Quote:
Originally Posted by fionab
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!  |
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
Thanks,
Mel