First, I would like you to know that your post is the reason that I registered for the Neurotalk Support Group today. I was browsing CRPS support groups looking for some that are fairly active and I came upon your post. Hopefully I will have some information to help you.

Next, I have to say that when I read that your PM is just now convinced that CRPS can spread, I actually checked the date of your post because I thought I may have read the date wrong. (2006 rather than 2016) I thought things were improving. I know that now more medical professionals are aware of CRPS, but it looks like we still have needs in this area. I was happy to see that you are being an advocate for yourself and therefore all CRPS patients. Thank you.

Now finally, I will get to the ketamine. I have been receiving ketamine infusions since early 2012. I broke my wrist in 2008 and was diagnosed with RSD soon after. My Primary Care Physician suggested that I make an appointment with Dr. Robert J. Schwartzman at Drexel University in Philadelphia, PA. I agreed to see him and had to wait almost 2 years for the appointment. During all those months, I learned as much about him as I could and I was impressed. He agreed with the diagnosis and noted signs of spread to my left foot. He recommended the 10 day out-patient ketamine infusion. After a lot of required testing according to his protocol, I finally started the infusion.

I can tell you that I was very nervous about the infusion, but I was provided with a great deal of information about the drugs that would be administered and their purpose. I can tell you that different doctors have different protocols. Each patient responds differently. Please keep that in mind as you read this. I don't know where your doctor trained, but his protocol had to come from somewhere, so ask him or his staff if that concerns you. I am a nervous Nell so everything concerns me.

My infusion started at low doses and gradually increased over the 10 days. The two nurses in the infusion suite are there constantly to monitor blood pressure, oxygen levels, and the three lead EKG. Alarms will ring if there is a poor reading. This reassured the nervous Nell. Blood tests are required after the infusions to check for liver function. My liver was not happy, so I was unable to follow the original protocol. After the 10 day infusion, I was only able to receive the two day booster every 3 months. I have been receiving the boosters for over 4 years. I have had brief periods of remissions and at one point I thought maybe I could stop. It always comes back. I broke my right foot 2 years ago. and that resulted in more spread. I do get relief from the ketamine, but sometimes a booster does not work as well. I usually get 2 good months and then the third month the pain starts to increase but rarely to very high levels. Overall I am pleased with the results.

Just some extra info: I am very tired after the infusion and my husband usually takes a wheelchair to make it easier on him and on me. Other people walk out of the infusion suite without any problem. I thought it was just me but there is a gentleman who is a big guy and he reacts like I do. Again, everyone is different. I have had hallucinations, some funny and some not so much. I am able to remind myself that it is only the ketamine and it will go away. The nurses will also reassure patients if necessary.

In addition to the ketamine and Versed, I also get Benadryl and Zofran for nausea. Toradol is available for headaches. My boosters are 200mg of ketamine over 4 hours. Talk to your doctor or his staff. The more information you have on the drug protocol and how you will be monitored, the more relaxed you will be.

Take it easy for a few days after the infusion. Let your body rest and let your brain reset. Avoid doing things that can result in injury, but do keep moving. Not everyone gets good results after the first infusion. I have heard some people say that it took several boosters before they knew it was helping. Don't get discouraged.

I hope some of this has been helpful. Let me know if you have any questions. You will be in my thoughts and prayers.

Shay