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What to do AFTER the trial and BEFORE the permanent?

RRraeRRRrae Posts: 85
edited 06/11/2012 - 8:40 AM in Spinal Cord Stimulation
Hello SCS comrads !
This may seem a bit of a kooky question and my trial date is coming soon, so i don't have much time to go back thru older threads for advice....

Here where i live, the protocol is to wait 4-6 weeks after a successful trial SCS before being able to get the permanent. Reason being, they want the 1st incision to heal B4 doing the REAL DEAL.
I have come across several posts indicating that the pain is twice as excruciating during the 'down' time after going thru the trial. Is this true in many cases?
ALSO...have there been many instances where the trial procedure actually causes MORE nerve damage than what was already there? In other words, have there been instances where the patient regretted doing the trial because of ending up in worse shape?
AND...I've read of many cases where the trial seemed wonderfully successful, only to be disappointed that the permanent SCS implant controlled only 1/2 of what the trial did.?
Feedback? :??
Is it obvious that I am getting cold feet...as in NERVOUS?!! :SS
Would really appreciate input



  • I've been meaning to respond to your other thread but have been lazy. I suffer from bilateral leg pain below the knee. My nerve damage is actually in my back. I'm 6 weeks out from my permanent implant. My SCS works well for the majority of my problems with the exception of a dead zone in my left leg. That area is supported with scripts, oxycodone, a little. Here is my attempt at answering your questions:
    RRrae said:

    I have come across several posts indicating that the pain is twice as excruciating during the 'down' time after going thru the trial. Is this true in many cases?
    If the trial is effective in masking your pain, when its taken away you might perceive your pain to be worse. I don't believe the procedure makes your pain worse. It's just this flood of what you had prior to the trial coming back.
    RRrae said:

    ALSO...have there been many instances where the trial procedure actually causes MORE nerve damage than what was already there? In other words, have there been instances where the patient regretted doing the trial because of ending up in worse shape?
    I haven't heard of anyone coming out of the procedure with more nerve damage. It's possible this could happen. I would say its the exception rather than the rule. Based on why your getting an SCS, I doubt you will have any problems being you have no nerve damage in your back.
    RRrae said:

    AND...I've read of many cases where the trial seemed wonderfully successful, only to be disappointed that the permanent SCS implant controlled only 1/2 of what the trial did.?
    This happens. They can do a lot with programming to help prevent this from happening. The key is, are you willing to put the effort in to try and make this successful? If your Doctor and you think this may help you, then do the trial. After that, you have 4 to 6 weeks to think it over and weigh your options. I waited 6 weeks for my permanent implant. For the most part, life went on as normal but I had my moments.

  • Good feedback, i appreciate you taking the time. I'm sorry to hear of your left leg. We share in common the bilateral leg issue, however mine seems to stem from the knees and radiate outward. Whereas yours is below the knees. And you know specifically where your nerve damage is. I've never really pinpointed a specific diagnosis and at this point in time I've given up on that. I just want the pain GONE...or at least under control.

    I hope you continue to get success from your SCS. I'm wondering how many times you've gone back to be 'tweeked' and if you are happy with the SCS Reps.
    From the information I've gathered, it seems that good communication is KEY to the success. The most critical moment is when they turn the system on for the first time while still on the O.R. table...we have to be 'sharp' enough
    (despite being sedated) to communicate exactly where the stimulation is being felt. They have to get that 'sweet spot' with the leads. So...knowing this, I've got some 'performance anxiety' going on :SS
    Then, as you mentioned, it is up to US from that point on....following all restrictions etc.

    Then of course, there is always the 'debate' on whether or not to take our regular pain medication during the trial. For people who aren't in this situation it would seem simple and logical to NOT take meds (because how will we tell if the stimulator is working)....but it's not quite that simple for someone (me) who has been taking strong pain meds for 5 yrs. My pain doc said to come to the procedure with my pain meds on board (he doesn't want me in 'agony' thank God)...then he said "when you go home, don't get confused Re: withdrawal pain vs. the original pain condition". I have tapered down the best I can and will weigh the difference as I experience it. It does help to keep a journal. I currently use Fentanyl Patch 50mcg/48 hrs w/Lortab for breakthru. I pretty much know where my baseline pain is, so hopefully I'll be able to identify any withdrawal pain if that will be the case.

    Time will tell.
    I am very grateful for finding this forum. So much info on the SCS. I get MUCH better information from hearing straight from the patients, rather than trying to get the medical personnel to explain things clearly. !

    I appreciate ANY feedback - good OR bad! This is a big deal.
    Thank you very much
  • My trial was done in my PM Doctors clinic. I had mild sedation, just enough to take the edge off. During my trial, I never reduced what I was taking. I'm unable to ramp up to reasonable levels of anything without having adverse effects on me. There were several occasions during my trial where I extended the time between doses. I had the dead zone during the trial, therefore had I not taken anything, I surely would have deemed the trial a failure. You'll be able to tell if its helping with or without drugs.

    I've had 3 reprogramming sessions. I have a Medtronic SCS. I'm able to adjust amplitude, pulse width, rate, and contact on the lead. Next year, I'll be getting another adjustment to tweak my current programs and fine tune my special one.

  • It is very easy to tell the doc when and where you feel the stimulation during the trial. Don't stress over this, it really isn't uncomfortable.

    I had 2 reprogramming sessions after my initial implant and then went nearly a year before having another one. It has been almost 9 months since my last reprogramming and I do not feel the need for another.

    Like Dave, I have a Medtronic SCS with the ability to adjust my programming and shift leads and contacts. This allows me to steer my stimulation into different areas as needed.

    I have done a lot of research into neurostimulation and what is recommended or not in regards to modifying or stopping pain meds for an SCS trial. In all cases it it left to the doctor's discretion and in most cases it is recommended to not stop or modify current medication doses prior to or during a trial.

    Basically keep in mind that most people going for a trial are doing so because pain meds are no longer effective enough in the battle against an individual's pain. So in theory, by staying on your current meds and adding in the help of the SCS, it should be very easy to determine if the SCS is helping you or not.

    Try not to fall victim to over-thinking your SCS trial experience.

    Every case is different and the time from the trial to the permanent implant is up to the doc and of course the insurance company. It is common for a 4 to 6 week wait to allow healing and to minimize the risk of infection. However this is unique to each situation. I went from having my trial leads removed one afternoon to having the permanent implant the following morning. The doc made this happen because he felt the situation warranted it. Otherwise I would have had to wait 4 to 6 weeks like everyone else.

  • Excellent input ! Yeah, I'll be the first to admit i THINK/worry too much.! I'm sure you remember how you felt during the days counting down to the procedure. So thank you much for the details. :SS Any info i can get is very valuable
    Wow C ! I'm amazed you were able to get your permanent that quickly. I actually wondered about that...in terms of if it's an obvious success, why not just "GITTER DONE" ?! But they made it clear that i have to wait the 6 wks. regardless.
    I'm happy to hear you are getting good results even a year plus after.... I've been told (or me 'thinking' too much is a better way to put it :) ) that there is a 'honeymoon' period and then after a while, the "mind-over-matter" (placebo effect) kicks in and things can go downhill.
    Are you happy with the location of your battery pack? I haven't even done the trial yet and I'm already thinking in terms of the battery placement... :)
    Actually, i think i'll start a new thread on that question....just for sh-ts and grins....
    Thank you all so much !
  • Just 3 more days to go before your trial!! How exciting for you!!
    I should have answered one of your questions some time ago.
    Sometimes we never know what brings on Neuropathy. I have it in both my feet and legs and have read a lot about it. Sometims Doctors just can't find the cause.
    Just do not over expect with the SCS.
    Some things the SCS does not help with. I am afraid your legs will still feel heavy and you will still have problems going up steps.
    The SCS is considered a success if it eases 50% of your pain. A lot of people get better relief than that. As much as 70% or 80% relief. You may be able to cut back some on your pain meds but not all.
    I had to sleep in a recliner during my trial because I sleep on my back. Also one of those reacher, grabber tools comes in very handy. You will need to wear loose fitting clothes. I wore long loungers. You are going to have long wires dangling from you back during the trial. Be careful not to let them catch on something. You will have to clip the control to something. I had to clip mine to the top of my loungers. It may sound scarey but it is really no problem.
    Turn your stimulator way down before you lay down. Turn it so low you can't feel it. When you lay down the stimulation is very strong. Just turning your head can change the stimulation. This is normal during the trial. It is very posetional. They will give you a few different programs for your trial but you will soon learn the one that works best for you. Make sure they leave the one you like the best in when you have the permanent implant.
    You will do just fine during your trial. Very best of luck to you Rae. I will be thinking of you on the 7th.
    Sending you a hug >:D< and a tail wag from Pepper.
    Patsy W
  • I have had my implant since August of '09. Not that long I guess. I'm have terrible rib (or whatever organ is under it)pain when I turn my stim on. It helps some of the original pain, but not worth the ache the device causes. Reps have tried to adjust to no avail. Is this a failed implant? Can someone offer help? I'm due to see my doctor next week. I am so very sad about all this.
  • Good luck to you on the 7th! It is such a big step and quite nervewracking, but you need to know if you can get some relief and this is a good way to find out. I had a lot of procedural pain in the first 2 days of the trial. My PM doctor said it was from the leads running under the skin. By Day 3, I was like a new person. I cried when they removed in Day 4. My experience was that good. I did continue my pain medication and muscle relaxer the entire time of my trial and even continue to take it now, 7 weeks after my permanent implant, with the hope that I won't always need it.
    My SCS is cervical in nature, so I'm sure that some of my experiences are very different than those of you with lower back/leg issues. My battery is implanted in my left hip and I really haven't had a lot of problems with it. It has taken a while for the swelling to go away and now I can feel the outline of the battery under the skin. It still is tender when I sit for a long time, but I think that is something I will always deal with. Not a big deal at all. I have a "paddle" device in the upper part of my cervical area and my rep from Boston Scientific has been great working with me on getting the programming right. He said that the most accurate programming would be that which occurs at least 8 weeks after surgery so that everything has had time to scar in and heal. There is a lot of erratic stimulation with the cervical area (perhaps those with lower back implants experience the same thing), but it is definitely much more stable than the trial was.
    I can't remember what else you asked, but I will look forward to hearing about your experience. I will tell you and the others that the absolute best thing that has come out of this for me is that for the first time in 3 years or more, I am sleeping through the night and not waking up in pain. That is HUGE! It happened during the trial and I told my doctor that if I continued to hurt during the day, it would still be more tolerable if I could get a good night's sleep. I acnnot tell you how much better I feel as a result of good rest.
    Best wishes to you!
  • Thank you SO much guys!
    Hi Patsy!! :) I was HOPING I would get a smile and 'tailwag' from you! Every detail is so important and i read as much as i can from people! I will definately wear loose clothing and the other advise I will take to heart! You are a gem!! ;)

    Thanks to you as well Logan. Taking the time to share with someone you don't even know is wonderful. I hope to eventually be one of those instead of the one always asking questions!! So glad to hear you are getting good sleep! I'm no stranger to insomnia, that's for sure. It can really begin to play on one's psyche!

    Thanks again everyone....and please continue the feedback. I felt so 'alone' with all of this, being from a small town. Now i feel as though I've gained a whole 'bagful' of new friends! :) :)
  • Will be thinking of you tomorrow when your trial starts.
    I so prey for good news from you Rae. This is a big deal that may change your life for the better.
    The hard part will be waiting for the permanent implant if the trial is a success. I will not lie and say the time will fly by because it will not.
    Just hang in there and the time will pass.
    All your friends will be rooting for you Rae. Most people here on SH are great and want to hear a success story.
    Sending you a hug >:D< and Pepper sends a good luck woof woof and a tail wag.
    Cheers :H
    Patsy and Pepper
  • Hi everybody,

    My first post but longtime post reader. Iv had 4 back surgery
    Injections, pt, mylogram, discogram . Current meds are morphine30mg q4, methadone 50q6, neuron tin + prozac. Lots of low back pain. Bilateral leg + foot pain mostly right. No numbness or tingeling just nerve pain. I think I'll have a great trial . Just want to say thank you for this forum, I now have all my questions answered and I am very grateful to have read your experience. Thanks again I update you on my trial in a few days. BTW I live on cape cod, ma. And my appt. Is in Boston, ma. And suppose to have 8-12in of snow in morning. Nothing could keep me from canceling. Hubby taking me very early. Thanks again for this great forum.

  • I am going through the insurance approval piece right now . Which manufacturer is your scs? How's your trial? I hope it's going well. Any advice appreciated!!!
    Multiple neck and back problems, beginning in 1990. Compounded by fibromyalgia since 2000, and diabetes since 2012. Considering SCS Precision by Boston Scientific in 2015.
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