SCS Prevent CRPS spread?
 

O.K. so I'm all over the place on deciding whether or not to get the permanent SCS. I had the trial removed on July 11th. After that I was not ready to decide ANYTHING!
I went for a consultation about "Calmare" therapy and I was leaning that way. I presented the info. to my pain Dr. (she wants perm. SCS) and she was not impressed. Of course they are in different camps and neither bellieves in what the other is doing.
Anyway, now I suspect the CRPS is spreadiing.
Does anyone have experience with either treatment helping to prevent the spread?

Hi there! I can understand your difficulty in making your decision, been there! As you may already know, I had two SCS's implanted at the same time in June 2011. SCS will not prevent spread, it is only to help manage your pain. Some folks had spread because of the implant surgery, I am not one of them. I have had spread since my SCS's, but the SCS's had nothing to do with it. Spread was from new injuries, etc.

I cannot say anything about Calmare Therapy, I have not experienced it and have read mixed reviews on it.

I wish you the best of luck in your decision making, it is tough!
Nanc
:hug:

Agreeing with Nanc regarding the CRPS spread issue. I sure hope this is NOT happening to you :hug:
Spreading of CRPS due to SCS is discussed a lot at the RSD forum, as it is certainly a possibility. Glad to see you posted this question over there also.

One thing I might interject is that after having the trial leads removed, the pain can come back full-force in a lot of cases, and waiting for the permanent implant can seem like an eternity. I hope the doctor who did the trial will address the pain to try and determine if it might be spreading.
Do keep a journal. It's a great reference.

How well (if any) did the trial work as far as covering over the original pain? I know how difficult it can be trying to figure out which pain is what.
My heart goes out to you as you wade thru the pros and cons.

Rae
:hug:

Hi Di
 

Knowing the onslaught of pain after Trial was over and remembering it well, I feel for you in this difficult time of weighing options. A tough decision..... that.

Hoping in your final analysis, the last therapy standing is The Therapy which helps you and helps you in a good way.

Pulling for you, :hug:

Stim @ Spread
 

Scs does not prevent spread. Although there have been many anecdotes of spread following scs implant, there has never been proof of causation. IMHO, just keep moving / keep doing what you can. That's the only "proven" treatment. No drug has proven efficacious for this. Therefore, i take none.

My rec is get it if your trial is great. Mine was and my perm is good, but not trial level. Crps isn't like other pain conditions - it's whack a mole. The pain moves- you need great coverage to justify implanting it.

Well, a little humor sure helps! LOL, "whack a mole"! How accurate is that?
I appreciate the support and even if treatments do not work the same across the board it still helps so much to share experiences!

Thanks for the reminder to keep a journal and thanks for the sharing and the support!

Ketamine
 

I digress. Ketamine. Only quality trial showed very good effect in 25% of crps1 pts. Crps2 not studied. Anecdotally not useful in crps2. I can make. A "testimony" on that! Made me throw up for a couple days. Will never try that again.

AZ-Di - pardon my little side track.

MD- do you have any idea why they have not studied the effects of Ketamine for CRPS 2? I am assuming it doesn't work well with CRPS 2 due to the severity of the nerve injury that caused it to begin with? I was told in my case the nerve(s) that were damaged will not heal and that due to the location of damage that this will be continually irritated therefor it has been said that remission from the CRPS isn't likely. I am still optimistic but curious if you have any thoughts. Sorry the Ketamine caused such nasty effects and didn't work out for you.

Log all
 

Dear friends

With everything going on
THE MOST IMPORTANT THING YOU
CAN DO FOR YOURSELF IS LOG EVERYTHING
DOWN IT WILL BE YOUR SAVING OF ANY TURD
THAT MANY DO THROW BACK TO THE PATIENT
Log "ALL"

Someone who cares

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 :)