Tuesday, September 28, 2010

So What Happened To Me? Part 6 - SCS Implant and Beyond

After my SCS trial ended, I was anxious to get the permanent implant, provided I wasn't going to suffer as I just had with the trial.  After spending an unplanned 12-day hospital stay (acute pancreatitis and gallbladder removal) and with the holiday season, it wasn't until January, 2009 that I finally had my SCS implant surgery.


After the extreme difficulties I experienced with my SCS trial,  my SCS programmer,  (having passed out during my trial unable to watch what I was being put through),  had promised to alert the Neurosurgeon who would be doing my implant. (This was the only way I agreed to move forward -making sure that torture would NEVER happen again.)  She was almost positive he would choose to use paddle leads, which are sewn in, rather than go with the percutaneous leads that are threaded up the spinal fluid.

Percutaneous (left) and Paddle leads.

For unknown reasons, this did not happen.  As I became panicked that he did not know and tried to tell him myself, he asked the nurse and programmer if I had had a psych evaluation.  This ticked me off!  This man did NOT know what had just happened to me.  Andy was beside himself, knowing I was likely to back out at any minute if something wasn't done to correct that situation.  Just prior to my surgery, I was talking to the head nurse about how my disastrous trial experience, how my programmer had passed out due to the utter torture I was being put through, and the nurse stopped in her tracks, asked me detailed questions and ran off to talk to the NS. 

As I was prepped and put in position on my stomach, the NS promised me I would not suffer, he would not hurt me.  The most I would feel would be "pressure".  I told him that was what I was told during the trial as well and it made no difference.  A little clueless (due to lack of information), he proceeded still assuring me all would be fine.  Within minutes of starting the procedure, however, the neurosurgeon began having trouble.  So here we were again.  I wanted to cry and did.  Do I stop the procedure, turn back now, and give up all hope of getting some nerve pain relief?  Would I end up paralyzed if I went forward?  Thankfully, this NS had strategies that did NOT involve just stabbing leads up a patient's back and hoping for the best.  He decided to go much higher as an entry point and that worked.  He still had all kinds of trouble, but he stayed patient and calm and did not let me up until everything was perfect.  Thank goodness, FINALLY.

What makes the permanent implant a much more involved surgery is there are several components.  The leads must be placed, whether by threading through spinal fluid or sewn down (paddle leads).  Then, the battery pack must be placed through an incision, usually in the upper buttock/hip or abdomen.  Then the wires that will communicate between the leads and the battery pack must be tunneled down your back, right next to your spine, just under the skin surface.  After surgery, the patient is quite sore, and in multiple places.  I was lucky enough to already be numb in my hip/buttock area and did not suffer from the adjustment to the battery pack. I found this photo and shows how it really is:


In both my trial and permanent procedure, I was awake with a little Versed, taking the edge off. I was fully aware and knew each step of the way.  This for me was very difficult, knowing how much trouble they were having each minute.  During my implant, a nurse kept asking the neurosurgeon why he was doing things so differently than ever before - he kept stating "Her back is odd, there is an anomaly, I do not know what to do exactly just yet".  Ggggrrrreeeeaaaattttt, was all I was thinking!

Placing my leads was very frustrating because when he would finally get the lead just where he wanted (I got 2 leads, one for each leg), the lead might then "fall off" and go "in the ditch" (words I heard them say).  If the lead did not stay midline in the spinal canal, it could cause problems, not work, cause dangerous jerking of muscles rather than mild buzzing for pain relief.

As my engineer husband has explained - I have 2 leads in my mid-back with 8 nodes on each one.  Teeny tiny electrical signals are emitted in reality but my brain thinks we have a major massage action going on from hips to toes.  Quite the "fake out" for the brain!

After the procedure, I was taken back to my room where my husband was thrilled to see me NOT having a nervous breakdown (as I did from the trial!).  He had heard no screaming during, so that was also a positive sign.   lol  However, it was quite odd that this business-like doctor  would not leave my room.  He was fidgeting and upset, repeatedly apologizing for hurting me, he had promised he wouldn't, he felt so bad, was I ok, etc.  It was ODD.  I didn't know he had that much "caring" in him - being such a great technical doctor and not really having developed much of a beside manner.   Even the nurses were looking at him oddly, but still...he did not leave until he was sure I was ok, over 30 minutes later.   I guess he knew then what I later learned - how dangerous this was for me, for the docs to have now known of the "anomaly" - that was why the trial was such a disaster and that doc had no expertise to work around it and only by the grace of God did I not end up in a wheelchair from that experience.  I do not write this to scare folks considering the SCS, but to beg you to pick your doctors well......don't just let any yahoo do it.  If you are a difficult case, make sure all parties understand that.

At the end of the day, I had a successful implant.  However, once again, I REFUSED to get off that table until the leads were in the right place.  This upset the NS because, according to him, he had never placed leads so low in someone's back.  "Normal" placement is around T-9 or T-10 and my leads are now around L-2, MUCH lower than normal.  However, it is at this placement I get phenomenal coverage.  Any higher and it buzzed in all the wrong places.  He did grumble a little about that at the time, but I was adamant and not moving.   I feel this is a KEY to my success.

My SCS unit was turned on AT surgery.  I have read other doctors prefer their patients to recover prior to turning it on.  I am distressed to hear that, because by the time you recover, leads are "scarred down".  If the buzzing were not in the right place, how would they fix it?  I strongly suggest patients request the unit be turned on immediately, even if it will be further tweaked later.  It is simply imperative to know at D-day if the leads are properly placed for THAT patient.  We are all wired differently and the universal setting does not work for all.

I have spoken to MANY SCS patients (successful or not) and the ones for whom the SCS did not work almost ALL report being put under and asleep during placement and not being asked where they feel the buzzing.  The doctor placed the leads where he/she prefers to place them and was done.  This is VERY common.  I am here as a beacon to BEG future patients to take an active roll in placement.  You have to be able to report where you feel the buzzing - there is just so much the programmer can do if the leads are in the wrong place.  I feel like repeating this until you are sick of reading it.  This is KEY.

I have 2 very close friends who have had this procedure done and it wasn't successful and BOTH report being thrilled they were put to sleep and then forgetting that DUH, they were then unable to alert the doc to improperly placed "buzzing".  When my leads were put where the doc prefers to put them, I buzzed in my stomach and front thighs.  I have no pain there.  I needed the buzzing in the BACK, from hips to toes.  That is why he had to pull the leads all the way down to L2 to accomplish that.  This is just how I am "wired" inside.


I followed ALL rules for 8 weeks during recovery, being careful not to bend, lift or twist AT ALL so my leads would "scar down" and not move.  Since March, 2009, I have been a new woman.  My husband got his wife "back".  There is almost nothing I cannot do (keeping in mind I do not life, bend or twist and do not pick things up over 5 lbs.).  But given those restrictions, I can go to the mall for however long, I can go to movies, I can go on trips.  I can go to the salon and get my hair done.   My previous 20-30 minute window for standing/sitting?  Gone.

I still cannot ride for more than 4 hours upright, so we do travel with my recliner in our van.  Our family lives over 8 hours away.  Think "the Clampitts".  lol  We have a Sto and Go Chrysler Town and Country and the seats all fold flat, allowing us to put the recliner in.  Not safe, but doable and I'm able to travel and see family, PLUS have a recliner for me when I'm in strange places. 

Now, I won't lie - I do "pay".  I do have to recover.  But while at the mall, I am not dying of pain.  It is incredible.

Since the implant, I have gone back 5 times for reprogramming, and I love my latest program.  It is set up so that I can dictate how much I buzz PER LEG!!  I turn the unit "on", set an initial intensity level, and then decide if my right leg needs more or less and so on.   And the most amazing change?  Instead of charging sometimes every 3 days, I can now go almost a month!  (Patients are usually advised to charge once a week, but I have no need and can go almost a full month.) Because my doctor does not allow us to be trained in the programming, I do not know what terminology to use to explain the frequency or band width or anything regarding this new program.  I do recommend you ask your programmer to print off your current "good" programs to save in case something happens and they are accidentally deleted or your unit dies and has to be replaced.  This way they can be easily recreated.

My doctor is very strict and does not allow his patients to be given information on how to program their own units, feeling we could really hurt ourselves easily.  Other units are designed to be programmed by the user after a training session.  However, I am able to call up my programmer ANY time and she will meet with me to address any new or current issues.   Sometimes the body builds up resistance to a current setting and a new one makes all the difference.  My doctor wants to be aware of any changes I have to my system and he wants his professional programmer to address them.  Higher quality service than normal, I think!

Keeping it real - As I write this, I am in a horrible pain flare lasting over 5 weeks now, resulting from a recent move and other life stress and I am not doing good.  But, the SCS is still my comforting massage buddy and without it, I honestly feel I would be in the hospital dealing with this pain.  I have done the big 'no no' - gotten "behind" on the pain.  On a normal day, my pain is about a 5 out of 10 on the pain scale.  The last two weeks, it has been 6 to 7 and that is tough.  Shoot, a 5 is tough, but I understand there is no cure for my condition.  Folks who expect their pain to be cured are NOT good candidates for this procedure.  But to sit here with horrid pain and be able to turn my SCS up and help distract my brain?  Priceless. 

I hope my details help others who are researching and considering Spinal Cord Stimulator therapy for their pain conditions.  I pray for everyone to get the relief they deserve.

 ( ( HUGS ) )



  1. Wow Cher,

    That brought back a lot of unpleasant memories about all you went through back then, so I can't imagine what writing it must have brought up for you..... I just remember reading about the way you were being treated as you were doing your darndest to keep us updated from the hospital; and each time you posted from your phone, I remember thinking "OMG! I CAN'T BELIEVE THEY ARE DOING THIS TO HER!" It seemed to just get worse with each day that passed.

    So many of us have been put through absolute hell and back by docs and nurses who just don't have a clue how to deal with a chronic pain patient. It makes you never want to have to be admitted to a hospital again. And they wonder why we avoid the ER like the plague...

    I'm glad that whole part of it is over and that you get the kind of coverage from your Stim that you do. I know it doesn't cover all of your pain, but when/if you can get your neuro pain under better control it's a Godsend! Very few meds will do that. That I know all too well. My current reg has given me better coverage in that area and I am so grateful for that.

    Thanks for sharing the whole story again (well, "again" for me anyway) I hope that things (overall) are getting better in your world every day. Much Love and Many Blessings,


  2. I posted this on my blog too, but didn't want to miss you...

    Thanks for the info on how to embed the URL Cheri! I'll have to find something to test it on! lol

    I totally think you should start a new blog! (says she who barely has enough time to keep track of her blog, facebook, other boards/groups, etc. !!) No, really. If you have the time, you sure have the material. And I think with all the AS being diagnosed today you'd be providing a much needed resource for parents, spouses and aspies themselves.

    I really, really think with your thirst for knowledge and research and your stick-to-it- iveness, you'd end up with a hell of a great blog. Especially with the sense of humor that I know you possess. I mean, come on.... When you live with what we live with on a day to day basis and can still have a sense of humor about it, that's a true gift.

    I think it could also be very theraputic for you, and if you could get the mister and the boys to read it, and even (fingers crossed) participate in it, that would be amazing! Did I mention that I think you writing a blog on AS would be a good idea? Ha!

    Anyway, enough of my rambling. Thanks again for the info. You've been such a help to this newbie blogger! I can't thank you enough. Sending love and good vibes to you and yours.


  3. Oh my gosh, what you've been through!! Thank you for sharing your story. I can't remember how I found your blog, but I'm glad I did. You are an amazing person! Your hubby sounds amazing too! Hugs, for all you've been through. You have a great blog!

  4. I too went thru hell on trial dr used no lidocaine and i caught a huge infection ruthless dr ...now giing to have perm implant with new dr.

  5. I really wanted to be totally asleep for the permanent 1 but now I see why I shouldn't and I got angry when the doctor didn't want to put me completely out my surgery is this coming Thursday. thank you so much for your input and my dr going to be using the percutaneous one not the paddle...im afraid but after a failed spinal fusion on methadone and Lortab I'm ready for this better life improvement now

  6. PLEASE PLEASE ANSWER THIS QUESTION IF YOU CAN...Whats the difference between the percutaneous I am getting THIS THURSDAY and the paddle where the the cut the lamina??? Is one procedure better than the other??? Thank you for your help and response in advance. Please email mr if you can...mplasvegas@gmail.com

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Thanks so much for your lovely comments!