Answers...sort of...

It's been a while since I've posted an update. I had every intention of posting after my appointments at the Mayo Clinic and Boston Children's Hospital but unfortunately, I didn't end up walking away with a game plan immediately from the appointments. It took a couple weeks for everything to fall into place but finally, finally, I can say that I am going from point A to point B!

The trip to Mayo Clinic was less than productive. Since it is the Mayo Clinic, I'm sure they see the sickest of the sickest patients all day so to have me trotting in on my own two feet logically prompted the question of, 'and you're here, why?' Not a great question to ask someone who has just spent the majority of the last two days awake and has been waiting three months to be seen by a doctor who knows something more than Google about femoral anteversion. It is best that we simply try to forget that I traveled to Minnesota and we fast forward two days to my trip to Boston.

Dr. Michael Millis and his team at Boston Children's Hospital were wonderful. Over two days I spent probably close to four hours with them. About the only thing I didn't do for them was skate. After all the travelling and walking around airports that week (remember, I had been in Minnesota two days earlier), I was in pretty bad shape as far as hip pain was concerned. I do tend to walk with a slight limp when I get overly tired or sore and have for...well as long as I can remember (it may have been since I ripped that piece of bone off the top of my right femur when I was 12)...and this was definitely no exception. This actually worked out well because they could see me on my absolute worst hip day. They literally started with 'how were you born, when did you walk, etc.' and went from there. My left femur is at 45 degrees of anteversion (internal rotation) and can turn out to zero degrees. My right femur is at 50 degrees of anteversion and stops at 5 degrees anteversion when being turned out. They had me twist and turn in every way imaginable. On the second day, they had the team look at me which included a radiologist, a PA, a fellow, a couple other doctors and physiatrist, a specialized doctor that's a cross between a physical therapist and kinesologist. He was looking for psoas involvement when my hip snaps and pops (there wasn't any) and for SI dysfunction as a part of my low back pain (also checked out normal). They discussed how they were split on what they thought I needed. Dr. Millis was leaning toward trying to repair the labrums and working with a physiatrist first to see what kind of results that achieved while his partner Dr.Kim who does labrum repairs felt that I needed the derotation osteotomy surgeries. They asked for a bit more time to discuss my case as a group and come to a consensus. While this wasn't quite the outcome I expected, this team had quickly earned my respect and I was willing to wait another week or two to make sure that I had the best game plan for me. As Dr. Millis pointed out, some of my problems have been present for many years, so the solution wasn't just going to be found in two seconds.

I spoke with his administrative assistant this past week who was able to forward me the team's reports. They determined that I have a three part problem: first is of course the anteversion and second is the labrum tears. Third is, however, a term that was also quickly tossed out at Mayo Clinic: a collagen disorder/ liagmentously lax. Time out--you just went into medical speak again. Ligamentously lax is just a fancy way of saying that my ligaments aren't tight like they should be.

Ligaments are connective tissue bands that, just as the name suggests, connect your bones together and also help to stabilize your joints. Think of a ligament as a rubber band or ponytail holder. When you have a brand new one, it has good tension. You can stretch it, but it returns to it's normal size and shape easily, has strength, and most importantly, tension. Now think of that same rubber band or ponytail holder, only this time, picture one that is super stretched out. You can still stretch it. In fact, it probably now stretches even farther than it could when it was new. But, it cannot return to the tight, firm, and tense shape that it had when it was new. It will remain lax, floppy and stretched out. Normal, healthy ligaments are like new rubber bands or ponytail holders. They can certainly stretch out, but they have tension and strength. Their job is to be what connects bones to bones and helps to stabilize your joints. In someone who is ligamentously lax, their ligaments are like that overstretched rubber band or ponytail holder. While the ligaments can still stretch out, they can't return to the tight, tense state required to do their job of holding the skeleton together. So what's a body to do? Well, fortunately for us the human body is pretty amazing otherwise we would probably all be dead by now! When the brain realizes that the ligaments aren't doing their job and holding the skeleton together, it tells the muscles to tighten down to hold things in place. The muscles can't do as good of a job as the ligaments because they aren't designed to hold the skeleton together but they can get the job done. Unfortunately, this can cause other problems over time, with some of primary problems being spinal damage and degeneration, tendonitis and osteoarthritis.

Dr. Millis feels that the damage in my spine--that is the degenerated, compressed discs and spinal stenosis--as well as the knee tendonitis, both problems that have persisted since my late and early teenage years respectively, are a result of my lax ligaments. The problem with the lax ligaments is that it's difficult to determine what they are affecting, what the labrum tears are affecting and what, if anything, the femoral anteversion is affecting. The best way to go about determining what's what is to address the labrum tears and the collagen disorder, which is what is causing the ligament laxity. After that, they will be able to see what, if any, problems are being caused by the femoral anteversion. Dr. Millis, however, felt, that based on my exam and history I actually seem to function pretty well considering how significantly my femurs are turned in and that more than likely I have little problems from them other than some less than idea air positions on my skating jumps and certain spin positions that I flat out can't do. For the record, however, I would like to once and for all state that it is truly a physical impossibility for me to achieve what is considered a standard air position for a figure skating jump. This has been an epic battle from day one for me and my coaches. It's not you, it's me. And it's not my lack of effort, desire or most importantly, willingness to try it and trust myself. It's literally my own anatomy. I can either hit it and fall or do it my way and land. Take your pick. Now that we've clarified this, should I go back to high level skating when it's all said and done, we may have to get a bit creative in utilizing the 'less than classical looking but gets the job done' wrap style of air position.  And now I've digressed and lost everyone who is not in the skating world...sometimes though it just feels so good to be validated!

Tuesday, March 8th I met Dr. Michael Huang right here in Colorado Springs. This is lucky doctor number...who knows I've lost count at this point...who actually gets to fix me! He was awesome. Agreed that I had been really put through a bit of a circus over the last five months and thought as have a few people at this point, that it was a bit ridiculous that the labrum repair surgery wasn't at least attempted in December. He actually trained with Dr. Kim so he is very familiar with Dr. Millis and was already in the loop as they had copied him to their notes on my case. He scheduled me up for the left labrum repair surgery on April 30. After thoroughly impressing him with my ability to twist in strange ways, he assured me that he was going to get me on the road to recovery. These were his thoughts on things overall:

1. Due to the highly suspected collagen disorder, he will go about the surgery a bit differently. A collagen sac that encases the hip that is cut through during the surgery is normally not sutured shut as the body repairs this naturally. He will suture this shut tightly as my body will not heal it on its own.
2. While he normally does not place his patients in any sort of brace after the surgery, he will place me in a hip brace to restrict the amount of movement my hip has. The upside to this is that I won't require any CPM machine because we want to slow down my motion. 
3. The downside to being able to move in strange ways is that unlike most athletes who would proceed directly into physical therapy, I will be restricted to stretching for at least the first six weeks post op with absolutely no internal rotation of the hip allowed. His hope is that these three steps will actually result in a reduction in my amount of internal rotation (no complaints here). 
4. At some point down the rehab line he will evaluate my right hip and determine the course of treatment for it.
5. While a cardiology workup is indicated for patients who are diagnosed with collagen disorders as the collagen deficiency can cause problems with the aorta, he feels there is currently no need for me to see one. A cardiologist would put a collagen disorder patient through a stress test. Since a skating practice is the equivalent of one and I haven't shredded an aorta yet, we can assume that my cardiovascular system is working just fine for now. Which is great! Of course, should anything change, follow up with the primary care doctor, etc.
6. With that being said, it would be an excellent idea to be seen by a geneticist to determine what specific collagen disorder I have to better understand what systems will be affected in the future as each disorder is different, what the likelihood is of passing it on to future children, etc. Some of the better known disorders include Marfan Syndrome and Ehlers-Danlos Syndrome. Since geneticists are so easy to come by (not) I have an appointment with one in Denver that specializes in collagen disorders in August. 
7. I have 2-3 herniated discs in my lumbar spine, however, since I have been dealing with low back pain since I was 19, and have been skating for the last 4 years, it's highly unlikely that these are the culprits. Additionally, although a lot of my hip pain runs down my hamstrings, it was alleviated by the cortisone injection, indicating that it was coming from the labrum. Dr. Huang has seen this many times before and while he says he is unable to explain why some people have pain in the hamstring from the tears, if it resolves with the cortisone injection, it resolves after the repair. 

All in all I am very happy to be finally moving forward and feel that Dr. Huang is a great choice to be fixing my hips. If the repairs are simple I will only be on crutches for two weeks. If they have to do a more extensive type of repair called a microfracture, where they put microscopic fractures into the hip bone in order to help graft the labrum back into place, it's 4-6 weeks on crutches. Unfortunately, they won't know how they will repair things until they actually get in as there is only so much that the MRI will tell them. Fingers crossed that it will be a simple repair, although all things considered, even the microfracture would be a cakewalk compared to the open derotation surgeries. So the game plan now will be to fix the left labrum in 3 weeks, start the rehab on that hip (which will take about 6 months to return me to full competitive skating status), at some point in there evaluate and determine the course of action for the right hip and meet with the geneticist who can hopefully complete the circle with a definitive diagnosis that will provide a long term understanding of not only why my body is the way it is but what I will need to watch for in the future. But regardless of what is determined, it will only be a label. A guidebook of suggestions. I will not let it dictate what I will or will not do with my life. I think at this point it's a little late for that....as it's recently been made fairly clear to me that people with collagen disorders should not engage in high impact sports. Okay. It's also been made recently clear to me that with the twisted femurs I have there's really no logical way I should be able to do half the things I can do on my skates. The only real reason I probably can do them is because I'm 'super stretchy' from the, oh yeah, collagen disorder! So with that being said, bring it on life. I'm ready for you...but first I'd like to get my torn labrums fixed so that ice packs and heating pads aren't my best friends! Let the countdown begin.