Two Weeks post op

Hey Everyone!

So in a few hours I will be 2 weeks post op.  It seems odd that I am so far out from surgery in some ways as I am still stiff and sore, but in other ways I see how much I have improved.  The two days I was in the hospital I could barley push myself upright!  Now, I move in and out of bed pretty well, I can lay on my non-operated side for a bit as well as my stomach.  It feels sooo good to be able to move around a little bit.  I had my first physical therapy appointment yesterday and that went well.  The PT just covered basic stuff like ROM, health questions, etc. and then gave me some isometric exercises to do.

Other than PT, I do not do much.  I do the basic after surgery, at home alone, protocol, which is watching Friends, Everybody Loves Raymond (who does not love the classic sitcoms!), as well as some reading and keeping people updated on my surgery.  So far the pain is not too bad, although the last day or so has been worse than normal, but even these 'bad' times are manageable.  I got my surgery report and I got 5 screws put in.  Dr. Buly was able to change my anterior central edge (CE) angle from 11 degrees (normal is 25-40 degrees) to 37 degrees!  I was lacking a LOT of anterior coverage, so hopefully thats all fixed now.  Other than that, the surgery report did not say much other than they had a hard time getting my socket loose to move it, but after some extensive cutting, it came loose.

So I just wanted to do a quick update.  Things are going well and pain is well controlled.  I should be getting a CD with my images from the hospital soon and once I do I will post before and after pictures of my hips.  Hope everyone else is pain free and enjoying some nice winter weather (ie, snow!).

Edit:
So yesterday I got my CD from HSS with my images, so here is my post op x-ray

A week post op

So, I am sorry that it has taken me so long to get an update here, its been a long week, but good, week post op!  I guess I will just start from the beginning as far as what I remember immediately post op :)

So my surgery was scheduled for Nov. 21st at 8:30 am at the Hospital for Special Surgery.  We had to be at the hospital at 5:30 am!!  When we arrived I checked in and got signed up and then pretty quickly they took me back for surgery.  In the surgery waiting room I changed into a gown, put on those lovely socks with the rubber on the bottom so that you do not fall sliding around, and then I was suppose to try and give a urine specimen to make sure that I was not pregnant.  Well, of course I could not pee, after an hour and a half of trying, I finally gave up and they tried to take blood instead.  I am notoriously bad at giving blood, so of course this turns into an ordeal of poking me three times just to get some blood.  Finally they do and that part is over.  Also during this time a nurse (who had a British accent and insisted on calling me Sarah Jane) was getting me prepped with an IV and 2 PA's came in to get some history and check my range of motion, etc.  Then the good stuff started, Dr. Buly showed up as well as the anesthesiologist.  Dr. Buly signed my hip and my wrist band and then after a few minutes we were off.  I was taken down into the OR (which is freezing) and I moved over onto the operating table, was asked a few questions by the anesthesiologist, medicine the stings was put into my IV and I was out.

When I woke up I was in the recovery area, which was basically like a really long, extra wide hallway, with something like 50 beds in it and a curtain separating each bed.  I woke up pretty quickly but in a lot of pain.  I had a pain pump that I could press a button and every 10 minutes it would give me medicine.  At the time every 10 minutes seemed like a lifetime!  I was surprised by how much pain I was in given that I thought that I was suppose to have an epidural.  It was unlike my last epidural with my scope that literally had me numb from the waist down when I woke up.  It took about an hour for my pain to get under control again.  My mom and Adam were able to visit me every 2 hours for 15 minutes while I was in recovery, which was nice, but did not seem long enough.  There was some trouble finding out if I would be able to get a room or not that night because I guess they were all full, but luckily around 9PM I got a room and was taken upstairs for the night.

The first night my pain was well controlled with the pain pump and I slept fairly well.  The next morning I was up around 6 am because thats when the hospital staff starts to really check on you and get things rolling for the day, like allowing you to bathe, etc.  I had a bunch of different people throughout the morning come into my room for various things, checking vitals, my pain pump/epidural, my wound drain, etc.  I tried to press the pain pump as little as possible because I wanted the epidural out as soon as possible because once that came out I could get my urinary catheter out, which was annoying me.  So I was started on oral pain medication later that morning and that evening, around 6 PM the epidural came out.  By late evening the first day I had everything unhooked except the urinary catheter, which was scheduled to come out the next morning, early.  I also had PT the first day too, which I was REALLY scared about getting out of bed and walking, especially being hooked up to all the machines that I was.  But it really was not too bad, my PT was amazing.  I was able to get out of bed and walk to the bathroom that first afternoon, without too much issue.  My mom and husband were there during all the visiting hours, which were from 11 am to 9 pm.

On the second day, I got my catheter removed at 6 am and at that point I was officially off all the machines!  I was able to sit up and eat breakfast in a chair that morning, as well as lunch, which was quite an accomplishment.  Most of the pain that I had was trying to sit up and scooch my butt over to the edge of the bed.  Whenever I tried to lift my pelvis off the bed, it felt like my right side was going to fall off!  Once I was standing I was fine and good to go.  Surprisingly enough, on the second day I passed PT (which consisted all of walking down the hall, going up and down some fake stairs, and then back to my room.  After PT, the ball started rolling for me to get discharged!!  We were super surprised how early I was getting discharged considering we were told it could be as many as 7 days in the hospital!  So about mid afternoon on my second day post op, I was released from the hospital!

I rested on day 3 at the apartment in NYC and then on day 4 we started our travels back to Michigan, which was about a 14 hour drive, since we had to stop every 2 hours for me to get out and walk to prevent blood clots.

So this post is getting pretty long already, but needless to say, we made it safely back home on day 4, just in time for my mothers 50th birthday and Thanksgiving, which is today :)

In the few days that we have been home, I have felt really good for the most part.  I have been getting some back headaches from some of the medication, but we were able to switch it up and the headaches seem to be getting better.  I am sleeping a lot and drinking a lot and thats about what my days consist of so far.  I will update more after I see PT later this week.

Thanks for reading!

The day before surgery with Dr. Buly at the Hospital for Special Surgery

Hello Everyone!!

So tomorrow is the day, I will go under the knife for my first PAO and my 4th right hip surgery.  I am still in shock with how I got here, it all kind of seems like a bad dream, but in the end I hope that my long hip ordeal can provide a learning experience for anyone else suffering with hip pain.

Yesterday I had my pre-op appointments which were no big deal.  Basically they went over all the usual stuff with me (height, weight, blood pressure, etc.) and then I had to get some blood drawn.  I was worried that my surgery might be cancelled again due to high CRP and Sed. rates but the pre-op doctor that I saw said that my numbers from the end of Oct. were no big deal and he was not concerned so that made me feel better.  The only think different this time from my other pre-op's was that they did an EKG which I thought was pretty neat.  I guess it did not show anything bad cause I got my surgery time.....8:30 tomorrow morning (Thursday, Nov. 21st) and I have to be to the hospital at 5:30 am!  I am glad that its early though cause otherwise I would be up all morning just worrying about surgery.

Today my husband and my mom and I, we went on a boat tour of the statue of Liberty and lower Manhatten.  It was really amazing to see all these sights!  Its stunning the amount of people and the history that is here!  We had a great time, but its about 2 in the afternoon and my hip is pretty much done with sight seeing and ready for a rest.

So, thats the story so far.  New York is amazing and so far our trip has been great!  I hope surgery tomorrow follows that trend as well.  I will update my blog as soon as I get a chance after surgery.  Until then, safe hip travels everyone!

1 week from PAO surgery!!

Here we are a week out from my PAO surgery with Dr. Buly at HSS in NYC!!  I thought that I would be getting really nervous, but I am not.  Life here at my parents house just keeps rolling along with the kids' basketball games, home work, and plays so there is not much time for me to freak out.  Adam (my husband) has been working a lot so I have not seen him much and he is normally the one that I would complain to about being nervous.  I suppose its a good thing that I have not had a lot of time to focus on the surgery itself!  Too much thought about things like this will drive a person mad.  So, in 4 days we will pack up the van and be off to NYC!!

When the worst in life brings out the best in people

Its kind of funny how some of the worst things in life turn out to show you the best in people.  This upcoming PAO on the 21st will not be the worst, nor the hardest thing I have ever gone through in life, but its one of those really hard things that makes you wonder, why me?  Why is it that I am going through all these surgeries and all this pain?  But its also these moments that shows you the best from the people in your life.  I consider myself to be one of the luckiest people on earth when it comes to family.  I have known my entire life that my family will always be there for me, no matter what.  Wouldn't matter how big of a mistake I made, or how much I hurt the people I loved the most, they would always be there for me.  I know that not many people in the world can say that, so I am beyond lucky to always have this support system.  Then you add in my husband and his family, plus friends, and compiled are some of the best and most amazing people on this planet.

The prep for this surgery alone has brought out the absolute best in all the above mentioned people and I have not even had surgery yet!  Since my house in Houghton, MI is an older home with steep stairs and the bedrooms and bathrooms on the top floor, my mom and I knew as soon as we were told about needing a PAO that I would not be able to recuperate at my house.  So that meant moving in with my parents, for 3 months!  Now, for a normal family this would not be a big deal, but my family is far from normal.  Four years ago my parents took in three foster children who were left by their parents at the preschool my mother used to work at.  For the past four years my parents have cared for a loved these kids as if they were their own.  My sister and I too have welcomed them into our lives without missing a beat as if they were always our siblings.  To us, anyone in need was welcome, and these kids were in desperate need.  So obviously with 3 kids, my parents have a full house, but that did not matter.  Without missing a beat my mother started planning for my husband and I's stay at their home for a few months.  Moving around furniture, making 8 hour trips up to Houghton and back home with our clothes and dog, you name it, my parents did it.  Another saving grace for my husband and I is that my in-laws own some hardware stores in the area, thus my husband is able to work while I recover.

If these things were not enough to make you thankful for wonderful family, the next piece of amazing news will make you thankful for friends!  After I called my friend Chelsea, who lives far away, and had a good cry with her on the phone about my surgery situation, she also got to work seeing if some of her family's friends had a vacant place for us to stay in during the week of my surgery in NYC.  Amazingly enough, her father has a friend who has an apartment in NYC that she offered to me, my mother and my husband while we are in NYC for my surgery, FOR FREE!!!  I was literally in shock when Chelsea told me about this amazingly gracious person.  I mean, who offers their home to complete strangers for an entire week?!  I pretty much just started crying.

Since that time I have been in contact with the owner of the apartment and she is the nicest lady, even sending me pictures of the apartment and the view!  Its times like these that I realize, I am the luckiest person on earth.  Yeah, these surgeries suck and yes, I am not happy about it, but if there was ever a lesson to be learned here its that I am surrounded by one of the best support systems ever.  So this post is a shout out to all those in my life who have cared for me in ways that I can never repay.  Thank you, from the bottom of my heart, thank you.

Sarah

When life gives you lemons...

So these last few weeks have been really difficult.  It was such a shock hearing that a need the ultimate hip surgery to fix the real problem with my hips.  I feel betrayed by the medical community and frustrated with the surgeons I had seen.  For so long I was told that nothing was wrong.  For example, the first surgeon that I saw in Marshfield, WI after I got my diagnosis told me that since I had good range of motion still that I did not have FAI and that if I continued to have pain that I should go back to my general practitioner.  Well of course I was going to continue to have pain, I had already been in pain for 5 years!  The blatant dismissal without any further investigation was heart breaking for me at the time.  I did not give up on my hip though and pursued a second opinion with the surgeon who would eventually do my first scope.

Looking back at all the surgeons I saw, all the PT that I did, and all the general practitioners that I went through, all the while hoping that maybe, just maybe, this surgeon or doctor or PT would make it all better, once and for all.  Because of the lack luster care from the medical community, my distrust in doctors has gown exponentially.  I always want second (or third, or fourth) opinions about things.  I do a ton of research about everything now before I trust anything a doctor says to me, which really goes against everything I was taught growing up.  I was taught that the doctor knew how to fix you when you were sick and that was the end of it.  There was no questioning him/her, it just was.  Which is why I think that this was all so hard from the beginning.  To question that a surgeon could be wrong was just not something that I had heard of, but it is now something that is second nature to me.  Which, when you think about it, is a great thing.  Critical thinking should always be used in all things, but to have to question someone who is suppose to make you feel better, who is suppose to be on your side, seems maddening.  Add to that the hundreds of dollars you get the privileged to pay for their 'opinion' and I sometimes feel insane!  If I wanted to discuss opinions then I would just have a heated conversation with certain family members and that's free.  But to pay for the privileged of someone to tell you that your wrong about your pain and discomfort seems barbaric in our modern society.  But I shall digress from this conversation seeing as I could go on forever about the American medical system and the insanity of it all.

What I really wanted to write about tonight (or early this morning) was how much I have learned and how I want to share what I have learned with everyone!  I never want someone to suffer like I have.  I never want someone to think that they are crazy because some untrained doctor or radiologist cannot find the correct diagnosis for their pain.  In the past week I have been sharing my story high and low, in all corners of the internet trying to get the word out about FAI, labral tears, femoral anteversion, etc.  I see posts on Reddit about groin pain and how they are told is a hernia or a strained muscle and I can only shake my head because I know that at least 10 of those 20 posts I saw are going to be misdiagnosed and most likely have either FAI or labral tears but they will suffer in pain until someone somewhere down the line makes a correct diagnosis.

What happened to me should have never of happened.  Doctors, PT, nurses, etc all have a duty to patients to not give up on them until finding out the true reasons for someones pain.  For $500 for an initial consultation with a surgeon, patients deserve more than 'I do not know, see someone else' and pass the buck onto a different doctor.  Its maddening!  And its awful that its allowed.  Everyday people are passed off and shoved away when answers are not easy to find.  Is that was med. school is teaching students, how to pass the buck without follow up?!  I find this unacceptable.

But, given my situation I want to make the proverbial lemonade out of lemons.  I want to share my story in as many places as possible, with as many people as possible to get the word out about FAI, labral tears and how finding a well educated and trained surgeon is the single most important thing you can do for your care.  It does not seem like a big deal when you are looking at your first scope because if your are anything like me, you'll think 'I am not special, I do not need a "top" surgeon to fix me, I just need someone who is a surgeon', but I beg of you, please do not fall into this trap.  While I did not have any glaringly obvious done deformities, like dysplasia, I have a ton of rotational issues, none of which were found by my first two surgeons because a rotational study was not done.  Imagine how much pain and money and heartache would have been saved for me if my first surgeon had the training and forethought to order a rotational MRI or a CT scan?  I even had family members encouraging me to see the hometown surgeon because "You don't need the best, you just need someone who can get the job done".  Oh how wrong they were.  I think that hip surgery is often mistaken for knee surgery, especially scopes, in the sense that its easy, its done routinely, and often has very little complications.  But the hip is a very DEEP and hard to reach joint, something that the knee is not.  Thus access is tricky and limited.

So to wrap up this late night rant, PLEASE go to the best surgeon you can afford.  Find a surgeon who has trained at top hospitals like the Hospital for Special Surgery, or who has done a fellowship with top scope surgeons like Dr. Philippon, Dr. Kelly, and Dr. Byrd.  ALWAYS ask for a rotational study to be done either through an MRI or a CT scan (this is more accurate).  Then get a second opinion and a third opinion.  Many surgeons like Philippon and Kelly do free film reviews, take advantage of this!  Send in your films.  And last, but not least, please educate yourself on these things.  Know what would make you a good scope candidate and what would not, know what your angles are (alpha angle, CE angle, version angles are all important) and if your surgeon does not know, run for the hills, run as far away from that surgeon as possible!

So I will leave you all with that note.  I will be spending a lot of time on the internet these next few weeks, trying to spread my story far and wide so that I can hopefully help just one person avoid the heartache and pain that I have endured due to the medical communities error.  If your reading this, please share with anyone you might know suffering from hip/knee/lower back pain.  You may just save their sanity!  Thanks for reading!

Consultation with Dr. Buly at HSS

Its been a while again since I have updated my blog because I was waiting until after my appointment at HSS with Dr. Buly which was a week ago today.  I consulted with Dr. Buly originally for my femoral anteversion which was found on my pre-op MRI in Dec. of last year.  I was told that it may or may not cause continued issues, that only time would tell.  Well, before I had surgery in Jan. I told myself that I would not wait longer than 6 months to get this checked out.  Dr. Philippons team wanted me to wait a year before consulting with someone, but I had already waiting long enough for answers, I was unwilling to accept waiting any longer than 6 months from surgery.  So when I was still in some pain in August, I booked an appointment with Dr. Buly.

The few weeks leading up to my appointment with Dr. Buly I was not in a lot of pain and even contemplated cancelling, but I didn't as my mom had already set up time to come with me, etc. so I kept my appointment.  My mom and I decided to drive out to NY seeing at plane tickets were almost $500 per person.  Add that too a cost of cab fares and hotels and for a 2 night stay in NY city it would have cost about $2,000.  So driving and staying north of the city at a campground was the cheapest.  It was a beautiful drive out to NY and the campground that we stayed at was perfect.  Since we are not city people, it was nice to be able to leave the city after a busy and exhausting day at the hospital.  So we left Traverse City (where my parents live) and drove out to NY on a Sunday as my appointment was on Monday.  It was a beautiful drive and PA is so pretty!  We got to NY around 6PM and had just enough daylight to set up the tent and then fall asleep.

We left for the city pretty early the next morning even though my appointment was not until the afternoon so that we could look around the city a little.  So driving into the city was not nearly as bad as I thought that it was going to be and we got lucky because the president was at the UN, only about 10 blocks away, but FDR drive was not shut down, so we were not effected at all.  We got a little lost coming into the city, but the GPS put us back on track and we got to the hospital without a problem.  After parking we walked around a little through some of the neighborhoods and saw a cool collection of Buddist art at Sotheby's, even though scary looking men in suites follow you around.

After looking around for a bit, my hips were getting tired so we ended up back at the hospital early so I just got checked into x-ray and had those done as well as my CT scan.  After that we went to Dr. Buly's office to wait for my appointment.  Dr. Buly and his assistant Elaine are so nice and personable, it was unreal.  There were no fellows, or nurses, or other staff, it was just Dr. Buly and Elaine, it was so nice to spend so much time with the actual surgeon!  Dr. Buly, after looking at my x-ray and CT images, recommended a PAO (periacetabular osteotomy) and an FO (femoral osteotomy).  I was really shocked by this recommendation because never before had hip dysplasia been mentioned to me, which is usually what PAO are used to fix.  But I guess after all these surgeries, the rim trimmings done had actually made my hip slightly dysplasic, which when combined with my femoral anteversion means that there is not enough acetabulum to cover the top of the femur head.  Dr. Buly then called his colleague, Dr. Helfet, into the exam room so that he could look at my images and examine me to get his opinion.  He agreed that a combination PAO and FO would be the best course of action.  Dr. Buly also wanted me to consult with Dr. Sink to get his opinion about the PAO.  So we stayed in NY an extra day so that we could see Dr. Sink on Tuesday.  Dr. Sink basically agreed with Dr. Buly and Dr. Helfet.

Today I got the results of my MRI and CT scan as well, which shows excessive femoral anteversion on both the left and the right, as well as excessive tibial torsion externally.  The combination of these is known as miserable malalignment syndrome.  I also have a labral tear and FAI in my left hip with will have to be taken care of at some point.  My MRI showed a lot of cartilage wear and tear on the front of both hips, although the right hip is so much worse.  I was told that if I do not go through with surgery for the PAO and FO I will most likely be looking at a total hip replacement in 5 years.

So, now that this post is getting really long, I am now in the process of booking my first surgery with Dr. Buly for the PAO and FO.  I am really just super disappointed and scared.  3 years ago when I had my first scope, this was never suppose to be an issue, but here we are, staring down the barrel of at least 3 more surgeries to fix all of these issues.  I am still in shock I think, but time will help me get over it I am sure.  Anyways, no good news this time, but I will keep everyone updated as surgery gets closer!