Boston Scientific Spectra SCSHere’s an update on my experience with the trial Spinal Cord Stimulator (SCS) for treatment of my advanced CRPS/RSD.  The trial lasted one week, October 11-18.  What an experience!!

I was on the table for 2.5 hours as they fed the four leads through four separate epidurals into the epidural space.  They tried to stimulate both legs (hips to toes), my right arm, and my viscera – the areas of greatest pain.  The good news is that they got very good coverage in both legs.  The bad news is that they had to turn off the lead to my viscera because it did not work well, and the lead that was to go to my right arm migrated between the time I got off the table and the time they hooked me back up to the programming computer and the stimulator, so that the stimulation was going into my LEFT arm instead of my right.  That part was rather frustrating.  But I still tested the stimulator in my left arm to see if I felt it would help my right arm, as the ultimate plan is to stimulate all four extremities in case the CRPS/RSD spreads to my left arm as well (which is the only extremity I have which is not presently affected).  Stimulating the viscera requires stimulating the vagus nerve, and given my issues with Neurocardiogenic Syncope (a form of Dysautonomia, as is CRPS/RSD), gastroparesis, etc, this was not judged to be a wise choice especially given the failure to properly stimulate during the trial.  So I was told to focus my energy primarily on the success/failure of stimulation to my legs.

MIRACULOUS!
On Friday I had the procedure and was in bad bad shape by the time we were through (5 hours in the car, 6 hours in the office, and nothing to eat or drink, plus NO pain meds due to medical issues).  I did notice on the ride home that the stimulator was helping to cover up some of the pain I get from the vibrations of the engine and the road while riding in the car.  By Sunday I was starting to have enough energy to test out the capabilities of the SCS.  I wasn’t well enough to go to church – having four epidurals and wires coming out my back and two boxes like cell phones stuck to my back and tegaderm all over meant my back was seriously hurting.  But the CNA came out to help me get up and she touched my legs as she helped me wash and dress.  I was uncomfortable but I didn’t react very strongly.  I felt baffled.  She said, “Am I the only one who is excited about this?!  I saw you on Thursday before the SCS trial and you were about to knock me out whenever I touched your legs.  Now you’re hardly flinching!  I’m amazed!”  I blinked a few times and said rather dryly, “No, I’m excited, I guess.  I’m just having a hard time understanding it.  Are these really my legs?”  I didn’t know what to think and perhaps I was afraid to think the SCS was working.
It wasn’t until Sunday evening that it really hit home.  A friend named Joy came over.  I had never told her HOW she could touch me to cause less pain (for me, light touch is EXCRUCIATING, and deep touch is less excruciating but still horrendous; dynamic allodynia is much worse to me than static allodynia), and by nature she put my socks on very lightly and gently.  My stimulator was turned up higher than it was when the CNA touched me.  I watched her put the sock on my left foot (my worse foot), and I stared at it and said, after she’d pulled it on, “Stop.”  She looked concerned.  “Take it off and do it again, please.”  She looked confused, but she did it.  I became even more interested and asked her to take it off and put it back on two more times.  “Now do it with the right foot.”  She put the sock on my right and it hurt, unlike the left.  Due to the placement of the leads, I had less stimulation going into my right leg than into my left, though we’d tried to equalize the two sides.  I quickly found my SCS remote and turned it up 5-6 levels; I was now buzzing like Buzz Lightyear – “TO INFINITY, AND BEYOND!”.  “Ok, that right foot bothered me but not nearly as bad as it normally would.  Can you put my right sock back on again?”  With the stimulator up higher, there was now no pain when she put my sock on my right foot.  A smile started to form on my face; I imagine a little sparkle came into my eye for the first time in a year.  “Now gently rub my legs from my knee to my toes.”  (This would have made me want to attack a person before and nobody would have done this if they knew me.)  She did it.  “Do it again!” I said now with excitement, eyes wide.
The process repeated until I suddenly broke down crying like a baby, but with all happy tears.  “Joy, this is the FIRST TIME I’ve been able to have someone touch me without extreme pain and the light touch doesn’t hurt at all!!!”  I cried for a long time, overwhelmed with joy.  Though she didn’t know me very well or really understand CRPS, she was beginning to understand, as I cried, just how thoroughly this has impacted my life.  We began crying together.  I said, “Joy, this has the potential to give me a social life back!  This could make it so that I’m not horribly AFRAID of being around people, that I can go to church and give and receive HUGS (I ❤ HUGS!), that I can be more socially appropriate around people, and that I won’t be horribly anxious and scared of children as well as adults because I’m trying to avoid pain all the time!”
News spread like wildfire though I hadn’t told more than I think two other people that day.  My whole church has been fervently praying for me.  When friends came over to help me with personal care and getting meals, I told them they should touch my legs.  Their eyes got wide and they said, “I can’t do that!”  With the enthusiasm of a three-year-old I nearly yelled out, “Yes, you can!  Let me show you…go ahead, touch them light or hard, it won’t hurt me!!”  So they did, and we laughed and cried together.
On Tuesday, just two days after finding out I could tolerate human touch, I allowed a sweet and energetic big-little boy named Michael help me get my shoes on and off.  This kid is so sweet and I feel like I have a real connection with him; he’s spunky, fun, something of a clown, and a good helper.  He’s sadly also one of the kids I’ve feared most and generally kept a 15 foot radius away from in church because he can be a bit all-over-the-place and I was always afraid of him bumping or touching me.  The video below shows one of the happiest moments of my life for two reasons: 1) To encourage him to be a good helper (which he is) and give him the opportunity to get close to me and show him that I love him while… 2) Facing my long-entrenched fears of touch and doing it in such a powerful way.  In the video, he rather yanks on my legs and bumps his head into my calves.  I pull away once in particular but then realize “hey, that didn’t hurt,” and put my leg back where it was.  LOL.
I only captured the video of him taking my shoes off, but he did a great job putting them on as well.  I was so proud of him.  And I was so GRATEFUL TO GOD for this opportunity.  I had wondered, after an unprecedentedly painful year, if I would ever be able to accept human touch to my legs again without intense anxiety.  I had wondered, even if the pain decreased, if I could mentally and emotionally open myself back up to receiving touch even though every touch for the last year has felt like an assault and carried its own mental trauma.  I had, throughout this year especially, cataloged everyone I knew into several groups: those people who did not pay attention or seem to care either when I said they cannot touch me or who understood that they couldn’t touch but did it carelessly anyways (especially hurtful were those who then denied that they’d touched me – the brush of a skirt, the bump of my wheelchair, the brush of papers on my legs in the hospital as a doctor talked at my bedside and I yelled out to stop multiple times but they thought I was being mean and angry when I was just trying to explain the severe pain and anxiety they were producing); those who were careful at some times but, when rushed, would tend to make mistakes that caused me pain; those who would feel almost as bad emotionally as I did physically if they accidentally touched me (from whom I had to decide whether or not to force myself to hide the pain even more); and those whom I could truly trust.  Just one significant incident of a person touching me after I’d repeatedly said “NO, STOP TOUCHING ME!” would cause me to totally lose trust in that person, to become afraid of them, and to move them into a less-trusted category.  This is how I had begun to rate or rank my friendships, if you will.  I wondered if I’d been as emotionally crippled by the pain as I had been physically, unable and especially unwilling to open the front door of my apartment because everything outside HURT…and there is already plenty enough inside my home that still hurts without needing to add paint to pain.  I’ve been in isolation.  I’ve decreased my engagement in relationships in all forms.
This video, which I’m so glad I have now, gave me my answer to the questions about how well I could cope if the physical pain decreased.  Within two days I’d gone from feeling hopelessly afraid that ANYONE would touch me to the place where I let little-big Michael, my happy squirming helper, touch all over my legs.  And though I was somewhat anxious, I was cool-headed and not upset.  I was able to interact verbally and emotionally appropriately with Michael as he helped.  These are things I’ve not done in a very long time.  Personally, I feel this is the greatest miracle.  God gave me the grace and peace that day to show me that the pain really is so severe that anyone who experienced it themselves, even the most emotionally/mentally sound person in the world, would pull away from such painful trauma and that I’m not weird or damaged for doing so.  It is REVERSIBLE.  Praise God!
I was able, with assistance, to put my feet on the floor, stand, and walk with my rollator.  😀  This in itself is absolutely astounding, as I was NWB before the SCS trial, as just touching my feet to the floor was painful beyond description.  I was able to walk further than I’ve walked in months!!  I was able to walk on the rough sidewalk outside my apartment after my concrete ramp ends, without pain.  I was able to walk to the mailbox and back with a few breaks in between!  I walked WITHOUT SOCKS ON!  I even got a ride TO THE GROCERY STORE where I WALKED!  I still knew I had to be careful not to flare-up the CRPS which happens when I stand or walk too long, which can also lead to fractures and spread or progression of the disease.
I was careful, but whenever I wasn’t laying down, I was pushing myself to the limits and giving this SCS the test of a lifetime.  I knew I only had one week to determine its capabilities.  While I’d have longer than a week to decide whether or not I wanted the device afterwards, all my “raw data” upon which the decision would hang was to be generated by this one-week trial.  I was DETERMINED to make good use of it!  When I sat, my back hurt so badly I couldn’t put ANY weight into my back or rest against any chairs or the bed.  I couldn’t sleep on my back or left side, so for the whole week, when I wasn’t standing or sitting (both of which I could only do for a few minutes anyhow), I was in bed, laying on my sore right side and doing everything I knew to take care of my skin and prevent breakdown.  On that account I did well except for one area where the tegaderm was too tight.
Oh, the things I’ve taken for granted over and over which I’m only now in life learning to be grateful for!  For the last year plus, grocery stores have rivaled “hell-on-earth frozen over”.  The cold air causes the blood flow to leave my legs and arms and they become blue and cyanotic.  The air itself is horrifically painful.  Because the tissues become cyanotic, limbs also begin to burn with nerve pain (usually only adding to the burning I already feel on a normal day).  Hell – burning; Frozen Over – freezing.  Tears roll down my face while in refrigerated aisles, and opening the freezer cases is something I avoid whenever possible.  Thermal allodynia has become my most prominent CRPS/RSD symptom and causes the worst flare-ups as well.
I already knew that something was different when it came to tolerating temperatures outside of 68-78 degrees F.  The day before, I’d ever so fashionably walked to the mailbox in my nightie when the temp was 66 degrees F outside rather than 68, and for me 66 is much more painful than 68, but I’d been successful.  Mid-way down the sidewalk, I could feel my nightie brushing my legs and it bothered me, so I stopped and turned the stimulator up and said nightie-night to that problem, telling my friend along the way about the change with the increase in stimulation.  A breeze blew by.  It wasn’t exactly comfortable, but neither was it seriously painful, and I said excitedly, “Look!  It’s breezing and I’m OKAY!  My legs are feeling direct wind!  It’s 66 and I’m OKAY!”  So I already knew things were going well, but I still wasn’t sure just how well.
boot leg warmersAs I mentioned before, a friend (Geri) took me to the grocery store.  I wanted to see if the SCS would make any difference.  We went to Walmart, my 3rd most crippling offender (since we both needed a few things there).  For the record, BJ’s takes the cake, Harris Teeter eats it, and Walmart comes in third place, stealing the leftovers and running off with it.  I didn’t bring my pink booties to wrap my legs in as I do every time I go into an overly air-conditioned place such as a store; I decided to face this challenge full-blast, with my stimulator on High, and no excuses.  In fact, I was wearing sweatpants and I asked Geri to roll my pants up to just above my knees so the air would be in full contact with my legs.
You know those blowers that create an “air curtain” as you enter/exist Walmart?  Those are the first of my nemesis, as one (perhaps unknowingly) experiences three different temperatures within seconds – from outside, to blower, to inside the store – but I crossed through the doors and I was okay!  I walked stiffly like a robot, but I was WALKING with my rollator and I was happy.  I went into the produce section as my first test.  Produce section is colder than greeting cards section.  I was okay.  Then I B-lined for the produce refrigerator – the one with my lovely veggies and berries!  I got up right next to it; I was RIGHT HERE, and it was RIGHT THERE!  I began to get excited, pointing back and forth from me to it (the produce refrigerator) and I kept on verbally describing the obvious, as if I was on Sessame Street: “GERI!!!!  IT’S THERE, I’M HERE, IT’S THERE, I’M HERE!!!!  I can touch stuff!  It’s blowing cold air on me!  I can feel it and it doesn’t hurt!!!”
Ah, I wish others could truly share the remarkable joy of this moment with me.  To do so, you’d somehow need to understand that freezers (especially) cause pain levels of 7.5 to 8 out of 10….and at an 8, I’m considering going to the Emergency Room.  (If you want to talk about hell frozen over, Emergency Rooms would qualify!)  When such simple things are so painful every day, it’s a huge victory when I’m able to experience them without pain.
I wasn’t done.  No Sir E.  I went through nearly every refrigerated or freezered aisle in the store.  I went to the yogurt and butter section which is the coldest, and I rejoiced.  Then I finally hit the dreaded FREEZERS.  I opened one and stuck a leg near the steamy-cold air.  Some pain, not bad.  I came in closer with the other leg.  I closed the door and said (or yelled?) “LOOK, GERI!  I am standing in a FREEZER!!!!!”  But that still wasn’t enough for me.  So I opened the freezer door again and stuck my leg INTO the freezer.  “Look, Geri!  MY LEG IS *IN* THE FREEZER!!!!!”
Poor Geri…she’s the reserved type and I’m….so not.  “Sarah, shhhh” she said.  I quickly responded, “No shhhh, No shhhh!” and kept up my refrain of excited Sesame Street observations; I could have put Big Bird out of job if enthusiasm were a highly-regarded quality for the position.  I gave Geri a big hug and nearly busted out in a sea of happy tears.  What did the other shoppers think?  I have no idea and I didn’t care; they wouldn’t be harmed by a bit of overzealous ecstasy, and I was more aware of the freezer than of anyone else except Geri, with whom I got to share this remarkable experience.  Beaming ear to ear doesn’t begin to cover it.
It was ironic to me that the types of pain I thought the stimulator would cover best happened to be the ones it covered least, yet the ones that are most troublesome to me and which doctors most doubted would be covered were in fact covered with 80-95% success.  The burning pains and bone-crushing pain or stabbing pain were not masked as well – I originally estimated the coverage for those types of pain to be roughly 30-40%, which again is welcome, though not what I was hoping for.  Interestingly, when they took the stimulator out, my burning and bat-beaten pains really came back with a vengeance and my left leg has swollen more despite a decrease in activity.  So I’ve revised my original estimate and now suspect that the SCS was covering more symptoms than I recognized at the time.  But I won’t be sure of this until I get the implant.
When the doctor saw me again on the 18th, I was using my walker and moving well considering long-term immobility (very stiff gait, unable to lift my legs because my hips and knees lock up while I walk).  He actually took a picture!  “This is remarkable!” he said.  “Dr. Bryant is going to love to see this!”  He answered all of my questions and then Dr. Bryant came in to check me out.  I’d shown them both the video.  In fact, Dr. North came into the room at first and I said, with a BEAMING smile, “I have something I’ve got to show you!  The last two times I’ve met you, I suspect the first thing I said was “Hello Dr. North,” which was almost immediately followed up with “DON’T TOUCH MY LEGS!” right?”  “Yes, it was something like that,” he said with a little smile.  I pulled out my phone and played the video.  He watched in amazement as I told him what the SCS had done.  It was a day full of opposite emotions.  While so ecstatically happy to share the success of the SCS, I knew I also had to give back my “candy” and return to the painful reality of life I’ve been battling for so long.  I walked into the flouroscopy room from which I’d last rolled out, and the nurse gave me a few minutes to prepare myself.  I tried not to cry, but to no avail.  Dr. Bryant came in and asked me to turn the stimulator off, which I did after a few slow deep breaths, hoping to keep just a few more precious seconds of relief in my memory so I wouldn’t forget it.  She then asked for the remote.  “No!” I said as I clutched it with an iron fist.  The memory still brings tears.  I got on the table again, face-down in the u-pillow that cradles your head but lets you see the floor, and clung to my remote as the tears fell and bounced on the grayish-white tiles.  She worked for a few minutes pulling the leads out of my spinal cord and removing the tegaderm as I tried to be brave.  After sitting back up, I handed her the remote.
There was no question in my mind about whether or not I wanted to proceed with the implant (which they explained will be a very difficult procedure for me), in hopes that the mountain before me will lead to a valley of rest.  I was told to expect three months of movement restrictions after the surgery, followed by several more months of OT/PT and other therapies.  Six months of total recovery is likely.  I will have to wait 4-6 weeks before I can have the implant surgery, which will rather inconveniently happen near to Thanksgiving and the holidays, though gratefully before January 1st and more “Affordable Care Act” changes which I fear might make SCS therapy unavailable to me due to lack of coverage.
It’s weird knowing I have about 4-6 weeks with which I can try to do a few things I haven’t done in a while because I’m no longer taking much medication (the neurogenic bladder issues have calmed down with a good bit less pain). Still fighting the horrible pain in my legs, but I have more energy without meds which didn’t do much for my legs and tended to make my arm worse anyhow.  It’s nice to be able to remember things more clearly, handle my bills and adult responsibilities with greater ease and accuracy.  I feel like an adult again.  I need to pace myself to avoid a flare-up. Yet I know in 4-6 weeks I’ll be unable to do much of anything for about 6 months, so I want to spend my time wisely and I’d like to do a few fun things.
So far, things on my “pre-surgery bucket list” include:
Hanging Christmas lights with a friend (I keep them up all year but last year’s are all burned out now; time for new!)
Making an Operation Christmas Child shoebox
Blogging
Visiting a few friends at their homes
Sewing a blanket (if tolerable)
Cleaning my car with a friend’s help
Making a few more thank-you notes
Driving very short distances to get a few errands done with friends riding with me (it’s so nice to drive around town a little!!)
…and things I need to get done in prep for the surgery and 6 months following (typically not so fun)
This week, after the SCS has been removed, has been filled with lots of questions.  Sometimes I like to imagine what parts of my life may improve with the implant.  I went to church this past Sunday.  The worship music began to play, and though I was in the lobby of the church (not in the auditorium) and the music wasn’t overly loud, the vibrations of the music sent my pain up two levels within seconds.  My legs swelled despite wearing my pink booties over my shoes because I couldn’t get the temperature just right, then the burning became an inferno, and people accidentally bumped me.  But I was rather rested (despite the back pain) from a week with much less leg and arm pain and I was and still am very hopeful for a brighter future, a better 2014.
Perhaps I’ve mentioned it before, perhaps not.  It’s hard to talk about.  I feel like I’ve lost music.  I’ve lost my ability to play my instruments without much pain, and attending a concert seems to me like torture rather than a treat.  I LOVED playing in orchestras, concert and marching bands, jazz bands, and singing in choirs.  In the last year, I haven’t even tried.  The vibrations necessary to make such lovely music, the vibrations that one feels in the core of their body and which move us emotionally as we hear music, are themselves intolerable.  The very things I love most hurt, and with music, I haven’t wanted to see how much I could handle…it would just shatter my heart to find out I couldn’t do it at all, so I’ve shied away from it entirely.  But intuitively I’ve known all along that playing alone is painful enough, and playing in a group where there are other instruments playing in lower octaves would undo me.  So when the stimulator blocked the vibrations from the car about 50% and gave me relief of other symptoms, I’ve begun wondering whether it could give Music back as well.  I had not thought to try playing my saxophone during the one week trial, though my back hurt too much and I was too weak to likely do so anyways.  When I pondered the question of the SCS giving Music back aloud to a friend, it made me cry.  I’d asked it in my head, but to hear myself say it out loud….made it a real possibility.
My doctors said they promise no relief with the permanent implant beyond what the trial stimulator provided.  Even if that’s the case, I will be happy.  But being me, I will never stop pursuing whatever means possible (and “impossible”) to gain independence and the ability to do the things I love again, even if I must significantly adapt to get it done.
God has been so kind to me.  According to all of my doctors, the SCS is the last treatment that’s available to me for pain management.  I had been skeptical of any device sold by “reps” due to my inherent distrust of drug reps, device reps, and “Big Pharma” in general, with which I initially associated all medical device companies to one degree or another.  In this case, my skepticism got flipped on its head and I have been blessed with the ability to receive a device that God has allowed humans to create which greatly reduces pain.  I’m glad that I live in this age of technology.  I’m really blessed beyond my wildest dreams, not just now, but forever.
Gutsy Girl
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Comments
  1. Debra says:

    Praise be to the God of mercy and grace, who has answered the prayers of many. I’m so happy to hear this was a success for you, Sarah! I look forward to hearing lots of hugs and touch stories! I can’t wait to share this praise report with my church, who has been praying for you for weeks leading up to the trial, and during. This is simply awesome news. We will continue to pray as you move forward toward your reclaimed life. I’m truly grateful God provided you with the caring folks you needed to get you through this roller coaster ride. May your life continue to bring glory and honor to our Heavenly Father!

  2. Jennie Boyer says:

    That is awesome you had such a great response. I did with my trial too, it was on August. And my stimulator was implanted September 23. Mine is also the Boston Scientific, I was the first person at the Cleveland Clinic to receive the 16 electrode lead. I’m so glad I had the surgery! The recovery is the hardest part, I feel better so I try to do more. It’s a hard road to navigate. But so worth the surgery. I have to recharge about every four days due to my pain level. And I’ve been up there to reprogram three times. The Boston Sci rep says scar tissue forms in 6-8 weeks, I’m at 5 1/2 weeks, so I’m getting close. I can go up how ever many times I want to reprogram, and the scar tissue will change the position , so reprogramming is in order when I have to turn up the stimulation too much. All this reprogramming makes me feel like a computer! 🙂 I would love to talk to you, if you want. It’s so hard to find people who actually have our disease. I pray you get your surgery before January, that would have an issue for me also. It would be a great Christmas present! 😉 God bless and you’ll be in my prayers!!

    • Sarah Bosse says:

      Jennie, I’d love to chat too! I don’t think I have really been able to talk to someone in detail about SCS who has CRPS. My biggest concerns are spread, lead migration, and device rejection. Praying neither of those will happen! I am amazed that you went from trial to implant in 2 months or less!!! How long did it take for you to get from telling your doctor you were interested in SCS till you had the trial? Was it a big fiasco? Sure was for me!!!

      ❤ Gutsy Girl

  3. jlucas10 says:

    I went for the outpatient trial of the subject device in this discussion board and suffered complete paralysis within 1 hour (trying to get relief from a pinched nerve). The wire lead at the T8 area somehow created a blood leak (epidural hematoma) that traveled from the T5 and pooled around the L3. After all the emergency issues that follow such a problem, I now have some feeling after 3 weeks and learning how to walk and do other things completely foreign to my body. What will return or the outcome for me is unknown.

    Has anyone heard of this problem and possible errors of the leads in a simulator trial? My wife and I have searched and cannot find a like problem. Would like to know of others is possible.

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