Alaina,

I am so pleased to read that you noticed improvements this week . You might still notice effects in the coming week as well.

Having received ketamine infusions for over a year myself now, I too think it sounds like it helped. The fact that your foot looks and feels ANY better is a sign of progress. I would add that you have likely been doing more this week too and yet you still feel there's been improvement. Just think what getting to the clinic every day, the stress of the new situation and physical taxation of treatment throws at you. To do all that and still feel better seems like a positive sign.

My doctor was insistent that I would not notice earth-shattering changes when we started. His expectations and definition of success at the beginning was simply to be sure I tolerated treatment. The initial infusions are below therapeutic levels. Then it takes time at a therapeutic dose for the cumulative effects to kick in. We continued for a few boosters and THEN decided if they were helping. It's that whole ball of yarn thing.... At first I wasn't sure infusions made a huge difference. For a while I still had pain even during them. But I can say for certain that they started helping little by little until now some areas of pain are pretty much gone. (though the original "Hell Spot" of my neuroma stump does still bug me, but much, much less)

I say advocate for yourself if you want to continue. If you've heard from another doctor that effects are cumulative, cite that person for support. Doctors have different ranges of experience. Mine has given ketamine to enough people over time to have a decent library of case studies in his head. He was comfortable pursuing treatment for a few weeks before judging the outcome. And the fact is, if you feel your pain has dropped some during this first foray, that seems encouraging indeed!

Keep up the good work on all your adjunct therapies. Just don't overdo it! I tend to overdo after an infusion because I feel I can push it, then there is a bit of payback from that. I love that you are talking nicely to your leg. I did that for a long time and it helped me change my attitude which had become rather negative. Being kind to myself and my limb made me more loving in general and that's always a good thing.

Sending continued healing thoughts and many hugs,

Alaina I am so happy to hear of your progress! You have been in my thoughts and prayers. I am so glad you are sharing your journey with all of us. I am happy for you and with you. May you continue to heal physically, mentally and spiritually. I really like hearing about all of the things you are trying. It is very encouraging.
peace
zinnia

Alaina,

First, I hope that you are still experiencing relief today. The mood change is also wonderful. Just don't overdo it. Being able to tolerate gentle massage is great. I have experienced the benefits of desensitization, so to me this is a big deal.

I am in total agreement with LittlePaw's reply. Her doctor gave her such great advice and it sounds very familiar. It does seem like you received two differing opinions already. Your PM was expecting better results earlier than the doctor who owns the practice:

" I had a chance to speak with the doctor that owns the practice, and his intern
yesterday. The doctor assured me that I may not see any lasting pain reduction until later on in the week, possibly into next week."

Count your blessings and read and reread LittlePaw's reply.

I hope you were able to contact your doctor yesterday and get the issue of continuing the treatment resolved. Hoping for long lasting relief.

Shay

Yesterday I had a follow up appointment with my PM. I learned a little about his background and experience with Ketamine and patients with CRPS while going through a handful of questions that I had for him. He loves having me as a patient, because I always have a list of questions to ask.

I was wondering where he ended up getting his Ketamine protocol from, and his answer surprised me. The team of doctors that work in the practice he is at, put their protocol together based on what all 4 of them felt comfortable doing. He doesn't like using it much because based on his past experience, it is usually an ineffective protocol for treating CRPS.

I underestimated his knowledge and experience dealing with CRPS patients. It turns out, he did his residency and fellowship at Thomas Jefferson University Hospital working under Dr. Schwartzman when he was there back in the late 80's and into the early 90's. During his time there, they were doing studies on the effects of Ketamine for, RSD/CRPS. During my PM's time there, he saw over 200 RSD/CRPS patients.

With all of the work that he has done with Ketamine and CRPS patients, he does not feel that I would benefit enough from the protocol that his office uses, even though I did manage those 3 days of a fair amount of relief, allowing me to moisturize, and massage my foot during that time. He feels that because of the severity of my case, I would only benefit from an inpatient infusion done in an ICU. Since I did manage to get some relief though, he prescribed a compounded cream for me that has a combination of Ketamine, Gabapentin, Amitriptyline, Lidocaine, and I think there was something else in there as well, but I do not remember. I will find out when it comes to me next week. He is not sure if it will help, but feels that it may help a little. Every little bit helps, so I am willing to try.

That's interesting. I had no clue they could put those medications into cream form.

You live, you learn.

Alaina,

Thank you so much for the update. It really explained a lot of questions that I had with the protocol that you received. I really wondered how effective such a low dose over so few days would be for you. I was really happy when you reported some pain relief.

I now understand why your doctor made some of those comments to you about your pain levels during the week you had the infusions. When I saw Dr. Schwartzman in 2011, he felt the 10 day low dose outpatient would work for me. The other protocol was a five day moderate dose inpatient infusion. I have continued with the two day boosters every three months and they do help.

Please keep us updated on the compounded cream and let us know if you decide to go further with the ketamine infusions. It is so great that people on this forum are so willing to share their experiences with different treatments.

Thank you

Shay