Dear Alaina,

I am so sorry about your experience with the SCS. I hope the ketamine offers you relief and is without problems. Ketamine is considered safe and is used even in very young children as anesthesia, so I don't think personally that there is too much risk. For me it was a real game changer and despite the lack of evidence for "functional" improvement in studies, I myself seem to have had it. It has been about 15 months since I started infusions and I am able to do much more than before I began. Improvement was gradual, as my doctor thought it would be, so don't give up if it is not like flipping a switch. My doc in particular used the "pain as a ball of yarn" analogy, that we were pulling the yarn little by little until the ball got smaller and smaller. It really has been like that for me and he said it is like that for most of his patients. You might get initial relief and you might also get a delayed improvement. I actually feel best about a week or two out, not right after.

I am in the close your eyes during the infusion and relax club, though I have seen where some patients do read. They get theirs infused very slowly. If you are going to be out for a while I would recommend putting on lip balm ahead of time. Also, I don't know if you are able to take a break during your infusion by having them back it off? I ask because some patients, self-included initially, offload a lot of fluid during the infusion. One study I read commented on it being "neurogenic edema". Getting info on this from nursing and having a plan for a bathroom break might be helpful. Four hours is a long time...

I am marking my calendar for the 12th. I will be sending many healing thoughts your way.