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Experiences with SCS Trial Needed

AnonymousUserAAnonymousUser Posts: 49,322
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
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13

Comments

  • 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
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  • 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.

    Dave
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  • 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,

    Cheri
  • 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
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