Today my mother and I drove up to Boston to meet Dr. Millis and discuss my potential surgery. I say "potential" because it still was not guaranteed that I was an appropriate candidate for the PAO surgery, much less that I would have the renowned Dr. Millis as my surgeon. If Dr. Millis felt I was not a good candidate for a PAO, or if he opted not to take me as a patient, I would have been frustratingly back at square one. So my biggest concern heading into this appointment was getting everything nailed down, and most importantly, getting a surgery date inked into the calendar.
Prior to meeting Dr. Millis, I had to get additional X-ray and MRI imaging at the Children's Hospital's Waltham facility. I must admit that getting procedures done at a children's hospital is really kind of wonderful. For example, there is fun, whimsical decor in the waiting room, including fish tanks! I remember fish tanks in my pediatrician's waiting room when I was six years old. Nothing bad can happen to you in a place with fish tanks, right?
Additionally, the staff at children's hospitals are cheerful, patient and comforting. My X-ray tech was joking around, making sure I was comfortable and breathing, etc. I'm not particularly scared of X-rays but there is something to be said for treating sick and hurting adults like they are frightened children. Maybe all our hospitals should be like children's hospitals.
At the very least hospitals should always have a fun dragonfly mobile above the table when they try to inject contrast medium into you for your MRI. It was at least somewhat soothing to glare at the swaying, cartoonish insects, clenching my teeth as two nurses tried their hands at finding and piercing a vein in my superhero body. Apparently I have such good elasticity in my veins that they flatten out or roll away at the sight of a needle. Elastigirl indeed. Finally after five excruciating tries they got the contrast medium injected and so into the clanging doughnut I went.
After my Innerspace photo shoot at Waltham, we headed over to Boston to meet Dr. Millis at the Children's Hospital's main campus in Boston. While waiting for the doctor, I filled out a couple of questionnaires about my hip pain. It was a bit tough to know how to answer the questions since I wasn't in a lot of pain today. I am not usually in a lot of pain, but mostly that is because I limit my activities so much and stay off my feet if I begin to have any pain. This has especially been the case in the last six months or so, when my pain threshold has dropped such that I have had to carefully mete out my hip usage to keep myself pain-free most of the time.
My mother was concerned I was downplaying my pain but I really was not. I know the threat of severe pain is always there but I try to keep myself out of pain by preventing it rather than treating it once it has started. So for me the real pain is in how limited my physical activity has become in my efforts to avoid aggravating my hips.
That is not to say I have not had severe hip pain in the last couple of months: there are several times I remember being almost unable to walk and gasping in pain when I'd "overdone it". I put that term in quotes because overdoing it in my current state is doing activities that normally would be completely manageable for someone without my hip condition. Things like a tennis match or a long walk of a few miles. A healthy 29-year-old should not be felled by an afternoon at the museum.
I was still filling out the questionnaires when the doctor came in with his associate Dr. Brighton. Dr. Millis is an affable man with an enthusiastic air. He took a conservative approach, initially saying "if we decide this surgery is right for you" and similar flirty statements. Needless to say, this was annoying. I wanted him to say "OK, you need this surgery, and I'm doing it for you. Now let's talk logistics." But I guess he wanted to ease into it. Or maybe most new potential patients are not as decided, determined and dispassionate as I am about this whole thing. I've accepted the diagnosis and the need for the surgeries. Now I just want to get them over with. Right, recover; left, recover; done.
I truly think Dr. Millis had decided I was a good PAO candidate and that he was going to take me as a patient before he entered the room today, maybe even before I got to Boston and had the second set of images taken. I don't think he would have even had me come up to Boston if he hadn't, and I seriously doubt he would have spent so much time with me during the appointment if he was unsure.
The doctor watched me walk in various ways: normal, on tip toe, on my heels. He did some range of motion tests on both hips. I have no gait problems and have very good range of motion in both hips. We looked at the images from Waltham and the images I'd taken in October at HSS. The doctor drew the various angles on the X-rays to show where my socket edge was and where a normal socket edge should be. In the false profile view, it was even clearer that my sockets were far too shallow on both hips.
In the images, there doesn't seem to be that big a difference between my left and right hips, so it is a bit odd that the right usually hurts so much more. When I was off my right leg last summer, on crutches for a right knee injury, my left leg took all the weight and hurt more than it ever had before. So it is clear that my left leg has the same capacity for pain as the right. I guess the right is just quicker to pain because of the chronic labral tear and so I end up getting off my feet before the left hip even starts to hurt.
Dr. Millis confirmed that I am going to have to have the left hip done pretty soon after the right PAO. It will depend on the healing rate for the right hip, but it could be as soon as three months after the first surgery. That is faster than I expected, but honestly, the more I can compress this disability and recovery period, the better it is.
"Can we talk dates?" I asked, finally. Dr. Millis got his scheduling coordinator on the phone and offered me February 9. One month away! That was a bit too soon, even for me; I need to coordinate with work and other commitments. I took the next available slot, which was March 16. So there it is. Right hip PAO in two months. Giddy up!
6 years ago
I too was at HSS in October and up at Waltham in January. Very curious to hear any concerns you may have going in...
ReplyDeleteDr. Millis is my long-term doctor and I, too, have bilateral hip dysplasia.
ReplyDeleteI have also had 7 surgeries, most on my left hip, which is the worse hip.
I stumbled upon your website in the middle of the night.
I'm originally from my NYC, but have had surgeries in NYC, Boston, and Bern, Switzerland. I currently live in Germany and always seek to find people with similar experiences since I didn't have any growing up.
I was at HSS in NYC, which led me to Prof. Ganz in Switzerland...
I would love to offer my expertise since I was diagnosed before the age of 10 and have always been looking for similar people.
fromneo@me.com
What doctor is good to see for this in NYC?
ReplyDeleteAnonymous, I was first diagnosed at the Hospital for Special Surgery in NYC by Dr. Edwin Su. He doesn't perform PAO surgery but I know there is a doctor at HSS who does: Dr. Buly. I don't know anything about Dr. Buly though. Good luck!
ReplyDeleteI too have bi-lateral hip dysplasia. It tuck 2 years to diagnose my terrible debilitating pain in my legs! Most days I am unable to walk and do "simple" chores. I saw Dr Sink at HSS. Because I am considered "young" at 34 he was the guy to see. I guess they match you with Doc's according to your age! I am scared to death about the PAO surgery... I am a mother of 2 young children... how do you have a serious surgery with kids that need their mother all the time???? Calling Dr Millis... to make an appt for 2nd opinion! calling right now!
ReplyDeleteI had hip surgery done by him in october 2011 now I am running jumping and doing everything I did before
ReplyDeleteCould you please provide some details about your age, your problem, your level of activity prior to surgery and whatever else might be relevant? I am considering this surgery for a 15 year old athletic girl. Many thanks
ReplyDelete@anonymous - I was 29 when diagnosed; my activity level was high (and had been throughout: I played HS and college sports and stayed active in sports leagues after college).
DeleteThank you for your blog!! I feel relieved each time I read it... I'm in a terrible pain now, but I know that there's a way to get through this... Are you feeling good?
ReplyDelete@anonymous - I am feeling great these days! I'm glad that my blog can help you feel better - I hope you get fixed up soon so you can leave the painful days behind you. Good luck!
DeleteI too have seen Dr. Kelly and Dr. Sink recently. I have an appointment next week with Dr. Su to discuss hip replacement (s)- I am 24 years old. I may get a second opinion with Dr. Mike Millis in Boston or Dr. Ira Zaltz in Detroit as Dr. Kelly recommended both of them for a PAO second opinion. I have 'acquired hip dysplasia' ie-i was not born with it; but rather my arthroscopic hip surgeon 'gave' me dysplasia in 2011 when he took off too much bone during my right hip FAI surgery. I still have FAI on my left hip because my first surgeon didn't take enough bone off during my left hip arthroscopic FAI surgery.
ReplyDeleteDr Millis is the guy to see, no question. He's a straight shooter and will provide the best diagnosis. The decision to fix is always yours, but it's best to have the best information to move forward. I had PAI in 2007 and hip is great.
DeleteI just stumbled across this blog and I am grateful I did. I just had the PAO with Dr. Millis in October (2013) and am still in recovery period. I was lucky at 35 to still be in the age bracket to be treated at the Children's Hospitals for this, but the left will be at another hospital he is associated with. Of all the doctors I have ever had- he is by far one of the most incredible. An old-school doc, with quite the energy level and air of authority around the hospital (without being egotistical, as so many highly-specialized docs can be)- he spent way more than the typical doctor would at every appointment, even holding my legs during x-rays, and walking us out of the hospital. This is a doctor who will go out of his way for you- and make sure everyone else will, too. The hospital staff jokes about him, but reveres him- and as one nurse told me- "we wouldnt let any other doctor get away with half of what we let Doctor Millis get away with because he is just so great." If you have hip issues and you are considering a PAO surgery- he is the guy to go to, at the very least for his opinion. Although I am still in recovery, and not yet sure what the results will bring- and we have a few more surgeries to go, I can safely say that I have not regretted going out of state to be his patient- not for a moment. He emails us once a week to check-in on us, and is very good about conferring with local doctors so that we don't have to make the trip back and forth to Mass for checkups. A brilliant man, a wonderful doctor, and his bedside manner definitely outshines any other doc we have ever seen.
ReplyDeleteIf this is a 'real' patient, please contact me.
ReplyDeletemmtmonica4@gmail.com Thanks. Monica Towne
Monica: I am real. You can email me directly at annika.k.martin@gmail.com and I would be glad to talk to you about my PAO experience with Dr Millis.
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