Hey Heather/Coral!!!
 

It will be terrific for your doc and rep to join you in a video approach to the self program concept!!!! Crusade...... yep, I am still crusading for the patient, and I have given my article to my doc, who is working to have it published under his creds since I am a mere JD.

Blessings on you with your separation from meds,
I am so glad I did,
Mark56:hug:

Hi CoralToe,

So glad your life has turned around with your stim. I too self programmed but did not ask after my surgery, rather I asked before. I know what you mean about side effect of Opana. Great relief but a boat load of side effects.

I don't know how much my self-programming effected my coverage but I had a very good response. I was so thrilled to have a new life that I became a mentor for other CRPS patients considering SCS. Four other CRPS patients from my PM practice also had very good responses with self-programming. (They, like me did not experience what stims are like with rep programming, but the assumption is that the self programming was effective for all of us since none of us required the multiple visits for tweaking sessions.)

I wish self-programming had some effect on the high failure rate of Spinal Cord Stimulators with a diagnosis of CRPS. My "success" was over by about twenty months out and the SCS resulted in my confinement to a wheelchair and extensive spread. Sadly three of the patients I mentored had similar results, being much worse off than prior to implantation. The fourth patient is about 13 months out and has had two revision surgeries with spread to the incision sites, but is otherwise still getting very good coverage on his leg.

I am lucky to have another chance with tDCS treatments which have a very high long term success rate for CRPS. Hope your remarkable success continues forever!!!!!! We all deserve to have the kind of experience you have had. Feeling normal--excellent!!!!!!!

For those who have experienced SCS failures, or for whom the risk is too great there is still hope with tDCS treatments.

Best to you!

James, while I appreciate your crusade to "right a wrong" from your experiences with SCS (and your encouragement to others at that time), I find it disturbing that you continue to post your propaganda on every thread regarding someone's positive results. People come here for advice and support - but it is getting very old to see a long post about your predictions that SCS will fail for all CRPS patients. I stayed out of Kelly's thread in which the bickering caused her to leave the site; but now that you have posted the same old song and dance here, whilst quoting me...I won't be quiet about it.

I am relatively new to chronic pain (been a little over 2 years for me), however during the time period in which my docs and I were trying to find answers I visited numerous chronic pain forums. This and the "Healing well" forum have been my favorite - both for the sincerity and wealth of experience from the members of each. One of the moderators over at "Healing Well" has, from what I can tell, one of the worst cases of CRPS I have seen or heard of. I spoke with her at length prior to making my decision to move forward with SCS, mainly because hers also involved her foot, which is the location of my pain, and I wanted to hear her experience with the ability to get coverage in her feet. She has had her stim since 2006 or so - and still considers hers to be successful to this day. Likewise, may people here are testiments to the success of their SCS implants as well. As for me, I don't have some of the classical CRPS symptoms - so we are unsure if I truly have it, or if it is something like peripheral neuropathy instead. Finally, my pain Dr has implanted many stims for CRPS patients, with great success. I say this not only as her patient, but as a colleague, as we both attended graduate/medical school at the same university. Along the same lines, I also have access to most if not all research journals - so again, I promise you that I went into the procedure with "eyes wide open."

Regardless of what happens from here on out, I am grateful for getting some of my life back. If the stim stops working in a year or two, I will still be grateful for having at least some time with less pain. I am happy that you found relief in the form of tDCS. Perhaps you and the others who are finding success with this treatment should start a tDCS subforum; a place in which all people interested in it can learn more. This is an SCS forum - and as such, I believe it is a place to discuss the pros and cons of SCS, rather than promoting a different treatment through scare tactics.

Moderators - I am new here, so if I have erred, or done something against the rules in this post please let me know.

-Heather

Well said Heather !
 

Well said Heather :).......Im glad that you are finding some relief from your stim and hopefully you will have many many years of relief to come too.

Jackie :)

Hi Coral toe
 

This site is suppose to be about getting a lift and HOPE. Nobody should be bringing you down. Noone has the right to take away that hope that things can get better. We all have to try what ever avenue that we think will help.
That includes the SCS. I don't want anyone telling you not to go ahead with something, just because they had a bad experience. You have every right to say what you did. You didn't do anything wrong, you gave all of us the right way to deal with something. What you said is right! I too know that some people didn't have a good experience, that doesn't mean your experinec won't turn out just fine! You are in my thought and prayers, and I do hope that this turns out to be the best thing that ever happened to you. Go for it, and do your best! Take care, let us know how you are doing. I will be here to support you in your decision 100% ginnie:hug:

High frequency scs
 

Can anyone tell me whether they have had anything to do with the new high frequency scs. I have been offered this trial and I'm not sure if its better that the low frequency ones that have been around for so long regards johno730

Hi Paul ... Welcome from me, to the site and particularly to this forum. You will find we are all insane but have an intense friendship even though we've not met.

What I mean to say is .. you're in the right place.

I only read your first post so I will go back and read more in a bit .. am just watching Come Dine With Me on TV and having a glass of wine ...


:grouphug:

Hello Johno!
 

Welcome! Glad you found us!

To be honest, I'm not familiar with a newer higher frequency unit. Course that's not saying much....I pretty much live under a rock :rolleyes:
What company is offering you this unit?

Stick around, we'd love to get to know you better, such as what type of pain are you hoping to cover with the SCS. There's a wide range of circumstances here and lots of different testimonies.

I'm sure you'll get some great input!

Rae
:grouphug:

Hi Johno730,

I can see your post was a couple of months ago, but hopefully this may still be of some interest for you.....

I have trialled and progressed to a full implant with the Nevro Senza, a high frequency unit. My understanding is that it pulses every 1/10,000 of a sec which results in no sensation of the pulse at all, all you notice is that you have less or no pain where you did before. I also understand that the battery is slightly larger than the low frequency units and also requires daily charging for 45-60 mins. It's height is roughly palm size and its width roughly 1/3rd of a palm (I would say I have average size hands!)

I am early days of my post implant so cannot give an accurate account of its results, other than I am seeing improvement as time progresses. I can say from my trial experience that it was totally amazing and was quite deflated to have it removed whilst I awaited approval to proceed to full implant. Overall my stats averaged 65% improvement which was beyond my expectations. During my trial i took the first 2 days easy with bed rest, then started to increase my activity to my normal functioning (i did not drive due to the surgical pain or lift my 2 yr old due to restrictions). At day 3 I pushed myself to do 6 hours work at my computer however this was spanned over 10 hours due to surgical pain, my normal 6 hour working day leaves me exhausted and tired from the increased pain so I wanted a true indicator of what the implant would offer me. I found the decreased pain also came with the benefit of thinking clearer, a big bonus! :D I was even able to enjoy dinner out with my husband which would not normally be an option after a full days work! :partytime2: The remaining 4 days of my trial I kept active an out bed which again is not normally an option for me. I did however not benefit from any relief for my leg symptoms due to long term nerve damage, but had been given this expectation before my final implant.

From my experience if you have an opportunity to trial the higher frequency I would seriously consider once you have discussed all possible risks with your specialist.

Good Luck with your journey,
Mel

Well hey Mel
 

What a good show! Responding on the Nevro. There is precious little written about it here, so your thoughts are so appreciated. It is quite a demonstration that you are able to resume work so very soon as well.

Take care and avoid overdoing.....
Prayers for full healing,
and restoration,:)