I need a "Pain Management for Dummies" book

Seriously - someone should write a "Pain Management for Dummies" book. Actually, once I started typing this in my blog post I hit Google to see if it was actually out there. To my not-so-surprise, there are several. :-) That cracks me up.

My darling husband is fighting a cold, so knowing he needed a break from tending to 3 persons on his own lately, I decided to set myself some alarms across my mobile devices last night for my 4-hour pain med reminders. We had everything layed out so that I could wake up and take the meds, and he could stay upstairs and get some sleep. I ended up staying up late to take my midnight dose of Percaset, then set my reminder for 4am to take more Percaset plus my 12-hour time release Oxycontin. I woke up at 4 in absolute blinding pain. I could hardly push the button on my bed remote to raise the head just enough to take the medicine and wash it down from a cup with a bendy straw in it! I tell you what - I'm starting to think that either I need something stronger, or need to shorten my window from 4 hours to 3. The only problem is, Percaset has a serious dose of Tylenol in it and you can only consume a certain amount in a 24 hour period. Something to talk to my surgeon's nurse about.

I also awoke to notice my right thigh and hip is a bit puffier than the non-operated side. The incision still looks great - no redness or drainage, but nonetheless something I emailed the nurse about. She said it is not uncommon to have more edema around the incision, and reminded me I did have a hematoma at the top of the incision so I guess I don't have anything to worry about. From my perspective though, I can deal with this localized pain MUCH better than that PLUS nausea PLUS heartburn! I feel like a million bucks compared to how I felt just a few days ago. Pain management is such a confusing, scientific balancing act it seems ... I think it also causes you to have really weird dreams. I had some REALLY strange and vivid dreams about work early this morning. I dreamed I went back to work MUCH earlier than prescribed, and had no cane ... no walker ... no wheelchair ... and was hopping around on one leg from meeting to meeting. Very strange. I do miss the work crew though!

Call me Evil Knievel

I was a wheelin fool last night in my wheelchair. I was feeling pretty good and wanted to test my new found independence, so after dinner (I sat at the table with the family, in my ride) I told my husband I would pick up the kitchen while he took the kids upstairs to bathe them. He looked at me like I was crazy, and it took a little convincing, but he reluctantly took them upstairs and I got to work. I threw away all the trash, put dirty dishes in the sink, put a few things in the frig, wiped the counters/island/dinner table down with Clorox wipes, and picked up a few of the piles on the counters ... all from the safe confines of my wheelchair. Later after the kids were nice and squeaky clean ... he said "Wow - the kitchen looks great, babe!". Hee hee ... never underestimate the power of a project manager. :) I will admit it was tricky, and there were some things I really could not do, but it was fun just to put myself to the challenge. I took each of the kids for a ride sitting on my good leg around the kitchen. They had a blast. :-)

In addition to this necessity, PAO patients need a "grabber" (shown here clipped to the right side of the wheelchair). For the things which are not immediately in your reach, this great gadget can usually place things in your reach. I was also provided an "invisible dog leash" sort of thing (will add a picture later) that has a loop on one end (that I loop on my operated leg in the arch of my foot) and is a durable nylon with a handle at the top that helps me lift my somewhat dead leg from the floor into the bed, or wherever I need it to go. My leg muscles are so compromised that I cannot yet lift my leg and place it wherever I please, so I need help.

And then of course is the walker. This is MUCH more stable than crutches at this point, where I still get light-headed after being vertical for any length of time. I will admit it is nearly impossible to fold this up and carry it in my lap when I'm wheeling myself around the house. You can't tell I'm trying to re-gain my independence, can you? Ugh ...

After a busy morning of drinking coffee, changing clothes, brushing my hair, brushing my teeth, and traveling to the den to get myself set up on the couch with my laptop and such, I'm exhausted. My BFF is coming over at lunchtime and bringing our favorite black bean salad from Calypso here in Cool Springs, so hopefully I can stay awake long enough to enjoy a visit with her!

I want to say a special THANK YOU to all my friends and church folk who have brought meals and treats for us. The kids have enjoyed the variety (and so have we!), and it has been much easier on John not having to worry about too much grocery shopping and cooking each night for all of us. I love you all.

And to my husband, who still manages day-in-and-day-out to get both kids up, dressed, and to their respective schools/summer camps, takes care of me, and still manages to get his own work done (remotely at least for this week), he is my hero. He treated himself (with my support, of course) to 2 new 24" Acer monitors for his studio (pics to come as well). Amazon had a sale, so I let him get those and they arrived yesterday. They look awesome!! I love you, John ... and can't thank you enough for your dedication to keeping this family afloat!

Oh - here is my newly constructed right hip with the 7 screws, and a nicely rounded socket where my femoral head fits nicely inside. Yes, very nice. :-) I'm trying to get my hands on digital copies of these, so pardon the red markings from the surgeon - this is a picture of a piece of paper, basically. There is a big white wrinkle going up the page from the bottom, so disregard that. The screws aren't that hard to locate.

More later! Fingers are tired now. :)
-L

1 week Post-Op

Here is my update - 1 week post op! It has been a long and very challenging week. I have already been through what many others have described as depression, day-time-TV blahs, feeling of being cooped up, crawling the walls because you can't do anything, anxious because you can't do anything on your own and have to ask for help ... I've now been there and can understand what they were talking about.

The other day I got really sick, and am thinking it was due to my inability to release the toxins out of my system (trying to choose words carefully here), which is what anesthesia can sometimes prohibit you from being able to do. Once that was taken care of, the nausea and vomiting went away. Then came the acid reflux. I'm not one who has ever had a problem with this in the past, so considering I am not eating much to begin with, still can't figure out why I'm having a problem with this other than I wasn't getting up and moving around. Nonetheless, this is still a pain. Then there is the abdominal pains (for obvious reasons - things are still not back to normal yet). Then there are the chest pains (granted, getting better) caused again from not moving around and taking deep breaths. Trying to do better on that. Then the kids - Jonathan is acting up at summer camp (he's my 5 1/2 year old), and Kathryn (who is 3) has been having accidents in her bed at night (which she hasn't done in nearly a year I might add!) - the kids are starting to not understand what's going on. They see me lying in this rented hospital bed downstairs WAY too much, they never see me up and around. Kathryn asked me on 2 separate occasions last night ... "will you come with me upstairs to get.." and I had to say no, honey - I can't. Then she would say "can you pick me up to get ..." and again my answer was no honey, I'm sorry. Jonathan asked the other day "will our family be like this forever, with mommy downstairs?". Let me tell you - this broke my heart. They can't really grasp the concept of "no, this is just for 2-3 months". They can't understand if that's a long time or not. I broke down into tears last night after they kissed me goodnight and went upstairs to get their jammies on get tucked into bed. Oh the things we take for granted sometimes.

The dressing from the incisions came off yesterday and everything is healing superbly. I was S-H-O-C-K-E-D to see what the damage was. We're talking 12+ inch long incision, because of them having to get full exposure to my hip and dislocate/relocate it as well. Other women have posted pictures of their incision and they don't seem to be quite as far down the thigh as mine, but of course I had some extra special things done in my procedure that others may not have had. Lucky me ...

Last night I think I hit a breaking point, or perhaps a breaking-DOWN point. Everything had come to a head and some pretty big depression and self-pity started coming into play. This depression was turning into anger, which manifested itself today into determination. I stayed awake for my 10pm dose of Percaset, then realized I needed to use the restroom. The one thing I have NOT been able to do this past week (well, other than just about everything) has been to get both feet into bed after I have gotten up. I just don't have the muscle dexterity in my upper thigh to raise it and always needed someone to lift it up for me. Well, I got so pissed off last night that I yanked my leg into bed myself (knowing everyone else was asleep at this point). After I wallowed in tears for a while from the pain, I realized "hey, I did it!". I got a pretty good nights sleep after that.

Today my mom came to visit and helped me take a bath (using the shower seat and shower wand she and her husband installed), wash my hair, brush my teeth, wheeled me in the wheelchair out on the front porch where we enjoyed the breeze, fresh air, and talked about everything ... I felt so refreshed. Oh, have to mention I had a nice cup of Starbucks coffee in my hand. :) That always helps! Home Physical Therapy came by at noon today, and it was also a positive visit.

• Improving my ability to hop with a walker for longer distances (i.e. down a hallway) - still toe-touch weight ONLY on right leg. While vertical, on the walker for example, my right leg feels like it weighs a TON and I feel all that gravity pulling down on my fragile hip being held together by 7 screws. Scares me a bit.
• Able to swing both legs out of bed and stand up to a walker more easily than before
• While sitting on sofa, can lift my right leg to a straight position (equal with my knee/thigh) - This was a HUGE accomplishment that I didn't realize I could do yet!
• With both legs elevated in front of me on a recliner, can slowly move my operated leg from left to right (not without pain though - you are basically moving your hip in it's socket from left to right, so understandably there is pain from the hip down through the thigh and into the knee)

Now that it's nearly 2:30, I think I'm going to enjoy the accomplishments of the day, try to take a little nap, keep my mental state in-check so that I don't dip into that nasty, dark, lonely, fearsome place again, and look forward to seeing the kids reactions this afternoon that mommy is not in her little room - she's actually in the den and looking somewhat normal!

Hip, Hip Hooray ...

Surgery day and hospital stay

Surgery day was this past Thursday. I've been a bit out of it lately, so I will now try to catch up on everything that has happened since then!

First of all, I am extremely thankful to be alive. When someone faces major surgery, there are all sorts of things that cross your mind (in my case, I was thinking worse case scenario) and was scared to death to leave my family.

I had to be at Vanderbilt at 6:00am. My husband had to drop me off then take my daughter to school (they didn't open until 7) and then take my son to summer camp by 7:30. Knowing my OR time started at 8am, I pretty much knew John wouldn't make it back to Vanderbilt to see me before I went in. Once I signed in at the admitting desk, I called my mom (who works in the main OR at VUMC and was just getting off her 7p-7a shift). She met me on the floor when they wheeled me up to the holding area.

Every single person who walked up to me said hello and that they knew my mom, and were very sweet. That was quite comforting. They had me put on a lovely gown - one I had never seen before, then started asking questions while they got an IV started. They then talked to me about anesthesia and the potential of an epidural block to help with pain relief. I let them do it - figuring, if they recommend it ... then I guess I should trust them and do it. I will realize later that I was glad I did!

Questions answered, IV started, block injection complete, now time for some versed (?) in my IV to calm me. Anxiety was running at full force now. To my surprise, Joe Fitzpatrick (our new Minister of Music / Worship and Music Pastor at our church ... my husband and I were active in our church choir before our son was old enough to starting coming to worship this past fall) came by. He had us gather around hand in hand (including me and my mom, and a few nurses who happened to be standing there) and said a wonderful prayer. About 3 minutes after Joe left, my husband walked in. What a HUGE relief to be able to see him right before surgery!! We didn't have long to visit before it was game time. I hugged my mom, told her I loved her, and she stepped aside. John walks up. I stare longingly into my husband's eyes, hoping and praying this is not the last time, and I was off to the OR.

This OR was not too different than any other. Bright lights, cold, no bright colors on anything. I remember hearing clanking of metal instruments and tried to ignore that. :-) The manager of the anesthesia team said "ok, here we go" ... then I saw him walk over to some machine beside me, and that was all I remember.

When I awoke, I asked the nurse who was standing beside my bed what time it was, and she said 4:45 (PM!!!). Surgery took about 6 hours ... I was FLOORED! I think I was more floored to be alive than anything. Surgery was successful - here are some stats.

• Surgery time: ~6 hours
• Tasks performed: PAO with 7 screws, hip dislocated so that abnormal bone on the femoral head could be shaved off
• Sutures: ~30 along a 12" incision
• How I felt: major cotton mouth, but NO pain!
• Good deal of blood loss, but all of my own blood was re-used
• I was informed I had rolly-poly veins. Bruising to come would explain this and the difficulty they had during surgery putting in my additional IV's and arterial lines!

Once a room was ready, they wheeled me over to it. They told me they couldn't let me drink anything (other than sucking on ice chips) until I got to my room, because the bumps along the way to get to the room can sometimes make people nauseous.

I was in the hospital for 4 nights. Had some good nights, others not so good. Initial pain meds were a morphine drip + percaset. Morphine was not doing the trick (c'mon - they say push the button every 8 minutes for pain, but hello ... how are you supposed to do it when you are asleep??), so they switched me to an oral dose regimen of OxiContin (12-hour time released pills) plus 2 Percaset every 4 hours plus a stool softener plus an acid reflux pill (I will realize once home what that was for).

Vitals were checked every hour. On the 2nd day there was some concern with the drop in my red blood cell counts as it may lead to a blood transfusion. Because of my age, they were ok letting it drop to the level it was. It ended up not dropping any further during my stay.

Physical Therapy stopped by on Saturday morning, helped me do a few exercises (couldn't do too much because my pain wasn't under control yet). PT said they would come by later that afternoon, and didn't, and also never came by on Sunday. Monday rolls around, they finally decide it's safe to discharge me, and I make a firm statement that before I leave I need someone to help me figure out how to get up the 7-8 stairs I'll have to tackle from the garage inside the house. Fortunately, we did spend some time on that. Problem was, I was exhausted. With absolutely no appetite for the past 4 days, being on serious pain meds, having no energy, PT wearing me out, and muscles around my right hip now seriously compromised ... I was scared to death about how I was going to make it up those stairs once we got home.

Home journey and where I am today to come. Gotta move around some now - my fanny is getting sore!

My symptoms, and my "so called" options

As you can tell, I'm having a very "reflective" kind of day ...

As friends have found out I'm having hip surgery, I've been floored at the number of people who have reached out and said "oh my gosh - I've been having hip pain too!!". Perhaps something along the lines of hip dysplasia or something of the like is more common than I realized.

I thought I might explain my own symptoms, and what I've been "told" were my options.

Symptoms:

• Started off as hip pain (located in the front, center of your leg in the hip joint area). After sitting for a long period of time (such as at my desk in front of the computer at work), I would stand up and limp for a little while, then the pain would "walk itself off".
• In recent weeks, the hip pain has become constant with any walking, going up stairs, carrying things (such as my youngest child) ... and then radiates to this strange pain down my femur and around my knee

Once I was diagnosed with hip dysplasia, I was told I had a couple of options.

Options:

1. Do nothing - expect a total hip replacement in my 40's
2. Total Hip Replacement (THR) - option not on the table ... I'm too young. Hip replacements (from what I've been told) only last less than 10 years so I would end up having several in my lifetime.
3. With the PAO, prolong (if not eliminate) my need for a THR for 15-20 years if I'm lucky.

Of course, there are several risk factors I learned of the week just prior to the surgery.

Risks:

• If the hip bone doesn't heal (with this procedure they break your hip bone in about 3 places, re-shape the socket to provide total coverage of the femoral head, then screw it back together with a few large, gargantuan sized screws), then a THR will probably be needed.
• If there is degredation of the cartilage in the socket (which it looks like there is "some") and it continues to degenerate for x period of time, then a THR will probably be needed.
• The location of the procedure is dangerously close to the sciatic nerve. Surgeons have to be extremely careful that the nerve isn't damaged.
  

On the bright side, it looks like my left hip is in good shape! There are many folks out there who have issues on both sides, and eventually end up PAO'ing the other one. I'm also thankful that when I went in last week for all my pre-op sticks, pricks, scans, and such ... one of the nurses checking my vitals said "your blood pressure is beautiful". I didn't know that BP could be considered "beautiful" ... I think of "beautiful" as being used when talking about a lovely beach, sunset, or rainbow ... Nonetheless, I take this comment as a good thing.

Ok, enough blogging ... gotta get back to laundry.

My temporary bedroom

I'd like to say a special thanks to my darling husband for allowing me to crash the man cave (also known as Hybernation Music Studio) as my recovery spot! Just need a bed now ... This is the only room downstairs where we could arrange for me to sleep. I bought a laptop stand thing (on the left, beside the sofa) where I can roll my laptop closer to me (and put it together all by myself!) and blog ... actually, probably just play on Facebook and work on my FarmTown farm when I'm not knocked out on pain meds. :-)

What I've been told to expect

With my surgery coming up tomorrow (eek!), here is what I know at this point about the procedure, hospital stay, and recovery.

• In the hospital for 3-4 days
• Epidural will be done (specific spinal block to my right hip)
• Probably aspirin and Lovinox injections afterwards (versus TED hose) to ward off blood clots
• Cell-saver blood management during surgery (re-use my own blood as much as they can during the procedure. Some folks bank their blood beforehand from what I've read. Had to sign a waiver that gives them permission to do a blood transfusion if necessary.)
• ~12" incision
  
• Toe-touch weight-bearing only on right side for 8-10 weeks

(meaning, no steps ... no driving ...)

When he told me that, I was thinking to myself ... "How is THAT supposed to work? All our bedrooms are upstairs, including the kids rooms! I won't be able to tuck them in at night, do laundry, or anything??" Mentally where I am right now is, if I can just survive the anesthesia (which will be a first for me, even though my children were both born via c-section, I was still awake) ... then I can handle whatever comes my way.

We have a downstairs bedroom (nicely termed the "man cave" where my husband has all his music studio/recording/composing stuff and keyboards) where we've moved some things around so that we can rent a mechanical bed that we can raise/lower/adjust as needed). We also have an incredible network of friends and folks at church who are rallying to bring over dinners for us! This was nice considering my husband has a full time job, and will be busy taking care of me and both kids during recovery!

My Story

Greetings!

I am not a "blogger" per se, however when I learned at the ripe ole age of 34 that I had severe hip dysplasia on the right and I was looking at surgery, I started doing some research and discovered there are so many women who are looking for information on PAO (Periacetabular Osteotomy) procedures so I wanted to contribute. This procedure is so new that the best we can do is offer our own experiences in hopes that it helps others have an idea of what one could expect, and what options are out there. I am thankful for the folks who have shared their story, history, and journey ... and I pray that for others out there who hare having hip pain, that this might be helpful for them.

I did not start experiencing hip pain (right in the joint) until after my 2nd child. She is now 3, and over the past few months the pain has gotten worse and I'm limping more. I saw a couple of doctors at the Bone and Joint clinic last year. They did xrays, sent me to Physical Therapy, and did dye tests on my hip but could not find anything. They recommended I wait 6 months to see a guy who was joining their practice who specialized in young hips, so I did. He did a fresh set of xrays, asked me some questions, and quickly informed me I had severe hip dysplasia on the right and referred me to a couple of Orthopaedic surgeons to explore my candidacy of having a PAO.

I met with Dr. Philip Kregor, of the Vanderbilt Orthopaedic Trauma Division, and he confirmed I was a perfect candidate. Dr. Kregor is an amazing surgeon with equally amazing bedside manners. He was compassionate, thorough, and made me feel completely comfortable that his recommendations were right for me.

I will do my best to document MY version of the procedure, recovery, and such. I have already learned that depending on the surgeon, everyone's PAO experience is MUCH different than the next! So, while my experience may not be text book ... hopefully it will help provide anyone reading this some information and perspective.