SCARS

Here is a look at my scars.  The right hip is 3 months post op, and the left is 1 year post op.  In these photos, the right one looks longer than the left, but I'm pretty sure in actuality, they are almost exactly the same size.  The left one has just mellowed out and fleshed into my skin.  The right one is still very sensitive to the touch, and very stiff.  I've been having some trouble with the scar tissue on the inside of my body interfering with the free movement of my hip flexors and other nerves that run down the front of your pelvis, into the thigh.  Right where the hip bends, for sitting and such, my scar is hard like a rock and hurts like hell if I stay in one spot too long.  I am supposed to be working at scar manipulation to get it flexible, but it hurts!  It also dries out and cracks if it is not moisturized or hasn't been massaged. 

 For moisture, I use Emu Oil, which is a magical substance that can be used for just about anything.  It is very fast absorbing, so it doesn't sit on top of your skin, or get rubbed off by clothing before it does it's job.   Here is the website for the brand of emu oil that I use: http://www.jsemuoil.com/.  I also use Vitamin E oil, and just about any other lotion without fragrance in it, if it is convenient.  I've noticed that my scar on the right has these funny grey bumps in it.  My therapist says they are stitches. They may come to the surface, and they may just disintegrate. I didn't notice these at all in my left scar, so they must have disintegrated faster.    

I have to mention also, that with my left scar, I used a product called Dr. Blaine's Scar Care.  It is a reusable silicone gel pad strip that you place over the scar and wear  for 12 hours daily for 90 days.  It is meant to recess the scar so it looks more flush with your skin, and reduce its overall appearance.  I don't think I used it as much as suggested, but I definitely noticed a difference.  I think in the photos, you can tell that my left scar looks flatter and broader than the right.  This is due to the strip.  It is too soon to start using it on my right scar because it is still too sensitive.  I plan to though, maybe after another month or so.

I have graduated to one crutch, which has been more of a challenge for this recovery than the last.  I have been going to physical therapy twice a week, where I do land and pool therapy.  I have started doing basic yoga at home also.  Getting up and down from the floor is not an easy task after hip surgery, and shouldn't be attempted until you are sure that you can do it.  I do it only on my yoga mat, so there is traction, and slowly lower myself from a bending/ downward dog position.  It is the same to get up off the floor- first on hands and knees, push back to downward dog, and then slowly to standing with your knees bent.  

I have my three month post op with my surgeon next Tuesday.  I will get to see how the bone is healing, which is my main curiosity at this point.  I will then start to go to therapy 3 times a week.  I've spent the last month really down in the dumps, and now I need to get myself motivated and really push myself to health.

So, that's where I am at.  My scars are my battle wounds, and will be with me forever.  They will also be about an inch longer after I get the screws taken out of my hips.  I hate to seem vain, but it has been as much of a challenge to accept the way my body looks, as it has been to endure and accept the major structural differences inside my body.  I'm thankful to have someone that loves me and thinks I look like a violin.  It helps me not to think about it as much.  

Sacroiliac Joint can Suck It (cortisone, that is)

OK.

It will be 8 weeks on Thursday since the PAO on my right hip.  I definitely notice an improvement, especially when I wake up in the morning.  For the first 6-8 weeks, for both of my PAOs, every morning I would wake up feeling like I had been hit by a truck. That feeling has begun to subside, which is a great sign.

Not so great is the relentless pain in my back, to the right of the base of my tailbone.  This pain has stayed with me for years now, and has always been lumped in with the myriad of other pains and problems with my dysplastic right hip.  I described my painful experience with the lower back (lumbar spine) area in previous posts, how it related to my thigh pain and that the professional guess was that my sacrum was out of whack.  Physical therapy with an awesome therapist (Chad Neubrand in San Diego; he is amazing) helped after only a few sessions with him.  I showed significant improvement in my movement ( able to bend the knee again ) and reduced pain in my lumbar spine area.  

As the lumbar spine, thigh and hip pain started to subside significantly, the radiating pain at the base of my tailbone became more apparent.  It became clear that this pain was not related to the other parts that I have been so drastically working to fix.  I wouldn't say that the tailbone pain was my BIGGEST complaint in the beginning, but it was a large part of what afflicted me for so long.  The first doctor I went to for help was because I thought I had bruised my tailbone during a fall at the circus.   That small concern turned into a giant two year journey of three hip surgeries, many months of slow, difficult recovery, job loss, home loss, financial debt and distress, and a loud wake up call about my lifestyle and life goals.  Now, after all that, it comes back to this little bitch of a tailbone that refuses to chill out.

So today, I went to the doctor to get to the bottom of it.  First off, my pelvis is healing at a slower rate than he would prefer, and he is concerned about my nutrition.  (This happened for my last PAO as well, and it may have to do with my body's natural healing schedule).  I haven't been very diligent about getting enough to eat, partly because it is extremely difficult to cook and clean while on crutches, and partly because I have been in so much pain and slightly depressed.  Anyway, I will work much harder to make sure I am getting all the nutrients I need.  

Second, the doctor now understands more the intensity of the pain at my tailbone, how it is overshadowing the greatness of the hip surgery he did, and inhibiting me from moving forward boldly in my recovery.  He suggested cortisone and steroid shots straight into the sacroiliac joint, where it is believed the pain is located.  I of course agreed, since I trust everything Dr. Santore says, and I have tried just about EVERYTHING else to relieve my pain.  The injections are funny; for the first day, you feel great, and then the pain comes back for about 5 days, and then the pain is supposed to go away again. 

The injections are a pain masking tool that sometimes work forever, and sometimes not.  It is a total crapshoot, which is frustrating, but my only option at this stage.  The idea is that with a temporary relief of the pain, I can push forward in my recovery from the PAO.  Once I am healed and walking normally again, the twisted sacrum and sacroiliac joint pain will resolve itself based on my improved balance and strength. 

I am trying really hard to stay positive, keep the faith and project images of a pain free, healthy future for myself.  But I will admit here that those things have been more challenging to overcome than the physical pain and trauma itself.  Sometimes I think I may not ever get better.  Every challenge I have overcome has been followed immediately by another, and it just wears me down.  What if I go through all of this and the pain still doesn't go away?  The psychological stress has taken it's toll on me, and I want so badly to beat it.  I don't play video games, but I imagine that the frustration of just not knowing how to kill the biggest, badest monster at the end of the game would be similar to how I feel. I have tried every angle, every trick, every tool and weapon I can find, and I still can't kill the bloody bastard.  The only difference is that I can't walk away  from the challenge.  The obstacle lives inside me, in my body and my mind, every second of the day, and clouds everything else around me.

I hope this cortisone shot will be the answer to my prayers, and that my recovery will breeze on.  Two months down, four more to go.

Good News/ Bad News

Ok, so THANKFULLY, the problem is not my hip.   My hip is fine, and healing normally for (almost) 5 weeks post op. 

However, the problem IS my back.  Dr. Santore thinks I have thrown out my back.  This would make sense with all the tenderness in my low back, near my spine.  I guess low back and spinal issues can translate to muscle pain and spasms in the leg also.  This would explain the horrific pain in my quad when I bend my knee. When the knee is bent, it stretches and pinches the base nerves deep in my pelvis/butt and spasms through my leg.  

So, I am back to taking lots of hardcore pain killers, muscle relaxers, and anti-inflammatorys.   And I have to see a physical therapist for movement manipulation and massage.  If I did not have a broken pelvis, the doc said that an adjustment from a chiropractor would probably do the trick, but since there are broken things trying to align themselves, it is not a good idea.

One thing I was shocked about, was that we almost stumped Dr. Santore!  He didn't know what was going on!  This has never happened with any of his patients, so he is kind of confused too.  He did a lot of physical tests, to rule out that it was a hip problem, and then deduced from my screaming in pain , and large Sharpie marks on my skin ( marking all my pain points) what was most likely going on in the mysterious land of my lower half.  There is definitely a cosmic memo floating around that reminds every aspect of my life that is must not be easy.  Thanks.

This means more lying around, sedation and waiting waiting waiting...

At least my wonderful boyfriend is here to keep me company!  yay!  

Boo hoo

Well, in my last entry, I expressed that I had weird pains that I was not worried about.  

It is now 6 days later, the pains are still here, and I am scared!  The pains are intensely sharp and shooting, and only when I sit or stand.  From what I can tell, it is related to bending my knee.  So sitting, with knees bent, is the worst, but also, just on crutches with knee slightly bent is painful too!  I don't know what is wrong!  The doctor has been out of town, so I have to wait until Monday to go see him. 

To me, it feels like a muscle problem, like something is pinched or reset incorrectly.  It also feels like maybe something got shortened and now doesn't have enough elasticity to bend.  It feels like it is originating deep in my hip, like from deep in the butt muscle, radiates through my pelvis, and then shoots down the front of my thigh to the point where I want to scream and cry.  I'm freaked out!  I have been confined to my bed for 6 days because of this, and I am so frustrated and mad.

I am starting to think it is something else entirely.  All the what-ifs in my mind are swirling around to many worst case scenarios.  I mean, it is already bad enough that I am bed ridden after four weeks of positive recovery.  There is obviously something wrong by that fact alone.   

I don't know what else to say.  I just have to wait to see the doctor.  Boo.

Fashionist: Michelle and Alycia - Dolores Park, SF

Fashionist: Michelle and Alycia - Dolores Park, SF

Hey, here's a picture of me at Easter this year, just 7 months after my first PAO.  It happens!

Some Days Just Suck.

I am feeling terrible today.  

My mom is at a conference in Los Angeles, so I will be home alone during the days from now on.  It is only day two, and I am lonely and frustrated and in pain!  Starting yesterday, I have been experiencing sharp  shooting pain from my groin area through my thigh; on the inner and outer thigh.  It is worst when I sit straight up, like in a chair or on the side of the bed, and pain killers aren't helping.  My body only wants to be horizontal and screams in agonizing sharp pains if I try to do anything different.

But I'm not worried.

During recovery for my left PAO, I experienced very similar shooting pains in my left thigh.  It was awful for a few days and then went away.  As my body is adjusting to it's new construction, there are growing and healing pains that I just have to deal with.  Really, I've discovered that the first 8 weeks are all about staying as comfortable as possible.  You definitely want to push yourself to crutch a little further, or sit up an extra half hour at a restaurant, but really, you just need to relax and let the massive break in your pelvis heal and grow back solid and strong.  

And no matter how hard you may try to stop it...some days just suck.

Tools

One of the most crucial tools for hip surgery recovery, is a raised toilet.  After surgery, it is very hard to bend at the waist, and to squat or sit.  Also, it is a good idea to have handles and something sturdy to rely on when using the bathroom.  This model is adjustable, fits over any standard sized toilet, and can also double as a bedside commode, which may be necessary in the first week.
This amazing contraption is a simple basket with rope.  It is so useful to move things around in.  It is especially handy for moving food items from the kitchen to where you will eat them.  Since you will be on crutches for 8 weeks, both hands will be occupied.  With this little helper, you can slip the rope around your wrist and drag your stuff behind you from room to room.
This is a standard bed tray, with openings for books and magazines.  This is super useful for a variety of things, especially using the computer.  Your lap will be sensitive, so you probably won't be resting things directly on you.  You will also be spending a lot of time in bed, so it is just a nice helpful tool for bed activities.
These are standard crutches, that will be your 5th and 6th limbs for the next few months.  You will go no where without them!  You may use a walker for the first week or two, and a wheelchair for longer excursions, but the crutches are the main walking accessory.  I put on sheepskin covers for the hands and under the arms, as these areas can become calloused and chafed due to overuse.  Some people use padded gloves with their crutches, which is another comfort option.
This is an apron that I decorated after my first surgery.  It is extremely helpful for carrying my personal items with me around the house.  I carry my cell phone, chapstick, and meds in the pouches regularly, and then still have space for any other item that I may have to bring along.

There are some additional tools in the next posting as well.  Usually, in the hospital, someone will come by before you are discharged and talk about tools that you may need.  They have this package that includes a 

• grabber
• long handled shower sponge
• elastic shoelaces
• a long shoe horn ( for putting on sneakers etc.)
• a sock contraption
  

I did not include the socks and shoes contraptions because I don't really have to use them and lost them during my last procedure.  I live in Southern California; it is really warm, and I don't really need to wear complicated footwear.  I'm more of a sturdy slip on sandal kind of girl.  I can imagine if you live in a cold place that the sock contraption would be of great use to you!  If you can get away with not wearing much on your feet most of the time, you will be very happy.  Much less to trip on!

This posting is about tools that you may want to get in preparation for hip surgery.  Depending on your insurance, you may be discharged from the hospital with some of these.  Others you will have to buy.  You will probably want to find out before you have your procedure, so that you can be prepared when you get home from the hospital.

First off, you will  want a Grabber!  This is so helpful for a variety of uses, including: picking up dropped items, grabbing anything without moving from your recovery bed, dressing yourself (putting on panties, shorts, pants).  I keep one in the bathroom too, in case I have to reach under the sink to pull out paper, or towels or products.

Somehow I messed up this blog and deleted all the photos! I will try again....

Here is another necessary tool for a PAO recovering patient------->

A shower chair!  Depending on what your shower situation is at your house, it may be quite the challenge to wash up for the first few weeks.  I have a regular tub with a shower curtain, so this style free standing chair works for me. It is adjustable in height, and has sturdy rubber feet for anti slippage.  Also, you will want a long handled scrub brush to reach your lower extremities in the shower.   

2 Weeks Home & Follow Up Appointment

Two weeks home from the hospital today!  It seems like years since I was vomiting uncontrollably, in horrific pain and really thinking that I might die.  I feel pretty solid, considering.  I am holding down food, getting around the house on the crutches pretty stealthily, and back  to generally positive spirits.  I've even started crafting a little!

I had my 2 weeks follow up with Dr. Santore last Friday.  Two weeks since the surgery, and he is pleased with my current condition.  He says I look "Wonderful!"

 (A note about Dr. Santore: he is a VERY busy man.  He is not only one of the most highly respected surgeons in his field, he is also a sought after teacher of this updated PAO procedure and cutting edge hip replacements.  In addition, he is the Chief of Staff at Sharp Hospital (where I had my surgery), as well as the Chief of Staff of All Chief's of Staff in San Diego County.  He is like God of all medicine, and he is giving me new hips.  The point is, he can sometimes be very blunt, direct, and swift in meetings, but also somehow always finds a way to make you feel important and safe.  It gives me great confidence to know I am being cared for by the best, and I highly recommend him to anyone in need of joint surgery.)

 I wanted to try to spend a night at my Dad's house in San Diego after my appointment with Dr. Santore.  My only concern was that my toilet chair would not fit in his little bathroom.  (A regular toilet is too low for someone who just had hip surgery.  There is an adjustable chair contracption that sits over  a regular toilet, that has handles, and it necessary for any recovering PAO patient)  If the stupid chair didn't fit, I would have to turn around and go back to Temecula!  So Mom and I  load up the car with my wheelchair, the toilet chair, crutches, bag, body pillow and grabber, and we drive the hour from Temecula to San Diego. I decide to crutch into his office, to show him just how well I'm doing, even though I had not crutched that far yet. I made it!  Then we had to go downstairs to get x-rays.  I was not going to make it!  So we borrowed a wheelchair to go down to the x-ray place which is PACKED.  So a 30-40 min goes by to get these x-rays, and as we are leaving, Dr. Santore is racing through the halls with his suit jacket flying behind him ( he always wears nice suits.  He says "You don't want your surgeon coming into the operating room looking like he just got off of a motorcycle!") looking for us.  He has a Chief of Staff meeting in 15 minutes!  

Great.  We won't have time for all those questions I wanted to ask.  Most of them I remember answers from last time, but I wanted to be reminded. So we are racing through the halls, Mom pushing me in the chair, behind Dr. Santore who is holding my x-rays up to the light and exclaiming "These look wonderful! Really great!"  I'm freaked out because this time you can actually SEE where the pelvis was broken, and how the screws are holding the whole thing together.  We get into the elevator, miss our floor (Dr.  Santore is so anxious to get to his  meeting!) and pick up people on every floor down, as he pulls out one particularly disturbing side view of my hips.  "Looks like you fell on a nail gun!" he shouts. I want to tell him that is how I feel too, but I just want to get out of this elevator and try to fit in as much information into the next 10 minutes as possible.

We finally get to the office, and he examines me. I'm doing really great, have a lot of flexibility and very little nerve damage.  This time is much different than the last.  I still have surgery pain, and some of it is similar to how it was before, but I can feel that the muscles around the hips are not inflamed and throbbing anymore.  I can move my knee up and down, which I could not do for a long time after my first PAO.  I am free to do rolling in and out movement of the leg and building quad movements, but he still wants a lot of rest to allow the bone to heal.  Now that I can SEE what he is talking about, I want to give it as much time as it needs to not look so freaky.  Another 5 weeks until I can start light pool therapy.  5-6 weeks on crutches, and then I can start putting a little weight on it and move to one crutch.

I also want to make a note about time.  It is very important not to give yourself a specific time frame for each little thing.  Everyone heals differently, and one part of it may take a little longer than you want it to.  Its OK!  During my first PAO, I thought I would be 100% healed and walking freely after 12 weeks.  When at 12 weeks I was still very heavily reliant on a cane, I thought there was something WRONG with me.  I healed slowly for a typical Santore patient, but it was just how it was.  Now, after 10 months, my left hip feels strong, pain free, and like a REAL hip.  It is important to allow your body whatever time it needs, to set this procedure right, so you can be free to have many, many solid, pain free years ahead.

So it turns out the toilet chair FIT!  and I got to spend the night at Dad's house.  He wheeled me down the block to a yummy Thai restaurant, where we sat outside (just wheel me up, instead of having to navigate wheelchair inside) and then went across the street for handmade ice cream.  It was great to get outside and do something that resembles real life for a change.

So I am still healing, but have very little damage to other parts around the hip area.  They changed my medication from Percocet (which is oxycodone with Tylenol) to just oxycodone (no Tylenol).  Studies show Tylenol eats your liver, which is good to know after taking this medication daily for a year.  Sheesh.  I need to go on a dynamo liver cleanse when this is all over. For now, I jam pack the vitamins and meds like candy.

2 weeks and going strong!

LOVENOX tutorial

Lovenox is an injectable blood thinner that you may have to use in the hospital, and for a couple weeks after you go home, to prevent blood clots.  You have to inject it yourself, into the tummy area.  This totally sucks and can be kind of scary the first couple times.  Whether you hate needles or not, if you're not a nurse, you may be unsure about how to do it.  So I recorded a mini tutorial for guidance!  I'm no pro, so the video is sideways, but I think it gets the point across just as well.

The Difference a Day Makes!

Sometimes it is hard to remember how fast out bodies acclimate and heal when faced with extreme circumstances.  The bottom photo is from the second day in the hospital with the physical therapist.  They get you up and moving right away, so your joints don't heal in one place, and you realize just how much you can do!  I have my catheter, the glucose drip, and my blood drain thing in tow, just to hobble to the door and back. 

  The top photo is from two days later, after all the tubes came out, and I was able to go to the bathroom all by myself!  The walker is only temporary, as I will graduate to crutches over this coming weekend.  Yay!

More pictures!

I'm one tough cookie!
This is the second day, heavily sedated, and showing off my mean tan.
Close up of the scar, with a quarter for scale.  My other scar is exactly the same, although cut by two different hands.  Greg says I look like a violin now!
My lovely view of the parking structure.  But look at these windows!  It was so nice to have sunlight in my room.  There were also electric shades that I could operate from my bed.  High-tech!
Thumbs up!

Pictures!

These photos came out in reverse order of how I wanted them.  Its my first time! So anyway, this is the cpm machine (Continuous Passive Motion) that constantly and slowing moves your leg from 0 degrees, and gradually from about 40-70 degrees as the days go by.  This is so your body doesn't just sit there and rot, or scar tissue growing around the joint and sticking it in one place.  You have to keep the joints well oiled!.
This is me in the recovery bed, just a few hours after surgery.
This is just after surgery, when my Dad came into the recovery room.  They keep you there a couple hours until you wake up and they can find a room for you.  Totally out of it, I was still ready for a close-up.
This is just before I went into surgery, before all the "margaritas" the anesthesiologist gave me.  He was definitely trying to get me drunk!~
Proof that it is me!  

Video for Greg in Hospital

This video was meant for my boyfriend Greg, while in the hospital.  I didn't know it was recording at first!

The first few nasty days at home

Wow.  The last few days have been blurry and painful.  First off, I was released from the hospital on Monday, so I stayed in the hospital for a total of five days, same as last time.  When released from the hospital, I was loopy and freaked out, partly because I found out that I was denied benefits from the federal government.  They sent me a letter saying that despite my condition, I still had 'adequate' use of my arms and legs, and that by their definition, I was not disabled, and still able to work a job.  This is obviously not the case, and it makes me SO MAD! to know that there are fucks out there collecting social security their whole lives, just to get fatter and lazier.  They are STEALING from people like me, who actually need this benefit, and only for a short amount of time.  This means that I have zero income for the duration of my recovery, and will be in huge amounts of debt for my surgery, hospital, physical therapy and other recovery costs.  This would freak anyone out, but at my super sensitive state, I just sobbed uncontrollably and saw my future as a bag lady very clearly.

Because of my hysterics, the doctor prescribed me Ativan to calm down the crazy.   On Monday night, my first night home, I was so upset, I took a Percocet, an Ambien, and an Ativan, and passed out for 16 hours.  Since then, I can't really remember much except a lot of throwing up, blurry vision, weakness and pain.  I basically slept all day Tuesday.  My mom called the doctor to find out what was wrong, and it turns out, I overdosed myself!  In the hospital, they give you a concoction of all those drugs together,and I was instructed to do so at home as well ( as needed of course).  However, in the hospital you get 5mg of each, whereas at home, I was prescribed 10mg.  Dr. Santore explained that he  does this because the drugs are controlled substances, and you are only able to prescribe a certain amount.  If he doubles the dose, then I can cut them in half at home, doubling my prescription, and reducing the need to refill my Rx as often.  Woah.  I wish I knew that.  Since then, I have been uncontrollably nauseas, weak, dizzy and in SO MUCH PAIN because I can't take the pain meds without wanting to throw up my insides.  Even looking at a computer screen made me want to vomit.

So I was prescribed some anti nausea medication, that helps for about an hour, and then sends me into dizzy spells.  Today is a little better; I have not thrown up, but I still don't have much of an appetite, although I am desperately hungry.  I am still very weak and dizzy, and working on managing my pain with these stomach wrenching pain meds that I can't wait to be free of.

 On the positive side, I am very happy with my range of movement so far.  There was a slight variation in the surgery this time.  For this procedure, there were no tendons cut!  He was able to go underneath them to perform the surgery, instead of cutting through and re-attaching them.  This has given me the ability to move my knee up and down, which I was unable to do for WEEKS after my first PAO, and only after a lot of practice. I can bend at the waist with more ease as well.  My mom and Jeff have put me in the wheelchair at night and pushed me down the street so I can get some fresh air too.

Ugh.  The depression is hard to conquer.  I have been faced with so much hardship the last couple years, and it just never seems to let up.  I am so blessed to have parents that love me and will do anything they can to help.  But they're not rich either, and I know it is not easy to financially support a grown woman with growing debt.  I am also blessed to have the support and love from a group of friends that are positive and passionate, and not willing to let me wallow in misery.  I have to remind myself it will get better.  It will.  It will.  It will get better.

Drugs and Physical Therapy. Day 3

Ok, they said the second day would be the worst, but so far the third day is the worst for me.  Yesterday was my second day, and I believe I was still coming down from the big time drugs from the surgery.  In the morning, the Physical Therapist got me standing up with the walker, walking around the bed, and sitting up in a chair to eat my breakfast.  Later that day, the PT came back and got me up, walking (more like scooting.  You move your good leg forward and kind of scoot or drag the operated leg behind it) and out into the hallway!  I remember during my last PAO, on my first day of PT, I stood up for barely one second before loosing all strength and falling face first into the wall in front of me, before I burst into uncontrollable sobs and was moved back to bed.  So this was a far cry from the first time.  

I have been in a cpm machine, that gently moves your operated leg from 0 degrees to 40-60 degrees.  I stay in it for 4 hours at a time.  I also do ankle pumps every hour on the hour, and a set of ten each of quad contractions and glut contractions once every few hours.  I also have a breathing machine that I use every hour to re-expand my lungs, I guess from putting my system to sleep during surgery.  I am still unsure of all the meds I am taking.  There are  a lot!  First off, are the pain meds, which will probably be the most important to you if you are in this situation.  I started off on a dilaudid(morphine substitute) shot every 2 hours.  This stuff does not sit well with me, so they gave it in conjunction with an anti nausea medicine.  Unfortunately, it doesn't matter, you will probably get nauseous and vomit quite a few times during the first couple days.  During the second day, I was on a liquid diet, and threw every bit of it up.  The dilaudid seems to be the drug of choice for this kind of recovery in the first couple days.  During my last PAO, I was put on a dilaudid drip that I could press every 12 minutes.    As  I said, this stuff really does not sit well with me, so I was very happy when late yesterday, I was moved up to taking Percocet orally, every 3 hours.  This seemed to help control my pain much better.  In conjunction with the immediate release pain killers ( dilaudid and percocet), are the timed release oxycontin that is taken orally every 12 hours.  This helps to control your base pain over a longer period of time, and is supported more by the immediate release drugs.  I did not have oxycontin during my first PAO, and I notice a huge difference.  At Kaiser, during my first PAO, after I was taken off the dilaudid drip, I was only allowed 5 mg. of Percocet every 4 hours.  This finds you in excruciating pain every 2 1/2 hours or so, and the staff treated me like a drug addict for asking for more.  You should not be experiencing that!!!!  Your pain should be controlled, especially in the hospital!  This is an extremely painful procedure and recovery, that will take longer to recover from if you are crying in discomfort the whole time.

Anyway, the other meds they give you are pretty basic.  An iron pill twice a day (for your blood), 2 senna pills ( to counteract constipation that will most definitely afflict you), sometimes a Tylenol ( which is extra weird right now, because the FDA has put a restriction on the amount of acetaminophen that one can take in a day, in conjunction with oxycodone, because it messes with your liver.  This has screwed up my Percocet system I was on, because it has acetaminophen, and apparently I've had too much of it.  Now my meds are all screwed up again).  Other meds include Lovenox ( a blood thinner that is given as an injection in the stomach ( you will also have to do this on your own for 14 days,  after you leave the hospital). Ambien at night for a sleep aid.  Hmmm, there are a couple others I can't remember right now.

Ok, Dr. Santore just came in to check on me!  He says I am doing well, although I am having some pain issues.  He is doing everything he can to control it now, including giving me ativan to calm me down and keep me from crying ( which has been coming and going frequently today). He said I had probably flushed all the tricks they use in the surgery room to keep you numb and pain free.  Now it is just a matter of working out a few kinks.

 I got my cathater removed this  morning, as well as my blood drain thing.  There is a tube that drains blood from the surgery site; not really sure what it is called.  Being cathater free is kind of nice, but I now have to get up to pee, which is a whole ordeal with many people involved.  I have a bedside commode, as well as a real bathroom very close, and I have used them both today.   I have to tell my cathater experience at Kaiser, simply because it was so ridiculous, and paints a picture of the incompetency of the nurses and staff at Kaiser. 

 First off, my surgery was  a lot longer for my LPAO because I had an arthroscopy at the same time.  I didn't get out of surgery until around 3 pm, and then I had to wait about 4 hours to get a bed.  I was in the recovery room, puking and miserable for hours, until they stuck me in one room briefly, where I continued to be sick.  Finally, they took me to my 'real' room, which was a section in a shared, teeny tiny room, barely big enough to house me, my IV and a nurse hovering over me, breathing on my forehead because the room was so small.  I was extremely ill and in tons of pain.  At 6am, the following morning, my catheter came out.  This was the dumbest thing ever.  First off, when you have an epidural, it puts all of your organs and spinal fluid to rest, so all the stuff sitting inside you just takes a deep nap.  It takes a while, a couple days, for this effect to wear off.  When the catheter came out, I was unable to control my bladder because it was still sleeping from all the meds.  This kept me from peeing for almost 12 hours.  The nurses didn't believe that I really couldn't go on my own, and would just hand me a bedpan and leave.  After PAO, you cannot lift your hips on your own to maneuver a bedpan under them.  You need assistance!  For EVERYTHING!  And besides, there is nothing coming out on its own this early after surgery anyway.  Finally, my stomach and bladder got so full that you could see it under all the swelling from surgery, and I was starting to get dizzy and sweaty and green.  The nurse finally agreed to put another catheter in, after me and my mom begged her to, for a couple hours before she gave in.  It took not, one, not two, but THREE failed cathaters and nurses, including the Charge Nurse to put one catheter on little old me.  All three  of them crammed around my little bed, pulled the curtain around them, and hovered and poked and prodded around my vagina like they were discovering a strange alien land.  It took three nurses, a flashlight, a manual, and what seemed like weeks of mortification to get another cathater in.  Once in, I pressed on my belly/ bladder and emptied an entire bag's worth of urine into that thing.  They had to empty it immediately.  Ahhh!  The stupidity was astounding at Kaiser.

OK, now I am starting to get mean.  My pain level is high, and the only thing that has kicked in is the Ativan, which is making it really hard to do anything at all.  I feel slightly stupid.

Third day blues! :(

Dys Hip

I'm going to keep this short cuz I was in surgery today and am too loopy to spend a lot of time online.  

First off, the hospital, Sharp Memorial in San Diego is like going to the spa.  They actually have an area called the SPA (Surgical Procedure Area).  The staff are so nice, the facillities are brand new, and I have my own room full of neat gadgets, including WiFi!  A far cry from the horrors that I experienced at Kaiser for my first PAO. 

The surgery lasted about 4 hours, and I woke up free of pain ( with the help of my oxycontin breakfast, epidural, and myriad of others drugs my anesthesiologist kept calling 'margaritas').  The day of surgery is pretty easy to deal with because you are still so drugged up.  As the big painkillers wear off though, the real pain and brain come back, and the severity of the situation starts to sink it.

Dr. Santore went to the waiting room to visit my parents after he was done.  He shook his head and said, "I don't have good news for you.........I have GREAT news!"  The surgery went very smoothly, and I did not lose a lot of blood.   I also forgot to point out in my (long) story, that when I had my LPAO, I also had an arthroscopy during the procedure, performed by Dr. Muldoon.  This is a common way for them to work together.  However, since I already had an arthroscopy on the right side, there was no need for another today.  It cut off 2 hours of surgery time, and will shorten my recovery time.  Yay!  

Wow.   Here I am again.  I feel like I am in much better hands and that I properly prepared myself for this journey/ recovery.

OK, I just hit a wall and need to pass out again. 

Pictures to come later.

  

The night before/ Hospital Bag

Usually the night before major surgery, you are instructed to not eat or drink anything after a certain time; for me it is 11pm.  Not even a breath mint or a sip of water!  Then, you have to shower with antibacterial cleanser like Hibiclens, wear freshly washed pajamas, and sleep on freshly washed linens.  Then again in the morning, the same routine, paying special attention to the hip area.  I have to be at the hospital at 5:30am for a 7:20am procedure. 

For me, being overly prepared and organized keeps my mind off the scary part of having surgery, and focusing on the getting better part. I wash, package and label everything; it helps others assist you better also.  Here is a list of all the things I packed into my hospital bag:

• small pillow
• glasses
• sturdy slip on shoes
• favorite lotion
• 1 tshirt dress/ pullover
• 1 long cotton dress
• 1 cotton bra tank top
• 2 pair of large boyshort panties ( for the ride home)
• 1 Dad's t-shirt for comfort
• 1 lg pair drawstring cotton pants ( very handy for toilet assistance; you can tie the drawstring to the walker, so you don't have to try and bend to pick up your pants.  It won't work, trust me.)
• face cleaning wipes
• travel Kleenex
• phone + charger
• 1 magazine
• 1 book
• favorite zip up sweater
• journal + pen
• camera
• laptop + charger
  
• small towel

Inside the bag I have a small bag of things I would like right next to the bed, for easy access at any time, day or night.

• eye mask
• earplugs
• mouthwash
• eye drops
• hand sanitizer
• Kleenex
• face moisturizer
• headband and hairties
• Lavender Oil ( because its comforting)
• dry shampoo
• mini hairbrush w/ mirror
• face spritzer ( sitting in the air conditioning for 5 days can be drying, so it is nice to have a fresh spritz to perk you up when you need it [my favorite it LUSH's Breath of Fresh Air])

At some point, you may be hosed off in the shower or wash up in a tub at the bed, so come prepared with a shower bag to include:

• travel sized shampoo/ conditioner
• face wash
• body wash
• toothpaste + toothbrush
• deodorant (if you care)

It's important to keep it simple and not bring too much "entertainment."  You won't care.  Turn the TV on and pass out.  It is OK!

Also, you may just want to stay in the hospital gown; dealing with clothes for the first few days is cumbersome, and unnecessary. You will have a catheter in, and you will probably start menstruating. The hospital has pads and special disposable panties for that mess.  Just leave your own at home, and go with the flow. ;)

I also highly recommend shirts with built-in bras, like a shelf bra tank top, instead of bringing a bra and t-shirt.  Less is more in this case, and you want to have ease of upper body movement, comfort and support.

OK, here we go.  I have successfully distracted myself all day! I'm so ready.  I'm barely even nervous.  At my pre-op today, Dr. Santore was shocked at how slow my heart was beating.  I'm mellow yellow.  Let's just get this over with!

My (long) hip story

My name is Alycia, and I was diagnosed with bilateral hip dysplasia in 2008 when I was 24 years old.  I had an arthroscopy on my right hip, and a periacetabular osteotomy on my left hip at 25.  I just turned 26, and am having another osteotomy on my right hip in just a few hours.

            I was checked for hip dysplasia at birth because both my mother and her sister (my aunt) have it.  The doctors said I was fine.  I grew up healthy and normal.  I took dance lessons as a child, and started performing in theatre as soon as I discovered it at 8 years old.  I performed all through high school and college, earning a bachelors degree in Drama in 2006.  I had been waiting tables through school as well, working 30 hours a week on my feet.  I was also living in San Francisco, without a car and walking everywhere.

             Right after I graduated, I was at work, standing in the kitchen, when I shifted my weight weirdly, and my left hip felt like it flew out of the socket to the other side of the room.   I kind of fell over and caught myself on the counter in a panic.  I was in so much pain, I could not put any weight on it, and had to call my boyfriend to cab over and get me.  I spent two weeks out of work in bed.  Uninsured, and freaked out, I called my mom to ask about dysplasia and her experience.  She was sure that I was fine.  I had been checked at birth! I was fine!   So I waited.  I went to an amateur body worker that manually lifted my leg out of the hip socket and put it back in.  I was sore for a few days and then felt better.  I brushed it off.

            After college I started working at a dinner-theatre-circus where I sang, danced, and served food and drinks, all while wearing a corseted costume and heels.  It was around this time that the sprained ankle madness began. I was on vacation in Costa Rica, in July 2007, where I took a step that felt like my hip, leg and ankle bones were unaligned, and fell flat on my butt with a bad sprained ankle in the middle of the road.  Just walking across the street!  It set our trip back a couple days, but I kind of just walked it off.   Then again, in late August, I was at the circus doing a Tango number, when my foot slipped right out underneath me and I slammed hard on my tailbone and sprained my ankle very badly again, right on stage!  I took 4 weeks to heal and time off work.

             It was around this time that I started noticing a deep pain in my right hip and bum. I thought maybe I had bruised my tailbone when I fell, and started to get concerned.  At first I could only feel the pain when I was lying down, or sitting.  When I slowed down.  I was so active and busy and running around dancing, dancing, dancing, that I didn’t really notice the pain until I stopped.  Then it started to get worse, and I was feeling it all the time.  Deep in my groin, down the side of the hip, and what I think are my iliopsoas were burning a dull constant agony that could not be tamed.   I was insured by Kaiser and started seeing a physical therapist.  Everywhere I went I told the doctors about my mother and her dysplasia.  I had intuition that this was what I was experiencing, but just wanted to find out absolutely, one way or the other.

            Of course, therapy didn’t help and I insisted on being referred to an orthopedist.  I was referred to someone at San Francisco Kaiser, who gave me an MRI and an arthrography on my right hip.  The doctor told me I had a tear in the labrum of my right hip and would need an arthroscopy, to be done by a different doctor.  He referred me out to San Rafael Kaiser to see Dr. Antounian.  I couldn’t get an appointment for 7 weeks.

            In the interim, I had another nasty fall at the circus, due to a small patch of spilled water on the stage.  I was running during the finale and flew face first towards the ground, before I stuck my hand out to catch myself.  Splat! A shock went from my fingers, all the way up my arm into my spine and neck, jamming my left arm terribly.  My hand immediately turned blue as it bruised and swelled before my eyes.  I was taken to the emergency room and splinted, before being sent home without broken bones. That was on December 30^th, so the doctor’s were closed until the 2^nd of January, when I was able to make an appointment and get a better understanding of what my care and rehab would need to be. 

            While at my appointment that day, an electrical fire started in the bedroom I rent in a flat of a large old beautiful Victorian.  When I came home, my room and everything in it had been eaten by fire.  I moved to a futon on the floor of our living room for three months while construction hammered away 7 days a week. 

            A few weeks after the fire, on January 25^th 2008, at my appointment with Dr. Antounian, I was diagnosed with bilateral mild to moderate dysplasia. He suggested an arthroscopy of my right hip as soon as possible to avoid any more damage to my already detached, “peel off” lesion of labrum mush.  This is when the freak out began.

            My family and life erupted with this news, and the challenge of dealing with it.  Where will the surgery be, where will I recover, who is going to pay or it, what does this mean in THE LONG RUN?  My mother decided I should not do anything until I saw her dysplasia doctor in San Diego, Dr. Richard Santore. 

            In June 2008, Dr. Richard Santore inspected my case.  He suggested that I have the arthroscopy on the right hip, to be performed by Dr. Muldoon, a partner in his practice.  He also discovered that my left hip is much more dysplastic than the right, so he suggested a periacetabular osteotomy (PAO) for the left hip, in the hopes that it would ease the load off my aching right hip.  Although I was skeptical, I trusted his diagnosis.  I didn’t understand how the constant pain, popping, and grinding going on in my right hip was better than the near nothing I felt in my left.  It just seemed topsy-turvy!  But the balance story started to make more and more sense, as I started to come to terms with the fact I was going to have the surgery no matter what!  The pain in my right hip was so bad, I just prayed that Dr. Santore was right and that I could have just and arthroscopy and one PAO. 

            I am skipping a lot of insurance and scheduling drama, to move forward.  More on insurance later.

            In August of 2008 I had an arthroscopy on my right hip, performed by Dr. Muldoon at Kaiser Otay Mesa.  The surgery was about 2 hours, and I was sent home the same day.  I slept for a couple days, and then started hobbling around.  Dr. Muldoon basically told me to sleep, and then to walk it off.   So I walked it off after two weeks or so.  I was feeling pretty good, although not solid on my feet.  Still a bit of pain, which I was told is normal for pain to last anywhere up to 6 months after an arthroscopy, partly because it causes a lot of nerve damage.

            Six weeks later on September 29^th 2008, I had a PAO on my left hip, performed by Dr. Santore at Kaiser Zion.  Nothing can really prepare you for how terrifying it is to wake up from this surgery and realize just how paralyzing it is.  At my pre-op for this procedure, Dr. Santore told me that during the first few days after the surgery, that I would have “buyer’s remorse. But try to remember I told you that you would feel that way, and I am telling you now that it will get better.”  And he was right. 

            Dr. Richard Santore is a wonderful surgeon.  He is very good at what he does, proud of it, and teaches others to be as brilliant as he.  My favorite thing about him though is his attitude.  He is honest, yet positive, and can laugh with you.  I have faint recollections of waking up after surgery to him bouncing up and down with an x-ray of my new left hip with four screws; pointing a pen at it and saying “They’re perfect! Better than perfect!”  Or when I asked how long I would have to wait to have sex, he looked me straight in the face and said “ One year,” before exploding in a fit of laughter. I’m sure my bones are soaking up all that positive energy. 

            My recovery was long, arduous, and slooooooww., but very well on my left side.  I started on a walker, with a home health physical therapist for the first couple weeks.  She didn’t know what to do with me, because very few people know what this surgery is!  I think finding a physical therapist for recovery from a PAO is harder than finding the right surgeon.  At least there are only like, five surgeons to choose from that are specifically trained in this procedure.  Physical therapists may not realize how sensitive you must be with recovery from a PAO. 

            At 8 weeks I started to see Chad Neubrand in San Diego.  He has worked with Santore’s PAO patients for 10 years.  He was extremely helpful, knowledgeable about my situation, and pushed me to places I was too scared to go on my own.   I have to say that he helped me get back to my life with confidence in my strength. 

            During my recovery, my right hip and thigh muscles flared up in an inflamed, pins and needles, stinging and burning sort of way.  It was the same pain as before, but worse, with the stinging sensation shooting down the front and side of my right thigh.  Dr. Santore said it was probably nerve damage flare up from the arthroscopy, and having to carry my full weight for the duration of my recovery.  He put me on Lyrica for a few weeks, and the stinging sensation went away completely.  It was back to the same old deep hip joint aching dull constant pain, and the popping grinding concerto. 

            At 12 weeks I graduated to a cane, and was cleared to move back to my apartment in San Francisco, but not back to work.   I was encouraged to rest, I think in hopes that the right side pain would start to subside.  It did not.  From January – April 2009 I was in a holistic all body approach physical therapy regime of swimming three times a week, PT Pilates twice a week, a PT Feldenkrais method session once a week, massage, acupuncture, and Chinese herbs.  The combination of all these helped me manage my pain, as well as strengthen my left hip, but it did not stop the constant, dull ache in my right hip.  [More on those alternative therapies later, as I believe in their ability to get PAO patients back to a “normal” balance after being imbalanced before surgery and during recovery] For me, though, the problem was much deeper in my right hip, and I began to switch the cane from my right hand to my left.  Walking came gradually, as I began to feel more unstable and rickety on my right hip.

            Finally in March 2009, 6 months after LPAO, Dr. Santore declared that I was HEALED! on the left side, but that we were going ahead with the RPAO.  I knew in my heart of hearts that this is what would happen.  I would have had a RPAO 2 years ago if he would have done it.  His resistance to this surgery was because of how mild the dysplasia is, especially compared to my left hip, which was much worse.  I don’t know the specific degrees.  But after an arthroscopy, a PAO and all the shit in between, I was never free of pain.  Never. 

            So here we are.  July 8^th 2009, and I go into surgery tomorrow morning at 5:30 am.  I am so ready; I would let them come to my house tonight to do it if they would.  Just fix it!