First Steps

Today I was able to reach a representative from Boston Scientific who answered some of my questions about Spinal Cord Stimulators (SCS).  I felt better after talking to her, and my attitude towards SCS in general has improved in the last two days.  I have a boatload of serious questions I will need answers for before being able to make a decision about this – to become a cyborg or not to become a cyborg is a very personal decision – kinda like to be cremated or to be buried – without the gore and death attached…. uhm…something like that.  I don’t take the SCS decision lightly, as you’ve gathered.  I was proud of myself for taking this first step; it was hard to contact the rep, but I put my big girl golashes on and stomped in that mud puddle.  🙂

I also spoke with my GI psychologist today, Dr. OE.  I’m very grateful for her; our patient relationship has lasted more than two years now, and I feel like she knows me quite well and I trust her.  She’s both honest and gracious, able to answer questions directly, willing to point out observations that may be useful in helping me deal with a situation more mindfully/healthfully, an active listener, and she asks me good questions that help me because they provide the opportunity to process ideas as I answer her – she plays a good game of mental ping-pong.  Being the devil’s advocate type critical thinker that I am, this relationship is beneficial.  I like it when I can put an idea out there, whether or not I’m full convinced of it, and she can give me some alternative possibilities which will help me see more viewpoints or dimensions of the same issue so that I can eventually wrap my brain around it and come to a conclusion.  I just wish I had about four hours per week with her rather than one!  There’s so much we never have time to cover in a session even when we’re just nailing one thing after another.

She has considerable experience not just in the specialized area of working with patients who have chronic GI illness, but also is very knowledgeable in biofeedback and pain management circles as well.  I’m finding that she wears more hats than I previously realized, especially as I bump into other practitioners from different fields who know her.

Sadly, because she has been my treating psychologist, she won’t be able to do the SCS psychological evaluation.  I really was hoping she could.  But it just so happens that Dr. CE, another doctor who I’ve written about before, may be able to do the evaluation needed before I can progress with the SCS trial.  Dr. CE had done an evaluation prior to me starting biofeedback for CRPS/RSD, but then told me regretfully that Medicare and Medicaid wouldn’t pay for me to get biofeedback therapy.  But Dr. CE had been Dr. OE’s clinical adviser while they worked together (this is how I found out she was especially skilled in biofeedback), so she would be able to help me.  I liked Dr. CE especially for his willingness to do whatever he could to help me, even being willing to write up very detailed instructions for a therapist who wasn’t biofeedback saavy, so that I could get help.  Also his beyond-the-call provision of his contact information and telling me to contact him any time and feel free to have whatever therapist with whom I chose to do biofeedback also contact him.  I just had that sense that he genuinely cared and wasn’t in it for the paycheck, you know?  I also felt like he didn’t think my physical problems were primarily psychological either, though being a psychiatrist who specializes in biofeedback for pain management, we’d both agree that we can use our mental capabilities to improve our physical state by decrease pain and arousal.  I feel like trusting Dr. CE with my pre-SCS psych eval is the next best thing to having Dr. OE do it herself (since the later is not an option).  Contacting Dr. North (SCS doctor) to find out if Dr. CE can do my evaluation is part of the next step, and I’ve already started that through my BostonSci rep.

Dr. OE, my GI psychologist, asked some really good questions today and brought up a few things I’d not thought of yet.  She’s been taking a pretty practical approach lately to helping me manage my healthcare jumble.  There’s SO MUCH to manage, so I appreciate having another bunch of neurons to help me keep it straighter, recognize the chains of command and process that needs to unfold, who I need to talk to next and for what.  Managing all this alone is stressful to me, so she’s inadvertently helping to decrease my stress – how lovely!  😀  That’s why I “hired” her.

I don’t want to sound all negative about SCS and its possible benefits, but if you look at my questions and concerns…it probably does appear mostly negative.  That’s because I want to be realistic and I already know the wonderful things SCS *may* be able to do for me and how pain relief may open up new possibilities in my life; it’s not too hard to figure that part out.  I need to know the risks.  I wanted to know what she thought of my processing of all this to this point.  Given that she’s worked with pre-implant SCS patients before (I thought “You’ve worked with SCS patients?  News flash!  She’s like the Barbie of psychologists!  I mean, how many psychologists are so awesome they can rock their own Bristol stool chart in their office while nonchalantly saying they’ve worked with SCS patients?” but I played it off all cool), she was able to tell me that she thought my expectations were realistic.  I’m not saying I expect this SCS to be a cure-all or to be without risks, nor to be an easy process.  I already have a fair amount of knowledge on the topic (for a newbie) and I’m asking good questions; I’m not naive.  Some patients feel like I do – a bit desperate for pain relief as well as scared to be at the end of the road for what medical knowledge and technology can do for them – and this can lead to equally desperate methods of decision making where answers and plans are not obtained beforehand and expectations are unrealistic (such as expecting to be pain-free with the SCS, or the implantee not realizing that he or she will need significant help with physical tasks for several months after the implant procedure).

I’m happy with the progress I made yesterday and today with writing down my thoughts and questions, trying to get answers, advocating for myself and contacting my doctors and trying to keep everybody in the loop.  It’s a ton of work and exhausting on many levels, but I’m being responsible.  I’m far from being committed one way or another to getting an SCS.  Rather, I’m simply cutting through some of the layers of red tape that will be in my way if I do decide I want to go that route and I’m opening up the possibility of going for the SCS trial if I decide to do that in the next few weeks.  This is info-gathering mode.  I won’t be “in it to win it” until after the stimulator trial anyways, assuming that goes well and I’m ready for the Super Bowl.

Timeframe?  How long do I think it will take me to make a final decision and then get it done or not?  Hard to guess.  My considerations include Obamacare’s mess being implemented in January.  If I want to get this done in the next two to three years, I’d really prefer to get it done sooner rather than later because who knows whether or not these stimulators will be covered by Obamacare after January?  Besides, if they aren’t covered, what happens to those who recently received stimulators?  Will they be left high and dry without reps to come reprogram their units when something doesn’t go well?  Oy, that’s a scary thought.  That is one of the reasons I’d strongly prefer to get this show on the road so that I could have the implant surgery with a few months of adjusting and reprogramming (which requires frequent company rep visits) before the mess hits the fan in January.  I also do NOT want to be going through surgery anywhere near the holidays!  It’s impossible to get ahold of doctors, everyone is stressed to the nines, and all in all it’s just a bad idea in my experience!  By the same token, I’d rather have a new stimulator to figure out before the holiday season even comes around so that potentially I can travel to see friends/family in November or December…or have recovered well enough to have them visit here with me.  Then January comes up quick and I will likely be making a trip to Florida to see Dr. Thompson (dysautonomia specialist), assuming Obamacare doesn’t make that an impossibility too.  It sounded to me like the process of going from here to implant didn’t take all that long, assuming I was ready to git ‘er done, perhaps something like six weeks, but maybe I misunderstood?  So I have plenty of time and I’m not going to let my ideal timeframe ultimately pressure me into a decision in either direction.

These are just considerations, but they affect what I want to do now and how fast I want to move through these beginning stages – the psych eval and 1-2 week stimulator trial in particular.  Especially given that the stimulator trial has significantly less risk involved than the implantation of the permanent device, I’m trying to get to the place where I’m ready to do that soon…and if I decide against it, that’s fine too.  I’m not going to berate or judge myself harshly for the decisions I make; I’m choosing not to consider the time and effort I’m putting into these things as “wasted” or “wasteful” even if I don’t proceed beyond the first steps.


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