July 2017 - disability, toes amputated, another stimulator & surgery

Life has been rough since my last post. The CRPS has been getting worse in both legs. I got a Nevro stimulator put in and thought it was working but turns out to not help much at all.  I don't even have it turned on anymore.

I finally figured out why I haven't had any interest in trying to date. The meds reduced my testosterone to almost zero. I'm now getting shots and it does help a little. Considering I can barely retain a social life anymore is now the biggest problem. I have a theory that the disease and drugs are what tanked my career. The timeline lines up.

The toes on my left foot that had the knuckles removed began to twist a little and developed ulcers on the bottom that wouldn't heal. The options were to redo the surgery (cutting knuckles, etc.) or just amputate. Since it was originally just the middle toe and wouldn't affect balance, I went with the doc's recommendation and chopped it off.  30 minute surgery and weight bearing immediately. Had to have the pinkie toe removed two months later.

The CRPS has continue to progress so I decided to try Ketamine infusions. Ketamine has emerged as an incredibly effective drug for treating nerve pain, depression, and other problems. It's not covered by insurance due to it being an older medication and not technically approved to treat CRPS. Cost me $1,500 per infusion, six infusions initially with boosters in the future. I get amazing relief anywhere for a few weeks to 8 weeks. Theoretically, people can eventually get complete relief after boosters. This is pretty rare though. In Europe, they are actually putting people in ketamine induced comas for 7-10 days and they are coming out with their nervous systems completely reset. A bit risky though.

A new stimulator has been approved in the US that focuses on the dorsal root ganglion. It is the first to show continuous positive results for patients with CRPS. As high as 70%. I am scheduled for a trial in August.

Been missing the best part of summer as I'm stuck in bed with horrible pain. Epidural shots have not helped but a peripheral nerve block seems to have some effect. Got the left leg done Monday and it's helping a little. Right leg will be done Monday.

The last surgery on my right leg (osteotomy, brostrom, tendon transfer) failed and is scheduled to be redone in September. Can't imagine dealing with that and CRPS. Not sure if I can.  That would mean I have an ankle that flops over and can't stand on anything other than solid ground.  After about 20 minutes it gets too painful, regardless.

Lastly, I've finally decided to pursue disability. I've really tried to not do it as I see it as giving up but I need some income while I fight this disease. I hoped to be able to work but now I'm losing hope. It is really scary. The disease is going up my legs into my knees. I've never been in agony without anything helping before. I'm so tired of laying in bed all day with no relief. I can barely manage going to the kitchen for coffee or food.