Orthopedic Nightmare

As far as orthopedic horror stories go, mine is pretty tame.  I’ve interned in ortho so I know how bad it can get, fractures not healing, infections necessitating amputation, multiple failed surgeries, etc.  Mine is nothing like that. . .  But there are varying degrees of nightmares, and while my situation could be much worse, it could also be much better.  I’ve only had one failed scope so far.  What makes my hip complex is that I have several borderline issues working in conjunction to create a dysfunctional hip.  In my case, the whole hip is more dysfunctional than the sum of its parts.

Most doctors don’t understand what is wrong with my hip, so they recommend another hip scope.  The scope doctors that could actually see what was wrong want nothing to do with me.  The dysplasia doctors that understand don’t really know what to do  with me.  Ehlers-Danlos and a previous failed scope make the issue even less clear.  This is why I had to spend months reading research articles and scouring hip forums to learn as much as I could so that I could make an educated decision on what was best for my hip.  I’ll show you a picture of my CT and you can take a guess at what’s wrong. I’ll give you a hint, the left hip is fairly normal while the right hip isn’t.

Anterior View of CT

Image

 

 

Posterior View of CT

Image

When this hip journey started 5 years ago I had no idea hips were so complicated.  I was 24 years old at the time, and was relatively healthy, or so I thought.  I had my right hip scoped in March 2010 with a doctor at UCSF who told me I did not have FAI or hip dysplasia.  I had no reason to question him.  I thought doctors knew everything, at least he knew a lot more than I did about hips.  The only thing he did was debride the labrum.  I had a very long recovery, longer and more painful than normal.  I was in a lot of pain until about 15 months post-op, and then my left labrum tore, making the pain on the right kind of negligible.  The left hip had FAI, and that is a story for another day.

I thought the right side was permanently fixed, but I was in for a nasty surprise when my right labrum retore in August 2012.  I was doing a passive external rotation stretch, aka the butterfly stretch.  Unlike my first labral tear on this side, this time it tore so easily I couldn’t believe it.  Within one week my pain shot up from 0/10 to 8/10.  I couldn’t sleep or eat because the pain was so bad.  I remember I had a doctor appointment that week and I was sitting on the floor bawling.  My blood pressure, which is usually 100/70 was 155/130.  It hurt like hell, and I knew exactly what it was because I had torn my labrum twice before this.

I had my left hip scope in November 2012 for FAI and a labral tear.  I joined some hip forums shortly after that for support.  I thought I had residual femoral-acetabular impingement on the right side, so some of the girls advised me to send my films to Dr. Philippon.  Dr. Philippon’s assistant called me and told me I needed a PAO, not because I had hip dysplasia, but because my socket was too anteverted, and it needed to be derotated.  I remember thinking, ‘What is he talking about?!’  Dr. Philippon seemed pretty certain I wasn’t a hip scope candidate.  He referred me to Santore, but Dr. Santore is out-of-network and like 400 miles away, so I didn’t see him.  After getting off the phone I cried for a few hours.  A PAO (short for periacetabular osteotomy) is where they break your pelvis to give your femur more coverage and/or reorient your socket, and it’s as gruesome as it sounds.

Instead I consulted 10 hip orthos (both hip scope and dysplasia surgeons) either in person or by film review, and 1 knee surgeon specializing in rotational deformities between Jan. 2013 to Feb. 2014.  I had consulted two hip surgeons prior to my first hip surgery, so that makes it a total of 13 orthopedic surgeons I either saw or did a film review with.  I got a lot of conflicting opinions, so it took me a while to find a doctor that was willing to help me and understood what was really going on.

I have EDS, a shoulder injury, and a degenerating spine in addition to my bad hip.  I was in excruciating pain as I took trips to Chicago, Boston, Tacoma, and New York City seeking answers.  Because we didn’t have much money, I traveled alone and carried everything in a backpack, so I only stayed in a hotel overnight and went from the doctor’s office directly to the airport.  Carrying a heavy backpack is not good for a shoulder injury, and sitting for long hours is not good for a back and hip injury.  On the way back home I was laying down on the dirty airport floor, and I didn’t even care.  It was grueling, but I needed answers, and I needed my hip fixed. Due to the EDS I recover badly from any surgery, so another failed surgery would be another few years of pain and disability.

This is a short summary of some of the doctors I consulted.  Dr. Kelly and Dr. Philippon both refused to scope me, which means I’m probably not a scope candidate.  They are two of the best scope surgeons in the world, so I took their advice seriously.  Dr. Philippon referred me to Dr. Santore, and Dr. Kelly referred me to Dr. S.  I had also contacted Dr. Ganz and sent him my films, but he’s in Switzerland so I knew I couldn’t have surgery with him.  Dr. Ganz is the godfather of hip preservation and the PAO that is done on adults is also known as the Ganz osteotomy because he created that specific osteotomy for adults with hip dysplasia.  That is how desperate I was for answers.  He suggested an FO and/or PAO based on the physical exam and cartilage damage present.  Dr. M wanted to do an open capsule plication, and if that failed an FO, and if that failed a PAO.  Dr. Mayo wanted to do a derotational PAO and Dr. S wanted to do a derotational FO and told me that hopefully I won’t need a PAO later on.  Two other scope surgeons I saw wanted to do a scope.  One scope surgeon said she didn’t do revisions, and referred me to scope specialists.  And two dysplasia surgeons told me I was a scope candidate.  A knee surgeon specializing in rotational deformities suggested an FO based on my angles.

So what was wrong with my right hip that had all these top hip surgeons giving me different answers?

  1.  Femoral version of 28 degrees, which is high, but they generally don’t start derotating femurs until version is greater than 30 degrees.  Normal is about 10-15 degrees for femoral version.
  2. Acetabular version of 29 degrees, which is high normal.  The normal range for acetabular version is about 15-20 degrees.  Not enough by itself to warrant a derotational femoral osteotomy.
  3. Lateral center edge angle (aka lateral CE) of 24-26, which isn’t dysplastic, but it exacerbates the borderline version problem. A normal lateral CE is 25-40, and 20-25 is mild dysplasia.  I have an Anterior CE of 28-30, when 20-50 is normal.  Let’s just say I don’t have much lateral coverage to spare, especially given the version issues.
  4. McKibben Instability Index (Addition of Femoral Version and Acetabular Version) of 57, and they generally recommend a derotational osteotomy when McKibben Instability Index is greater than 50-60.  The pathology of a high McKibben Instability Index mimics hip dysplasia in the fact that the femur lacks coverage and causes static overload.
  5. I have Ehlers-Danlos Syndrome, and my last hip surgeon did not even close the hip capsule.  It was deficient on MRI, exacerbating the anterior instability from version issues.
  6. I have a labral deficiency in the front where my last surgeon cut out the labrum and a hypertrophied and ossified labrum in the back.
  7. Due to the rotational issues, I have posterior impingement, which causes anterior sublaxation and posterior impingement in external rotation.  This is how I retore my labrum.  My first injury was from ballet.  Due to my excessive anteversion I lack external rotation and ballet requires extreme external rotation. I retore my labrum with an external rotation stretch.

It took a hip genius to look beyond the numbers to understand the true pathology of my hip.  Two of the scope surgeons I saw believed that my right hip had anterior pincer impingement so they were going to shave off bone from the lateral and anterior hip socket.  Then I might have been dysplastic.  It’s scary how easily I could have had another failed hip scope.  And failed scopes aren’t necessarily benign.  I had no arthritis in my right hip five years ago.  Now I have mild joint space narrowing apically and posteriorly.  My last scope surgeon did me a favor by not shaving off any bone.  But debriding my labrum (when it was healthy enough to be repaired) and leaving my capsule open destabilized my hip.  I started sublaxing a year ago, and that hurts really bad.  It usually happens when I get up from a sitting position.  I can hear a pop or a sharp pinch and it feels like my femur isn’t in the socket.  I hate it.  So when I get up from a sitting position I have to stick my butt out, turn my feet in, and waddle to get my hip to go back in.  My hip didn’t hurt too bad at the beginning of 2013, but it’s very painful and disabling now.  I have to wear ice-packs every night to sleep, and it’s still difficult even with that.

Hips are like a puzzle.  The great dysplasia surgeons are very good at hip puzzles, but there was not one solution in my case, so I had to choose which solution made the most sense.  I’m glad I had learned so much about hips on my own because I needed every bit of that hip knowledge to make the right decision for my hip.  Dr. M had a good understanding of my hip, but he was more conservative than Dr. S and Dr. Mayo, and I didn’t want to be conservative because I tried that already and it failed miserably.  I would recommend Dr. S and Dr. Mayo to everyone because they were just awesome.

Right now I’m battling Anthem Blue Cross PPO to cover Dr. S at an in-network coverage level because my only other surgical options are a scope, or an open capsule plication.  The rest of the hip dysplasia surgeons in the country are either less experienced than Dr. S or are also out-of-network with Anthem Blue Cross.  I’ll write about my insurance battle in another post because that is also a very long story.

Advertisements

2 thoughts on “Orthopedic Nightmare

  1. Thanks for sharing your hip history. It helps to see it all listed out. So your first choice is Dr. Sink for a derotational FO? Do you have a good web link describing that procedure? Good luck with everything! I’m rooting for you!

    • Thanks so much for the encouragement! Anthem is having me call up 206 ortho surgeons, and the address is wrong on half of them (which means I have to google them, find them, and call up to confirm that they aren’t anywhere near Sacramento), and another 40% don’t even do hip surgery, and another 9-10% can’t do the whole shebang. I have to sit to write all of it out, and my right hip hurt so much today. I got through about 30 :/ I broke down in tears. I’m probably going to have to delay the surgery. *sigh* In the big scheme of things another 2 months of waiting isn’t a big deal, but my right hip has really deteriorated recently :S And my sister’s wedding is in August, and I have a shoulder injury, so I’ll be in a wheelchair if my surgery is in July. Great timing XD I don’t mind that much. I just don’t want a 100+ people asking me what is wrong because the focus should be on my sister. Maybe I’ll make a sign to put on the back of the wheelchair XD

      Yes, my first choice is Sink. I didn’t mention this in the article, but I also have knee problems on the right side, and growing up as a kid I had knee problems just in my right knee and had to wear a brace for several years. We never figured out what was wrong with it, and I eventually grew out of it. My mom thought it was because I was growing so fast. I was 5’9″ at 13 years old and 6’0″ by 15 years old XD But your femurs are more twisted as a child, so in retrospect, I think that was the problem. Most people with twisted femurs have more knee problems than hip, so there are probably more knee surgeons derotating femurs than there are hip surgeons. The problem with knee surgeons is that with the exception of Tietge, who is retiring, they don’t understand the hip as well as a hip preservation surgeon or the labrum. They can’t repair labrums or do labral grafts, and they can’t remove posterior impingement. And my hip didn’t hurt until my labrum retore, so if I got my hip fixed but still had the labral tear, I would still be in a lot of pain :/

      My biggest reservation about getting my femur derotated is that my tibia might then end up needing derotation because it’s even more twisted than my femur. I walk slightly pigeon toed on the right, so Sink thinks my tibia won’t need derotating. I’m all for less surgery. If it isn’t broke don’t fix it. But if the tibia causes issues later on, I know of an in-network knee surgeon that could do it in Texas, but he doesn’t repair hip labrums. Mayo actually never followed through :/ I think it was partly due to the big move. Last I heard he was trying to get my files from Multicare. I still think he’s brilliant, but it just didn’t work out. If I were in Washington I could just schedule another appointment, but those long distance trips are brutal. I’m doing a film review with Stover as sort of a backup plan. I have faith this will all work out somehow. Just have to take it one day at a time.

      Here’s an information pamphlet about femoral osteotomies in children: http://gait.aidi.udel.edu/procedures/femoral_osteotomy.pdf I believe the procedure is done in children for hip dysplasia more often than it is done for just rotational issues. I never asked, but I think the procedure is more common in children than in adults. Here is a page that actually has more info on FO’s than most educational websites: http://health.howstuffworks.com/diseases-conditions/musculoskeletal/hip-dysplasia9.htm

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s