Spread
 

Hello Az-Di,

Have you asked each of your doctors why they think one treatment is better than the other? Once you have that information then you could ask yourself if either sound more like what you expect to get out of it? At the end of the day the treatment plan whatever that may be, should be helping you reach your goal. For instance: in my case I couldn't walk but just a few steps before the pain left it's ugly mark upon my face. So my first goal was to merely be able to walk without tears - this was discussed along with other hopes/goals with my treating doctors. I discussed alternative therapies (ketamine, calmare, HBOT) and the SCS. With many of the alternative therapies there was a higher cost involved and a long wait list - TIME that I personally didn't feel I had. I was only 7 months into this disease and wanted whatever treatment to start fast, so that I had the best chance to recover. So that narrowed the list. I discussed further the benefits of the SCS for my situation and went for the trial. For me it was like night and day - as soon as I was allowed to get up I did, I walked with no limp and with much less pain. Relief was possible!! I then touched my own leg as if to brush pet hair from it.. voila, I could also do that with the trial SCS buzzing away. Over the next few days friends & family all commented how you could hear the relief in my voice. I was back to my cheerful self. I knew right away that the SCS would help me have a better life for however long it worked and I wasn't going to pass that up.

The best way to prevent spread is to get your body out of pain. To do what you can do to find happiness. Eat healthy and get plenty of rest. Keep your body moving so your blood is circulation and healing. Quit smoking (if you do) and try hard not to let the fear of spread consume you.. it will most likely spread at some point.. but live like you never knew that was a possibility. Drink plenty of water. Soak in epsom salt. Get rid of negativity and try to keep stress down. Think positive and believe that you will get through this.

I hope you find relief for your pain soon,
Tessa

well said
 

I need to remind myself of all those things...the combination really makes a difference in my health...I still sleep 9 hours a night...is great!!

thank you Tessa for the primer

and do what you can to find happiness!!
love it
Johanna

I have full body, but it cannot be linked to my scs(plural) I have none in my neck, where the last one was planted, but my back is a train wreck. I have it in my eyes, and experienced no trauma there. I also was dxed this week with peripheral neuropathy and small nerve fiber neuropathy. Basically, my entire nervous system has gone insane :eek: I guess. Nerve diseases are a bucket of fun. I will say this. My scs's keep my leg and arm pain very minimal and I'm hoping with some tweaking this week we can cover the back spread. I have two. Surely the leads have contacts that will hit some of it. I had suspected back spread for awhile. After all this time, we finally have confirmation.

Very well said!!
 

This post belongs in a frame! :winner_first_h4h:
Thank you Tessa, especially about the 'negativity' part.
I really need to work on that one. :rolleyes:

Rae
:grouphug:

Howdy TK
 

Praying you are......., well, doing well despite those things I just read....

Hey, can you see me waving?? :Wave-Hello: :Wave-Hello: :Wave-Hello: :Wave-Hello: :Wave-Hello:

I am, uh..... in the Dallas metroplex where I will be this coming week as I work through the bar exam...... again. :Crazy 2: Well, some people think I am :Crazy 2: doing a youthful person activity at my silver age.....

Anyway, figured I should give you a howdy do :Wave-Hello: :hug:

Ketamine and crps2
 

Crps2 is very rare. Also, it is a more potent stimulus than crps 1. It's a genes environment interaction. One one end is spontaneous crps1 (probably largely genetic) and on the other end is major causalgia / crps 2 (largely environment)
Then there is everything in between from sprains to major crush multiple fractures. Major crush injuries probably nail numerous intermediate sized nerves. It's a spectrum.

Anecdotally, ketamine is not efficacious for crps2. There are just a couple positive case reports. Very weak evidence. I have seen some coma
Trials where they give huge doses and it
Works for a week and all comes back. They stopped doing it -
Bad for their numbers. For most crps patients, ketamine is
not great. For a lucky few it is great. It blocks the nmda and some opiod receptors. Very dirty drug. Crps has multiple mechanisms. One could make a cogent argument that it is the most complicated disease state. One thing is for sure- you only understand it if you have it!

I did 2 days a gram of ket each day and
Puked hallucinated and no pain relief. Never again.

Thanks MD for the added info on CRPS 1 & 2. My doctors all told me that "true causalgia or CRPS 2" is as you said very rare. They even went on to explain that the location where my iatrogenic nerve injuries occurred that caused the causalgia is even more rare - in fact my case is being written up for medical study in the journals of orthopedic surgery. I hope the article/study prevents this from happening to anyone else!!

Praying we all find ways to get maximum pain relief so we can enjoy every minute of this precious life,
Tessa

Awe thanks Rrae glad it made someone smile :)