Hi Brian,
I very much agree with you. Dr. Schoenecker, our orthopedic surgeon, is an older doctor, well-established, and very respected in his field - specializes in pediatric hip conditions.
He is treating our 8-year old son, who is approaching the end of the age spectrum that has a good outcome with this disease. And our Doc was very firm about treating him with NON-surgical containment. He said that he could cut his bones and pin them all day long (his is a surgeon, he reminded us) and have him out of that wheelchair in 6 months. But...he has seen a lot of Perthes cases and has had much more success with casting and bracing or repeated casting.
He said that younger doctors are afraid of doing it this way, because they don't think parents will comply with the brace and wheelchair. He feels that doctors use surgical containment to appease the parents in many cases, although I do know an 11-year old that was treated by this same Doc and had to have a pelvic osteotomy because of the severity of his disease. So he is not completely one-sided.
After the tenotomy and cast, he put Adam in a petrie-type brace for 2 years. He is so pleased with his progress and is offering additional freedoms and lifting of restrictions with each visit. And with each visit, he brings in a whole group of young doctors to stare at Adam's ROM exam and X-rays and lectures them all on non-surgical containment.
As many have said here before, every case is different. But if I were new to this again, I would ask for all of my options.
And don't be afraid of the brace and the wheelchair, if it is an option for you. It is now second nature to us. I dropped Adam off at camp today, and he hopped out of his wheelchair and crutched with his Petrie brace on (what a sight!) to go play wiffleball.
Thanks, Brian, for encouraging our families to ask a lot of questions and seek the most qualified physicians!
Lisa/Adam 8
Brian <bbaker904@...
Hi everyone. I don't mean to put anyone down about surgeries, but I
want to pass on a question you always should ask a doctor with a
child under 7 years old. Ask this: Is there anything that can be
done if we don't want surgery? The reason I say that is this.
I've done a lot of look ups about perthes. If any of you have every
watched Scrubs on TV, it's a funny show but there is some truth to
it. There are 2 types of doctors. Medical doctors that specialize in
fields with medical approaches and studies. There are also surgeons.
They specialize in fields doing surgery. There is a big difference.
One looks at multiple angles and research before acting, and the
other wants to repair by the hands, like an automobile re-builder.
Sorry if that isn't a good comparison, but it's the best way I can
put it. If you go to an orthopedic surgeon, he is looking to repair
the problem with a knife. If you go to a general orthopedist, like
Dr Paley and Dr Standard, you get a more open look at options. There
was an xray posted for opinions on the web were a doctor wanted
advise on his patient. The child was 6 with perthes in one hip and
an arthrogram was done. The doctor said the child was a B hip. After
looking at the xray, one doctor(surgeon) wrote that the hip was a C
an a osteotomy was needed. The second doctor wrote, the hip was an A
and why did you do and arthrogram. He was a main name perthes
doctor. Finally the instructor wrote he agreed the hip was an A, the
arthrogram was nice but agreed no treatment was need. So with 3
doctors, you get 3 opinions. I saw the xray, the child was in stage
1 and had less than 50% involvement. The hip was an A and I agreed
with the perthes doctor. He was Dr McCormich from Atlanta Scottish
Rite by the way.
Femoral osteotomies have a 87% success rate with perthes. That is
an estimated figure based on different studies I've read. But all
in all, 1 in 10 won't have good results long term. The studies based
on braces was close to the same. Keep in mind these studies were
done for all ages too. Both studies were better than not doing
nothing in children under 6 by 10%.
The study that had the highest good outcomes and better follow ups
was casting long term, 97%. This however was put down years ago
because it was said casting was considered cruel and unusual. Not
what you would expect in a medical study. Other main name doctors
are seeing the benefit of the casting a bracing and some are
returning to the practice of it. It is found that casting doesn't
need to be a long and drawn out as before. There is a window that
lasts 6-10 months were it works the best. From just prior to the end
of fragmentation until the hip get stronger with cartilage build up.
When your dealing with a condition that lasts 2 years or more,
what's the gain by permanently changing the hip if there is a choice
available. Keep in mind that due to late diagnosis or condition the
choice may not be there. But it doesn't hurt to ask.
We have too many surgeons, jumping the gun because this procedure
worked for this kid so all kids with perthes need it. I just hope
some of you understand were I come from on this. I hate it to the
bone, when I see that post, but I don't know the circumstances. It
just breaks my heart. Brian