors.php  and use the most experienced hip resurfacing surgeon you can find.  Personally, I would travel far distances to use the very best since your daughter is so young. 

I traveled to Belgium to Dr. De Smet who has done over 2400 hip resurfacings. He is absolutely one of the best in the world.  Some insurance companies will pay for his surgery.  If you have a bi-lat done, it would probably be somewhere about $20,000 for the trip, the medical cost and staying at his rehab facility. 

Several surgeons in the US are also very good. A person near me had her 20 year old son with an special problem in his hip and they took him to Dr. Gross in SC.  He is also one of the very best.

You daughters situation is very critical and you need the best to take care of it so her long term outcome is the best.

I would also suggest that you join the Yahoo Surface Hippy Group  http://health.groups.yahoo.com/group/surfacehippy/  There are over 6000 memebers and some with unusual experience.  I am going to post Waggy's story after I finish in a replay.  He is a 17 year old teenager that dearly wanted a hip resurfacing, but his bones were too soft.  There are many young people with hip problems.   Here is Ionnis story  http://www.surfacehippy.info/ioannis.php

Your daughter is not alone.  You should be so grateful that hip resufacing does exist and I hope that she will be able to receive the surgery. 

Again, I would encourage you to use the most experienced surgeon you can.  Hip resurfacing is a much more technical and demanding surgery than a THR.  When a person has a special case, they need a special surgeon.  Dr. Bose in India is also one of the best and does a large amount of AVN cases.  Similar to what your daughter has - I believe.  He is in India and many, many people I know have traveled to him. Especially people with special problems.  One hip with him costs about $10,000 to $12,000 total including travel, lodging and medical expenses.

Dr. De Smet, Dr. Bose and Dr. Gross will all give you a free consultation.  If you send an email to Drs Bose and De Smet with your daughter's x-rays attached digitally in a .jpg format - you will hear back from them very quickly.  They will continue to talk with you via email until every question you have is ansered.  They are both amazing doctors.

Please let me know if I can help in any other way.  I can also give you Kaibree's Mom's email address if you would like to talk to her.  She is always willing to talk with people and help them.  Email me if you want it    pwalter@surfacehippy.info

Pat in Ohio
3/15/06 LBHR De Smet
 

[Pat Walter]

Here is Waqqy's Story. I post it so you know that your daughter is not the only young person with sevear hip problems.


 I am A 17Year old Teenager who had surgery done from Mr. McMinn on 16thMay , As most of you now know i did go in for a BHR or the BMHR but i was really unfortunate and ended up having the Birmingham Total Hip Replacement << You might not of heard about that so I'll explain ... They basically as you know took the hip of because it was so so soft Mr. McMinn took a video of my hip he literally could put his finger threw my hip anywayz the hip replacement they gave me was same as a resurfacing they gave me the same cup and the same head , So i got a large head THR and I am happy now with the work Mr.McMinn done for me BUT a little accident happend during the surgery my stem just above the knee got a hairline crack so basically the bone moved out its place but the hip stayed as put ... So i was took back in to surgery under 24hours and had 2 plates and 8 screws put in my leg aswell as the new hip [[Thats alot of metal work for a young teenager aint it]] My 2nd operation lasted 6hours excluding the waking up time and my 1st operation lasted 2hours in total including waking up !! So i went threw quite an ordeal , For those people out their that want their hip opearation done in the best possible outcome go to Mr.McMinn you will not find a better surgeon without a doubt he knows his thing 4 sure ... Thats if you can afford it mind you !! The staff were ace aswell, Couldnt get no better. << Well thats my story and now here I am 6weeks Op, I still cant put weight threw my operated leg due to how soft my bones are but my physio thinks i am very capable of doing so , I am going to ring Mr.McMinn's team and ask them due to Mr.McMinn being on holiday until August and I am due to see him 7th August which is a long way away alsoo i want to enjoy my Summer !! The only thing which is bringing me down is that I still cant bend my knee which is a real shame !! But am working on it .. another 20degrees and my knee will be as good as new .. If any1 experienced knee problems after their surgery please let me know your story I love making new friends all the time. My Hip is first class no problem since I had it done , I cant even tell I had anything done 2 it am Pain FREE from my hip.

[Pat Walter]

About Kaibree - post from her Mom's email

A Note About Kaibree

Kaibree's case was a very difficult one and we were prepared that she may have had to have bilateral THR if the resurfacing was not possible. Initially, the first surgeon we saw gave us no option but a THR but was unwilling to do anything until she was older, 18-19 years old. He did not tell us about BHR resurfacing. We sought out a new surgeon. Dr. Powell explored doing other surgery first. He hoped to do a Gantz Periacetabular Osteotomy and femoral rotation and actually consulted with Professor Gantz in Switzerland about Kaibree. This procedure would have given Kaibree some time before BHR. But tests she had showed that she had no cartilage left so the Gantz procedure was out. He then recommended we do the BHR-but we were prepared for a MOM THR if that did not work out. Happily it did! Hopefully, the BHR will last Kaibree a long time - but whatever time she gets from her BHR's is so much better than life in a wheelchair. She will likely get THR's sometime in the future as she is only 14. THR technology is improving all the time. Who knows maybe they will develop the ability to revise BHR's without removing the femoral neck.

Cheers, Cherilyn (Kaibree's mom)