Dear Alaina,

It just breaks my heart reading everything you have tried to get relief and knowing how much you have endured this past year. Your list will be a big help to your doctors. I used many of the things on it and had a lot of success with aqua therapy, mirror therapy and acupuncture but everyone's situation is different.

Thinking about you I am most struck by the challenge of finding relief from CRPS with a non-union ankle fusion or of getting a non-union to heal with CRPS.

I don't know at what point it is decided to try to do something or if that would remotely be recommended. I do know that I have read various studies saying surgery during CRPS may be indicated if it is necessary to treat the cause. Sometimes such steps are needed if an injury cannot heal as I understand may occur with some cases of non-unions.

Is the gap on the non-union getting any smaller? Is orthopedics following you closely and collaborating with PM and physical medicine? Do they think you need bone grafting/debridement? Or just time with the stimulator?

Or God forbid have they given up?

My personal opinion is that you should consider an academic medical center where a team of specialists will coordinate how best to help you. Sometimes these places can do amazing things that others don't offer or are afraid to try. You're not finished healing yet and I would avoid treatments that are end-stage when you have a legitimate, ongoing, identifiable condition which is known to cause a lot of pain and could be causing your CRPS. Don't let PM treat you like a hopeless case. They've got to get you healed first. If that means you drive to Ann Arbor do so. You can always request that your aunt not be given access to records unless you want her input. (Hospital electronic systems flag when unauthorized users access these). If it means you find a way to get to Mayo's ortho program then do that.


Aim high, search far. Don't give up. I drove three hours in two different directions to find the specialists I needed. It was and is still worth it. You are worth it. It sucks going to more doctors and telling your story for the umpteenth time but sometimes fresh eyes make all the difference.

Sending hugs and much healing love,