Ketamine Infusion for Treatment of RSD/CRPS

[Jane]

Tame The Flame wrote:

Hey Jane, thank you for thinking about me and for your concern. It is very nice and very touching! As for deciding not to go through with the trial, in my opinion, that is probably the right move. It didn't work for me, and for a lot of other RSD sufferers that I know, especially those who are in more advanced stages, it was highly ineffective. Not to mention the "invasiveness" of the procedure, which could spread the RSD outward from its original location(s). I'm glad to hear that the injections are helping, even if only mildly. Every little bit of relief helps. I hope you and your doctor can find a "happy place" in terms of treatment that will bring back a quality of life that you can live with.
As for me, I am doing better after my latest injection. My doctor wants to try doing a sciatic nerve block along with my infusion next time. He thinks it will give me a little more relief, and extend that relief a little longer. I will let you know after my next infusion how that goes, but I am very hopeful. I have talked to a few other RSD sufferers, including a few who underwent the Ketamine Coma Study, and they get the nerve blocks on top of the infusions as well. They said that it works great for them, so I am hopeful to have the same experience they have with it.
As for relocating, unfortunately that isn't to much of a possibility. We moved to Long Island to be closer to my wife's family, both for their help and support when my health is an issue, and so that she can work for her father. She is also going back to school to finish up her degree, so this is the best place for us. And while it may not be the best place for me health wise, like I always tell my wife, this is the best place for all of us. And god knows we are going to need the family support because we found out this past Tuesday (my daughters birthday) that my wife and I are expecting our second child. So God knows we will be needing all the support we can get.
Anyway, I hope everything is going great for you and your health. I will keep you updated as to the next infusion/nerve block, and to the relief that it gives me. Take care Jane, and have a great Halloween!

Still haven't figured out how to really comment in the same space as your post so I just add a new one. It is below. congrats!!! Jane

[Meredith - Charleston WV]

Hi Everyone!

I had my first three day (four hours of infusion per day) ketamine treatment. It was fairly hellish as my RSD is full body and the IV and constant blood pressure taking was incredibly painful. However, I did feel some pain relief, but only for a few hours afterwards.

The issue is Dr. Chin. I really like her, but since I didn't have a month of relief from the first round of treatment (and low doses of ketamine) she wants to give up that route and go to a Spinal Cord Stimulator (which I want to avoid at all costs). I asked her if we could try another round of ketamine and slightly higher doses or a longer round of treatment and she reluctantly agreed.

My understanding was that with longterm RSD and fullbody cases (and especially those two combined) that it just took longer to get real results from ketamine (or ANY of the few RSD treatments). My understanding was that the relief period after each successive treatment often got longer and longer and that there were other cases that started off very slow but then offered worthwhile results after a few goes.

How can I hold my ground against someone who's done quite a few of these treatments by now? Should I show up with articles and personal testimonies or what? I'd much rather have done an inpatient longer treatment since one study showed that they seemed to work better/more quickly, and if I can get my insurance to cover that then I'll press hard for it. But otherwise I just don't know what to do. Sometimes it seems like hitting the emergency room and refusing to leave is the best option. I'm really at my wit's end as far as being able to 'deal' with all of this and not go insane. It doesn't help that with the cooling weather my fibro pain is getting worse.

UGH! help!

[Jane]

Meredith - Charleston WV wrote:

Hi Everyone!
I had my first three day (four hours of infusion per day) ketamine treatment. It was fairly hellish as my RSD is full body and the IV and constant blood pressure taking was incredibly painful. However, I did feel some pain relief, but only for a few hours afterwards.
The issue is Dr. Chin. I really like her, but since I didn't have a month of relief from the first round of treatment (and low doses of ketamine) she wants to give up that route and go to a Spinal Cord Stimulator (which I want to avoid at all costs). I asked her if we could try another round of ketamine and slightly higher doses or a longer round of treatment and she reluctantly agreed.
My understanding was that with longterm RSD and fullbody cases (and especially those two combined) that it just took longer to get real results from ketamine (or ANY of the few RSD treatments). My understanding was that the relief period after each successive treatment often got longer and longer and that there were other cases that started off very slow but then offered worthwhile results after a few goes.
How can I hold my ground against someone who's done quite a few of these treatments by now? Should I show up with articles and personal testimonies or what? I'd much rather have done an inpatient longer treatment since one study showed that they seemed to work better/more quickly, and if I can get my insurance to cover that then I'll press hard for it. But otherwise I just don't know what to do. Sometimes it seems like hitting the emergency room and refusing to leave is the best option. I'm really at my wit's end as far as being able to 'deal' with all of this and not go insane. It doesn't help that with the cooling weather my fibro pain is getting worse.
UGH! help!

I say you stand your ground. Tell her you're not ready to throw in the towel on the ketamine and as with other treatments maybe it will take 2 or 3 times before you feel MUCH better. My doc is getting me ready for the stimulator but said he just put the bug in my head so I could think about it for a LONG time before it woudl actually come to that. I think if you feel positive about the ketamine and you're willing to go through with it again and your insurance will pay then she doesn't really have a reason not to give you the treatment. It's your life! Hang tough! Good luck and please let us know how you do! Jane

[Jane]

Tame the Flame......What is up with you. Haven't seen anything in a while and you know I get nervous when I don't see you on here helping people out. How was your infusion? How is your wife feeling? Come on, keep me up to date on all the baby news and how you're feeling. This has been a bad fewe months for me. Damp, cold, back to school....Trying a new medication - Opana along with a seizure med.- Keppra and continuing with the percocet for the breakthrough pain. So far even though the pain hasn't lessened a great deal, my legs are functioning a bit better and my Frankenstein gait isn't so Frankensteiny. I see that as a plus. We just got a hot tub!!!! Woo Hoo. I know I do well swimming and this thing is one big tub so I'm hopeful that will be a big help. I really hope you're feeling better. Keep thinking about that new baby. All the wonderful things that little sweetie and your daughter have to offer you. Take care. Jane

[Tame The Flame]

Hey Jane, I have to apologize for not keeping an update recently. My wife and I have both been busy recently with medical appointments. My wife and our soon to be baby are doing great. Everything is going smoothly with her pregnancy. She is now 9 weeks pregnant and the food cravings/sciatic pain/insomnia are starting up in bloom right about now. She takes it all in stride though, and its interesting to watch her food cravings change from meal to meal.
As for me, I have been busy with various medical appointments, including one with the military in Bethesda, MD. My previous infusion was going pretty good and my pain was managable up until about 1.5 weeks ago when I stubbed my middle toe and broke it, along with the "bridge" of my foot.(The top part of my foot) So now I am in excrutiating pain from both the breaks as well as the cam walker they put me in.(I hate that thing) Luckily, I was able to make an appointment for a Ketamine/Lidocaine infusion tomorrow (11/17) with a sciatic nerve block as well. So hopefully that will help bring the RSD pain down to bearable measures. The break in the bones pales in comparison to the RSD pain, so if I can just get the RSD under control then I should be able to manage.
I am sorry to hear about your setbacks as well. I can totally understand about the damn, cold, and especially changing weather conditions. As for the meds, I have never heard of them so I can only offer my good luck wishes. Let me know how you make out with the new meds. Hopefully all goes well with them. And congrats on getting the new hot tub. That must be pretty exciting, both for the therapy/pain relief, and just as a relaxation tool. Its so hard to be able to have even 1 second of relaxation with RSD, but hopefully the hot tub can bring some sense of calm and nirvana. Anyway, I hope all is going well with you and that your RSD is being kept in check, especially with the upcoming winter weather rapidly approaching. Take care, and keep fighting the RSD!!!

[Tame The Flame]

Hey Meredith, sorry I didn't reply earlier, but I had some medical problems that I had to deal with. Anyway, I am glad to hear that you were able to get an infusion, despite the pain of the IV/blood pressure cuff. I know how that feels, as I too have "full" body RSD. I put full in quotations because there are a select few areas that remain unaffected, and luckily one of them is my right hand. So they are thankfully able to insert the IV there. Unfortunately, the cuff is still placed on my right arm, which isn't the worst area of RSD for me, but it is still hell every time it pumps.

But enough about me, as for your problems. First off, I hope that the other side effects of the infusions were not to terrible for you. That was the worst for me on my first infusion. I was nauseous afterwards, walked like a robot, had a terrible headache, and had that "ketamine" taste in my mouth. But the pain relief was about as close to heaven as I could have been without being dead yet. Anyway, I would strongly urge you to not let your Dr. talk you out of or away from a continued course of Ketamine Infusions. And thats not just because that is the route that I choose and works for me, it is also medical shown to be the best treatment for RSD cases that were "out of control" and/or difficult to treat and manage. If you want a reference or source, in Volume 22, Issue 2, Spring 2009 of the RSDSA Review Dr. Philip Getson, DO states:

"Physicians have different protocols for the administration of ketamine, but we have learned over the last four and a half years that the quanity of ketamine is less important than the duration of the treatment regarding the ability to shut off the NMDA receptors in the brain over time, as opposed to at a single session. Our experience shows that single doses of ketamine do little to improve the patient's condition, while repeated doses of ketamine have worked very well to relieve sympathetic dysfunction."

So as you can see, bailing after just one treatment, where you acheived relief, all be it short, is not the correct path that should be taken. My doctor tried to do the same thing with me, tried to get me to go the route of spinal cord stimulator. But after already being a patient of Dr. Schwartzmans and Dr. Kirkpatricks, I learned already that the spinal cord stimulators were not the right path for someone with full body, or where the RSD was unmanagable.
Well, I hope this helps Meredith. If you have any questions or concerns please feel free to ask me. I may not be able to reply right away because I am having an infusion tomorrow, but I will get back to you as soon as I am able. I hope you the best of luck, and just tell your doctor that you wanna give the infusions more time and see how they work for you. Good luck Meredith, and keep fighting the RSD!!!