We Are Not Our Bodies

It's taken me a day and a half to bring myself to write this post. As I sit here, trying to put into words how my life has been completely turned upside down, I can't control the tears that are running down my face. It's impossible to truly describe how I feel right now. I feel so incredibly alone and isolated. I feel trapped in a body that disgusts me. I want to scream and claw my way out of it because it's not me. It's not me. I am a vibrant person. I am the person that makes you wonder how anyone could have the kind of energy I do. I'm vivacious, light hearted, hard working and driven. I want be 70 years old and have every inch of my body aching. I want to say that I truly lived my life to the fullest. But right now it feels as though I've just stopped with the world still spinning around me. I'm just numb.

I went to Vail on Wednesday as scheduled for the battery of pre-op requirements. After a slight scheduling change, I was able to work all night on Tuesday, take a 30 minute nap Wednesday morning, and then get right back on the road. The team at Dr. Philippon's is awesome. Not that I didn't do my fair share of waiting but it doesn't bother you so much when you know you're being treated by the top doctor in the country. After arriving at 10:45, I went through evaluation by the athletic trainers who fitted me for my hip brace and crutches, measured leg circumferences and lengths from various points, and took me through a battery of strength and range of motion assessments. I had a 3D MRI scan and was given a baseline strength and conditioning assessment by physical therapy. I met with Dr. Philippon's two RN's who are also RNFA's (first assist nurses) and his fellow working under his tutelage. The nurses and the fellow initially had me concerned because they said that Dr. Philippon did not normally do hip surgery if a cortisone injection had been placed in the joint in the last 3 months. But when I finally met with Dr. Philippon at 6pm, he assured me that it would be fine. He did an exam and said that in addition to having the large labral tear, I did have the CAM type of femoral acetabular impingement, which is where the head of the femur (the ball part of the ball in socket joint) has excess bone growth and is pinching in the joint. The plan was to shave down a bit of this excess bone and repair the labrum. I discussed with him the fact that the worst of my pain felt like it was coming from the sitz bone and radiating down my hamstring. He pulled up my MRI's and did some measuring before concluding that also had something much rarer called ischiofemoral impingement. In the picture below, you can see ischiofemoral ligament. What happens in this type of impingement is that the distance between the lesser trochanter, a small notch on the inside of the femur bone and the base of the hip bone, also known as the pubis symphisis, is too narrow. This causes pinching of the ligaments, muscles and nerves that run in between.

Dr. Philippon said he would fix this problem by shaving down a bit of the hip bone as well as the lesser trochanter. This would be a more extensive surgery, but it wouldn't impact my recovery time. Grateful that he was able to pinpoint the causality of my hamstring pain and muscle spams, I thanked him and his team, and started on the 3 hour drive back to the Springs. I had a lot to do on Thursday to get ready for the surgery and to go home directly after for the holiday. 

About an hour or so after leaving Vail, my phone rang. It was Penny, one of the nurses from the clinic. She said that while reviewing the cases they had seen that day, the doctors had done some additional measurements on my femur and were concerned about the significant amount of internal rotation it had. The doctors wanted me to return first thing Thursday morning and undergo a 3D CT scan of the femur as MRI scans aren't as accurate as a CT when it comes to measuring bone. The concern was that the lesser trochanter may fracture when they shaved it down, and if it did, it would require a screw or two in order to reattach it. The CT scan would indicate whether or not there was a good chance of it fracturing and if there was, they would postpone the surgery for a couple months in order to let the cortisone wear off, as it would impede my body's ability to fight off an infection in the unlikely event one occurred. 

When I was a toddler, they put inserts in my shoes to correct toeing-in or pigeon toes. When I was 14 or 15, they took x-ray's of my femurs because my knees were still severely turned in. They said that yes, my femurs were rotated inward, but it wasn't a big concern and the surgery to correct it was massive, invasive and had a 25% death on the table rate due to blood clots. So the issue, which I had always assumed was mainly just cosmetic, was never addressed again. Babies are normally born with 30-40 degrees of what is called anteversion, or the turning inward of the femur bone. By the time growth is completed, boys average 8 degrees of anteversion and women 14 degrees. Penny said that depending on which doctor was measuring the MRI's they were getting 32-38 degrees of anteversion. Here's a picture from a textbook describing femoral anteversion. I can do all of these positions very comfortably. In fact, I can get my feet to no more than about 3 inches off the floor doing the position in the lower picture and in the upper left picture with the patient doing what is called W sitting, I can lay my back completely on the ground in that position. Alternatively, I find sitting 'Indian style' very uncomfortable and am always in trouble in any type of ballet or off ice training class for not being able to keep my knees over my toes and for lack of turn out. 

Penny said that they were hoping the CT scan would come back with less femoral anteversion, perhaps around 22 degrees. If that was the case, they would simply proceed with the surgery as planned on Friday. If it came back as 32-38 degrees like the MRI indicated, they would need to evaluate whether or not the lesser  trochanter was going to fracture. If it looked strong in the scan, they would do the surgery on Thursday afternoon just in case it fractured and required screws. If it looked like there was a good chance it would fracture, they would postpone the surgery for a couple months. So I raced home, quickly packed for the next week, loaded Christmas presents into the car, did laundry and tidied the house. I slept for a few hours and went to the rink for the 6:30am session on Thursday morning for what I was assuming would be my last skate for a while. By 7:30 I was in the car heading back up to Vail. They did the CT scan and I waited for the results. Dr. Philippon's fellow came out of surgery to discuss what they read on the CT scan. Us medical people get pretty good at hiding emotions such as sadness or shock from patients. This poor guy, though, who couldn't have been more than 5 or 6 years older than me, couldn't hide his shock or how badly he felt for me as he told me what the measurements came in at. The CT said that my left femur is rotated inward 50 degrees. Here's a picture of a normal femur bone versus an anteverted femur bone, which is what mine is. 

Dr. Philippon did not want to repair my torn labrum because it has such an incredible amount of pressure being put on it due to the torsion of my femur bone. If they repaired it, it would most likely tear again very quickly. The diagnosis only gets worse from here. Femoral anteversion affects both legs except in very rare cases, and I'm certainly not one of those. While they didn't fully catch my entire right femur in the scan, they said it looks about the same as my left. My own research in the last day has indicated that except in extreme cases, both legs are within 8-10 degrees maximum of rotation difference. Therefore, my right leg is somewhere between 40-60 degrees anteverted as well and it's very likely that I actually tore the right labrum last summer when I had about 10 weeks of the same kind of pain before it finally subsided. Penny explained that they would send my scans immediately to a specialist in California to review. The team was 95% sure that this doctor will say that I need a major surgery called a derotational ostotomy, to which, through my tears, I immediately said 'hell no.' This picture sort of illustrates what this surgery would do.

This surgery involves cutting the top of the femur bone, turning it out in the correct rotation, about 14 degrees of internal rotation, and then reattaching it using rods, plates and screws. Since both of my femurs are affected, they mostly likely could not just fix one. They would have to fix both. On top of that, I would still need the labrum and FAI repair.

Obviously this has been shattering news. They say medical personnel always make the worst patients because we know too much. Having this kind of surgery absolutely scares me to death. A million questions are racing through my mind. How will I possibly pay for a trip to California to have this surgery done? I can't be out of work for 6-8 weeks so they would have to fix only one leg at a time...meaning that I would need two trips to California. I definitely can't do this one on my own, but my mom has all of the kids at home to take care of and her own financial responsibilities. And what about needing to still have a third surgery for the labrum and FAI repair? How long will it take for me to be able to walk like a normal person again? Will I be able to skate again? Is this going to take a full year out of my life? What about the fact that I don't want 6 inch scars down my legs with three pounds of metal in my body and a card to present to the TSA when I get on a flight that says 'no I'm not trying to blow up a plane, I was just made in a mold that was broken'?! I'm only 26! I have my entire life in front of me!

On the other hand, as a very wise nurse friend pointed out to me yesterday, I need to think about what my body is going be like in 20 years. I've had knee tendinitis since I was 15 or so. I've had low back pain since I was 19 and the last three discs in my back are compressed and lacking in disc fluid. My entire back, particularly the lower half, is extremely hypertonic, meaning that the muscles are rock hard and sometimes spasm, to the point that it has caused some muscle induced curvature changes in my spine, not to be confused with scoliosis. The MRI indicated I already have mild arthritis of the pubis symphisis (the lower portion of the hips) on both sides. All of my life I've been told that I have tight hip flexors, tight hamstrings and tight IT bands. After showing Dr. Philippon's team some videos of what I do on the ice, they flat out said that I'm actually very flexible and it's pretty amazing I can do what I do on the ice considering how turned in my femur bones are. It also explains why I can't do spread eagles, Ina Bauers, hair cutter spins and Biellman spins. I've always said I'm 'stuck' and apparently I'm really not exaggerating. In all honesty, it was also pretty unlikely that I've achieved what I have on the ice. Jumping through double Lutz, pulling off intricate footwork and multiple position combination spins probably should not have been possible given how twisted my hips and legs are. I suppose I should be really proud of myself, but right now I just want to scream, 'Get me out of this body!"

I don't know what comes next. Penny said it will take 3-4 weeks to hear from the doctor in California. In the meantime, I could skate if I wanted to but the more I skate, the faster the cortisone wears off. And I'll need to save every dollar I can for what is probably going to be a very expensive next few months. In addition to the expenses of travel, I don't have any PTO benefits with my job, meaning that every shift I would miss at work is missed income. I'll have to pay my insurance deductible twice now. I've hit it this year now with all of the scans etc, and I'll definitely hit it in the new year as well with the impending surgeries. The ice is the one place that I can leave everything else behind for a little while and just focus on what I love to do. Flying across the ice, the cold wind in your face, feeling free. Weightless. Beautiful. But right now, looking across the room at my skating bag is a painful reminder of how messed up my body is and how it won't do what it's supposed to. Then again, just looking at my legs stretched out across the sofa is sharp reminder of the new reality that I can't run away from. Thomas Gray had it right when he said, "Ignorance is bliss."