Post implant guidance
 

Hi All, I'm new to this forum and am hoping for some guidance on my scs implant journey.

A little background might be useful so here goes! In 2003 I had a discectomy and foraminotomy, with minimal improvement as it resulted in scar tissue around the nerve root. In the years following I've tried numerous medications and interventions again with minimal improvement. My Scs trial was amazing, overall I came out with 65% improvement with the Nevro Senza which is why I was so keen to proceed with the full implant. I had the permanent implant 2 1/2 weeks ago.

Since my implant surgery, I have been experiencing extreme pain from the centre of my spine across and around my hip on the side where my battery was implanted. This pain feels like I am getting ripped apart from the inside, and occurs when I lay down, or sit. This differs from the surgical pain, and my only way of working through the pain is by pushing hard at certain points which seems to help localise and stop the pain from travelling. My specialist has said on numerous occasions that this is not normal and is taking the approach of tying to fix this with Lyrica and an analgesic cream, again no improvement as yet. This ripping pain does seem more prevalent when my stim is on. My Nevro rep & pain specialist tells me this is not normal.

My next concern is that when I have my stim on the area mentioned above from my spine out to and across my hip is in constant spasm and is very uncomfortable, worse than pre implant. This is why I did not use it for the 1 week and half. After the rep was insistent I need to have the stim on so she can map my pain for programming I have been working through the programs with no change. Again I'm told this is not normal and to keep proceeding, even though I have tried all program's with a similar result. I guess I am frustrated at the laid back approach of my rep and am curious if it is usual for this wait and see approach. When I question if this could be due to inflammation from the surgery I am told no, this is not normal.

Has anyone else had a similar experience with their scs implant or can offer any guidance as to how programming and post op recovery progress I would greatly appreciate it.

Thanks!

NOT A RECIPIENT
but feel badly
take charge
log all that goes on

ALL
some one who cares

yes AND
 

this is not normal...they are correct

NOW go say to them...YES AND...what are you doing about it...not what can..not what has...not what will....what ARE we doing about it.

Eva said it right...get on it fast and yes for sure check on infections and I mean be adament.....all you have to do is spend some time reading the horror stories from infections on these boards.

Those with much more knowledge will be on soon. Hang in there for some great advice!!

all my best
Johanna

Thankyou for both your responses. Thankfully my specialist contacted my Nevro rep to suggest some programming, and as a result it is booked in for today :-) Hopefully with some tweaking I'll be able to progress and start to feel able to start doing some work (my work is happy for me to work from home for as much as I feel I can handle) and get more active like a walk around the block. Baby steps!

Has anyone else tried Lyrica before? I am on a relatively small dose and really feel, mmm its hard to explain sort of like I've been drinking, the giddy and fumbled talking! A friend actually thought I had been drinking when she came to visit and I had not! I'm finding it really hard to align my thoughts and words if that makes sense? My specialist wants me to keep persisting to see if this improves, I was hoping others may have had some experience with this.

Thanks again, its comforting to know that there are others out there who understand and are willing to help others :-)

yes i have taken LYRICA
and yes i did feel that way when i was
prescribed it but in addition i had severe
reaction blisters in mouth, heart beat was
different, itches, blurred vision
now my eldest is 32 epileptic diagnosed
at 23 is on the stuff
it makes her dopey like yourself
be well read everything on your meds
educate yourself as best you can

someone who cares

Oh Bumpy
 

How I hope and pray you will be soon treated to assure all is well, and if not that your caregivers will respond as they must. It is definitely NOT okay for any caregiver to opine "that is not normal" and take no affirmative action; thus, it is my hope your appointment will be a step in the right direction.

Lyrica- it bears attention, care and respect. Through years of pain my docs had ramped me up to 1800mg Lyrica per day in addition to the opiates and others. Then, one leapt out of his reverie and asked how long I had been on such high dosage. He expressed concern as to potential long term effects and switched me over to Neurontin..... another nerve med. On that particular med I was ramped up to over 3000mg per day.

The ultimate goal was withdrawal from all pain meds and to allow this body opportunity to gain restorative balance. Thankfully with the aid of my stim AND careful guidance of DOC, made the difficult journey from med dependence to freedom. Now I rely dominately on the stim with med every now and again and sparingly.

I pray for you that all will surely be well once this is sorted out,
Mark56 :hug:

Thank you for the feedback Eva & Mark.

Fortunately my specialist has been keen to get things sorted a he will be away for a couple of weeks from tomorrow. My Nevro rep made it quite clear she was unhappy about having the programming sessions, but none th less checked my lead placement & unit functionality. As all was good she lowered my output for all 3 levels to see if overstimulation was the issue. I've been told to keep cycling through my programs for 48 hrs each to see if there is any change and she will review at the end of the month. I don't think it helps my original rep who did my trial has since left so my current rep is covering 2 areas along with training someone new :-s

My doctor wants me to persist with the Lyrica for another week and a half to see if the side effects become more manageable and if I see any improvement. He has also insisted no work for at least another 2 weeks so I cn rest and have no added stress. He has always been good at helping me be more realistic!

Johanna, I've sat down and logged everything I can remember so far and am trying to keep it up, thanks for the tip!

I was also wondering how long it takes for the lead inscision to settle down? On the surface mine looks like a scratch on a raised rectangular lump, however it's very hard to find a position where it doesn't get by pressure. I find the longer I'm out if bed it even starts to become quite painful. My specialist has explained that is it swallow as they stich the wires in place to hold them while the sca tissue form, but that help much getting comfortable :-)

Mel

Just a thought as I'm no surgeon so please just consider this possibility.

Is it possible that the wrong nerves are being stimulated or scar tissue is being affected? I know when I have my lumbar SCS turned up too high in order to get more pain relief it actually causes other areas to start hurting, areas that had not been affected with lower stimulation.

Also, the battery can shift between surgery and being released from hospital or even soon thereafter. As I also have a cervical SCS,I have two batteries, one on each side. The cervical battery shifted after release from hospital and visibly sticks out at an odd angle which makes it difficult to recharge at times. Fortunately this is one time when being overweight has had its benefits because my extra fat has helped deal with battery movement. I have heard those who are on the thin side complain about the battery and it being painful sometimes. When I was going through recovery my battery sites were painful and had to allow time for areas to heal as I'm a slow healer.

I would wonder why they're putting you on Lyrica to deal with new issues post SCS implant rather than finding cause of said issues. If it is temp. until they can find the cause, that's one thing, but hopefully they don't mean this to be permanent solution.

As far as the reps. who do the tweaking, I have mixed feelings about them. I wish we were all as fortunate as Mark was and could "tweak" ourselves but his case is rare. I have found the reps. to be somewhat impatient at times and they can be pushy and seem to be uncaring about your pain. I think they are trained that finding the right "tweak" is the answer and I found myself often agreeing the new tweak was helping when it actually wasn't because I was tired of working with an impatient rep. I can understand they have to work with complaining patients in their job but if they cannot be patient and work with us when we are in pain, then they need to find another profession. If you find a rep. who works well with you I would ask for that rep. and only see that rep. if at all possible. In my dr's. office I never knew what rep. I was going to see and they all have their own way of doing things.

I hope you get some answers soon! :hug:

Hopeful!
 

Omg Fionab, your suggestion that perhaps it could be the stimulation of the scar tissue fits with the symptoms perfectly. I had not even considered this or heard my specialist mention this as a possibility, as a matter of fact he has not mentioned any possible causes. I will defiantly be raising this when I get to see him next in May.

Everyone has raised a good point in terms of it would appear my specialist is just treating the symptoms rather than finding out the root cause, I guess as I'm so lost in the pain I didn't really see this. It's given me the goal to sit down and have my questions and agenda of working out a plan with him to determine the root cause rather than covering it with meds. I've worked so hard over the past 10 years to become drug free and tolerate my pain, and now I'm back on Norspan patches, Lyrica, and panadine forte, defiantly not where I need to be. Honestly I'm not sure how I'd function driving and trying to be productive at work whilst I'm in this drug induced daze, let alone caring for 2 boisterous boys :(

Mark, I'd be interested in the complexities of programming the unit, maybe my background in computer programming might help! Although I'd imagine some knowledge of the nerve mapping may be required. I find the reps are not so much pushy other than insisting its on, but rather not interested at all in the outcome, there I'll ring you, don't ring me attitude is very discouraging and has really made me loose faith that they have any investment in the process. Quite disappointing given you would think that getting to know your patients would help them to have better outcomes for them.

I can't say it enough but knowing there are others out there who have been through this and are so willing to offer support means so much, and gives me so much hope :grouphug:

Thanks,
Mel

Hey Mel
 

Scar thoughts as Fiona shares..... oh so on point.

Actually, along with Coral Toe, she and I are the only two of whom we are aware ever to be allowed to program ourselves. It was not so much the notion of writing logic strings or being up on C++ or any other language, for the computer used to program the battery unit was set with clear parameters which called only for input by the computer user.

Being a bit persuasive, I succeeded in ousting the rep from his chair since I am the only one who lives my particular pain. Those 1 to 10 metric charts of pain score style reports of life are not intuitive and rarely truly understood by the reader. I asked the rep "so, how do you have any clue what the stim might or might not do to my nervous system and the affect on pain?" He admitted it was all based upon my report..... ta da...... case won, he arose from his chair. being plugged in to the computer via my stim remote in a cradle, I assumed the position and with the guidance of the rep proceeded to set all of the programs to My Body, to My Rhythms, to My Nuances.

Result? I have never required a tweak session since then. EVER. I think Coral Toe is the same. Manufacturers are too much in the driver's seat. I even wrote an article for a medical journal on this phenomenon and my doc has never succeeded in getting it published. I even suggested he put it in his name and use me as a ghost writer since my doctorate is not medicine.... still no go.

Is it time to say to the medical durable equipment manufacturers..... and practitioners...... GET A CLUE???? I have written ad nauseaum on these pages promoting better patient involvement, all no no avail.

Good luck Mel, good luck indeed,
and my prayers.... of course,
mark56:hug:

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

Righteous Hate
 

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 :hug:

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 :)

Hi Mel!
 

I apologize for being late getting on your thread :o.
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
:hug:

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

My battery is hurting me too!
 

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

Thanks 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:D

hello me,

so happy to find someone
other than myself that are
suggesting keeping a log
have it available
hang a large desk like calender
it may be better as it is dated
with a year and # day and in word
what day it is
along with that
i also put my doctors
appointments of any kind
and always leave the doctors
office with copies of everything
some may look at you as if you
had two heads
and keep what i use are bags
not garbage
more like cloth bag with zipper
and all copies and receipts in that bag
i don't know if you figured it out
i also suffer from OCD
OBSESSIVE,COMPULSIVE DISORDER
IN MY NOW STATE IT SERVES ME WELL
as i became bed ridden
after surgery # two

i hope this helps
oh, by the way always ask with
whom you are speaking with
and the time if on the phone
especially this tiny little
suggestion makes persons
move quicker than quick
you are in charge of you
some persons as it has
been my experience would
like to deny the truth of the matter
whatever it might be
something as a incorrect scheduling
or billing whatever
it counts


someone who cares