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Failed back syndrome and coccydinia - need advice

I am a newbie to the site. I'm hoping some of you may have had similar experience and some suggestions about what my next moves should be. Briefly, I am 41 and I have failed back syndrome. I've been living with cronic back pain for 15 years At 25 I had my first AILF at L5/S1. It took 3 more years of pain for the docs to realize that I jhad gross motion in the instrumentation they used (BAK titanium cages). FYI - all my radiology at the time came normal. I then had a 2-stage circumferential fusion with pedicle screws and rods to correct the instability. For the next 8 years I was improved - never pain free - and could function as long as I had cortisone injections every 3 months and took my meds. 4 years ago I became pregnant with my first child and then my second. They are 20 months apart. Since then the pain is devastating. There are so many pain sources that I can't even tell which is which anymore. Last MRI was Sept. 2010 which showed a myriad of issues from T10 all the way to L4 including annular tears, degenerative disk and facet changes, osteophytes and foraminal stenosis. But all mild or moderate. To top it off, over the last 18 months I have developed debilitating excruciating coccygeal pain. I live on 10 - 12 oxycocets a day, nucynta, desipramine and have had several blocks including par vertebral, epidural and 2 SI Rhizotomies. Just had a coccyx xray which came back normal. I'm at my wits end. My kids are 2 and 4 yes old and they need me, but 90% of the time I'm laid up in bed. I need to take matters into my own hands and devise a strategy for going forward.
My research has come up with a few possibilities.
-Caudal block - has anyone had one? Successful?
- ganglion impair blocks (same questions)
- spinal cord stimulator (which scares me to death and I hear is better for leg than back pain)
- seeing a physiatrist for PM&R
- new MRI and CT to compare to the one 2 years ago - worthwhile?
- concerned that, like 12 years ago there may be instability in my cages that cannot be detected on radiology due to mettaluc artifact - but wouldn't the screws and rods compensate for the cages?

Finally, with regards to coccydinia, does a normal xray automatically eliminate micro fracture or dislocation?

Sorry for the epic post, but thought I needed to give some background to get accurate advice.
Thank you in advance not only for yor time


  • snookiessnookie Posts: 359
    edited 08/22/2012 - 12:50 PM
    I have not had spinal surgery, however I have read some posts where people have had hardware removed after a fusion and that has relieved pain. Has your Dr talked about that? I believe there is a test they can do, but I can't remember what. Hopefully some one who has had it posts.
  • MarniMMarni Posts: 45
    edited 08/22/2012 - 1:22 PM
    Thanks for your comment. Before my second and third fusions, my surgeon was going to remove my cages but decided at that last minute that although they weren't helping with stability, they were still useful as 'spacers' between my vertebrae because of my DDD. (Removing them would have been added something like 5 hours to the surgery). More recently, my pain doctor coated by hardware with cortisone (under flouro) to see if it would give me any relief, but it didn't do much. I guess my question would be - if they remove the hardware, wouldn't they have to break the bony fusion that covers? Then you're back to instability unless they add new hardware. Any thoughts?

  • deggeddegge Posts: 5
    edited 08/26/2012 - 3:45 AM
    Thought I'd answer about the spinal cord stimulator (SCS) since I'm wearing one now in my trial phase. I'm on day three. My pain is primarily in the small of my back with some pain in both buttocks. While I have had sciatica, my first surgery 8 years ago did take care of that and the numb foot. However, after only 3 months the pain began to return to the small of my back, first on the right side and now on both. I do get leg aches, hard to describe but seems linked, and coldness in my right foot. Docs don't seem to know what to make of that. The pain in the back is pretty much constant, at times tolerable but periodically debilitating. Can't stand, sit, walk for any length of time - have to change it up. Because some of the pain was in the buttocks and legs, and because I've tried everything else short of a pump, and because I have to take a handful of meds twice a day with some others in between, they decided to give it a shot.

    First, I'd say, it was a bit more of a procedure than I thought it would be (I was pretty used to having needles in my back). Also, during the trial no bending, twisting, or lifting and no showers. So it isn't much fun. It pretty much feels like a small shock (can be adjusted) focused on various parts of your body. But it isn't completely localized so when I have the right leg and buttock tuned up I feel it in my stomach and lower chest.

    Here is what you might be waiting for...NO, it isn't taking care of the small of my back. But I can definitely see how if you had pains shooting down your legs or constant leg and buttock pain, it might help. So likely next Tues or so I'll get it removed and move to my next and last option before another fusion surgery (prior discectomy / laminectomy L4, L5, S1 and recent fusion C3, C4, C5).

    Anyone have any thoughts on the pain pump?
  • Hi Degge. Thanks for the info. I'm sorry the SCS is not working for you. I really, really don't want to try it until I have absolutely no other choices. I have some pain, tingling and weakness in my left leg (front and side of my thighs) and at the front of my left ankle, but really, in the scheme of things, that pain is intermittent and manageable. To be honest, I have been dealing wih the FBS pain for so long that I can even (begrudgingly) handle that. But the coccygeal pain. OMG! That is excruciating all the time. I'm going to discuss a caudal block and ganglion impar block with PM this week. Have you had any of those? Did they help at all? I hope you don't have to go through more surgery. My fingers are crossed for you!
    Thanks again,
  • deggeddegge Posts: 5
    edited 08/26/2012 - 4:26 AM
    Marni, I've had many, many nerve blocks and steroid injections starting in 2005 through just about 6 months ago before I gave up on them. For me, some gave me temporary relief but most did not help at all. I have not had the ganglion block but also have never had coccygeal pain. If you haven't had nerve blocks and steroid injections before, my experience while some could be uncomfortable or a little painful, nothing has been worse than FBS so the needles and sensations from the injections were not a big deal. For some people it works very well so I hope that is the case for you.
  • Just read your background and see you are as experienced in this as me. I can't imagine the ganglion block will be much different from some of the other stuff you've seen. I sure hope it helps you. Noticed you were still on naproxen. Given how long you've been doing this, I'm surprised. I had to give it up as it was eating my stomach up. But of all the drugs I am taking, that is the one I would have preferred to keep (over the avinza and percocet even). I believe that is because a lot of my pain is arthritis in the lower back - along with disc pain. Good luck and let me know how it goes.
  • I just started the Naproxen this week. I have been on a revolvong door of NSAIDs for years (celebrex, vioxx, mobicoxx). Then I stopped them for a few months and just started back. It seems to be helping a bit.

    You're right - I've been having various types of injections and blocks for the better part of 15 years, with minimal or short-lived success. But, I've never had the caudal or the impar, so, we'll see. I hear that the caudal, which is injected at the tip of the coccyx and then the needle is run up into the vertebral space of the sacrum, can provide relief all the way up to L5 (sometimes higher). I don't know much about the ganglion impar blocks, except that they are supposed to help with coccydynic pain. I'll keep you posted...
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    edited 08/26/2012 - 7:48 AM
    Hello, my life is under the moniker of "JRnFL" on this board but I forgot my PW and I don't have access to the email acct I used to set up my account so, while it appears that I'm new, I've been here a while.

    I have had every type of block conceivable (I think), have a permanent SCS, and various other treatments. Beginning in the fall of 2009 until the present, I've gone through so many blocks and injections - I've had steroids, various numbing agents, RFIs, the freeze (forgot the name) injections including multiple of each of these and I'm sure I am overlooking some others. Unfortunately, none of them gave me any relief but they have provided relief to others so I think it really does "depend" on our individual circumstances. I also have a SCS and agree with the comment about it probably being better for sciatica type pain as even after multiple adjustments, I think the strength of the therapy is in my legs although my pain is usually worse just under my shoulder blades right on my spine and at the L5/S1 which I have had fused twice. I too suffer from FBS. But, the SCS does provide some relief and is worth investigating. I see people making statements about being afraid of the SCS but I do not understand the great degree of concern as it has not been that big of a deal for me. I initially had the SCS generator or battery in my back about at my waist but the batter/generator migrated on to my spine and cause really bad pain. My pain MD (PMD) then put it in my abdomen and had to put a connector about where the battery was in my back and it has also migrated to be against my spine and causing lots of pain. I see my PMD tomorrow for X-Rays and to determine what to do next. Even with that experience, my SCS is a god send for me on many occasions so I am glad that I got it.

    I also recently completed a round of Kettamine infusions which is supposed to enhance the efficiacy of our pain meds; ask you PMD if he or she knows anything about them. The last option for me is the pain pump which I fully intend to have the trial with my PMD. I was on disability from February 2002 until June 2005 when I was well enough to return to work. Unfortunately though, I had to go back on disability at the beginning of last week. While being on disability enables me to focus on my doctor appointments without the stress of juggling my work responsibilities, I enjoy my work and it gives me a reason to get up every morning (typically by 4 AM because the pain won't let me sleep later) so I am sad about that. Thankfully, my company has short-term and long-term disability plans so I will draw 60% of my base salary. Although it is only 60%, that is whole lot better than 0%. I have struggled so hard for so long to keep working but I am at my limit. Anyway, enough of my whining. I hope sharing my info is helpful for you. You can send me a private message if you want any specifics. Best of luck with what ever you elect to do and please keep us posted. Jerome
  • MarniMMarni Posts: 45
    edited 08/26/2012 - 8:35 AM
    Thanks for sharing your thoughts. I appreciate it. I have to admit, I am one of the people who is afraid of the SCS - I've read some pretty horrific stories about the paddles moving and infections. Not fun!

    You mention RFI injections - what are those? Facet rhizotomy? Am desperately trying to get from SH members about ganglion impar blocks. Have posted about it seperately. Have you ever heard of those? (or had them?)

    Sorry you're off work again - I know how working can help take your mind off things. Be gentle with yourself and take good care, ok? Let me know about the shots.
    Best, Marni
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