No worries on the posting. New posters often have to get creative in the beginning.

If you feel inclined start a new thread to introduce yourself. The most people will see you that way and there is wonderful support here. If you haven't watched Dr. Pradeep Chopra's "CRPS Diagnosis and Management" on YouTube it has a wealth of rational info and tips. He is highly regarded in the CRPS arena. Most of all hold on to hope. 80% of people improve over time, odds are in your favor. Keep moving, get in the pool, be kind to yourself and come here for sharing and support. :) Feel free to PM anytime.

Sending Healing Love, :hug:

Okay now back to ketamine...

Update: Infusion #4
 

Hello all,

I had my fourth infusion 12 days ago and had a follow up with PM yesterday that was quite interesting. Since I am making improvements and tolerating the infusions we are continuing with 4 more then a quarterly maintenance booster. I had a couple of interesting take aways from my follow up visit.

I have been reporting that the ketamine is NOT earth shattering but is helping and my PM said this is typical. I told him that I seem to have a slow gradual uptick in function and pain reduction after having one and he said that is also typical. So for once my body is doing exactly what it's supposed to be doing. :D

He said the pain is like a ball of yarn and we are pulling the string out from the ball a little bit each time until it gets smaller and smaller. He said patients report that they notice at some point that they don't have any pain. He also said some people choose not to come in for quarterly boosters and 50% of those people relapse. None of his booster people have relapsed to their former pain level. I'm gonna be a booster patient!

The PM also thinks that I am NOT entrenched in chronic pain yet because my pain is not totally stimulus independent. It is related to activity or too much standing/dependent position which causes pressure on the nerve from normal post op swelling. ( says it may always swell some) So even though I am a year out from my last operation the pain is still acute. He said his goal is to support me through the next year and keep the changes from becoming permanent. He thinks my nerve still has some healing to go from its big repair. 6-12 months maybe.

I think I like this guy okay. :) I am feeling hopeful. Heck what's one more year? I can't wait to see what happens with the next batch of four. We go up on dose to 1mg per kg and I will be able to do them on a consistent two week schedule starting Aug. 18.

Thanks for all the support and encouragement. I will report back in when there is news.

Sending hugs and prayers for everyone, :hug:

I love the ball of yarn analogy! Good stuff littlepaw! 👍

I am so happy that your treatment is working. Thanks for sharing your "good doctor" story. I get so frustrated trying to deal with the health care system. It's nice to be reminded that there are caring doctors out there who do what they do because they want to help people get better.

Good luck with your next round of infusions. I hope your days keep getting better and better.
Cheryl

That is so great that the infusions are working! I love the yarn ball analogy. I have never heard it explained like that but it makes perfect sense. It's crazy to think people don't go back for their boosters. Thank you for sharing your story with all of us. I look forward to your updates because you always explain things so well. It is refreshing how you provide some optimism when all we usually hear is doom and gloom.

Hi LittlePaw,

I'm so happy that your infusions are working for you !! That's GREAT news !!

I was supposed to have a ketamine infusion several months ago, before I found this website and all of the forums and support here.

I chickened out because of the things some people had told me. They all scared me !

Thanks so much for sharing your experience :hug:

I 💜 you Littlepaw! You always have some positive insight that I so desperately need. I am so happy for you that the infusions seem to be helping! I love that your foot gets to feel "footy" sometimes. That gives me so much hope! Also the ball of yarn analogy... That is kinda what's it's like 😋

I appriciate the time and experience you share with everyone here. It is so refreshing to read your posts because you make me feel warm and cozy inside... Like you're our Mom listening to all our negativity but you are able to give us a glimmer of light and hope. I hope these infusions continue to make things better. You know, I know all about foot ants! It's the worst 😢

You give me hope 💜

So honored!
 

You guys! you're amazing. Really!

I am so honored to be able to contribute something meaningful to the group and I am just full of warm fuzzies after reading your comments. It really means a lot to me to see that this post is helpful. That's exactly what I was hoping. ketamine is kind of shrouded in mystery and there is not much out there about the low-dose infusions. I am happy to share this experience and so thrilled that there is a positive outcome to report.


Velkyn - I just about teared up reading your post. I understand what a struggle you have had and I am so glad that I give you some hope. Of all the cool things I have done in my life being a Mom is my favorite! It just kinda comes out.

On that note, my foot feels better enough that I enjoy being in the kitchen more. I noticed the clinic staff is cranky and rushed in the morning so after infusion two I started baking banana bread or oatmeal strawberry bars the day before to take in regardless of how I am feeling. I give the batch to my infusion nurse to put in the break room. The upside? I am always given to the best IV starter, they take super-good care of me and are always happy when I come in. Hee-hee, baked goods are my secret weapon.

Thanks for all the hugs and warm fuzzies. They made my day! :circlelove:

Glad to hear the treatment is working. I just watched dr. Chopra video. Excellent information. Thank you.

Littlepaw,

Not surprising the Staff are favouring you if you are bribing them with baked goodies:D Poor, underappreciated things, probably never had this before.

Just be careful they don't saboutage your treatment to keep you going for longer:winky:

In all seriousness, this is just the sort of kind-hearted act I would expect of you.

Dave.