Just made yet another 3 hour each way road trip to see a doctor. I saw a doctor and the Hospital for Special Surgery in NYC, though not a surgeon. I requested a full leg x-ray, from hip to ankle. He diagnosed femoral anteversion. But he diagnosed that before even taking the x-ray, just by looking at me while I was standing.
This is the first time in 9 years I've heard that phrase from a doctor seeing me, and only the second time in which a doctor has validated my concern about some kind of alignment issue, other than mere patellar tracking issues. Though he did say the x-ray showed that my hip knee and ankle joints lined up perfectly.
But it 9 years to get a name put to what MIGHT be my problem. I don't even know if that's an accurate diagnosis, but if it is, 9 years, and dozens of doctors. That's mind-blowing. I feel like I should be able to claim malpractice against all the doctors and PT's who refused to listen when I told them, time and time again that something else was wrong that they had not yet identified.
Despite having a potential diagnosis, I have no path forward. I asked the doctor what to do about it and he said strengthen. I said strengthen what? He said everything. I said I can't get stronger, at least in my legs, because I can't. By my analysis, the deformity creates a self-limiting effect. I don't want to get stronger anyway if it's stronger from a dangerous position.
And he recommended seeing a neurologist. I'll do that, just to eliminate the possibility of something like ALS, but I've had an EMG twice, once years ago and once this year and the physiatrists who did them said nothing is wrong. But he also said neurologists are better at looking for these things.
But I'm nearly certain the neurologist is a dead end, because I don't have general strength issues, though my strength is worsening in my legs, but I think that's simply because the alignment is worsening.
Another thing he said that I'm not buying, is that the alignment can't change once you're an adult. I commented that my symptoms have gotten much worse in the past 10 years, but he said that the symptoms can get worse without the anteversion getting worse.
I disagree, because I have noticed shape changes to the muscle over that time period that I cannot attribute merely to atrophy. And there's that Wolff's Law thing. Does that apply to alignment, or merely to mineral density? And maybe the fact that no one identified anteversion before means it wasn't bad enough to notice and onlyl became evident recently, bolstering my case that it can get worse after adulthood.
He gave me no options for strengthening except the most general thing possible, strengthen everything. Thanks doc. I've been trying to do that for 10 years, meanwhile my legs get weaker and weaker and I get less and less stable.
I asked about surgery, but correcting anteversion is MAJOR surgery. You have to literally cut all the way through the femur and put it back together. And I'm not even sure that's the actual problem.
But I think if I'm right about the anteversion, if that's actually what's wrong, getting worse over the past 10 years, that it can similarly get better, if whatever mechanical stressor has caused the worsening is reversed.
I don't know what I'm asking for. Moral support. Guidance about how to treat femoral anteversion non-surgically. Oh, he did say one specific thing, work on glutes, but I've worked on my glutes with PT's countless times and it has never brought about any perceptible change in symptoms.
What do I do? Right now, my plan is to go to a neurologist, and to get the full leg x-ray on disk and send it to Dr. Sanders at the Sanders Clinic in Houston, TX where a lot of the realignment surgeries are done for a second opionion. But the neurologist is almost certainly a dead end, and I'm not sure if an x-ray will do Dr. Sanders any good, though he apparently responds to emails from non-patients, as he has done so once for me.
But still, these aren't great options. I still feel like I have no real path forward and no hope of ever resolving this, aside from a surgery that could go horribly wrong. After 9 years of begging for help from the medical profession, I got nothing.