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.

Update Infusion #5.....it's a whole new world
 

Hi everyone,

It is a week since infusion 5 and time for an update. I am doing a lot better.
I reached the higher dose target of 1mg per kg and I did great. It was not that weird. They gave me more zofran and versed and the 1.5 hours felt like 15 minutes. Still strange color graphics behind my eyes but not disturbing. I had less nausea but was much more sleepy through the day.

For 6 full hours my foot felt 100% like the other foot. And I mean 100% It went beyond pain relief to totally normal sensation. Wow! I didnt even know that was possible and had forgotten what it felt like. Usually I still have some nervy weird sensation but not so for part of the day. What a nice break and surprise!

Here are the current highlights -
Color is much improved and looks normal for much of the day.
Temperature difference is reduced to about 2 degrees. Was 5-7!
Something unexpected, my surgical areas were hard and somewhat swollen, this is changing and tissue is softening.
Direct sunlight doesn't set my skin off
The ants have moved out of 3/4 of the area they inhabited.
I still have pain which came back, oh yes, but the area is a lot smaller and it is less severe.

Positive gains -
I am gaining muscle in my foot.
I can shower if the water is not too hot.
I walked 3 miles!!!! Can't do that all the time but nice to know it is possible under the right conditions.
I went to an Art show and got to go all around.
I bought tickets to take my son to Cirque du Soleil!!! He needs to do a production critique for theater class. What a great excuse. A year ago I could not have considered attempting the parking, the walk, even the seating...

I am pushing the heck out of recovery and activity (hence the long walk)trying to break down scar tissue and up lymph and blood circulation. I pray the gains or at least some of them hold. The good news is I went 7 full weeks between my last infusion and this one and I was still a heckuva lot better that when I started them in May. 3 more to go. I am on the schedule for pretty much every two weeks.

Please hold on to hope! It pays to keep trying different treatments. You may find one that doesn't eradicate the problem but does make it manageable. Yes, I do still have pain and limitation. Yes, my foot still talks to me but not so loudly and I am doing things I thought were lost completely and feeling better than I have in almost three years.

Sometimes I burst out in moments of spontaneous joy and loud singing in the car...so nice to feel good.
Sending Love, :grouphug:

So happy to hear your progress and accomplishments. You are an inspiration.

Great to hear that your treatments are working! I keep thinking about trying ketamine. Your story is making me reconsider the appointment I cancelled back in July. Your doc is doing a different protocol than the doc in Dallas does. It's interesting, thanks so much for sharing your story.

Yay!
 

This is so great to hear! Huge Dramatic changes! Do you know if the heftier Ketamine infusions are met with such improvement? I have my consult in 3 weeks… I live too far and have too few support to do low dose…and my oral ketamine is starting to lose it's oomph.

I am so happy for you! :hug:

I just found your post Littlepaw.

I cannot tell you how happy I am for you that you are getting pain relief from the infusions!!

I hope your progress continues each and every day:hug:

Quote:

Originally Posted by Inspiretoday (Post 1168936) This is so great to hear! Huge Dramatic changes! Do you know if the heftier Ketamine infusions are met with such improvement? I have my consult in 3 weeks… I live too far and have too few support to do low dose…and my oral ketamine is starting to lose it's oomph.

Thanks!

Hefty infusions will definitely have oomph! I can tell the difference between my starting dose and what I get now. Though even the half dose was helpful with initiating changes. Dr. Scwartzman has done the most research on ketamine infusions and he was one of the earlier ones using the heftier dose. Results can be found here.
http://www.ncbi.nlm.nih.gov/pubmed/?...an+RJ+ketamine

I personally think one of the most important factors is for the pain contributors to be addressed. To me this seems like a "no duh" situation but I only finally read that in black and white a few days ago in an article in Pain Management News that said patients will re-centralize if issues are left untreated.

That's part of why I am so bent on remodeling my scar tissue. I have a boatload of it that I constantly step on from one incision and drag past my tibial nerve at my ankle from another. I am thinking about going to my PMR doc in Houston before my infusions are finished to see if he thinks another round of steroid shots is advisable.

Let us know what happens at that appointment!
:hug:

Update Infusion 6 and 7
 

Okay, so not a lot to report. I think my most recent improvement has been as much from the scar injections I got as from the last two ketamine infusions. In fact, judging from how much difference I noticed with a little steroid on fussy nerves I would say the injections made a big difference in my general nerve aggravation. Possibly pushing recovery so hard while on ketamine backfired a bit. :rolleyes: At least I found out now that walking around on all that scarring was not doing me any good. And ketamine alone can't fix everything...

Technical stuff...#6 was given really quickly and #7 given really slowly because on infusion 7 the doc set it up himself on his leisurely admin day. The infusion nurse was at a training. My Doc likes it to go slow and I will say I was much less out of it and felt better overall that treatment day. If anyone gets infusions and feels too bleh afterwards then ask them to back the speed down.

Most of my improvement seems to be holding though my foot still has circulatory trouble. :confused: The color is better but it still flashes red/purplish sometimes for no apparent reason and gets kinda dusky when down if I am standing still, which is a nice thing to do. I don't know if this will go away or not. My Physical medicine doc says sometimes nerve injuries do that. I don't like it...

I will post an update after my last infusion and scheduled follow up appointment with PM. I may ask about another infusion or two since I just had scar tissue treated. I have no idea if they might be helpful or if the doc will agree. I wish I'd had that treatment further along before starting infusions. My biggest worry is backsliding once I don't have them on board except for boosters. eeek. So scary!

Thanks for the kind comments and support. It has been so much easier going through all this with you guys around to buoy me up! I am grateful always to everyone here.
:grouphug:

I am so glad that you made an update on this. It is nice to read the back stories of those who have given so much inspiration and hope in making even the slightest amount of recovery. Thank you Littlepaw :hug:

Update infusion 8, follow-up and plan
 

Hello All,

I had infusion 8 five weeks ago and then had my first "transition booster" yesterday.

I misunderstood the plan! We are not going to quarterly infusions yet. At follow up my PM wanted to be sure pain control was holding two weeks between infusions before agreeing to go to 4 weeks in between. He was more worried about my pain control than sticking to a firm protocol. :) I will have three of these monthly infusions and then if those are holding we go to quarterly. So personalized! And custom for my pain levels. :eek: I am kind of stunned.

As some of you know infusion 8 left a big bruise and I got sick on it. No such problems yesterday. We hit the sweet spot for infusion rate. Little nausea, easy IV, feeling fine. Yay!

Many improvements are holding. I still have zero ants living in the sole of my foot and they now moved out of much of my ankle. I still have feelings of weirdness and nervy sensation but is much less painful. I can sleep without my protective brace which kept pressure off incision area. The Color change/circulatory stuff is still there. So I am bummed about that but maybe with more time and infusions it will improve.

My doctor is supportive of the scar tissue injections I have been getting both superficial and with ultrasound guidance, hoping that minimizing pressure and adhesion will help. He noted that the ketamine is likely making it possible for me to tolerate those and I agree. Usually I flare after the deep injections and this last time I had them it was like no big deal! I am maxxed on those due to atrophy, darn it but the healthy tissue shrinks too...
so maybe done with them.

I still have steroid hanging around in my CRPS zone. The real victory will be if pain control holds once all that washes out of the tissue. I am praying so and keeping my fingers crossed!

I confirmed the cash price for outpatient infusions is $300. I was unsure if it was contract rate for my insurance.

Thanks all, I will post something when there is news.
Sending hugs and healing love, :hug:

In Celebration
 

Good news! I love it! :trampoline:

Wow! A "logical" doctor! Individualized care at an individualized pace! :Dancing-Chilli:

There are some pros to the fact that there aren't firm algorithms in place for treating. This affords lots of flexibility.

I am very impressed with the detailed plan for reaching ultimate and complete healing. Very comprehensive!

It's such a blessing you have found so much cooperation and support within your medical care.

Of course, this is all driven by you, by your determination to triumph! :mf_swordfight:

Thanks so much for the update.

Continued Love, Light and Prayers,

:hug:
Deja

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

Hello and Welcome Wallc1,

My doc in Austin is a long way to go for you and his protocol is not amenable to out-of-town treatment.

The first thing that comes to mind is Washington University's Pain program in St. Louis. I don't know if they give ketamine but you would think....they do research there and are usually ahead of the curve.

The other thing that came to mind is Dr. Ronald Harbut in Hot Springs, AR. He was an early ketamine pioneer. Here is a link to an announcement about his new clinic from RSDhope. That would be much more convenient.

http://www.rsdhope.org/ketamine-patient-stories.html

The infusions have been a real game changer for me and I know they have helped others here as well. I hope you find something close to home. You may have to just cold call clinics because they don't always advertise infusion services on their webpage.

Come let us know what you get worked out. I hope your husband find relief soon. I am sending healing thoughts ya'lls way.

:hug:

LittlePaw,

I'm so happy to hear that your infusions are going well!!! I was excited to read this. I don't post a lot because it's hard to type and I've been very ill lately, but this gave me hope when I read it. I did my first infusion today and it went well. Hoping for even a tiny bit of relief in the days to come, and more relief in the weeks/months to come. Did I read somewhere you're in Austin?