Periacetabular Osteotomy - replacement or resurface or PAO? Posted: 11-13-07 16:30pm
Anyone out there have this done? Anyone
with small children?
I am 33 years old with bilateral hip
dysplasia. The doctors down here want to
do replacement or resurface. I am going to
a specialist who does PAO - but recovery
time scares me. I have a 3 year old and a
7 month old.
|
mydejavooo
New User, Becoming EHEALTHy
Joined: 18 Dec 2007 Posts: 2
Pao Disaster! Posted: 12-18-07 05:02am
Hello. I was looking around online and
came across this forum, and see that you
are in the same boat that my wife was a
little over 1 year ago. She was born with
hip dysplasia and it was not common enough
of a condition that they could fix when
she was younger. They told her that she
would have problems when she hit 30 years
of age, and it was at that exact age that
she had problems. Let me tell you a
little bit of the horror story that we are
still going through in connection with
this surgery that was performed.
About 1 1/2 years ago, my wife was having
hip problems that turned out to be a form
of arthritis associated with the hip
dysplasia. She saw several doctors, and
they all shyed away from telling her what
could be done to correct the problem. She
was living in a lot of pain, and we were
finally referred to a prominent physician
in Salt Lake City that performs PAO
surgeries. They looked at her hips and
told her that she was not a good candidate
for the hip replacement surgery, as she
was too young. They said that she would
have to have the surgery done several
times in her lifetime, and so they
declined to do that surgery. The went
forward with the PAO last September. She
was in the hospital for almost a week,
recovering. The surgery has left her with
many things....a 10 inch long scar on her
hip and groin....numbness that goes down
her leg that is very uncomfortable for
her....and an addiction to pain meds. She
has had complications with the surgery and
the pain is still as intense as it ever
was, and she even says that the pain is
more severe than it ever was prior to the
operation. She is up all night, has
chronic pain, and has a hard time getting
around on occasion. Sitting for any
period of time is aweful, and I have to
endure seeing her cry herself to sleep at
nights. It's terrible because there is
not a thing I can do for her except
provide moral support, which doesn't help
with the pain.
We have seen the doctor that performed the
surgery and he said that everything looks
normal, and even alluded to the fact that
the pain might be in her head. It is most
definitely NOT in her head. I live with
her, and I know. The doctors' answer to
everything is "cortisone shots!" If you
have never had one, it's where they inject
a HUGE needle into your hip, in an effort
to relieve the pain. She has had 4 within
1 years time, and none have helped in the
least. In the last visit to the doctor, I
even advised him that I was not too sure I
agreed with her getting another shot, as
the prior 3 never did a thing for her. He
gave her the shot anyways. We drove 250
miles, each way, all for nothing. He does
not have the slightest clue as to what is
going on, and I'm scared for my wife.
Oh, I almost forgot, she had seen local
doctors here...including an orthopedic
surgeon, and they told her that something
was not right, and there was even a period
of time that they told her that she had an
infection in her blood from the
complications, yet the original doctor
stated that the local doctors knew
nothing, and that there was no infection.
It's pretty scary when you have doctors
arguing over something like this.
So here we are today, with my wife in
agony, and now her left hip is going out.
My wife is rightfully scared to death of
doctors, as she feels they have hacked her
up and got her addicted to pain meds.
Even the local doctor here actually
admitted that "we've done this to you".
How scary is that?? Our local doctor
tried to get a referral to the Mayo Clinic
in Arizona, but there is a 6-7 month
waiting list, and that's just for an
appointment. We would still have to drive
south approximately 800 miles, and take
the time off of work to do this. And, are
you ready for this??....between me and my
wife, we have 4 kids all under the age of
6!! Actually, it's 6, 5, 5, and 3. Sorta
makes it hard for my wife to take it easy
around the house.
Basically, at this point we are completely
at a loss as to what we should do. I'm
sure that doctors are scared off by her
issues, and I'm not sure that another
doctor would be anxious to go back in for
additional surgeries on a hip that was
operated on by another doctor. What's
also frightening is that our original
doctor told us that they would consider
"experimental" surgeries as needed. This
would be things like removing the screws
in her hip and possibly cutting the
tendons that run along the side of the
bursa. It only sounds like it's going
from bad to worse. I'm at my wits end.
So....If you are considering this
operation...get at LEAST 3 opinions!! We
have heard of success stories, but we are
not experiencing that ourselves. If you,
or ANYONE has ANY advice for us at this
point, please email me. We don't know if
we should seek legal council, as the
original doctor is not providing the level
of care that one should expect for this
caliber of surgery. He ignores us, and we
are just frustrated beyond belief. My
wife is concerned that she will have major
health issues from the methadone,
oxycotin, and soma that she is on. I
only want the best for her, and need any
advice we can get. PLEASE HELP!!!
PLEASE, PLEASE, PLEASE!!!!!!
Trevor
|
strawberi
Supporter
Joined: 10 Dec 2007 Posts: 42 Location: Manila, Philippines
Posted: 12-18-07 05:38am
Hi, I'm a med student from the
Philippines. I know it's such a long way
from home, but I do know some really good
orthopedic surgeons who also trained in
the US for some time. It won't be as
expensive but you will have to take time
off work and travel all the way, 14 hours
at least.
As Trevor said, always get a 2nd and even
a 3rd opinion when having complicated
surgeries done.
Trevor, I think you should go see a
lawyer. Maybe you have enough to get the
doctor for negligence or something. I'm
going to be a doctor in a few years and it
is disappointing to hear stories like
yours. Your wife may need to have another
surgery though if you really want the pain
gone. Finding the right surgeon will be
the tricky part. You're right about other
doctors being anxious to do surgery on
someone who was operated on by another
doctor. Countries like the Philippines
and Singapore are globally competitive
when it comes to medicine. Maybe you can
consider looking for surgeons here. I
study at University of Santo Tomas, and we
have the top doctors in the country in our
university hospital, most of them also
trained in the US, Germany or the UK. If
you are interested, I can help. I also
watch Oprah and sometimes they have shows
on medical malpractice / surgeries gone
wrong. If the lawyer route can't help,
being on national tv carries a lot of
weight too.
|
bethinfl
New User, Becoming EHEALTHy
Joined: 12 Oct 2007 Posts: 14 Location: FL,
Pao Posted: 12-18-07 12:51pm
Trevor,
I am sorry to hear about your wife's
experience.
I have gone to several local Dr's - who
wanted to do replacment or resurface. I
did lots of research online about PAO. I
know that there a few doctors who perform
the surgery. Was her Dr one of the well
known ones?
I have decided to go ahead with PAO - with
Dr. Millis in Boston. He was highly
recommended and has done over 800 PAO's in
the past 15 years or so. I have been in
contact with several of his patients and
he emails and calls me back. I feel
comfortable with him - even though he
would not make any guarantees that I would
be totally pain free after the surgery. He
also said I may need a femoral osteotomy
down the road as well. (Did your wife have
PAO and a femoral osteotomy?) Although no
gurantees were made- he did say that
because of the damage already done to my
hip (caused by dysplasia, previous hip
scope and osteoarthritis) if I wait any
longer, a replacement would be my only
option -that PAO would not work.
I also am already thinking about my other
hip - as it will need to be done as well.
As for the cortizone shots - I HAVE had
them and they are extremely painful! The
last 2 local doctors I went to wanted to
give them to me and I told them that I
would rather give birth!!! I simply said
no, that they hurt and they don't relieve
any pain. I have also tried
anti-inflammotories, arthritis tylenol,
glucosamine...... Nothing helps. When I
saw Millis in Boston, he told me that I
have a "mechanical" problem with my hip
(the dysplasia) and none of those things
will help.
I know that I needed to find a doctor that
specializes not only in hips, but in
dysplasia and the PAO surgery.
You could always email or contact another
PAO surgeon with your wife's story and see
what they say. The BIG names for PAO's
that I have found are: Dr. Millis
(Boston), Dr. Murphy (Boston), Dr.
Trousedale( MN), Dr. Matta (CA), Dr. Diab
(CA), Dr. Zaltz (MI) - to name a few.
It is a shame that the doctor does not
respond to you or your wife. I would
contact another prominent PAO surgeon and
ask for help.
What I found with Dr. Millis is - he does
this for the love of medicine and helping
people - not money, status, fame.... The
first time I emailed him asking if he
would see me - he responded that night.
When he had to change my appt time - he
called me himself, didn't have a secretary
call. When I mentioned a previous patient
of his (had surgery 4 years ago) - he knew
exactly who she was. It is a shame that
not all doctors are like this. Hope this
helps a little.
Tell your wife I feel for her.
I have been living with hip pain for about
10 years. Finally diagnosed at age 28 and
had a hip scope which did nothing. If this
surgery had been mentioned to me then - I
would have had it done before kids! Now I
have to leave my baby and 3 year old and
spend 1 week in the hospital in Boston -
then come home and not be able to do
anything with him, hold them, feed them,
give them baths..... They are so young -
they will not understand why mommy can't
walk!
My saving grace is that both my parents
and husbands parents are less than 2 miles
away. I hope you have help near you.
Beth
|
hippiemom71
New User, Becoming EHEALTHy
Joined: 20 Jan 2008 Posts: 1
hippiemom71 Posted: 01-20-08 21:38pm
I am scheduled for surgery in April and
would love to talk to someone who could
help me get my home in order. I also have
young children and would love to have as
much ready as I can. What types of
equipment will I need? How long were you
in bed? How intense was the pain--can I do
without so much pain meds?
|
Liquidnice
New User, Becoming EHEALTHy
Joined: 12 Feb 2008 Posts: 1
PAO Disaster Posted: 02-12-08 04:20am
Trevor,
I am sorry to hear about all of the
troubles that you and your family are
going through. I, myself am turning 31 in
a couple of days and scheduled for a PAO
on Feb 25th. with DR. Downer in WA. He
did a fellowship in Switzerland with Dr
Ganz, so I have had a lot of faith so far,
however, I am beginning to rethink this
though after reading your post. I have
already had one osteotomy at the age of 8
mo. I was born with hip displasia, and
over the years the arthritis and bone
deterioration have caught up with me. I
have had many shots including 4
flouroscopic injections. Only the first
one lasted about 8 mo. Than the next
lasted about 3 mo., and then next only a
couple of weeks. One of my Dr.'s was nice
enough to give me one in the bursitis in
mt hip right before Christmas, and that
has lasted so far for a while. I have
been told the same thing about being too
young for a hip replacement, so the PAO
was my last hope, due to the fact that if
nothing was done, I would have to have a
hip replacement in TWO yrs max anyway. We
felt that in order to prolong the hip
replacement as long as possible, the PAO
was the answer. I have been told that if
the pain was still there after the PAO, I
could get a hip replacement and that would
take care of all the pain. Has your wife
considered just going ahead and getting a
total hip replacement? This might be the
best thing for her. That is pretty much
my plan. I am not sure how long the
recovery is going to take, and I know it
will not be easy, however, it is that
hope...I can only pray right now, that God
leads me to make the right decision. I
will pray for your wife and family as
well. God Bless.
Melissa
|
bethinfl
New User, Becoming EHEALTHy
Joined: 12 Oct 2007 Posts: 14 Location: FL,
RPAO Posted: 02-17-08 21:10pm
I had RPAO Jan 25th with Dr Millis in
Boston. So far my recovery is going well -
1/3 body weight bearing right now (3 weeks
out). I have had lots of help with the
little ones- between my husband, my
parents and in-laws - someone is always on
duty (for the kids and me). I needed 24
care the first week home - but am now able
to "take care of myself" for the most
part. I still haven't driven yet - but
plan on trying this week. The pain level
is much lower than I expected. Most of my
pain is around the incision - which is
healing nicely. All in all - I am feeling
great with not a lot of pain. I am hoping
for a quick recovery - hoping to be off
crutches by week 7 or 8.
For the home I got a wheelchair (which I
don't really use anymore - except when we
all go for a walk), walker, crutches and
elevated toilet chair (which I also use in
the shower).
I am able to do my stairs by myself (with
crutches) and do it several times a day.
Beth
|
Tinycfamily23
New User, Becoming EHEALTHy
Joined: 21 Feb 2008 Posts: 1
Posted: 02-21-08 07:22am
Hi there, was looking for information on
POA's. I had a right hip poa in Dec and an
on the road to recovery. I am 23. I was in
hospital for 5 Days and then went to stay
with my parents as i needed alot of help
but was moving around on crutches. My
daughter has just turned 2. Im on week 10
now and still on crutches and still can
not drive but one thing I know is vital is
the Physiotherapy you recieve.
Hydrotherapy was a great help in the early
days.
The first few days after surgery was awful
but i have nearly forgotten about all that
pain and am starting to enjoy life again.
As for what you might need in the home I
have a shower seat, wheelchair for going
out with the family, something to help me
put my own socks on, a special purching
stool for preparing dinner in the kitchen,
a trolly to move food and drink around the
house and a foot rest to elevate my feel
when on the sofa.
I too have been told that I WILL need a
total hip replacement but this should save
my own hips for 10 - 20 years. My daughter
was 2 this Jan and really adapted to mummy
not walking. She pushes the trolley around
to help with dinner times and brings me my
crutches when she wants me to get up and
get something with her. She has been a
star even though she is at a hard age
anyway. I am now full time carer to her on
my own but needed family help for at least
the first 6 weeks.
If I was offered this op again - i would
grab the chance with both hands - It has
really reduced the hip pain and made me
feel so much better. This will not help
you but my surgeon was performed in
Coventry Warwickshire England by a
professor. He is such a good consultant.
For anyone having this done - you must
weigh up the pros and cons - I too have
suffered slight numbness in my thigh but
this should go within a year - the nerves
need to repair themselves - its a huge op!
I was in theatre for 7 hours and in
recovery for 2 1/2 hours. Its just a
relief after nearly 10 years of seeing
Doctors and physiotherapists.
Dr Ganz i believe is the man who pioneered
the type of pao i received as it was a
Ganz Approach PAO I had done.
Good luck to all that are going to have
this done - I just wanted to log a good
experience but am very sorry to hear that
not all go so smoothly.
|
hotshot
New User, Becoming EHEALTHy
Joined: 11 Dec 2007 Posts: 5 Location: rowlett, tx U.S.
RPAO Posted: 02-25-08 10:55am
Have they figured out what the problem
was? It sounds to me that the doctor that
did your surgery just wanted to get you in
and out of there as quickly as possible.
There are some very good orthopaedic
doctors in the Dallas Fort Worth area if
your willing to fly out to Texas. My ortho
doc is Dr. George Zoys and he works at
Baylor Medical Center of Garland. He's a
nice guy. Just a thought. I hope you get
to feeling better.
|
tayamaria
New User, Becoming EHEALTHy
Joined: 29 Feb 2008 Posts: 1
5 weeks post op Posted: 02-29-08 15:16pm
Hi, I am 5 weeks post op. I stopped taking
painkillers in the daytime after about 2
weeks in the day time, but nighttimes are
still bad...not with my hip, but my back!
I am and have been in agony with back
pain, at night whilst lying out flat, it
locks after about 1hr and is
excrutiating....my husband has to help me
up. Hip is healing well however...just
didn't expect sore hands and wrists
(crutches) and really bad back. Hoping
that there is light at the end of the
tunnel and that it will be worth it in the
end!
|
umbrellasfolding
New User, Becoming EHEALTHy
Joined: 10 Apr 2008 Posts: 2
Excellent PAO Posted: 04-10-08 14:44pm
There's a lot of scary stuff on this forum
so I wanted to share a success story about
a PAO because they don't always turn out
badly!!
I was diagnosed with bilateral hip
dysplasia when I was 16 after years of
pain...knew nothing about it before this
point. I had my first PAO that year with
excellent results. I was in the hospital
for four days, released, and then off pain
meds at about a week maybe a week and a
half post-op. I got around on crutches
only touchdown weight bearing for about
six weeks, used one crutch for another six
weeks, and then was able to walk normally.
I returned to playing soccer at six
months post op and had little to no pain
(something that hadn't happened in 5
years!)
My second surgery was three years later,
with a different surgeon (my first surgeon
moved) and I have had the same excellent
results. Of course this is an intense
surgery and recovery is hard and requires
persistance but in my opinion it is
definitely worth it. I went from not
being able to walk long distances without
limping to not having pain at all
|
nicolejerm
New User, Becoming EHEALTHy
Joined: 06 Aug 2008 Posts: 1
3 months after my PAO Posted: 08-06-08 08:09am
Tomorrow is 3 months after I had my
surgery here in Salt Lake City. After not
being able to walk and confined to a
wheelchair for several months the surgery
has definatley improved my life. I am
still experiancing some pain, but nothing
like it was. I have numbness but that is a
small price to pay for being able to get
around on a cane. I stopped taking pain
meds a month ago, however sometimes i do
have to take a tylenol because there is
some pain. This surgery was well worth it
for me. My family and I had to go through
so much right after, always having to have
the help and the constant pain but that
was healing. I would reccomend this
surgery to anyone who is in the same boat.
Yes you are not pain free and you do have
a scar, but i can get around and my
quality of life has definately improved. I
do need the other side done thank God it
is not as bad and it will be awhile before
i have to go through the surgery again.
But when the time comes I will not
hesitate to have it done nor hesitate to
go back to Dr. Peters.