So happy that the treatments seems to be working and that you have found a doc and a treatment protocol that you believe in. Glad the side effects were minimal this time. Thanks again for sharing your progress.~mac

Oh yay Littlepaw! This thread just put a smile on my face. As the others have said, it is so nice to here that you have such a caring doctor and is tailoring your treatment to you and not some set schedule.
I hope everything is still going well and relatively pain free.

Update: infusions, follow up and plan
 

Hello everyone,

I thought I should pass along the latest. The last couple infusions went well. I now have zero pain during them. Before there was still a bit of breakthrough.

The stinging and biting ants are 90% gone, even in my ankle. It may be a ketamine, scar injection and cool weather combo so we'll see how I do when Texas heats up again. But so far things are holding better than I expected now that the scar injections have likely worn off. I gave up nortriptyline 10 days ago and we're seeing if I can stay steady without it. I have noticed a bit of kickback discomfort which my Doc says should pass in 12-14 days. If it doesn't settle I'll go back on it.

I am tapering infusions to every 6-8 weeks for three more then to every 10-12 weeks.

My follow up appointment went really well. It was so nice to have a positive doctor's visit. I asked him about my prognosis and here's what he said. I so hope he's right!

My doc said that what he's seen in his patients is that when they get where I am (pain down to 3 at worst, often less) they tend to stay there or get a bit better! He's says they typically don't go back to where they were. He says I have many years ahead of me with this and that inevitably I will roll an ankle or something and the pain could come back, in which case he says we'll deal with it. He says if I have surgery anywhere on my body it could come back. So no lipo for me. :rolleyes:

Apparently the color change and circulation stuff may be here to stay, though Doc says since I am 18 months out from trauma I could still have a little improvement. He believes the sympathetic damage is done and the ketamine just detaches the pain from it.

I am to take a prescription for tramadol and a Medrol dosepak on vacation with me this coming Spring and Summer, just in case. He wants to avert a pain crisis if I have one while traveling. We are also scheduling my infusions a week ahead of travel. Hopefully this will keep things calm.

I am so pleased with my doctor's understanding and skill. Third Pm was the charm!

Thanks for reading and for your ongoing support. I hope we all find comfort and healing.

:hug:

Thank you Littlepaw for sharing your experiences with us. Hoping three is a charm for me as well.

This is such positive news, Littlepaw. I do hope the future follows the 'Best Case Scenario' for such a Special person.

Dave.

I second Alaina, thak you for sharing your journey. I am so happy for you that you are healing and have a good prognosis. You seem like such a positive person and I think that may have worked in your favor as well. Keep that positive energy flowing. ~mac

little help littlepaw?
 

I'm new and waiting for my thread to post. I have severe RSD in my hand after compartment syndrome and an emergency fasciotomy in july. Diagnosed with RSD about 12 weeks after surgery when whole arm was blue and felt like it was on fire. Luckily I was diagnosed early and they're being aggressive, I get admitted today for my 5 day first ever infusion, what should I bring, what should I expect. I saw a post about one guy's infusion and he said he felt like he didn't bring enough/the right stuff, wasn't prepared well for it and had advice and when he felt better he'd update but hasn't yet and now I'm all nervous! Thank you to anyone that can help!

Hi and Welcome,

I see your new post did show up so I'm responding there....
:hug:

That's so amazing to hear you are down to a 3! Congratulations! I hope you like the tramadol better than I did!

would you mind giving me the doctors name. My husband has CRPS RSD whatever you want to call it and it is going full body. We live in Missouri, looking for a doctor with a ketamine protocol. The closer to home the better as being in the sunlight makes him miserable