I don't know if anyone is still following or still cares but I wanted to update the foot / toe progress because finally -- FINALLY!! -- there's actually been positive progress. Brief recap: Had toe surgery last December to solve pain in my 2nd toe of the right foot, although the surgery was on the big toe. Following surgery, had severe pain in big toe that never went away, indicating nerve damage. Went to at least 8 different doctors (besides my fucking asshole surgeon who fucked me up way way way worse than I was before I saw him). Diagnoses varied between localized nerve damage and RSD (aka CRPS), which is more a disorder of the central nervous system in which signals of pain are being sent to the brain despite there being no damage. As it turns out after all these doctors, RSD is what I have, and it's incurable. As in there are no doctors who have figured out what the hell is happening with these nerves and how to make them stop sending pain signals. It's a debilitating disorder for hundreds of thousands of people and typically is the result of some trauma to a limb (in my case, and in a lot of cases, the foot). The worst cases result in it spreading to other limbs and leaving the afflicted person completely disabled AND in pain all the time. I don't have anywhere near the worst case but several times over the past 8 months, I've looked at a disabled person and been envious because at least -- presumably -- they weren't in pain. Of course, I could still walk so I'm exaggerating but the American Medical Assocation named RSD as the disorder with the greatest amount of pain. Seriously, if you've ever been in pain, what I (and so many others) have gone through was worse. And it doesn't ever go away. But it can be treated and so far I've found an excellent doctor (Dr. Cohen in Hamilton, NJ -- shout out!) who started my treatments in July and since then I've gone from regularly a 7 or 8 out of 10 on the pain scale to a 2 or 3 today. The treatments consisted of sympathetic lumbar blocks -- basically injections in my lower back at the site of the nerves that travel down to my big toe to numb them. I had 3 injections and they were miracle workers but the last one didn't do much, which was obviously disappointing. As a result Dr. Cohen recommended stopping the injections and moving to "drug therapy" (my explanation) which basically consisted of upping the dosage on the Gabapentin I was taking already (prescribed by another doctor). While I was skeptical that would do anything (I'd been taking it for months and still in tons of pain), the last 3 weeks on the increased dose have been much, much less painful. I had no problems in Vermont. I had no problems at two concerts last weekend and getting lost on subways in the City. My days have been relatively pain free, with some exceptions (wearing shoes still hurts, so I've been giving my new sandals a workout), and obviously I'm feeling better mentally as a result. I've even been working out again -- I started with just the bike at the gym and now I'm up to 15 minutes on the elliptical, which 3 months ago caused a massive relapse that lasted weeks. So far (based on a week on the elliptical) so good. And the physical exercise is definitely a key to helping to heal the nerve from what I've read (and what Dr. Cohen tells me), so if the drug is helping with the pain which helps me exercise more, which helps the nerve heal somehow, then it's all good. Again, there is no cure and no one in the world really knows what's causing RSD but... I'm hopeful again. So anyway, hopefully this is the last foot update and the next will be I'm back to "normal," whatever that is, but pain free is all I'm asking for and that's getting closer by the day. Thanks to all for your support through this horrible, horrible, horrible year.
Very happy to hear that things are looking up Bill. Hopefully the bad pain is behind you. Good luck to you!
Posted by: Wayne | September 17, 2012 at 08:08 PM