Alaina,

It sounds like you are going to be well prepared for your infusion. I did want to add a little more for your consideration. Littlepaw mentioned the possible need for a bathroom break. I have found that it helps if I stop drinking fluids at least two hours before the infusion and use the restroom right before the infusion starts. Then I will use the restroom right after it stops. One gentleman has had a urinal ready just in case. Oh, if it were only that easy for women! On the other hand, I have seen people walk in with a bottle of water, because they end up feeling dehydrated. That leads to another possible side effect: constipation. You may want to have something at home just in case the need arises. I drink a lot of water between infusions and for several days after.

You expressed concern about the IV. Will they be using the same IV Access
for the 5 days? That makes it much easier than a daily stick. I have a designated arm and spot that they can use. I only had one time that the access was a problem for me, and it hasn't been a problem since we started using that one spot. You probably know where you would want it since you have been through other procedures.

I am with you and Littlepaw concerning music. We are told not to bring books, tablets, phones, etc. Relaxing music with headphones is allowed and I would recommend it. It will help drown out any noise. Just remember to put your phone in airplane mode, so it doesn't start ringing!!!

They dim the lights, close the curtains, and have quiet time during the infusions. I have found this to be very conducive to relaxation. If you don't know if they will be dimming the lights, you may want to consider taking sunglasses with you.

Wishing you relaxation and great results,
Shay

Day Three
 

On Monday I started my five day outpatient ketamine infusion, so today was my third day. It is a little different than what I was anticipating. I have to be at the doctors office at 6:30 to sign in, go over paperwork, ask questions, and gather vitals.

On day one, I was rather surprised when the nursing staff was asking to get a better understanding of what they are to be doing through the infusion. I was told that most of the infusions are done at a different office, so they just wanted to make sure they do everything correctly. We started my dose at 20mg/hour, but since the infusion itself is only an hour long, only 20mg total were given. I obviously misunderstood when I was told that the infusion was four hours long. It is one hour for questions, paperwork, getting the IV started, and taking my initial vitals, one hour for the infusion, then two hours of checking my vitals and recovering before being allowed to leave. I really did not have any problems with the initial low dose, but I did have some mild nausea, a mild headache, and some fairly bad agitation, but I do have anxiety issues even without the CRPS and the ketamine. I did mention all of this to the nursing staff on day two.

Yesterday, we went through the exact same routine with the dose adjusted to 30mg. They are also giving me Versed to help me relax a little during the infusion. Once again, I ended up with a little nausea and a headache later on. So far on both of these days, I had a drop in my pain level by one point, but only during the infusion. 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. I made the intern's day yesterday. I am the first patient that he has had that is a "real CRPS" case. I am not sure what he meant by the first real CRPS case he has seen, whether he has only read about it, or if most of the cases he has seen have presented with more mild symptoms, but I was happy to answer some questions for him and make his day.

Today was the first time that any sort of problems came up. The nurse hooked up my IV, flushed it, administered a little Versed, then without thinking started administering the Ketamine by hand instead of through the pump. I don't know why I didn't catch it either, but the nurse realized what she was doing almost immediately. She didn't give me much, but it was enough to make me feel a little on the euphoric side. I guess the good thing is that it took my pain level down to a four, which is somewhere that I have not been in a long time.

So far I am not seeing any lasting results, but I am patient. I also started working on mirror therapy 4-5 times a day for 5-10 minutes each session. I was a little bit skeptical of that actually working, but after doing it for a few days now, I am starting to see how it can help. I will see what happens in the coming weeks, see what my PM has to say over the next couple of days and figure out if I will be going for follow up boosters. I am starting to relax a little while there. I am getting to know the nursing staff, and we are having a good time throughout the course of the morning. They are one of the more lively and fun nursing staffs that I have been around, and I have been around a fair number of different staffs throughout my life.

I will post again later on in the week to let you all know how I am doing.

Healing hugs to you all :grouphug:

I am glad you are "easing into things" nicely. I did hope your pain relief would already be there, but... you'll have to see. Nerve blocks aren't quick solutions either, I'm told.

Hang in there. You can do this! :)

So glad you are able to update us. You are still at a very low dose, so you are right to be patient. Even boosters don't always give immediate results. I am really interested in your experience with the ketamine since the procedure is different from what I have experienced. I am also hoping that you get a good amount of pain reduction from the total infusion. Again, my thoughts and prayers are with you.

Shay

I don't know much about ketamine, but for the mirror therapy it takes a lot of practice for it to work and have an effect. But it can be useful for short term relief of symptoms in my personal experience.

Thanks for the update. So other than the slight med error, whoopsie - good save on that one, it sounds like things are going well.

I agree on it taking a while to see results. There is the sometimes immediate effect of short-term relief but much of it seems to be cumulative. Even though I am at full dose when I get infusions I don't always feel the full effect for up to a week afterwards. Hopefully as they get you titrated up and a little time passes you'll see better results.

Good work on the mirror therapy. That too takes a while. I did mirror therapy for many, many weeks and felt the consistent, normal looking input was indeed helpful over time. Graded motor imagery is also recommended. This is something athletes do where you are basically visualizing a movement or series of movements. Brain training is good!

When I was seeing a pain therapist one of the things we did was visualizations during hypnosis or EMDR of me with a completely normal looking, happy leg doing something I enjoy like hiking. I always felt very peaceful when we did this and the positive input was good for me. It was a way to connect with the "whole me identity" that was in there under the pain and fear. And it helped me feel more love for my leg which had gone through so very much.

Keep up the good work. We are all rooting for you and sending healing thoughts and prayers, :hug::hug:

It is the day after the final infusion day. Did it help at all? I really do think that it did. I can not actually say for sure. After all, it is only the day after, but my pain level has dropped enough that, even if it stays at this level for a short amount of time, I am very happy with that. The only problem is, Thursday was the last day that I saw my PM, and based on what he has seen throughout the rest of the week, he was hoping to see better results by then. Thursday was just a little to early. Yesterday afternoon is when I first started to notice some real relief, and today is even better. The strange thing is, my PM was expecting to see some pain relief in the areas of spread and barely any at the original site which is my right ankle and foot. It turns out, that I am experiencing the opposite. I am only having a mild reduction in pain in my left thigh and knee, barely any on the back of my right leg, but enough of a reduction that I am able to place my foot on the floor and do some gentle massage. I would give pain scores, but pain scores are so subjective, I never really did liked to use them.

I am continuing on with mirror therapy several time throughout the day as I can tolerate it. I only say that because the last several times that I have tried doing that, I start to get very nauseous and feel I need to stop. It seems kind of strange that that is the only time I feel nauseous, but I was told it is likely to be just from the Ketamine. I also figured that I might as well try as many different things that I know of that have helped others at some along the way. I am working on biofeedback at the end of the day, meditation just before that, different relaxation techniques throughout the day, and I started being a little more nice and talking to my legs. If anyone else has any other suggestions, please share them. I am open to new ideas and willing to try them.

It may be too early to tell yet, but I am going to call my PM on Monday to see if he still would like for me to hold my usual one month appointment, or if this changes his mind at all. I am hoping that it does. My foot feels better and looks better, and my mood has gone up tremendously. I am starting feel like there is some hope again.

That is WONDERFUL news! I am so glad to heat that you are getting some relief...I can only imagine what it has done for your mood and just to feel like there is hope again is so huge! Congrats and I will keep praying that you see even MORE relief as time goes one. :)

Reduction of pain and the ability to put your foot on the floor and do massage is huge and gratifying to read. Hooray! :D

It does sound a litte "meh" to me. It could have been better where pain relief is concerned, especially since your doctor also expected more - that should tell you something. Maybe they need to look at different things for you, in combination with the ketamine. But still, there is progress for you. I do hope you're not in pain 24/7 and that things are done to combat that in the mean time.