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Nerve Ablation with No Diagnosis: I can't sit!

Lala329LLala329 Posts: 283
edited 06/11/2012 - 8:32 AM in Chronic Pain
I have been advised to try a nerve ablation procedure doing the nerve roots from L3 down to my SI joint on the left side of my back. I am extremely undecided about trying this because 1) All of those facets and the SI joint have been numbed and injected and they were negative (but no, I've never had a medial or lateral branch block), and 2) The source of the chronic pain remains undiagnosed because all of my imaging studies are normal, and 3) I know the procedure knocks out the innervation to the multifidus, and I have heard this can potentially cause spinal instability. Number 3 is what scares me the most because the target of almost a full year of PT was trying to strengthen all those multifidi fibers so I can't imagine that knocking them out will be good for my spine even if it does relieve pain...

I feel like I'm at a point where doctors are just chasing my pain around with procedures without trying to truly figure out what is wrong. The doctor that is advising this procedure gave me a long speech about how I just need to suck it up and accept this as my life. I have unbearable pain when I sit to the left of L5 out to the PSIS, so I have basically spent the last 2 years of my life standing up. I'm in my early 20s so I can't imagine having to go through the rest of my life without sitting. This all started after a bad fall from a horse where I landed in a seated position that resulted in multiple vertebral fractures, a disc tear that has been repaired, and a non-displaced sacral fracture. Everything was treated conservatively with bracing, and while all the fractures have healed up nobody can explain to me where the pain is coming from and why I can't sit. The closest I've come to a diagnosis is SIJD, but conservative treatment hasn't helped and the pain is primarily from L5 out to the PSIS so it seems to only effect the fibrous part and not the synovial part of the joint....

Has anyone had the nerve ablation procedure without a diagnosis? Do you think it's dangerous to proceed with it without a diagnosis, or should I wait and continue seeking a doctor who may actually diagnose me rather than just throw procedures at me?


  • I have not had nerve ablation, although I'm not sure how they missed trying it with me. So I am not the best qualified to give you any insight. I am an expert in hidden pain however...and in your case, if I were you, I would look for another solution before trying this.

    You are correct in your assumption that many practioners just run through the list of procedures that MIGHT help someone's pain, and if it doesn't work, it gets checked off and they move on to the next procedure. I am being a bit cynical, but that really seems to be the case with many docs, especially pain management guys.

    I got the same suck it up speech recently. I can do that but I first want to know I have turned over every stone and examined ALL my options. Doctors do not like to come right out and say they have nothing to offer you, or that they do not know the source of your pain. On the other hand, you also do not want the pain management guy that tells you he has a very large bag of tricks, and if X doesn't help, there is much more to try.

    What I've found is that the spinal specialists only want to think about bones and nerves. They ignore soft tissue and if it isn't a problem that can be fixed with surgery, they aren't that interested in trying to figure out what is the source of pain.

    It sounds like you are knowledgeable about your condition and have some awareness of your body. Do you have confidence in whoever is treating you? I assume you are under the care of a fellowship-trained spinal specialist....have you gone for consultations with several different specialists...ortho spinal surgeon, neurosurgeon? If you could find a physiatrist that specializes in orthopedic cases, you might find a different perspective.

    I am currently working with a guy who has a background in acupuncture, a master's degree in Chinese medicine and body work. I've learned more from him about my spine and the soft tissue. He is very hands on and can tell right away where the muscle imbalances are, postural problems, etc. I call him my "rearranger" because I do not really know how to describe what he does...but right now, he is making more sense that my two surgeons who told me I needed to learn to "live with it."

    Have you tried going to a large spine clinic at a major university or elsewhere? Sometimes with all their multi-specialties, they can take more of a team approach to determining the source of pain.

    I'm sorry I don't have anything specific to pass on to you...but I think your instincts to wait on the nerve ablation is a correct one.

    I'm going to PM you with the name of someone whose work you might want to look into.

    Take care,

    xx Gwennie
  • I hate to say it...but...welcome to my club!!! ugghhhh--SO SORRY to even say that!!
    i have so much to say it would be a book by the time i was done writting about my chronic bum pain!!! I actually broke my TAILBONE when I was around 11-12yrs old and fell millions of times on my bum...who doesn't as a kid? Unfortunately, at the ripe ole age of 18--i was diagnosed with rapid degenerative disc disease and now at the ripe old age of 33...I CAN NOT SIT!!! I have had a total of 5 back surgeries not including injections...nerve blocks...etc...
    I FEEL UR PAIN and to this day it is a mystery to the docs!!! It got alot worse after having my kids and after my fusion was done!! I wish I knew what to tell you to do!!!
    Keep me posted if you find a miracle cure and I will do the same for you!! Good luck and GOD BLESS!!!
  • Is to be done when a nerve block does provide relief, and is repeatable, even if the relief is temporary. If nerve blocks don't give relief there is no point in doing the nerve ablation. Nerve ablations are not diagnostic, they are to treat.
    I personally had one done a few months ago (after facet blocks helped); I had one area of stabbing that got to a 9/10 daily and whenever I bent. The rhizotomy completely knocked out that one stabbing (unfortunately not the rest of my back pain, but still that one part). It made a huge difference in my pain management, but its not going to provide a whole lot of answers or diagnoses.
  • I have issues at L5 S1, and I have not been able to sit for over 1 year. I did have surgery Jan. 2009, and still can't sit. In my case, a piece of bone was on the S1 nerve root, and did not show up on the MRI. I also have SIJD, and wondered what PSIS means on your post. When my SI joint is in place, my sitting is better. Have you ever had a EMG done for nerve damage? sweetpotatoe57
  • Hi Sweetpotatoe57,

    By PSIS, I mean posterior superior iliac spine. It's just the top part of the iliac spine that articulates with the sacrum to form the SI joint. It still amazes me that even with such localized pain in one particular area doctors still can't figure out what is wrong. I appreciate your feedback. It helps to hear something similar, because I also sit better immediately after I have my SI joint aligned. I have not had an EMG done so I will definitely make sure to ask about that at my next appointment. I'm sorry you're still unable to sit after surgery. That is shocking that the piece of bone did not show up on the MRI! I really think doctors put so much weight on imaging studies it can sometimes interfere with the diagnostic process.
  • I can't believe that it took so long to get a EMG done, and that you haven't had one done. I use to ride also, but that ended 4 years ago, because I started having lots of pain whenever I rode. My granddaughter is quite a rider, and we did it together! I have been taught to put in my SI joint myself, have you?? It does help, but my problem, is that is won't stay in place for a whole day. I am working on my core muscles, and got some feed back from a girl, 24, who got hurt playing sports, from a friend of mine, and she can't sit, and she does lots of exercise's on a pilates ball, and she sits on one. I guess it helps to strengten the core muscles, and she says it really helps. She had blown disc's at L5 S1. She sees a neurosurgeon, and a chiropractor. She says it helps the SI joint. So, I bought the ball, but I am going to wait until I start PT again on the 6th of July, to see what they think. I got some sites to look at from gwennie, so I will see if i can copy them to you, all on the SI joint, and exercises. sweetpotatoe57
  • Sorry to tell you, that in all likelihood, your Dr. is right. You're going to have to learn to live with this. The first step (at least with my pain management group) in getting an ablation is to inject the nerves with steroids and wait a couple of weeks to see if they have targeted the right set of nerves. If you get some pain relief from that you move on to step two. Which is the ablation. Even if something was to go wrong (which isn't very likely) the nerves will regenerate. That is, they will grow back. And, in fact, you may need to go through ablations again in the future to maintain the same degree of comfort. Good luck to you.
  • I have had two spine surgeries. One at C3, 4, 5 and another at L2,3,4. I had MRI's each time and each time they showed that nerves were being pinched, but didn't look extreme. In fact, the images were so unimpressive that I was encouraged to wait a couple of years before any surgery. I waited until I couldn't stand it any more (about a year) and had my first surgery. The discs had degenerated to the point that my vertebrae had become conjoined. But it never looked like that on the imaging. Several years later I had a repeat of the above at the lumbar level. As good as modern medicine is, it's still limited. And much of what can be done for those of us with bad backs is just an educated guess. What you find tolerable I might not be able to live with. I think we need to participate in our treatment as much as we're able, but not expect miracles from medicine.
  • I've had the ablation without a diagnosis also. As part of the process I had the medial branch block injections. My RF was done on the left side L3-L4-L5. One of the MBB injections actually worked for about 3 days and that was good enough to them to do the procedure. End result? The RF did nothing for me and I'm still undiagnosed. Actually, we're moving away from my spine as the source of my pain. Now I'm ruling out (or confirming) MS and RA.
  • My husband had 2 artificial "charite" discs. L3-4 and L5-S1. They have causes facet joint degeneration and lots of pain. He has been having ablations at intervals after a nerve block test. Each time the relief is for a longer period. He still has pain, the L4-5 is shot and his C3-7 fusion has non-union and still needs re-doing. But the ablations have been a glimmer of hope.
    I had L5-S1 fusion and still have lots of pain. It did keep it from worsening and the numbness is better (especially with lyrica and lidoderm patches) but I will ask next visit if an ablation would benefit me. He believes the hardware(rods/screws/sack) is too heavy for my frame. The radiologist said the anatomoy ofo vertebra may be the culprit. Some people do not have all the sacral vertebrae fused when born.
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