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