Periacetabular Osteotomy - replacement or resurface or PAO?

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

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.

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

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?

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

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

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.

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.

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!

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

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.

Good Luck!
Nicole