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Thread: Due for Spinal Cord Stimulator inplant this Friday

  1. #41
    Senior Member NikkiMaya's Avatar
    Join Date
    Nov 2011
    Southern Maine

    Some Pictures of the Trial

    Absolutely PM me whenever! I too have gotten the, "You look great!" response. Really unhelpful. It's not as bad now that I use a wheelchair and obviously can't walk, but because I outwardly don't manifest any signs of illness, people still go there

    I was cleaning off an old computer and transferring photos the other day, and I found a handful of pictures from my SCS trial. I thought you and others here might be interested to see what the device looks like when it is partially implanted. The transmitter box that you can see me holding is extra large because it also contains the programming unit and pulse generator. The real deal that they send people home with is much more sleek, and small as well.

    The wires are labeled left and right so that I can tell when I run different programs on the machine, which areas it will affect. The wires, called leads, come out of the transmitter and go up under the bandages on my back, go under some temporary stiches and medical glue, and into the intrathecal space surrounding the spinal cord. One issue you need to be concerned about is lead migration. This is when the lead wires in your canal slip out of place, and you stop getting helpful coverage. This apparently happened to me, but two different surgeons argued about it and my main surgeon insisted that the migration was too minimal to have an effect. I didn't know what to believe. If you have serious lead migration, you may have to have another surgery at your spinal incision, to put the leads back in place.

    The reason the trial is not as bad as the actual surgery, is because one piece of hardware isn't inserted into your body. That is the pulse generator. The pulse generator is eventually placed in a pocket of skin somewhere in your body depending on where your pain is, and what area of the body the SCS is seeking to affect. I had mine placed on my lower left-hand side by my hip on top of the muscle over my butt. It bothers me sometimes because I'm so small. I can see it through the skin, and feel it pushing against my clothing waistbands or furniture. You avoid this incision during the trial, but eventually it gets placed and typically has a battery that may have to have replaced every certain number of years, via surgery. Including possible infection along the leads and the pulse generator which could also necessitate a surgery, you can see that there are multiple changes for one to have to have another follow-up operation.

    I hope this is helpful, and not scary!
    In our world constituted of differences of all kinds, it is not the disabled, but society at large that needs special become a genuine society for all. -Frederic Major, Former UNESCO Director General

  2. #42
    Thank you NikkiMaya for your willingness and openness at sharing your experience. At first it sounded like you had Marie, Charcot, Tooth syndrome but you have been to all the top programs in the east coast and I am sure they have considered everything including that diagnosis.

    Chronic pain is a time consuming hobby that can rule your life. It does mine. I am about to celebrate my 10th anniversary of SCi with neuropathic pain and every day has been a challenge just to get through to the next morning without going crazy. I have finally found a reasonable protocol with Lyrica and oxycodone for breakthrough pain. I use Ambien at night to allow me to fall asleep while my legs and pelvis are burning up. How luck I am that oxycodone can help me as there are so many that opiates do not help with neuropathic pain. Lucky me. I just saw my physiatrist who suggested that I try a spinal stimulator and could tell from her language that she was anti-opiates - even if it helps. She told me she will guarantee that the opiates will drop my testosterone levels and make my pain worse and are generally bad. I wouldn't care if they made my hair turn purple if they helped me get through the day. That really raises my hackles when someone who sees people in chronic pain are anti-opiate. Well, she suggests that I try a spinal cord stimulator. Hey, it has been 10 years and I am not about to have surgery for this when I finally have found a way to get through the day pharmacologically.
    My pain doc never thought I would be a candidate for a SCS and I think some docs just throw out ideas like this just like they offer meds at the drop of a hat. This physiatrist suggested I try a combination of Amitriptyline 150mg a day with Ditropan for a leaky bladder despite having a floppy bladder with no spasticity. I started laughing thinking about the anticholinergic side effects I would have to deal with, let alone the secondary iatrogenic hypertension that would require even more medication. This was the physiatrist who cared for Christopher Reeves and I was very unimpressed by her as both a SCI patient and a physician myself. She furthermore suggested that I 'shouldn't be having bowel obstructions' (despite having torn my rectum off my colon and contaminating my peritoneum and having multiple abdominal surgeries with documented adhesion formation). It was so flippant and uninformed, I also had to suppress my laughter or scorn. See told me Senecot should prevent them. Yay, right.
    I know I digressed a bit, but I am not going to go for a SCS at this point in time.
    I appreciate your warning about the SCS and wouldn't want to go through that. That is great you got through Smith College with your disability and I hope you find some relief.

  3. #43

    Unhappy Having trouble with the scs

    I ruptered two disc in L4 &5 in 1987. I have been dealing with HORRIBLE pain for what seems like my entire life (was 28 when injured) Have had 3 back surgerys through out the years. I have in pm for over 20 years. methodone, percocet, neurotin. These eased pain, but the pain never went away completely. I was refered to a pm that may have a solution in jan 2011. This Dr. made the scs sound like a miracle. I asked "Doc if my pain does not go away completly, you will not take me off of my meds will you? I was told that I could take meds as I wanted. Especially if I had pain. I have been for so long, I couldn't even imagine any scs could do this. Well, I artwas right. I have lots of trouble. Pain is some better. But the first thing DR did after stimulator was start taking meds away, now i am 54 years old, do not and have not abused anything. Well, about 6 months ago I started itching, and get huge welps on the battery sight and the where the spot where the leads go in. Go to DR with pitcures of this, they are just, HUH? Do not want to admit the scs could do any wrong. The itching stays on. welps go away after about 4 benadryl. I do not know what to do, But I do not advise anyone to get one. Mine is Boston Scientific. Louisiana welcome to email me with any questions

  4. #44
    back again, forgot to add, has anyone had trouble with their eyes hurting, running all the time along with the welps and itching? All replies appreciated

  5. #45

  6. #46
    Quote Originally Posted by t8burst View Post
    What is a welp?
    I think he means a WHELT (a type of hives). Welp (actually whelp) is when a bitch dog gives birth.


  7. #47
    For NikkiMaya:
    I'm new to these boards so haven't quite figured out how to message appropriately. Hope you get this.

    On Monday, March 5, 2012 I had the SCS trial started with the Medtronics device. I have suffered for 6 years with severe lowere back and leg pain and a failed surgery for herniated disks on S1, L5 and now L4, L3. I'm a 34yr full time employee (boss), mom, wife, and student who just needs to feel better again. Been living on pain pills and now depression meds. You all know the story. Well, yesterday, went into the office for a few hours and my cord from my SCS got wrapped around my chair arm as I stood up and it yanked the hell outta my cord. The tape is very loose and I was concerned that the leads had loosened. Yesterday was fine but today, I barely have coverage unless I lay on one side or stand lopsided. I am so concerned that this will ruin my trial as they said yesterday and today would be the telling days of real relief.
    My question is: did you have any issue with the tape or the leads loosening? And, how has the SCS changed your life?

  8. #48
    If you do not have pain when off of your feet, specifically lying down, how will they know where to hook up the test stimulator?

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