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: