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Why I'm saying no to SCS trial

This is my first time posting, even though I've long known that this is the best place to discuss spine related problems.  I've had a TLIF fusion of my lower back L4-S1, which was brutal and has created painful posterior scarring and failed back syndrome.  I also had an anterior fusion of C5-C7 which later was broken during a strangulation attack, and not since repaired.

I've found my current pain doctor, and another neurosurgeon several years ago quite pushy when it comes to trying to get me to "try" it.  I was scheduled for a trial for a lumbar stimulator a few weeks ago and feel relieved that I canceled it.  If done permanently, the pain doctor actually does the whole surgery and places them above the hip line.  

#1 reason I'm rejecting this is that I'm almost certain that I will have pain around the pocket.  The tissues there right now are sore to the touch and very sensitive.  

#2, no pain management.  I'm on Suboxone, and because of it's blocking effect normal pain medications don't work, only high dose fentanyl. I had sinus surgery 6 weeks ago, and while the used pain medication on the day of the surgery, the pharmacy wouldn't fill for Percocet afterward, and I was told that if I had picked it up I would have violated my pain contract. The result was prolonged suffering and depression. I'm having more and more breakthrough pain the longer I'm on it, which matches my previous long-term (5+ years) use of it with the same effect.  

#3 Can't do deep diving.   I haven't gone scuba diving in several years, but I would like to continue to and learn how to do deep technical wreck diving.  You can not dive deeper than 30-40 feet with an SCS in place.  

#4  Complication rate.  It may be lower than it used to be, but it's still too high.  Just reading here confirms my suspicions that many have worsened pain, or unexpected results.

#5  Not a complete solution.  Back pain is only 20-45% of my very complex pain picture.  I'm basically a walking injury with post-lyme arthritis and multiple neuralgias including trigeminal.   The risk reward ratio just doeesn't seem to be in my favor. 

#6  This wasn't discussed in my initial appointment, but it seems that even the best implants can cause restrictions on MRI's.  If I just had agreed to the trial, I would have then been scheduled for implantation without another appointment or being told exactly which stimulator would be used (it was narrowed down to 2 brands, depending on insurance).   I'm looking at a stack of CD's and films from past MRI's and not comfortable with having the lose of a safe and very useful medical tool. 

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Comments

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 374

    I presume you know that if the SCS trial does not provide you with relief you can opt to not have the permanent SCS implanted. As a former SCUBA diver, I'm surprised that you can manage dive with your back problems. My doctor refused to agree for me to continue to dive although I couldn't anyway because of the pain which the weight of the SCUBA gear would have aggravated and intensified.

  • jimandjrjimandjr Dallas TXPosts: 735

    @grimmy72 The scs trial changed my life. I thought it was working great but really knew how much when walking to my car after it was removed. The pain hit me right away. I had to wait 2-3 weeks to get the permanent and I was counting the days. Luckily someone cancelled and I got it a week before my scheduled install. Trust me. It really hurt me installing the perm scs but I was thinking long term and knew what my end result would be. (Hopefully.) I was able to be more mobile like drive to the store and walk around a little. Standing still at a long checkout line still destroyed me. I was at a point where I would try anything to help my pain. I went many years and 2 cervical and 1 lumbar surgery. Been hurting since 2001. The cervical really wrecked my life however. A whole new level of pain. Looking back, I am so glad my ortho mentioned an scs to me. I had no idea it existed. Not sure where u are on your pain but again I was willing to do anything. I know u want to dive but I just wanted to survive one more day each day I woke up. Getting out of bed and falling asleep were my big challenges. Good luck to you.  

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  • MikethepikeMMikethepike MIchiganPosts: 667

     Hey Jim, did it cover quite a few areas of your body? Did it cover  any of the nerve pain? Also did you have any muscle spasms prior to having it put in?  I’m glad it worked out for you. Also can you adjust the settings yourself?

  • jimandjrjimandjr Dallas TXPosts: 735

    @Mikethepike Yes, Mike. My Algovita has 5 different programs right now. Each custom designed just for me. I had a cervical artificial disc surgery in 2012. In 2013, we did a fusion at the level above. Had lumbar surgery in 2001. We installed the scs to help my cervical pain even though the leads are in my lower back. Of course, it really helps my lumbar pain too. I can do a vibration program that makes me feel like I am in a massage chair. That does help my cervical pain. I have a high frequency program for my lumbar pain. I am constantly chasing pain up and down my spine with different programs, pills, and pain creams. 

  • jimandjrjimandjr Dallas TXPosts: 735

    @mikethepike I choose the program and intensity. Intensity will usually go from 1 to 50. 

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  • hi, 

    IM currently in my trial and I cannot wait to have the perm installed. I can feel the difference already.

    I am not sure why you think you wouldn't have pain management after the SCS, my pain management assured me i would continue on, especially with the management of the SCS.

    I have been in pain management for 7 years. anytime i have surgery, ( i have had gastric sleeve and sinus surgery while in pain management) I let my pain management know and was able to take the meds my surgeon gave me. the key to pain management is COMMUNICATION. it says it in your contract, any issues or concerns, call PM. I'm pretty sure they would have given you meds or talked to your surgeon. why would they want you in pain?

    While SMS isn't for everyone, I have heard good results from some. it is the last resort for those who don't want any more surgeries of the spine. Good luck

    degenerative disk disease

    Facet Disease

    Spinal Stenosis

    Lupus

    Mixed Connective Tissue Disease


    Laminectomy (micro) L5,S1 (2012)

    Disectomy L5,S1 (2014)


    Numerous Epidural Injections 

    Radiofrequency Ablation 2016

    Facet Joint INjections 2015-2017



  • I am surprised that you can continue to scuba dive.  I have done some diving and really enjoyed it.  Luckily, I had someone help me get the heavy gear in the water and used side tanks instead of back tanks.  The diving is great because once you are in the water, there is no pressure on your back.  However, certain meds are dangerous to dive with in addition to the chance of back pain while diving.  It was too dangerous for me.

    Wreck diving and cave diving are very dangerous scuba and require extensive training and experience to do safety.

    I have fusion in my lower and chronic pain.  I have had a Boston Scientific SCS for two years and it has been helpful.  It does not take it all away but helps a lot especially when the pain is bad.  I am scheduled this week to get the newer model...Wavewriter.


    I have gladly given up scuba for the SCS.

  • No I don't scuba dive.  Last time I tried was over 10 years ago and I could barely walk.  Maybe if I put tank on underwater.  Always wanted to that more.

    I'm on suboxone  They said you get post-operative pills but only 3 days because it's only going to hurt that long.  Dr. won't discuss risks. 

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