So What Happened To Me? Part 5 - The SCS Trial

Part 1

Part 2

Part 3

Part 4

The SCS Trial

  

I have the ANS/St. Jude Eon Mini.

In a "normal" case, it takes the doctor around 30 minutes to get the long needle inserted, thread the leads up the spinal fluid, position the lead, check with the fluoroscope, and then have the programmer turn on and double check position.  Usually the patient will feel the shots for the lidocaine and then little else.  Possibly pressure, but little pain. 

In my case, what should have been a 30 minute procedure took over 2 hours.   Having had 3 lumbar surgeries prior, I was full of scar tissue and this doctor was unprepared for this.  Instead of 2, 6 LONG epidural needles were inserted inches up my back and then pulled out and reinserted, over and over.   If you have ever had an epidural for a childbirth, you know how far they stick that needle up your back.  Sadly, my husband was just a few rooms down and listened to the entire ordeal.

Leads in spinal canal.

The problem was, as the doc would try to insert the leads, scar tissue was in the way.  As he pushed and pushed trying to get the lead up my back, it pulled and dragged against the scar tissue, which in turn was pulling and dragging on my already damaged nerves.  The pain was indescribable.  I was on the verge of fainting, BEGGING for more numbing medication as the doc had promised.  He thought I was being a pansy, and was irritated with me.  I was crying out, telling him something was pulling horribly, my body was spasming, shaking, jerking, and every time I jerked, he raised his voice.  

The nurses had given me something to bite into, they were trying to hold me down and still, and all this AFTER 5 numbing shots!!  I pleaded with him to stop (when I could talk between gasps) but he felt he was "so close".  One male nurse tried to get the doctor to try something new, but that didn't go over very well.  Just as he would place a lead, it would shift or move out of position.   This procedure is done under fluoroscopy, a type of x-ray, and each time the lead was placed, they would take a look on the fluoroscope, move the lead some more, take another look.  It was tedious.  My scar tissue was causing the leads to have a mind of their own.

My suffering was so great that the programmer actually fainted from having to watch me go through that.  The procedure had to be paused while they tended to her - she HAD to be there to help with the SCS programming.  It gave me a much needed break and nurses wiped all the tears off my face and nose and put a cool cloth on my forehead to help calm me down.  I couldn't even imagine what Andy was thinking at this point.

After getting the left side placed, the doctor started on the right side (I was being given 2 leads for the trial, since I have pain down both legs.)  This side went perfectly.  NO scar tissue in the way.  At this point, the doctor apologized to me when he realized I must have truly been in agony as he realized I didn't flinch a muscle on the other side.  He knew it hurt enough that everyone flinches, but not me on that side.  It was a piece of cake compared to the left side.

The now-revived programmer hooked me up and turned on the stimulation and I felt buzzing in my stomach.  NOT where my pain was.  I needed to buzz down my legs and buttocks in the back.  At this point, the doctor was D.O.N.E. and scared to do anything else.  He promised me that the programmer could "work magic" with her computer and get the buzzing where I needed it.   

Wires Taped Down

Fanny Pack holding battery with cables hanging down.

Trying to be discreet - more of the equipment.  Grooves in my skin were from sitting on the cables.

Remote control for the Trial.

I was taken to another room to recover and I'll be honest - I was in shock.  Utter shock.  I had never experienced such pain and cruelty in my life.

The programmer came in and just sat with tears in her eyes, not knowing what to say to me.  She had never seen such a disaster in all her experience.  She tried to reassure me that he was just trying to finish rather than abort and send me home.  At that point, I wanted to get out of that place and never come back, but I had to finish the programming.  I would later learn that the doctor was not as trained on my particular SCS leads as another brand, and was not inserting the epidural needle at the proper angle.  I guess angle makes all the difference.  Also, had this doctor been aware of the scar tissue, he should have inserted the needles much higher to avoid it.

She gave me about 15 minutes to collect myself and went to get Andy.  Bless his heart, I was so glad to see him but in such bad shape.   I was honestly just sitting there shaking, my eyes wild, trying to process what had just happened to me.   And then in walks that doctor!!!  He came over, put his hands on my shaking legs and asked me "So, have you had prior surgeries?"  WHAT??????????  What did he think those 3 (THREE) huge scars down my back were from?  He left quickly, seeing the state I was in.  I vowed from that day forward he would NEVER touch me again.   Thankfully, there is another anesthesiologist at this pain clinic I can use, since I am under contract with them to not go anywhere else (required).

The programmer, Mandy, came in to start trying different programs to see if she could get my buzzing in the right place - down the backs of my legs.  She had very little success, and she tried for 1.5 hours!  It was exhausting, but the leads were simply in the wrong place.

I was now all taped up, with the leads taped to my back, and the battery pack in a fanny type purse with a belt, and huge cables hanging down.   One wrong move and the leads could be pulled out of position, so I had to be very very careful.  The trial was for 5 days.

I went home broken and wondering how much therapy I would need to get over that experience.  And it didn't even work.  I wasn't buzzing in the right place.

Around 10PM, my phone rang.  It was Mandy, the programmer, telling me she was so upset she had to call the neurosurgeon and tell him what had happened.  He could hardly believe it, but agreed with her that my leads needed to be moved.  This meant I had to go back in and let that doctor pull the leads down a bit, which should be quick and easy.  That took some convincing, as I was not planning on going near that doctor again in my life.  She promised that pulling the leads back down was nothing like pushing them up the spinal fluid.  I agreed.

And the NS said, if that doctor couldn't do it right, HE would get me in a do another trial himself.  (Unheard of for neurosurgeons to do the actual trials.)

I hardly slept that night, just sick about what that doctor might do to me the next day.  Andy did his best to calm me down but he had listened to what I had gone through and he was deeply upset as well.   Well, God himself was intervening, because as soon as they got me on the table and under the fluoroscope, it was discovered that my leads had dropped down 1 inch!!!!  This would normally be a total disaster, but in my case, it was perfect.  That doctor did not touch me again after all!!!  Hallelujah!!  Praise God!

Mandy was now able to start playing with programs again and found some great programs that worked, giving me several options.  It is truly fascinating what all can be done with the programming.  I preferred the constant buzzzzzzzzzzzzzzzzzzzzzz, while others prefer more "concrete pounding" BUZZ   BUZZ   BUZZ  BUZZ.  So many options.  With the remote control, you can turn it up, down, off....so many choices to help you cover the pain at that moment.

Andy and I joyfully went home and set out to try the new device.  We went to the mall, went out to eat, all things we hadn't done in years because that 30 minute window just didn't allow it.  I was in heaven.  My smile those days was something else.  In fact, here is what I called my "pain free smile", as I can see the relief in my eyes from the suffering I had been through for 3 years at this point.  My nerve pain was 24/7 burning, searing pain.

I had the trial in place for 5 days and it wasn't until the 3rd day that I started to be convinced I would like this.  My back had to recover from the trial procedure and that pain had to calm down before I could truly evaluate whether I wanted to move forward with the permanent implant.  Was the implant procedure going to hurt like the trial?  If so, I was NOT going forward.

Mandy promised me it would not.  Mandy, the programmer, represents our local area for the St. Jude brand of SCS and works with the different pain clinics who do the trials, as well as Dr. Feler, my neurosurgeon who would be performing the permanent implant if I moved forward.

For the SCS to be considered successful, it must relieve 50% of the patient's pain.  For me, it did that.  And after much thought, we decided to move forward.  

To my surprise, I was actually crying the day they removed the trial leads.  I had so much pain relief, I could not imagine going back to my normal level of pain and having to wait several weeks for the permanent.  It was December, and we didn't know how fast I could get in.  The trial lead removal did not hurt AT ALL, thank the Lord.  

A word of Caution:  I've had many say it was too bad my doctor did not put me under anesthesia for this trial, and then I wouldn't have suffered so much.  Well, think about it this way.  If that doc was willing to jab and push that much scar tissue while I was awake and shrieking, can you imagine what might have happened had I been asleep?  These docs are pushing lead wires through our spinal fluid.  One wrong move and well......you know how bad it could be.  So, we MUST be sure we have experienced doctors performing these trials AND I recommend being awake.


How else would you be able to tell the doctor that you are buzzing in the right place?  An online friend was put to sleep and woken up to be asked "Do you feel buzzing?"  In her stupor, she said yes.  No one asked her WHERE she felt buzzing.  She had to have 2 trials, as the first one was a waste - the programmer could never get the buzzing in her pain area.  There is just so much "magic" the programmer can do if the leads are placed incorrectly.


We are all wired differently.  For my pain coverage, my leads are down at L2, where normally they are up at T-9 or T-10.  But I refused to get off the table until the buzzing was where I needed it, even though I was upsetting my doctor.  After my trial experience, I was not playing games.  I'll be detailing that procedure in the next post.

As it happened, my permanent SCS had to be delayed because I got very ill with acute pancreatitis and ended up in the hospital for 12 days over Christmas that year.   That was an entire drama all it's own, including an almost anaphylactic allergic reaction to the contrast dye (even with allergy protocol) and hives caused my face and eyes to swell, but thankfully not my throat to a dangerous degree.  Just what I needed.  lol

My next entry will cover the SCS permanent implant and life moving forward.