BRAVO MY DEAR

you provided important info
i always recommend having an advocate
the fact you bring this up
i would like to add log everything
everything everything
and never be afraid to speak up
and get it out
you are the recipient
of a internal device
THEY BETTER LISTEN
YOU DID NOT GO THROUGH
ALL OF WHAT YOU DID
JUST FOR THE HECK OF IT!
p l e a s e ! take charge of
your body

GOD BLESS

someone who cares

Yes. That is exactly what I feel regarding anyone who, being on some profit prompted agenda [dare I write insurance or DME industry?] who has not the time of day to work COMPASSIONATELY with chronic pain patients.... or ANY patient to tell you the truth. I am willing to be high on a soapbox on a rant about people GOTTA listen to you Fiona!

This is not even so much about you Deserve such compassionate care, as that you as a human being deserve to be accorded respect and willing appropriate responsiveness to your enunciated needs. I HATE the condescending "not gonna help you" behavior of some about whom words are written here.

Reps and their companies alike have sooner or later GOT to take a peak at the truth regarding patients being the only ones who, wearing the pain stricken body, have the means to intuitively and objectively communicate with the said body. Reps are about as clueless as those raised bumps striping a freeway if they will not HEAR the pateint whom they address.

But...... I could easily be guilty of digressing if I keep on here.

Time to shut up,
BUT,
not before sayin prayers are there for ya Fiona,
Yup

Yup - as Mark said....self programming really should be the standard of care. Like Mark, my rep gave me the reins and I clicked many, many buttons - testing out what each one felt like as I changed them. The scientist in me was very much in the "I wonder what that button does" mode!

Before my rep handed over control she was making changes and asking what it felt like. Well, there are only so many ways you can explain a "tingling" or "buzzing" sensation...even if it feels slightly different in either location or sensation with different settings. It is almost impossible for them to understand how this feels. Not only that, but they are trained to deal with the settings in a certain stringent manner; I asked why she never tried settings in a different combination she would reply with something like "because that is ineffective." When I sat down at the programing computer and set up the settings as I had asked, it gave me a much more pleasant/less harsh sensation than what she had wanted to leave it at. Again - they have NO WAY of knowing how any of it feels.

Additionally, like Mark, I am aiming to be narcotic free. Over the last year (since getting my stim) I have completely eliminated my ER opiate, and am now on about half the dose of IR opiates than I was on when I first started my pain management journey many years ago. The stim of course is a big part of it, but is also complemented immensely by massage, mmj and knowing my limitations

Ok Mark56 & CoralToe, you've given me the spark I needed to start putting together my case to allow me to self program! I've read through your previous posts, and read your article Mark56 and this cemented it for me! I think given my specialist is driven by research I think if I can present my case in a manner than may catch his interest he may see the benefit to use me as test case for further research, also given the rep status is in a state of flux it may also be the perfect timing on this front.

I've been scouring the web for any journals or reference to programming a high frequency unit and have seen reference to pulse width and rate, are these the parameters you were dealing with when programming your units? My other concern is that with my unit there is no sensation associated with the unit been on, rather after a period of time I notice things settling down, like the intense pressure sensation in my lower back that see's me shift from side to side starting to release, or whilst walking I notice i can get an extra 100m than before (baby steps I know!). My understanding with my unit is that positional changes are not meant to affect the output however whether it be I'm still in the early days or not I do notice that ripping sensation more frequent on lying or sitting, the intensity of this differs between programs so I could test this during programming if given the opportunity. My mind is boggling with ideas!

CoralToe, wonderful to hear you are reducing your opiates, I too find weekly massage of great benefit to make it through the week. I thought I'd mention considering a physio, I'm sure like me, you have seen many throughout your journey, however prior to my surgery I started seeing a physio (I can't recall the particular type) who was and is the only physio that has ever made sense when describing my concerns and how they have affected my posture and the knock on effect this has . She had no desire to get me in the gym or hydro pool to strengthen my core as countess physio's have in the past resulting in me crashing for weeks and taking longer to get over. She had the focus to undo all the postural changes my body has made overtime so that this would relive the reliance on others muscles that have been compensating for years and are now in a constant spasm. Again I had only started seeing her but you know that feeling when something feels right and logically makes sense?

I am not sure if this all holds true for the Nevro, but I can comment on my Boston Scientific stim...

Programming shoud involve a computer with a "connector" that "talks" to your stim. For mine, there are 8 electrodes per lead, and each of these electrodes can be turned on or off, and adjusted in pulse strength and frequency. You can alter the pulse width and frequency here...but you can also ask for your unit to be "unlocked." What I mean by this, is usually once the programming is done, you are able to control the strength of the signal only. However, if you ask your rep to unlock it, you will also be able to control the frequency. Before my rep did this I was not very happy with the way the pulsing sensation felt. By increasing the frequency just a bit, it made a world of difference! Additionally, while most reps won't tell you this...you can set up 4 programs to cover all of your areas of pain - and then either run all 4 of them seperately, or all at the same time. Once I learned this, the self programming really opened up, and has provided great relief!

As for Physio - I am glad that you have found someone who you enjoy and is helping you. For me, I did physio for the first few months - but found massage to be much more helpful. I have become very good friends with my massage therapist - and see her 1-2x a week. It has helped so much, and she usually works on me for twice as long as she bills insurance for - just because she knows it helps

I apologize for being late getting on your thread .
I hope things are going a little better since you first posted?

My heart surely goes out to you. You've been thru alot and it angers me that you don't seem to be getting the attention you deserve regarding these problems you are having. This pain/spasm that you describe sounds serious.
Are you still taking the Lyrica? This medication screwed me up and I rapidly gained over 50 pounds! It became downright dangerous, as my blood pressure shot up and I was short of breath due to the weight gain. I hope you aren't having these reactions. Some people do well by this med, but it was a living nightmare to me. It took 2 yrs to get back down to my ideal weight.

I'm so glad you found this forum. As you can see the support here is genuine. I pray that things take a turn for the better. NObody should be left in the kind of pain you are in. Do whatever it takes to have your medical team get to the bottom of this. They need to be on the ball and see to it that you are cared for properly!

Caring!
Rae

so happy
so proud
you did this
you made it happen
you go
you have helped
thousands if not more
by you sharing your
strength
so proud

someone who cares

Hi there Mel (aka BumpyRide), my name is Sue and I had my permanent implant of the Nevro Senza done on 12th April in Perth, Australia. My battery site is enormously painful. I am also experiencing that excruciating ripping pain and a horrible intense burning during and for 12 hours (plus) after charging. I am so disappointed as my trial was amazingly successful. I just saw my surgeon who has just said take painkillers and try to persist with charging "through the pain" as it will "probably" wear off with time!!

Hi Sue,

I had my stim off for a 1 1/2 to 2 weeks post surgery as it this seemed to settle the sensation greatly, much to the disapproval of my rep and specialist. I too also found that charging did flare it up.

I have found that the flaring on charging has settled down with time (about week 4), as long as I do not lye down on my back to charge. I find it helps to charge lying on my side or walking around using the belt and pouch you should have received with your box kit.

In terms of the ripping I honestly think the Lyrica has been masking this, as since I have started ramping down (from 300mg per day to 150mg) the sensation is getting to the point that I'm getting stuck in the chair or lying down again. I did feel that my re-programing session to reduce the output did help minimally but should have a better indicator once I'm completely off the Lyrica.

I was given the expectation that I would be fine to get back to work by 2 weeks post op, so have struggled with the 'give it time' theory, I still am! Thankfully I'd organised help around with my kids to take that pressure off and ensure I don't bend/lift or twist in the 6 week post op period.

You'll see from the beginning of this thread that a few wise people suggested keeping a log, I've found this very useful in trying to pin point and track my changes. So I'd suggest to you trying to keep a log for your reference and plenty of rest.

Hope this help a little, even if its just knowing that someone else really understands and know your pain.

Mel

Hi Mel

Thanks for your kind words...I have my battery implanted under my left armpit and I wonder if that has something to do with the pain, as it is a sensitive area with lots of nerves and lymph nodes and things. Today I tried charging lying on my side, made sure I was as relaxed as possible (hard when you are frightened of the pain you are expecting!) and kept reading a good book and stayed in bed for a good hour afterwards. I think that all helped.

I don't take Lyrica anymore as I had awful side effects on it last year. My pain specialist started me on Endep again last night to help with sleeping. It worked (mind you I took 50 mgs!) so I also feel better after a good sleep.

Thanks for your support...
Sue