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Update on my permanent SCS procedure yesterday

cherish22ccherish22 Posts: 706
edited 06/11/2012 - 8:26 AM in Pain Management
Currently, I am not a case anyone will want to use to base their decision. Do not let my experience color your decision-making process. I am a rare bird, so please remember that!

A little background - my trial procedure was a nightmare (horrible pain, tons of scar tissue, or so they thought), but once the lead was in place, I had a wonderful 5 days of pain relief.

So I go yesterday for the permanent placement, and this is with a neurosurgeon (who had referred me/required me to go to the anesthesiologist who did the trial/pain management). It did not go well. The good news is that I had good pain control, so I did not suffer. But being awake for the entire procedure, I knew something was going wrong. Doctor had promised to go immediately to a paddle lead if he encountered any problems, and he did not.

Some details: This renowned neurosurgeon (in SCS training, research, etc. and has done over 2000 procedures) said I have an anomaly in my spine. He can't tell what it is because it doesn't show on MRI, CT or Myelogram, but something is in there causing the leads to not progress, not behave, etc. He had to use a rare procedure on me to even get the leads in (I heard a nurse ask him what he was doing and he explained it - he had to use something like a straw to push all the way up to my midback and then thread the leads through the straw? (Straw was the word they used but I'm sure it is a medical device). I don't know how truly rare it is, but he rarely has to use it.

The first lead he put in looked perfect and when they turned it on, my right leg was buzzing. The entire right leg and foot. That's nice, but my pain is in my left leg. So he put in another lead, with much more difficulty than the first. It took forever and ever and that lead only buzzes the front of my left leg, just like the trial did. (until my leads migrated down an inch on their own). I burn on the back of my left leg, so that is where I need the buzzing.

Everyone involved says they cannot move my leads down any farther safely, so they don't know what to do at this point. Not wanting to give up, but trying to figure out how to get that perfect placement I ended up with during my trial, because apparently there is a very narrow little window of "good space" for the lead in my messed up back. They also said this anomaly is far above my surgery area, so it cannot be related to my surgeries. They don't know if it is scar tissue or what. And I am allergic to contrast dye, so I won't be having any testing using that and from what I understand, that helps light up the scar tissue that might be present and otherwise not seen.

After the procedure, Doc, nurse and programmer came to my room to discuss my extremely difficult case. You could see the exasperation in all their faces. I was in shock that I didn't end up with paddle leads and finally found out why. Doc says that not only is there an anomaly of some sort in my spine, but my nerves are not "normal". Meaning, when he stimulates a certain disc level, that nerve doesn't respond. A different one does. Also, he is considering that maybe I have too severe of nerve damage to be able to get a good "stim", although that doesn't explain my good 5 day trial. It is possible I have a genetic mess up amongst the nerves. I wish I had better terminology for you! lol

So, he had no idea where to put the paddle lead in if he had gone that route. Where he always puts it on everyone else did not work for me, so I would have had a useless laminectomy (bone removal). I am literally THAT messed up/different than normal. So what I think they are doing now is using this as a second trial for HIM to decide what the heck is going on with my nerves, what level to go back in for the paddle leads. Right now, he has my leads down as low as he ever goes, and he rarely goes this low on anyone. AND I still don't feel it in the back of my left leg. Well, I take that back. If I lay flat down on my back with my legs almost higher than my head, I can get some buzzing in the back of my left leg. THAT will not help me get my life back!! lol

It is discouraging, but the problem is ME. I know I'm in good hands, I just wish I weren't facing more surgeries or problems. My back is KILLING me, as you can imagine, with all the manhandling that had to be done to get those leads in at all. It was quite a difficult procedure for the doc, but I did have a tiny bit of Versed and LOTS of local anesthetic, so I didn't feel pain at the time. (The trial I felt so much intolerable pain that my programmer had a vasovagal reaction and fainted in the middle of it. Yeah, not good.)

I go tomorrow morning (as far as I know) to have another appointment and for what they are calling "discussing plan B". I'm assuming that means another surgery for paddles leads, but I don't know.

Also, I do have the pulse generator implanted in my upper right buttock, and the interesting thing is - I don't feel it. Considering I was cut open, a pocket formed and stapled shut, you would think it would hurt, sting, something. NOPE - I have so much lateral numbness from my hip to my toes that I think this is literally in my numb area. One good thing, I guess!!

My spine is not numb and the pain is intense today. And I haven't had a laminectomy for the paddle leads yet, but my back was quite manhandled. After the straw things used to thread the leads, they then put me out, did the pocket thing in my upper buttock and used the tunneling device from buttock to mid-back to tunnel the wires to connect the device. All that causes pain and I feel it today.

And to top it all off, I was supposed to spend 23 hours in the surgery center, but I was doing so "great" afterwards that they discharged me at 11PM! Everyone saying they couldn't believe how well I was doing "considering" what they all just saw happen to my back. That, to me, proves my high pain tolerance.

So, please do not let my case scare anyone. I had multiple tests, a thoracic MRI, everything someone would need prior. And whatever is wrong with me is a shock and very rare from what the doc says. If he is able to go in and do paddle leads, I already have the tunneling of wires, already have the pulse generator in my hip. It won't big the entire shabang.

The other issue with paddle leads and with my body and nerves being "jacked up" for lack of a better phrase, I would be asleep when he did it and he would not be able to ask me "where do you feel buzzing". There was just a story on here a few days ago of a girl whose doctor put the paddle leads in at the wrong level. I don't know if her body is weird like mine or her doc messed up, but I am now actually glad he waited. I certainly wouldn't want 2 laminectomies while he tried to figure out what level to sew them in at.

What I have learned over the last few weeks, between painful trial procedure, acute pancreatitis twice, and gallbladder surgery and a 10 day hospitalization through Christmas - my middle name is Trainwreck. LMBO



  • Sorry that you're having such a difficult time of it. It will all be worth it in the end.

    Just a side note. I did not feel any pain or burning in the generator pocket for a couple of days. All the pain was centered around the spine.

  • I wish you all the best.
  • I am so sorry about all you went through! Hang in there and try to stay positive, at least it sounds like they WANT to help you, and are going to keep trying. I feel bad for complaining about my pain issues, when you are having such a tough time. How long has this been going on again? I know you have said it somewhere, forgive me....I'll be keeping my fingers crossed for you.
    Allison >:D< >:D< >:D<
  • Hi Cheri,
    I'm sorry to hear this happened to you. I've been following your scs for awhile now on this board, and another where you've left me words of encurragment. I'm just so sorry you have had to go through that. I'm just hoping mine doesn't go like yours, since we both seem to have the same chronic pain problems. I guess I'll find out tommorrow, when I see the PM doc, what they're going to do to this lab rat. :W
    Please keep me posted on your stituation. I really am interested, and concerned.
  • This morning, I had an appointment to meet with the programmer to see if we couldn't find something that would get the back of my legs to buzz. It took 2 hours, but we did it!!

    She ended up employing both leads and almost every single contact point (there are 8 per lead/16 total), so although my power is very low, I am using LOTS of contact points.

    Both legs are buzzing, my rear, my thighs, my calves. Imagine this: You are sitting on a horse saddle that is vibrating. Whatever would be touching that saddle is now buzzing on you. Everything. This could get interesting! lol

    But so far since then, I have gone to the grocery store for a few minutes, a short car ride, and a short walk with the dog (hubby managed the dog and leash). I am being very very careful, not doing anything I shouldn't do.

    Oh, first thing they took xrays and my leads had moved. Monday, the leads looked like a tree trunk on the xray - closer together in the middle but further apart on top and bottom. Today, they are shaped like an oval. Almost touching top and bottom and wider in the middle. No one knows why or how, and they really aren't lower down my spine. They think it has to do with whatever anomaly I have. I'm definitely crossing my fingers that they don't move anymore and that we can keep this great program going.

    I go back next Monday for my staples out and I don't know if I will get another xray or not. Probably not if I am doing well.

    So glad to be able to give a positive update this soon out! I'm sitting here, nicely buzzing, feeling no nerve pain. My back pain is still strong, but calming down, and to this very minute, I have not felt that pocket and staples with the pulse generator. I seriously cannot believe I don't feel that!! (Telling docs how numb I am was always met with "Oh, ok" like they didn't really care so much. But now, this just proves how numb I was, I think! lol They still don't care too much, but it's a plus for me that my upper rear isn't hurting, too! lol)

    Take care everyone,


    Oh, and allibrooke, this pain started for me in August, 2005 but I waited until Dec. 05 to have my first surgery, laminectomy/discectomy. We don't know if simply waiting that 4 months is what caused the permanent nerve damage or not. I am perfectly stabilized, no more impingements or need for surgical interventions, just permanent S1 nerve damage.
  • I hope the SCS works for you. I'm happy for you that you're not feeling any pain now. 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
  • Glad the rep was able to get the coverage you need.

  • You are a wonderful person (I can tell. I have a second sense about these sorts of things. Plus you have a beautiful smile on your picture) You deserve the pain relief. I know you will get it. Susan
  • Susan, thanks so much. I really hope you can get your situation resolved and moving forward so you get be next in line to try this. I will be praying for you!!

    It's now Friday night and thought I'd give another update. I am buzz buzz buzzing right along, with very little noticeable nerve pain at all!! My surgery site pain (both the mid back and the hip pocket incisions) is less and less, and starting to itch, so I know that's a good indication of healing. Oh, I still have never felt the hip pocket incision, just the itching now that is healing. Even once the back incision and soreness calmed down, still can't even tell I have the implantation in my hip. This still really surprises me, if you can't tell! lol

    Every day, hubby takes me for a short walk outside, like maybe 10 houses total, but that is SO huge for me!! I am also being very very good, not bending lifting or twisting so I can make sure my leads don't move any more.

    So far, I have only turned the SCS unit off for a short bit, and leave it on almost 100% of the time otherwise. Just wish I could describe it better for you guys who might be considering this. Having the nerve pain decreased and practically gone just brings tears to my eyes even thinking about it. I can really see how much I will be able to do once I am free to do "more". If I stick with this setup (percutaneous leads, and will as far as I know), I will need to 4 to 6 weeks to "scar down".

    I go Monday to get the staples out, so I suppose I might find out more, like whether the doc wants to do the paddle leads after all or not.

    The biggest other issue is that I just cannot believe that others can't hear the buzzing or can't feel it if they put their hands on my legs. I KNOW they can't, but the buzzing is so amazing, so impactful and feel so strong (to me), that it's just hard to believe it's really "in my head" so to speak. Just a teeny tiny little electrical pulse in my mid-back, changing my brain's perception. My engineer husband is probably really ready for me to accept this and quit asking! lmbo

    Wish I could share this buzzing with you!!

    Take care,

  • I'm glad to hear that you are healing up well and feeling better and better. That's the way things are supposed to work. One thing to keep in mind about the percutaneous leads, is that they are able to give a broader spectrum of coverage than paddle leads can. So if it took some work to get you dialed in with these percutaneous leads, you may not have as good of success with paddle leads. Just something to think about anyway.

    With the percutaneous leads, my doc said no BLT for 6 weeks and my rep recommended 8 weeks. Since I wanted zero problems, I waited 8 weeks. The next day I went diving.

    So just take it easy and enjoy the relief!

  • I'm glad to hear that you are finally getting some relief. You deserve it. >:D<
  • and found out all is good. No mention of going back in to do the paddle leads at this point.

    Programmer worked with me and got me 2 new programs that feel really good, one beats "harder" than the other one for something different.

    Also learned how to use the recharging belt, came home, and was fully charged in less than 1.5 hours, and my battery had less than 1/4 charge left on it. So far, I LOVE this ANS Eon Mini!!

    Staples didn't hurt being removed. Didn't feel it at all over my hip pocket incision (where I have lateral numbness anyway) and in my back area, just tiny twinges.

    If I need help with the buzzing (new programming), I am to text or call my programmer. If nothing else changes, I will see my neurosurgeon in a year!! Woo HOo!!

    So relieved and now I will stay in "elevated princess status" until the leads scar in (4 to 6 weeks)! lol (I'm the only girl at my house, so I like that phrase. lol)

  • Cheri,

    Yea! I am so excited for you! I've also been following your story and am so glad you're experiencing relief. It's so difficult dealing with nerve pain as there aren't many options, so to hear your experience and success is wonderful! Congratulations on being able to walk longer and on your amazing outcome. Keep us updated!

  • That is so great. Glad you are getting relief. Take care.
  • I am close to tears reading your story. I pray this works out for you. I will have to decide for myself if I want to have an SCS or pump implanted based on my surgeon's recommendation. I still have time to think about taking this big step. Can I ask, does the SCS do anything for the back pain? Is it used for the nerve pain and then the oral meds for the back?
  • I don't have much back pain, if any, so I really don't know. It seems that the stories I read from people who don't have great experiences with an SCS are the ones who have more back pain than nerve pain.

    I know I was told that if I did have more back pain than nerve pain, my doctor would have put in the Advanced Bionics brand rather than the ANS Eon Mini. For their practice, the Advanced Bionics brand gives more relief to the patients with back pain.

    When I get back pain, I have overdone it and can lay low and it goes away. If I had more back pain, with what I have read, I don't know if I had would have moved forward.

    My programmer explained it this way: what she has seen is people who have both nerve and back pain. So they get the SCS and it relieves their nerve pain. Then their back pain becomes front and center in their brains, and suddenly their back pain appears to hurt worse than ever. It isn't truly, it's just that the nerve pain used to take up that space within the patient's perception, and with the SCS handling the nerve pain, BOOM, the back pain seems really tough.

    I just kept in mind that the goal of the SCS is to get 50% pain relief at a minimum in the trial. If you didn't get that much relief, they don't move forward with the permanent placement.

    I have had 3 surgeries and have certainly had back pain in the past. But I have really been lucky to not suffer that on an ongoing basis.

    Good luck with your research!!

  • My ANS eon mini covers my back pain. I agree with Cheri it all depends on a successful trial. Did the doctor place the leads in the correct area to capture the back pain you have? If so moving forward makes sense. Having a rep who knows how to capture those areas with great programming also helps. I am so happy you perservered and now are getting your life back. What a great story. Good Luck
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