Posted 4/14/2015 10:48 AM (GMT 0)
Hello all, first off sorry to all of you that live in the sucky world of chronic pain like me. And sorry for the long intro, but my story isn't easy to condense.
I'm Scott, 37, started having issues with pain at 17. Learned at 18 I had broken both heads of my femurs at 17 that started the pain. I started playing college football and my legs stopped working right so I got x-rays of my hips and the team doctor pointed out where the femoral heads had been fractured. They were displaced fractures that didn't heal correctly because I never knew I did it (which every doctor has said "You can't break both of your hips and walk around, never mind not know it."). I only had occasional issues with pain every 6 months or so that my primary care doc treated with some 5/500 Percocet from when I was 18 until I was about 27. Then the pain started to get worse pretty quickly until I was taking pain medication constantly and increasing dosages. It finally got so bad I saw 6 orthopedic hip surgeons within a few months, plus neurologists, and don't even remember who else, and nobody could tell me what was wrong. I had the chairman of the New England Bone & Joint Center, a hip specialist, tell me with my now ex-wife sitting next to me "There's nothing wrong with you, your pain is in your head, you need to figure out what environmental factors are causing it and eliminate them."
After 13 years in Boston, I got a job offer in Colorado and moved when I was 30. A coworker suggested I see someone at the Steadman Hawkins Clinic in Vail, which I'd never heard of, but now know it's where all the pro athletes go to get surgery done. It has the best orthopedic surgeons in the world. I was given an appointment with their hip specialist, and I say given because he only sees the weirdest, worst cases unless you're a big time athlete (he's operated on Bo Jackson, Mario Lemieux, and a ton of other famous atheletes). He immeidately diagnosed my problem and was the perfect person to see because he was the first doctor in the world to recognize the problem I have and invent a new surgery to try and fix it. He scheduled me for surgery 3 weeks later. At that time I took about 300-400 mg of Oxycodone a day for breakthrough pain (sometimes more) plus I had been on basically every other pain medication they make in huge dosages, but my pain was so bad a couple hundred mg's of morphine wouldn't even work, and every dosage was enough to kill a horse.
My surgeon expected to find things not so bad based on my MRIs, which showed just minor arthritis, but he still described the worst case which meant he'd have to grind down my hip/leg bones a bit and possibly do a small microfracture (where they drill holes into your bone marrow to generate scar tissue to replace complete cartilage loss). He was expecting to just clean up the joint a bit and remove some minor bone spurs. Well, when he got into my hip (my left one, which was always much more painful) it was much worse than anything he'd ever seen. He later told me he didn't know how I'd been walking for the past two years, never mind raising two kids, remodeling a house, working, and everything else. He ended up grinding off 1/3 of the neck of my femur becuase the bone spurs were so large (and they don't touch the neck of the femur much because it's the bone in your body that takes by far the most stress/pressure), removed a large part of my upper edge of my hip socket (bone spurs again), cleaned out a huge amound of loose tissue that was grinding in the joint (including some things he'd never seen before he couldn't identify that were parts of my hip), and doing the most extensive microfracture he'd ever done.
Lucky me when I woke up after 7 hours of surgery the epidural had completely worn off when it was supposed to last at least 24 hours so I had no pain medication in my body after they'd done all that work, and it took 6 nurses to hold me down (I wasn't supposed to move my lower body at all after the surgery) for the half hour it took to get the anesthesiologist since he expected I'd be fine with the epidural. That was pain like you can't imagine, so bad my sister was thrown out of the room and later told me "It was like a shark was tearing your arm off." Finally the guy got there and shot me full of Demarol and gave me Ketamine (which very few people ever see, even chronic pain patients, but I've been prescribed since my pain was so severe).
Fast forward a year and I'd lost 100 pounds (and I wasn't fat), had the other hip operated on (which thankfully wasn't nearly as bad), and finally got off pain medication (YAY!). I enjoyed about 18 months of not much pain and no pain meds before my hips started bothering me again, and it was back on the medications for my 34th birthday. Now I'm 37, almost 38, lost my job a couple of years ago due to my medical issues (used to make over $300k a year), lost my house, can't see my 7 and 9 year old kids much (long story but it's due to my medical issues), moved back in with my parents in NY since I had nowhere to go and needed somebody to watch over me while I have a ton of new medical stuff done (injections, operations, and who knows what else, still figuring that out) while my kids are still in CO with my ex. And I have to declare bankruptcy, and I'm broke, and I could keep going, but that's enough of that.
To top it all off, with all of the negative press about pain meds and all the bad docs and abusers, I've had a hard time getting prescribed what I need and have run out 4 times this year and gone through full withdrawal each time (which is a piece of cake, I actually enjoy throwing up because it's about the only thing that distracts me from the awful pain) but had to deal with the pain without any meds (which wasn't a piece of cake, it was horrible). But I'm getting help finally I hope and my parents now have to take care of me when their health is getting worse since they're in their 70s (heart issues, cancer, other stuff).
Anyhow, best wishes to all of you, and if I can help in any way I'll be glad to. I know more about pain meds than any doctor I've ever met and have taken every single one on the market, non-medical ways to help fight pain (like distraction techniques, which work better than pain meds), how best to make it through withdrawal, and all sorts of other fun things I've learned in the last 20 years. Good luck and keep fighting!