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Update on my SCS trial - Day 2

cherish22ccherish22 Posts: 706
edited 06/11/2012 - 8:25 AM in Pain Management
Warning - may be really hard to read - skip if you've had a bad day BUT a HAPPY ending.

First, I have the ANS Eon Mini (trial) for reference.

Have you ever sat in a massage chair at a salon for a pedicure, or have one of those massaging seat thingys? Well, instead of sitting on one, I AM the massage chair! Cool and freaky all at the same time.

I won't go into the torturous details from yesterday - that's why I didn't post yesterday. Just some key words - scar tissue, jabbing through it, nerve roots. OMG OMG OMG OMG OMG The pain I was being subjected to was SO bad that my programmer (who does this every week for years) fainted!!! I only wish she could have fallen on me and knocked me out! lol

They entered through my very low back with the needles (just like an epidural) and threaded the leads (or tried to) through the epidural space to the bra strap as a marker. I had 2 leads in my back, one for each leg.

After it was over (2+ hours instead of 30 minutes), I had vibrating legs alright, but the FRONT of my legs. I don't have pain there. The leads were too high, but after what we had all been through, I'm guessing the doc just didn't want to move them. (For medical types, I kept hearing the words "It's in the ditch", meaning my leads. When they would turn the stimulation on, I would seize up from ribs to hip.
Not the plan. lol) The programmer then spent 2.5 hours trying to pull tricks out of her hat with the controller to try anything to get my back legs to buzz. No luck. (So my 1 hour appointment took 5 hours total.)

Anyhoo......So I come home last night with post traumatic stress disorder or something and was so depressed. I was buzzing but in the wrong places. At 10 pm, my programmer calls me and tells me that at 10am today, the doc is going to pull my leads down one vertebral body. I almost hyperventilate. (I don't plan to go near that man ever again! lol) She promises me he won't hurt me, he won't "stick" me again (I had 6, not 2, 6-inch needle sticks - anyone had an epidural with their kids? Try 6 in 2 hours. With only lidocaine, and not enough of it.)

I show up today, they get me laid out on the table, and take an xray with the C-Arm. And guess what??????????????? My leads had moved down 1 inch!!!!! <:P Normally, that is very very bad thing, but for me - God came and did that for me. No one knows how or why, BUT the doc didn't have to touch me (other than lecture me a tidbit about taking it easy so the leads don't move anymore). The programmer was able to tweak the unit and in 5 minutes, my left back leg to my toes was buzzing!!!!! Yahoo!!!!!! Tears again, but this time tears of happiness. God himself moved those leads, I'm positive. No other explanation. And to the PERFECT spot.

So after the morning appointment, I had my hair done at 2, went to dinner early, went to Dillards and cruised the store, went to Gordman's and cruised the store, went to a furniture store and cruised. Oh, and in the van, I sat straight up like a normal person!! I wasn't fully reclined with a pillow behind my head like the last year!! OMgoodness. So shocking. No pain. (Except my incision sites which are terribly sore, which is expected. I have spent the last 2 years reclined 23 hours a day, as sitting, standing, walking triggers my S1 nerves into major tailspins. Without a tailspin, I burn 24/7 from my buttocks to my feet, mostly on the left leg.)

No Pain!!!!! Hubby is getting a kick out of watching my face, all my descriptions, I can't get over it. I can't believe people can't "hear" it, or feel it.

My little dog, Sweety (a Pekingese) won't come near me (and she is a lapdog). When hubby went to bring her to me, she turned and clawed him for her life, like "get me the heck out of here". I think she thinks I am one heck of a bark collar, or invisible fence or something. I KNOW she can sense this electrical current or maybe can hear it although it is imperceptible to humans. The larger dog isn't bothered, although she won't quit sniffing my "buzzing" leg. (Oh, today in the appointment, they disconnected the lead in my right leg as it still wasn't working, "in the ditch" still). I have a large cable coming out of my back attached to a remote control that I keep in a fanny pack. It is really cute, let me tell you. lol

But my leg isn't really buzzing. There is just a tiny electrical current going in my back an inch below my bra strap (lol) and the buzzing is what my brain perceives. I just think my leg is buzzing.

I will have this until Tuesday when Dr. "Pain" will pull the leads out, which should just be like taking an IV out for a regular person, only I'm gonna probably feel the same pain I felt as he jabbed it up and through the scar tissue. But it should go fast and I'll be ready this time.

If I get procedure amnesia and go forward with the permanent placement (LMBO), a neurosurgeon would do that surgery. And my programmer told me that she called the NS last night, who was in New York on a trip, told him what had happened to me (and he was NOT happy) and got his advice on what to do. That's where the "move the lead down plan" came from. The doc who did my procedure is an anesthesiologist. (Standard
practice). I'm sure they will be "chatting". lol

I am still taking my long acting med but I have not had a single breakthrough med NOR Soma all day!!!

So, thank you thank you thank you everyone for praying for me and sending me your well wishes. You have no idea and wish you could have gone shopping with me today. We are just tickled to death (hubby and I ).

Happy, happy Cheri :D :D

P.S. I ignored people who have not had this procedure but were very against it. I followed my doctor's lead on whether I was an ideal candidate or not (including 3.5 hour psych evaluation, etc.) Only I know what it feels like for my body to burn 24/7. I would make the decision for the trial based on YOUR situation and YOUR doctor's advice.

To avoid my painful experience: Make sure they evaluate how much scar tissue you have, because it may change their "plan", anything from the type of trial (percutaneous or paddle) to what angle they put the needles in, etc. That was my problem and they had the records, just didn't look at them. (We recently moved here and I had to switch doctors. LONG story, but I'm trying to "turn that page" so to speak! lol)
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Comments

  • I'm so glad it finally worked out for you. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Your question about the epidurals-I'm assuming you meant the childbirth kind the way your question was asked.Yep-I've had a couple,plus many spinal taps when I had meningitis..those can be uncomfortable(more so than the epidurals IMO)-maybe because I was not having contractions during the spinals.

    What surprised me about your post.Maybe more confused is that you said that you had no pain,and that
    after the morning appointment, I had my hair done at 2, went to dinner early, went to Dillards and cruised the store, went to Gordman's and cruised the store, went to a furniture store and cruised. Oh, and in the van, I sat straight up like a normal person!! I wasn't fully reclined with a pillow behind my head like the last year!! OMgoodness. So shocking. No pain. (Except my incision sites which are terribly sore, which is expected. I have spent the last 2 years reclined 23 hours a day

    (Oh, today in the appointment, they disconnected the lead in my right leg as it still wasn't working, "in the ditch" still).
    I thought those had to work properly and even then they may not help ALL of your pain?

    Now I'm thinking geez-I want one if it works that well.Is it common to get such great relief? Before this did you ever use a TENs unit?

    I'm glad you are having such success with your pain relief.
  • Yes, I had used a TENS unit before and it KILLED me. It made my pain so much worse. It was explained that since I don't have muscle problems, I have nerve problems, the TENS unit triggered the nerves.

    With my pain, it has always been more my left leg. They put in 2 leads (one for each leg) because they were hoping to be able to use it for what the programmer called "cross talk". Because the 2nd lead is in the wrong place, they just unplugged it and removed the cable so I have less to mess with. That lead will be pulled out on Tuesday, as well. Most people get one lead, from what I understand. But for most of today, I have had my right inside leg buzzing a bit as well. So while only one lead on the left side, it is giving me some buzzing sensation on the right leg.

    The SCS trial goal is to have 50% reduction in pain or more. I have at least 75% reduction in pain overall. Sometimes I feel no pain, others I get a whisper of pain coming through. The program I am using now has a definite pulse, like pulse...pulse.....pulse......pulse. The ones I had the first day (although they buzzed the wrong area) was a constant buzzzzzzzzzzzzzzzzzzzzzzzzz. With no pulsing. I prefer that. This is something that can be tweaked easily. One program she tried on me made me think of a jackhammer on concrete as a style description, although it did not hurt. It is just truly individual what buzzing/tingling style, type, frequency, etc. that someone prefers.

    I had extremely high hopes for this and outside of the horrific experience implanting it, I am THRILLED with the result, and I have all day Sunday and Monday and Tuesday morning to enjoy it!!! (The leads haven't moved anymore, so I do believe God moved them for me! I would know because the buzzing would change locations, or go away altogether. She is using #4, 5 and 6 on my one lead to achieve the buzzing I have. There are 8 contact points total per lead.)

    The SCS is most effective for nerve pain, and really doesn't do a great job at all for people who have traditional back pain, or muscular pain. But if you have nerve pain/ nerve burning, I really really really recommend looking into this.

    Sitting here typing and feeling all buzzy and tingling instead of pain. Amazing.

    Hope I answered your questions clearly!

    Cheri

  • I am so happy for you. As for my own stim trial, its "in the ditch". The psychologist who I made the mistake of asking to see to help me through a 32 day pain flare actually sabotaged my trial. This was AFTER I passed my psych evaluation. I guess he was a very controlling person and when I refused to do additional testing when he wouldn't give me any explanation for it, he wrote a note for my file that was horrible but pure fiction. I am now back to square one. Actually, I could be worse than square one as I first checked whether my old doc would take me back before I told the current guy I wasn't going to continue but when I got home from work, there was a message on my machine from the old guy's nurse saying they had to know why I wanted to leave my current guy b/4 they would accept me back. There's a pet peeve. Why do Dr.s offices call my house during the day when I am at work? So now I have the whole weekend to worry about that! I am totally blown away. This psychologist said he would see to it that I wouldn't get my spinal cord stimulator but I had no idea! Sorry, Cheri. I didn't mean to hijack your post. I'm really happy for you. The happier I am for you, the more sorry I feel for myself. I'll get there one of these days. Susan.
  • Well~I'm glad that it works for you.When will you get the SCS implanted then,and will you have to wean off of your long term meds or how does that work-and do you still keep BT meds around? Sorry about all the questions,I'm just curious.I assume that you would stay on BT meds but wean off of long acting meds,or just greatly reduce the long acting meds.

    I would think that after having so much pain,and then being able to do so much yesterday,that you would still be pretty sore today.When my PM raised my meds each time I was able to do more,and like any time that happens I get carried away and I'm sore the next day...and maybe for a couple days.Of course it's always worth it because I feel so good being able to do so much.

    Well,my pain is muscular and bone,so I suppose I can rule out the SCS.I don't get too much relief from my TENs-but I do use it because every little bit helps..and I'm at the point where I can actually tell if I'm having the type of pain that the unit will help with.That does make a difference because I use to put it on all the time only to end up frustrated,now I know when not to bother.

    Thanks for explaining it to me.You must be feeling as if you have a new lease on life :)))
  • I think its hilarious that your little dog is afraid of you.
    Please keep posting and let us know how things continue. Best of luck. Susan.
  • Hi and good luck with your SCS.

    Please, Please anyone and everyone that is considering a SCS research it completely. Make sure the doctor is well trained on the implantation of the device and that the company rep doing the diagnostics on the device knows the consequences of leaving the device on at an incorrect level. My father-in-law passed away from comnplications of paralysis caused by a SCS being left on at the maximum setting.
  • You and your family must be devastated by the loss of your father-in-law. I am very sorry for your loss. Most of us here do a great deal of research on treatments we are about to undergo and benefit from the input of our "friends" on this forum. Maybe you would like to introduce your own thread and tell the story of what happened to your father-in-law. I know you mean well but it's kind of a "bummer" (am I dating myself here?) when the rest of us are celebrating Cheri's success. Susan
  • It is indeed great advice to research properly. I hope I didn't imply that I did not. I spent over 1 year not only coming to terms with needing this, but also researching the procedure, the devices, etc. What happened to me is rare and does not happen to most people. I may never know all the details as to why. My leads were placed "properly" for the average person and where they are placed on everyone else. For my anatomy, they needed to be lower. Hope I didn't cause any confusion.

    By maximum setting, do you mean 1200 MHz (the maximum for the brand I have)? The programmer controls that setting. Mine is set at 40 MHz, and I feel a constant buzzing.

    So sorry for the loss of your father-in-law.

    Cheri
  • No offense, but I don't see how anyone could leave their SCS set on maximum. In fact I don't know how many people could even get close to a maximum setting. A person would be incapable of moving way before that setting is reached. Is it possible that there was some sort of malfunction or pre-existing condition that the combination of the two caused the complications? Do you know any of the particulars surrounding this tragedy?

    I agree with Stockbroker, it would be nice if you could start your own thread so that we don't take away from Cheri's successful trial thread.

    "C"
  • I did extensive research on the SCS before I got my implant, including requests to the FDA for adverse event report information. I didn't find a single report of significant injury or death as a result of stimulator settings, even with a known malfunction of the stimulator.

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