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Hip Universe Support Group HipWomen Support Group for PAO patients My Surgeon at Mayo Clinic PAO overview - patient handout How Stuff Works - PAO
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Oct. 17th, 2009 @ 08:51 pm Looking for Guest Posts
Over the last four years, I've been asked a lot of questions that I can't answer. People will ask about returning to running, recovery with children, and other things that I didn't experience. Rather than let this blog languish as just the record of my experience, I'd like to offer others a place to share their stories. Just comment here and let me know if you'd like to contribute. I will not publish the comments publicly so you can keep as much online anonymity as you'd like.
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cuisine
Sep. 10th, 2009 @ 09:22 pm New Links Added
I've added new links to the top of the page.

Hip Universe is a great resource for all hip issues, including PAO and THR (total hip replacement). Their forum is a wonderful resource for learning about other people's experiences and for asking questions.

HipWomen is a support group geared toward women with CHD/DDH (hip dysplasia).

I've also linked to my surgeon at the Mayo Clinic, as well as two good pages explaining the procedure I had.

If you know of any links I should add, please leave the information in a comment. Thank you!
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cuisine
Jun. 30th, 2009 @ 09:32 am 4 years after PAO
scar4yr

That's what my scar looks like after 4 years. It's certainly not pretty, and it does show both above and below my swimsuit bottoms. I also have some nerve damage that appears to be permanent. It feels like a slightly ticklish, sensitive spot running across the top of my thigh. It has diminished significantly with time, and I hardly notice it now.

But I can run and jog and jump and chase after my little boy, who is now almost two. He runs and skips everywhere and speaks in complete sentences. I'm so glad I had the surgery when I did, because being off my feet now would be tough.

Before surgery, I weighed 150 lb. I had trouble going up stairs, and my hip throbbed when I stood for any length of time. When the surgeons opened me up, they found a ganglion cyst as well as the early osteoarthritis we already knew about. Six months after surgery, I weighed 165 lb. That was my heaviest point. I wasn't working the physical therapy the way I needed to and still had some issues with weakness.

Today, I weigh about 118 lb. I can chase around my son, jog around the neighborhood with my dog, and run up the stairs. At 31, I feel good.
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cuisine
Jun. 9th, 2008 @ 01:02 pm summer again
Well, it's summer again, thank goodness. I got extremely tired of snow this winter. My hip continues to do pretty well, although it is not perfect. I'm most comfortable carrying my son on my right hip, and unfortunately that does make it ache some. Walking around with him at night when he needs soothing can hurt a bit too. But that is to be expected with 18 pounds of squirmy boy holding onto me.

I still haven't made it to the gym, but we are walking every day, sometimes twice a day. My lowest weight was 128 back in February, and now I'm up to 133, so I'm trying to cut back on the cookies, but it's tough!

Here's my little man, who just started to crawl.


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cuisine
Feb. 20th, 2008 @ 03:38 pm missing photos
Just wanted to update that I know all the images on this blog have disappeared. Comcast is "upgrading" their website building services, and in the process they've removed access to everything I have stored there. They've also changed it so that all my images are marked as private, so they don't show up online anymore. As soon as I can resolve that, photos will be put back.
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cuisine
Jan. 4th, 2008 @ 02:47 pm long overdue update
My son is now almost five months old. He ended up spending 40 days in the NICU and came home at 5 lb 4 oz. Last week he weighed 12 lb 9 oz. He rolls over from tummy to back, holds his head up, blows bubbles, smiles and coos and laughs, and loves his bath. Right around his due date he even finally learned how to nurse (I'd been warned it probably wouldn't happen), and was exclusively breastfed until I went back to work after Thanksgiving. Now I pump and he gets bottles during the day. He has already been sick once, with bronchiolitis he caught during his first week in daycare (of course), but breathing treatments helped clear that up. Aside from being a bit small for his age and his continuing issues with acid reflux (he takes Prevacid), he is a pretty normal kid.



As for Mama, between not gaining much during pregnancy, pumping and nursing, and giving up dairy because it upset his stomach, I am now down to 130 pounds. I haven't been at this weight since my wedding six years ago. I feel pretty good, though I wish I could get back to the gym. I haven't been there since I was put on bedrest in July. I do still have days where my hip is stiff, and in the fall sometimes it would ache when we took walks in the cold. But it is still miles better than it was pre-surgery. I will try to see my local OS at Illinois Bone and Joint this spring and see how it looks on x-ray.
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cuisine
Sep. 11th, 2007 @ 03:06 pm Quick update
After one month in the Special Care nursery, my son now weighs 4 lb 9 oz and is eating more than half his food through a bottle rather than the tube. We hope he'll be home in about two weeks. I've recovered quite well from surgery and feel a bit tired but generally fine.

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cuisine
Aug. 16th, 2007 @ 02:04 pm well, that was unexpected...
Well, Sunday I wasn't feeling well, and had some pains that started getting closer together. I called the doctor and he suggested I come in for monitoring, but he wasn't concerned. When I arrived at the hospital at 9 p.m., the nurse checked me and found that I was completely dilated and my baby was breech. Owen arrived by c-section at 10:39 p.m., 9 weeks and 3 days early.

So I won't be able to share with you all what the third trimester is like after PAO, nor can I share anything on pushing with a PAO. Instead, much of my time is now taken up with my own recovery from surgery, pumping breastmilk every two hours, and visiting my little boy in the NICU every day. He's beautiful and doing very well, but he won't be home for about six weeks.



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cuisine
Jul. 13th, 2007 @ 06:27 pm new developments
Well, my hips have begun to get sore lately, mostly from being stuck on my side and having to sleep only on my sides. I haven't seen my surgeons since April 2006, so I haven't been able to ask any questions about PAO and pregnancy, but they never had any concerns before I got pregnant.

Unfortunately, the uterine anomaly I've mentioned has caused some weakness in my cervix and I've been placed on bedrest as of Wednesday. I'm not sure how long it will last, but I'm only 26 weeks pregnant, so this little man needs quite a few more weeks inside me to fully cook.

Sorry I haven't responded to comments lately; this has been pretty scary for us.
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cuisine
Jun. 19th, 2007 @ 12:26 pm Halfway there
Current Mood: good
I thought I should post an update. I am now almost 23 weeks pregnant, so a bit more than halfway there. I am still down 3 pounds from my starting weight, and carrying high and out front. I haven't really been showing very long or very much, and can still wear a lot of my old clothes from before I lost weight. I feel lots of movement now, which started about 4 weeks ago. (I have an anterior placenta, so that cushioned early movements.)

At 19 weeks, the baby was fully breech and clamped its legs closed so we couldn't see the gender.

So far I have not had any problems related to my hip. I do get tired and winded more easily, and have had to cut myself down to one session at the gym per week along with daily dog walks.

In addition to slathering cocoa butter on my belly, I've been lotioning my scar more as well, hoping that won't get stretched too much.
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cuisine
Mar. 20th, 2007 @ 10:00 pm my scar after two years
Two years later, this is what my scar looks like. Forgive the pasty skin and close-up of my panties.

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cuisine
Mar. 8th, 2007 @ 12:46 pm more weirdness
Well, in addition to my DDH, my initial ultrasound revealed another birth defect. I have a bicornuate uterus, which means that it's heart-shaped instead of the usual shape, so it looks like it has two horns at the top. The baby, which measured 7w6d today, is doing just fine hanging out in the right horn. So it looks like having the PAO was a sound decision since that hip will end up supporting more of the weight of this kiddo as it develops. Revised due date is 10/17.
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cuisine
Feb. 15th, 2007 @ 11:44 am a very small update
Well, we seem to have finally gotten pregnant, so I'll be updating this page with any relevant info for post-PAO moms. I'm due October 23, and hopefully will hear a heartbeat at my appointment on March 2. I am a little nervous about what my scar is going to look like and how well that skin will stretch. I've been assured so far that my hip will pose no problems.

I've also lost 2 more pounds, bringing the total to 19. (Yes, I messed up in my last entry.)

I'm beginning to notice a lot of comments with direct questions that are answered in my posts. There's a lot of good information back in the archives. For everyone's reference:

- You can read about my history with CHD/DHD and my first Mayo Clinic visit in this entry: http://basketcat.livejournal.com/2005/02/01/
- why I chose surgery here: http://basketcat.livejournal.com/2005/02/03/
- my surgical experience starts here http://basketcat.livejournal.com/4617.html and proceeds for the next week
- the first month of recovery is here: http://basketcat.livejournal.com/2005/03/
- second month of recovery: http://basketcat.livejournal.com/2005/04/
- moving on to a cane and starting PT: http://basketcat.livejournal.com/2005/05/
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cuisine
Jan. 10th, 2007 @ 01:38 pm not much of an update
The pain I mentioned in my last entry disappeared about a month later. Sorry, I really thought I updated about that.

Another winter has set in, and my hip continues to be just fine. I even walked from the Capitol to the DC Convention Center last month with no problems. I've also managed to lose about 18 lb total, down from 165 to 148. I'd really like to get down to 140 or less, but the loss has stalled in the last three months.

I mentioned several entries ago that we were going to try to have a baby. Well, we've had no luck, so we're moving forward with fertility testing. I'm already doing everything I can on my own, and my husband has already been checked out.
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cuisine
Jul. 10th, 2006 @ 01:22 pm problems with my feet
In the last 4 months or so, I've developing increasing pain in my feet. Plantar fasciitis, apparently, probably due to the changes in my gait since surgery. I'm working on doing better with my stretching and wearing shoes with more arch support. I suspect I would not have developed this if I had not stopped doing my PT routine.
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cuisine
Apr. 14th, 2006 @ 03:37 pm one-year post-op follow-up
Sorry it has been so long since I updated this. After I finished PT, I pretty much fell off the wagon exercise-wise. I think I made it to the gym twice last fall.

Well, in early February I started going back to the gym again and am feeling better and starting to drop a little weight. Overall, I'm doing pretty well. My flexibility is good, and I have minimal residual effects. I still have a touch of trouble getting into the driver's side of taller vehicles, and I have trouble putting my right foot into pant legs. Full feeling has not returned in my right thigh, but it's about half there, I would estimate.

Yesterday I had my one-year follow-up x-rays with my local OS, James Kudrna at Illinois Bone and Joint. It's crazy. If not for the screws, you'd never know I had surgery. The joint is lined up so much better, and he said my cartilage looks great. He also estimated that I would have been back in 5 years for a replacement if not for the PAO. He wants to see me again in a year, and to continue to avoid high impact sports like running. I'm not a runner anyway.

This year my husband and I plan to try for our first baby. I'll update here about the impact of pregnancy and labor on a post-PAO joint as things happen.
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cuisine
Sep. 14th, 2005 @ 04:26 pm feeling so much better
The pain I complained of in my last entry went away as quickly as it came. I saw the surgeon on 8/16, and the bones look to be healing perfectly. My screws are sunken in (i.e., the heads are flush with the edge of the bone), so the doc sees no need to remove them unless I have some difficulties later.

My PT gave me my home program, with stretching daily and strength work twice a week. Since then we've been tapering off the sessions with her. I have one last appointment next Thursday. I have adjustable ankle weights at home, and a band to wrap around my thighs for the clam exercise. So between daily walks with the dogs (we are puppy sitting my MIL's dog for several months), dog training classes once a week, the gym, and my at-home sessions, things are going well. For the most part, I have very few problems or limitations. I can sit Indian-style if I want to, I can stand for a decent length of time, I just have some issues with stamina.
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cuisine
Aug. 7th, 2005 @ 04:56 pm some pain lately
For about two weeks in July, I started having pain in my groin on the right side. This was in the inner side of my thigh, and was very disconcerting to me. My strength was increasing rapidly, and my lateral motion was back to normal. I still have some room for growth in my range of motion to the front, and I am still far weaker than I was, but for the most part things are mostly normal. Stretching and making an effort to not let my knee turn in when I stood up helped a lot.

I am still in PT twice a week for about 70 minutes, and have a followup with my local OS on August 16th. I am hoping he will release me from PT at that point.
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cuisine
Jul. 14th, 2005 @ 10:03 am my apologies for the lack of updates
It's been a busy month. My sister had a lot of complications, work was ridiculously busy, and my husband and I are moving forward with plans to bring his mother to live here in Chicago. I also went to Arizona for Fourth of July weekend.

I am still in PT twice a week, and am scheduled to continue for awhile because my OS is busy and I can't get in to see him again until August 16th. I haven't used my cane in more than two weeks, and I regret taking it with me to Arizona. It was a huge pain to deal with in the airport and on the plane, and I never used it. Plus, if anything, people seemed to get in my way more and not leave me any room to get around them.

My range of motion is vastly improved. Moving my right leg out to the side it is completely back to normal. Bringing up my knee I can bring it up a lot lying down, past vertical, but it's not as good as the other one and never will be. At the moment, standing I can bring up that leg to about 90 degrees and that's it. I still have to lift my leg to get into an SUV and such, but my strength is improving all the time.

My scar is looking much better. The stitch dots are almost gone. I'll have to take a new picture soon.
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cuisine
Jun. 11th, 2005 @ 10:30 am PT is hard
I'm sore from yesterday's PT session. I've been going twice a week, and doing my home exercises every day. I also walk for about 20 minutes most days with my dog.

This week has been very eventful. My younger sister had her first baby by C-section on Tuesday night. This is Sofia:


There was also a really scary event yesterday. I had my PT appointment at 3:30. I was running a little late, as usual. It's two blocks away from my office, so I walk. When I walked over, the block was full of police cars, ambulances, fire engines, and helicopters flying overhead. Even the sidewalk was cordoned off by the police, so I detoured around the block and through an alley to reach the building. On the way, I heard someone crying on her cell phone about how "it sounded like a backfire" and "she was just eating outside." At this point I realized that someone may have been shot, something unthinkable in this wealthy little suburb's tiny downtown on a hot summer afternoon. I got to the office and told the receptionist and my PT. While I did my workout, the police came by, said two people were shot, one was dead, and we needed to lock all the doors because the guy was still on the loose. It ended up that she was a waitress engaged to the owner of the restaurant's son, eating outside with her two little girls. She was killed and one of her daughters was shot when a car came by and opened fire with a shotgun. The guy fled on foot and killed himself in her backyard several blocks away.

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Macie