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Experiences with SCS Trial Needed

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:38 AM in Pain Management
Hello everyone. This is my first post in quite a while, even though I do visit this site often.

A short history of my problem: I had a PLIF done on L5-S1 in Jan. 2008. Was doing very well for about three months, then I started getting pain in my left buttocks. The back pain I had before has never returned, but I continue to have quite severe pain in my left buttocks.

I have had Selective Nerve Root Block injections done. A little relief from the first two injections, and no relief from the third.

I also had a Botox injection into the Piriformis Muscle to see if that was the problem, and received no relief from that.

I have had Physical Therapy, massage therapy which did help somewhat. I have not tried Chiropractic, or Acupuncture, which I may try now, after my aborted SCS trial I had today.

I went to the Pain Treatment Center this morning to have an SCS trial done. I had my hopes built up that I finally was going to get some relief from the constant agonizing pain in my left buttock. Unfortunately, the trial went very badly.

After the two leads were placed, and the stimulator turned on, I only got a buzzing sensation across my stomach area.

The Doctor moved the wires several times, but could never get the buzzing in my leg, or buttocks.

Needless to say, at least in my experience this morning, is was painful beyond words.

The Medtronic Technician said to my DR. he had never seen a case like mine.

I was trying the best I could do to hold on and cope with the pain, but it was almost unbearable.

The Dr. removed the wires and that caused more unbelievable pain. He was going to position them in another place, but I asked for the procedure to be aborted. In my mind, I was thinking if the trial is so painful, I don't think I could handle the permanent implant surgery.

I feel so bad, I feel like a loser. I feel I let my Dr. and all the nurses down, after all the prep it took too get me to this point.

They said I could try again in a few weeks or months, but I am afraid it will be the same, and even though I have Insurance, my co-pay is still quite high.

I feel now I should have held on and let the Dr. moves the wires, but on the table, I just could not go on.

Has anyone else had this type of experience with their SCS Trial?

I would greatly appreciate any comments.

Thank you so very much, Robert in NC

PLIF L5-S1 Jan. 2008

Medications currently taking:

Oxycontin 60mg 4 per day
Fluoxetine 20mg 2 x day
Tramadol 50mg 8 x day
Tizanidine 4 mg 4 x day evening and night only

Just started taking Lyrica again after stopping several months ago due to mental side effects, and over-agressiveness


  • Were you under sedation for the placement of these leads? All in all the trial is worse than the permanent procedure. I think that is because they don't put you under as much with the trial. I remember talking to them in the trial, when they woke me to tell them where I felt the stimulation...with the permanent I don't remember anything and was so sleepy when I woke up.

    I don't know where they tried to place your leads...and I am no doctor so please don't think I am giving you medical advise. My leads are near the coccyx nerve root, and they can't get enough of the stimulation out of my leg. It wouldn't be too bad but it cramps my calf muscle. In one of my tweakings I told the rep I felt the stimulation in my foot and toes. It really felt good...like a wonderful massage...but that wasn't where my pain is. You might see what he says is so different about you, and ask if a coccyx nerve might control the area of your pain. No one can tell you if you should try again...only you know if it is something you are willing to endure. If you decide to go ahead you might talk to the doctor to see if they can give you something to help or put you under anesthesia a little more. I don't even know if that is an option.
  • Thanks Monib,

    I was supposed to be under light sedation for the trial. If I was, it must have been very light, because I was able to drive myself home afterwards, even after they gave me Versed, and Fentynal for pain after the procedure.

    If I do decide to try it again, I will ask for more sedation.

    They place the leads just right above L-5. He did not tell me exactly where, but from where my bandage is, it looks to be about L-2 or L-3.

    I thought from my reading at this site, that the leads were supposed to go higher, but I quess the placement has to do with were the pain is.

    Thank you for your reply
  • There has been several on here that have had to move lower because their nerves are wired different. For the Trial mine where in the Lumbar area but it wasn't hitting the right spot. During the permanent placement they tried to stay in the lumbar area but I wasn't getting the stimulation I needed. Or so they told me I don't remember anything. So they closed that up and went into the coccyx area. Doesn't sound like you were under that deep. You might talk to them about that. Please feel free to contact me with any questions I might be able to answer. Good luck and let us know what you decide to do.
  • Several months ago I had a nerve stimulator trial and I found it to be the easiest,most pain-free procedure I've had so far. Although, it did nothing for my pain and the leads were pulled several days later. My pain is in the coccyx/sacrum area. My Dr has suggested I go through a trial again and the leads will be placed at the lowest possible point, through the epidural space and down to where my pain is. I'm waiting for approval from my insurance co. for a second trial. I'm still going back and forth with this and am not sure yet what I'll end up doing. I don't think we should be afraid of a second trial and a chance for some relief from our pain.

    So sorry this trial didn't work for you...what a disappointment!
  • I did my trial a couple of weeks ago. I was required to bring a driver. My Doctor fed the wires up from my L4/L5 area (guess) to T11/T12 on the right side and T12/L1 on the left. It felt a little uncomfortable while he was doing it but I have lots of room for someone to work with down there, no lamina or facet joint from L4-S1. Initially, I had stimulation in my coccyx/sacrum area from the lead on the right. The following day they reprogrammed me to another contact to reach my feet.

    I can't believe they let you drive home after the trial, that's insane. If you opt for another trial, you may want to ask for a little more juice to make you comfortable.

    Good Luck with whatever you choose.

  • I had a difficult time for my trial because it turned out that my nerves were not amatomically in the same position as most people. When he first placed the wires they were stimulating the front of my legs instead of the back of them. He litterally had to map my nerves to get them to the right place. It was extremely painful and I ended up crying towards the end of the procedure. However, he did eventually find the right areas. Even with the pain, I was really glad I did the trial because it definately helped and I am getting my permanent implant today. You may have similar differences with your nerves. Sometimes they just encounter differences for people. How much experience does your Dr. have doing the SCS?

    I would post more but I have to get going.

    I am sorry that you had to go through such a difficult procedure. If you have more questions about my experience PM me and I will try to respond within a few days after I am up to it.
  • What kind of doctor did your trial - a pain management anesthesiologist or a neurosurgeon? Clearly, yours is a difficult case, so I WOULD try again, but ONLY with a neurosurgeon. The PM docs are really great for EASY, normal, no problem cases.

    My SCS trial also went horribly wrong. You can search my username in the Pain Management Forum. But, I persevered and had a neurosurgeon implant the permanent and it is awesome.

    I do want to say GOOD FOR YOU, for refusing to get up off that table until the leads buzzed in the right place. That is my BEST advice for anyone.

    If they place the leads, turn on the stim and you buzz somewhere other than your pain area, make them adjust UNTIL you buzz in the pain area. Doc may say (as mine did), Well, let's just let the rep work her magic. BUT, there isn't THAT much magic if the leads are in the wrong place. And tons of magic if the leads ARE in the right place.

    During my trial, I had horrendous, unbearable pain because the leads were pulling on scar tissue, which was jerking my nerves. Does that sound like what you experienced?

    I would not want to be sedated to unconsciousness during placement. I have a friend that happened to and because she was "out", they dug in her back for 5 hours and she now has tremendous problems to overcome. Being awake but with TONS of lidocaine and maybe extremely light sedation is the most I wold want. I want to be able to TELL them if they are hurting a nerve or else how would they know? Do you REALLY want to be asleep during a procedure like that? The damage that COULD be done is too great, and happened to my friend.

    For MOST people, the lead(s) thread up in 20 minutes, zip zap. For difficult cases, like us, a neurosurgeon is called for. A specialist with nerves.

    You might also need a paddle lead trial. PM docs DON'T do those. Consult a neurosurgeon ASAP.

    I am not a doctor, this is not medical advice, but I DO know how you feel as it happened to me.

    Take care,

  • I appreciate every ones replies.

    To Dave: They did not know I drove myself home. I did have someone to pick me up, but when I got to the parking lot I felt fine. I almost believe they forgot to give me sedation.
    Maybe it just takes a lot to affect me.

    To Cheri and Anjaun: The Medtronic Tech told me, in sort of a joking way, that I must be wired in reverse. He may be correct. The Dr. said I may be one of the few people that they can't stimulate the spinal cord.

    Cheri, the Dr. is an Anesthesiologist specializing in pain treatment. If the trial had been successful, the final implant would have been done by a Neurosurgeon.

    Did you have only one trial? Was it done by a Neurosurgeon, or was the first trial done by an Anesthesiologist, and the a second trial done by a Neurosurgeon?

    I did think about maybe having another Pain Specialist do the procedure, but to be honest, I don't know if I can go through that again, unless I am given more sedation, at least to the point I am not panicking in fear.

    Also too Cheri: I have been reading a lot of your posts concerning your SCS, and you gave me hope. It seems like you had the same problem as I. I remember you saying your husband got tire of you going around with your fingers jabbed into your buttock. That sounds exactly like me. I also read where your pain was so bad, you did not feel like living most days, that sounds like me also.

    I will definitely consider having a Neurosurgeon do the test, and I will also ask about the paddle leads. I really don't know how much experience my Pain Dr. has, but i think he has been doing it for quite a while. My primary Pain Dr. told me they have a very high success rate with the SCS. They also said that for me to even be considered for an SCS, I had a high probability for success. Evidently the screening process they go through is very thorough.

    For know, I am going to try Acupuncture, which I never have, and return to massage therapy for a while. I also am going to start taking Lyrica again, even though I had some bad mental side effects the first time. I tried Neurontin, but became depressed, and suicidal.

    Thanks so much everyone, and may you all be pain free someday. God Bless all of You,

    Robert in NC

  • I state this in advance. This is not medical advise only an opinion of what I would do in your shoes.

    Doesn't sound like you were put under very much. Although light sedation is used they can put you a little further under. Like I said I was out...woken up and then put out again. There is hope...especially if your doctor is knowledgable of all the nerve placements. Like I said I had a good trial in the lumbar area but permanent is in the coccyx area. It is possible that your nerves are wired different so your doctor needs to take the time to figure it out. My pain managment doctor is a neuro, but he has the anesthesia as well. He decided to go into pain managment and went back to school. You might try the medtronic, boston scientific or ANS websites to find a doctor in your area.

    Side note...I read today...don't know which site it was but the medtronic gives more control to the patient but the frequency is only up to 130 where the others are up to 1200. Now...I don't know what frequency works better for what area. I had the opportunity to talk to the rep prior to my trial to ask questions...if that is an option you might talk to them about your trial and the pain and all and see if they can carry you a little deeper. Ultimately it is up to the doctor but they do suggest different things to the doctor. Since they work with many doctors they do see different techniques and see the patient a lot longer and know what works and what doesn't. I wish you all the luck and please let me know how you are doing. If you need the websites I can send them to you.
  • Thank you Monib. I will definitely do some more research.

    I really do think I was not sedated nearly enough.
    I was able to drive myself home, with no problems. I was not supposed to, but I felt OK.

    Again, Thanks to everyone
  • According to the St. Jude web site, the sustainable frequency depends on the number of Stim Sets in a program. There is a chart comparing St. Jude Eon Mini, Medtronic RestoreUltra, and Boston Scientific Precision. For all the vendors, the maximum frequency is 1200 Hz for one Stim Set. St. Jude and Medtronic have the same frequency limitations for one to four Stim Sets. Boston Scientific drops off faster than their competitors, to 130 Hz for two Stim Sets contrasted with 600 Hz for the EON Mini and the RestoreUltra.

    Does anyone know what frequency their favorite programs use?
  • Cheri, I don't know about North Carolina and Tennessee, but up here in the Northeast, neurosurgeons don't do SCS trials. Period. St. Jude reps know of none. The best I can do is find a Pain Management doctor, with lots of SCS experience, in a hospital with neurosurgeons on staff.
  • I was twilighted during insertion but was alert enough to answer when I felt stimulation. My trial was unsuccessful due to stimulation was felt in both legs only and not in my left hip and buttock where I needed it. When they were taking it out they tried to move it and see if I could feel it elsewhere. The lower they moved it, the less I could feel it anywhere. Then I felt nothing anywhere. The Dr. says she felt that my scar tissue was hindering the signal from the stimulator and is sending me to the Neurosurgeon to try and make an inscision through the scar tissue and try while on the table to see if he can hit the right area. Yeah, I can hardly wait. I feel like I should change my name to Mrs. Guinea Pig. I still have hope though.
  • Thanks for correcting the record. Monib's entry was based on some old ANS literature I've read while researching everything. The biggest thing with the stimulation is to find a setting that you are comfortable with and is able to block out the pain. If you can accomplish that goal, who cares what settings you use except maybe to compare notes on what works for you so maybe someone else can see if those settings would benefit them. That's a pretty tall order being we're all wired a little bit different and the leads are in different locations.

  • I don't know how it all works...I have four leads and favorite program is at 90 but it uses the battery in a day. I have the Eon Mini from ANS. The 60 works well too just not strong enough for me.
  • My point exactly below.
  • Despite your experience and some of the others painful experiences with the trial, mine was a piece of cake. I had no sedation, no versed, only locally injected lidocaine to numb the insertion area prior to them cutting the small access. I had two trial leads inserted between C7 and T1 and when they were removed at completion of the trial it was painless.

    Monib, the Medtronic RestoreUltra is the SCS that is capable of more patient programming control than other SCS's. (called TargetMyStim) It is a very cool feature and one that I am lucky and grateful to have.

    Robert, welcome to Spine Health. I hope you don't give up based on this experience. I'm sure that the doc feels badly that he was unable to get your trial going. Speak to him about the experience and see what kind of conclusion he has come to.

    By the way, Acupuncture is very cool! Not long lasting relief, but any relief is better than no relief!

  • Brothers, are you serious? That SHOCKS me that neurosurgeons don't do them? I would honestly refuse to have it done. Wow. Or fly further south. After what I experienced in my trial with the PM who didn't have enough experience with tough cases, nope.

    I talked to 2 neurosurgeons in 2 states since we moved in the middle of my treatment. Both did the final placement, but had pM anesthesiologists do the trial UNLESS a patient was difficult. That could be that the PM trial was unsuccessful or something about their case had the NS do their trial. When my rep called the NS to report how horrid my trial went and on the first night, didn't look like I would have any sort of trial, he gave her advice on what to try the next day, but if that didn't work, to pull my leads out and have him, the NS, do my trial again for me.

    So yes, Robert, I had the separate NS do my permanent. He was managing my care all along, and had only sent me to the PM to have an "acceptable to him" amount of conservative treatment, although i had already been through it all. We had just moved to a new state, and he had his own rules and regs about what he makes sure happens. Apparently what my other docs did or did not do did not matter to him. But he is the world-renowned NS and trains on the SCS internationally. Edited

    Also, Robert, yep - that was me always pushing into my buttock and hubby was trying to nicely tell me how while he was glad it made me feel better, did I really have to walk around like that? lol I asked if he would dig his fingers in hard for me in the center of that buttock, but he declined. Wonder why. lol

    I had had 3 surgeries worth of scar tissue. My rep also told me after the fact that my PM was not inserting the epidural needle at the right angle and that he had more experience with another brand than the one I had. I honestly think that with this clinic, folks go to PM first, THEN go for surgeries. I had already had my 3 surgeries and only got sent back to PM due to the reasons stated above. As I was in the recovery room after the trial trying to get ahold of myself, the pm doc actually walked in, sat down and nervously asked me if I had had any surgeries. WHAT?????? WTH did he think all those scars were??? Clearly, he did not look over my records and just walked in and treated me like a number. He will NEVER touch me again.

    For the paddle lead trial, my NS puts you in the hospital for 2 days, during which he puts in the lead but entirely differently - no threading of leads. Because of a higher risk of infection, you must stay in the hospital. But, if after 2 days you report you get relief, he goes straight to the permanent placement, so you are done in 2-3 days. (Paddle leads are placed by removing some bone, called a laminotomy, and sewing the lead right up at that level to the fascia, rather than anchoring down below as percutaneous leads are done.)

    Wow, I'm still in shock that neurosurgeons don't do them up north. Freaks me out a little! Move South!! lol

    Take care,


    Post Edited by Authority Member haglandc
    Name of medical professional removed.
  • Sorry, I stand corrected. The litature I was talking about didn't have a date on it, but was posted in early January of this year.

    I was not putting down one brand over another, so if anyone took it that way...I am sorry. I know that certain brands work better for different things. I think it has to do with the doctor and what they are comfortable with. I will say I wish I had a little more control like you do with the Medtronic but for some reason my doctor choose the ANS for me. All that matters is it is helping to control.
  • I just wanted to post a follow-up to my previous post. While I had a difficult trial, my permanent surgery implant this past Thursday was much easier. Even though my nerve anatomy was different, my Dr. had the staff take detailed x-ray pics during the trial so when it came to the permanent implant he had them to refer to for placing the leads. I do remember them talking to me about the lead placement a little, but that was about it. Afterwards he said that the procedure went extremely smoothly.

    Now, I am just referring to the procedure itself. The recovery for the permanent implant is obviously more difficult than the trial.

    Please note that my Dr. was board certified in pain management and anethesia. My neurologist had referred me to him because he didn't have experience with the SCS and in my neurologist's opinion my PM Dr. was the Dr. with the most experience for the SCS in my metro area. So, what I am trying to say is that I don't think that you absolutely have to have a neurologist for a difficult case. What I think you need is a Dr. who has a lot of experience with the SCS and that in my area a PM Dr. was the one with the most experience, not a neurologist. So, in my mind what you really need to find is a Dr. who has the most experience in your area whether it be a neurologist or a PM Dr.
  • My trial was really unplesasant. I think it was th scar tissue the doc (PM) kept bumping into as she was trying to thread those leads. I was on the table for over three (maybe almost four) hours and if I had been given any sedation, it wore off long before my prodedure ended. Just as she (the doctor) was getting the right lead FINALLY in place I started crying and telling her to stop, I couldn't take any more. Afterwards, I told the doc that she should go to Guantanamo and torture prisioners. I cried some more and after I settled down, the ANS rep programed my stimulator. It felt so-o-o-o good. I had to tell him about the Woody Allen movie "Bananas" because he was too young to remember it but there is a scene in the movie where everyone is at a party and they are passing around a glass globe called "the Orb". Whoever is holding "the Orb" clearly experiences something truly delightful and so when my stimulator was turned on I felt like I was holding the "Orb". My back was so sore and black and blue that for the first two days it was hard to determine how well the stimulator was actually working. I then went on to have the paddle leads surgically implanted by a neurosurgeon. The point of my story is that, yes, the trial can hurt but the end result can so justify a few hours of pain. Susan
  • and tribulations....

    My trial placement was also more "problematic" than the permanent. In my original accident I had endplate fractures of T3, T4, T5. Well, the PM discovered at the trial that when the fractures healed the new bone growth put a dip in my T spine right where he likes to go in for cervical lead, so it took 3 tries to get the lead to go in. I did not suffer extreme pain as others have mentioned, but it did hurt more than I would have liked.

    Anyway, my point and a common one in this thread seems to be that once they do or attempt a trial placement, even if the first try fails, when they go back in for a second attempt, they are armed and ready for combat! They have seen the obstacles and have a plan in place to get through or around them.

    My permanent lead placement went incredible smooth, info from PM, I don't remember it at all.
    I have far better coverage than the trial to!
    How the heck he managed to get one lead to be able to pretty much stimulate my entire body from my neck down I do not know, but he did it! My only want is my two programs combined into a third so I can get total coverage instead of the either one or the other I have now.
  • I am so thankful for everyone's comments. It helps me to put my experience into perspective.

    Susan, I can't even begin to imagine going through 3-4 hours on the table.

    I am so happy for everyone that has had success with the SCS.

    I was looking forward to living again.

    Oh well, if at first we don,t succeed, try , try again.

    I hope to someday, hold the "Orb"!

    God bless everyone,

  • Susan, I don't understand what caused the scar tissue. You had a lumbar fusion, and your complaint was leg pain and foot pain. What levels was your fusion?
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