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New Pain Dr Suggests Cluneal Injection

I’ve continue to see my pain psychologist while going through anxiety and pain mindfulness CBT sessions. This is at a teaching university and my therapist suggested seeing one of the newer younger up and coming pain doctors for a third post op opinion (two pain doctors had said there is nothing else they can do for my chronic post op pains, about a year ago).  

I had L3-S1 ALIF/PLIF in two separate surgeries, afterwards 3 out of 4 back pains issues were resolved, but not left leg radiculopathy.  Neuropathy pain from waist down, numbness in my feet and deep bone aching in many joints have dogged me since the surgery (nothing that was present presurgery)   The glut of nerve medication Gabapentin Amitriptyline muscle relaxers are knocking me down daily, lethargy bloating on top of the rest, been dealing with it all for 2 years and while some things have gotten better dim not whole and this all still drastically affects my quality of life  

The new pain dr is suggesting Tackling one thing at a tine.  that cluneal nerve which rests over the iliac crest can get impingined and wants to do a Left Superior Cluneal Nerve Injection with ultrasound guidance.  My understanding is this is mostly a saline lidocaine injection and is very safe, and can be repeated numerous times. I am also under the impression that this CAN provide long term relief for the sciatic pain.  

Any experiences with this procedure?

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Comments

  • Joel, no experience but would sure like to hear how it goes! I've been struggling with worsening sciatica/ neuropathy to the point where I can hardly walk since my L5/S1 fusion  surgery 2+ years ago. I was incapacitated before the surgery so no chioce there . My right hip is also extremely painful. I've had epidural injections with little success. Did he isolate the cluneal nerve just by clinical exam? Is the lidocaine injection diagnostic or will just the lidocaine calm it down. Just very curious about this. Thanks for posting.

    Joanne 


  • memerainboltmemerainbolt IndianaPosts: 4,469

    Joel

    I don't either but I will bring this up to my doctor next. week. My PM doctor is going to add bupivacaine to my pump to see if it will help.

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  • Joel1QJoel1Q Posts: 374
    edited 12/31/2019 - 12:49 AM

    Thanks Sharon. Joanne   If you YouTube superior cluneial nerve there is a very succinct 2 1/2 min video that describes the issue. The SCN is supposedly something that gets overlooked as a source of sciatica.  I don’t think it’s related to my neuropathy pain, as it was just identified in office, with a physical exam to ID the source location of the pin, which is not in my spine.  I’ve always maintained my sciatic pain starts at this point (the new doctor said that’s exactly the iliac crest) which then goes right to my left glute and down the left leg.  The lidocaine is more for injection pain, the main point of the procedure is to inject saline into the cavity that the SCN travels through as it goes over the IC and into the glute.  Think more like carpal tunnel where the opening needs to be widened  hence the saline to loosen up the path.  Pm if you can’t find the video. 

    Joel

  • Joel, very interesting, I watched several YouTube videos about the cluneal nerve. I couldn't find one about injections but I will talk to my PM doctor when I see him on the 8th. None of the videos talked about the cluneal nerve and sciatica, just buttocks pain and hip pain. I've had buttock pain for a long time and it is affecting my hip which is in turn affecting my leg and even my knee and ankle making it hard to walk. It would be great if my PM would at least try this as it seems pretty non invasive and does not use steroids so we'll see. Again thanks for posting this information, sure worth investigating. 

    Joanne

  • Joanne I’m still waiting approval for the procedure.  I even messaged this new dr via their portal, got a response which said ‘you’ll hear from my staff by the end of the week’ and Friday has come and gone.  I’m back on a 4th treatment of prednisone for my pulmonary issues and my joints feel awesome, like I could run a mile (except I can’t breathe well enough or have enough energy to walk up a flight of stairs.). Unfortunately the prednisone does not help my sciatica.   Hopefully they get this procedure  scheduled soon

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  • Joel, sorry your insurance company is taking so long!  It's frustrating for sure. I have NO complaints about Medicare, most procedures don't even have to be preapproved. I pay quite a bit for a good supplement but it picks up what Medicare doesn't. I'm sorry about your breathing problems! That has to be rough and adds to the stress of chronic pain. I did ask my PM doctor about the cluneal injection and he said he did them but just used Lidocaine. I tried to explain the procedure you described but he just kind of blew it off. I like him but he's always in such a hurry and he was running 45 minutes late. He's young but I think he's been in business for awhile.I start PT next week so maybe she can do something.  


    I had my 3rd injection and it hurt like crazy, he said he got pretty close to the nerve. My leg cramped up so bad I could barely get off the table . That was Wednesday and so far, no improvement. I've had to cut back on my pain meds because of digestive issues so it's been tough. Narcotics paralyze my digestive tract, ugh! I was thinking of going to some stronger meds but obviously that won't work. 

    I'll be praying they call you Monday with good news, keep me posted. 

    Joanne 

  • I finally got the call today and the procedure is amazingly going to happen tomorrow (Tuesday) morning.  They also show two TPI (Teigger point injections) in addition to  the superior cluneal injection, described as a nerve block order. 

    Will let you know how it goes. 

  • memerainboltmemerainbolt IndianaPosts: 4,469

    Joel

    Good luck today!! Please let us know how you are doing.

  • Already done and back, and it’s an hour drive round trip.  My Dr said expect to feel less pain in 24-48 hrs so I’ll keep you posted.  

    It was saline, lidocaine and steroid  cocktail. The injection point was directly at the pain source, this nerve where it goes over the iliac crest, plus he did some trigger point injections right around that and the lumbar L5 section just to the left of it.  Entire procedure took 20 min.  

  • How do I say this without jinxing it....so far 12 hrs later, I’m VERY happy .... and hope it lasts.   

  • Check that. I’m very thankful to God and pray it lasts.  

    Ironically, no sadly, today my stiff ‘text neck’ flared to right side cervical radiculopathy down my arm.  I swear...hasn’t been too bad a problem for 6 years, until today   I swear ...  

    N o, I’ll watch my tongue and be thankful I can feel my neck, and deal with it one day at a time. 

  • Oh Joel I'm so glad you are getting relief in one area and more pain in another. Could I be from the positioning for your injections? I know my pain management doesn't have a very good system for neck comfort during injections while laying face down. Praying it will resolve on it's own and the injections continue to give relief! Keep us posted. 


    Joanne 

  • Good grief, I meant to say that I'm SAD you are getting more pain in your neck!!!! 

  • ‘Good grief’ I thought you were wishing me cervical stenosis  :D

    I had felt my neck get a little stiff and sore (text neck as William called it) for the past few days, pre injection.  The injection position was a little awkward but they did have a little cradle of pillows for my head and I was allowed to put it any way I wanted.  Also the neck pain didn’t come on strong until later.  Now I’m in one of those rest and recover modes.  Sciatica is still tremendously better than anytime in the past 6 years. 

  • Lol.I need to use the preview before I post! I'm so HAPPY you are still having relief!! 

     I need to find a doctor who knows how to do this procedure. I was surprised that mine didn't because he's young and progressive. I'm not sure I should give him a print out from the internet. They are kind of touchy about that! He does just lidocaine injections around the nerve. I do live close to a teaching hospital but it means starting over and driving downtown which is challenging. We'll see, I said I'm swearing off doctors for awhile but it's temping to try this. 

    Joanne 

  • So far so good. After a week I’m ready to add simple exercises with a little more walking and try not screw this up. 

  • Joel

    That's good news, I hope it continues.

    Chip

  • memerainboltmemerainbolt IndianaPosts: 4,469

    Joel

    I am so glad to hear that. Remember the words "don't overdo"!!

  • 10 days of no low back pain /sciatica.  I guess I have to stop calling it sciatica as that’s a different condition and apparently not responsible for what I have called sciatica pain forever.  I guess it’s possible that my presurgery pain was sciatica, and was fixed via the fusion, but I developed this cluneal nerve issue.  It’s just weird being able to walk without butt and leg pain I’ve gotten so accustomed to the pain.  

    Today I was on YouTube and stumbled across a cluneal nerve entrapment vs sciatica video by a dude that looks like he used to go fishing with my grandpa, but doc boat right was right about the misdiagnosis and determining where the pain originated from was key to my doctor suggesting the nerve block injection procedure. he also has a msg for those doctors who don’t know of this as a possible cause for sciatic like pain....find a new dr.  

    I pray the relief sticks and that pain stays away, God willing it’s will.  And that someone reads this and benefits the way I have so far. 

  • Joel

    I am happy for you, I hope the pain stays away.

    Chip

  • Joel1QJoel1Q Posts: 374
    edited 02/10/2020 - 4:26 PM

    “Don’t Overdo” is right. Or “don’t overdose”... on chores or other activities that you would normally do if you weren’t a chronic pain patient with a new back that has to be cared for and treated very carefully.   I realize that. Executing it is the challenge   

    It’s just so hard when you have to do a task like clean the bathroom.  I keep it tidy and do a deep clean about every month.  But even doing that, spacing and pacing means a normal 30 minute job takes 2+ hours.  It’s not like you can clean one 1/2 one day and the other half the next. Same as cleaning the floors.  You have to sweep/vacuum and then mop, it’s not like you can sweep half the floor or all of it one day and finish the next day.  Cleaning the floors is an hour long task that now takes 2-3 hours with spacing and pacing.     I usually add vacuuming the carpets and there goes half the day, just to do what normally takes 1-2 hrs.    

    And afterwards even spacing and pacing , you still have to allow your body to recover   These are tasks that if not completed in one fell swoop your going to have to redo the work the next day or so a shitty job which I’m not going to do.   But the tasks have to be divvied up or you put yourself down for a longer batch of  days of recovering.    

    Sorry for complaining out loud, I should be blessed I’m able (with some pain) at least have a body that works enough to get the job done, no matter how long it takes. 

    And two weeks later the nerve block is still working btw!

  • People that have never been through this just can't understand, I am like you, I can still do most things I want to do, it just takes a lot longer to accomplish the task. I am happy to hear that you are still feeling good.

    Take care and keep us posted

    Chip

  • Joel, I'm so happy for you!! And I get what you are saying about spacing and pacing. I'm so very blessed to have a roommate who does the deep cleaning or it would take me days to clean the bathroom! I can't even change my own bed linens without killing myself. If I lived alone I would have to hire someone to clean because no way I can vacuum or scrub floors. I think my next move will be assisted living or with one of my kids which I don't want to do for their sake. My husband's mom lived with us for a few years and we made it work but it was tough. I was working full time and caring for her too. I hope I have many years left in my present situation. And I'm thankful this is a safe place to vent. 

  • I hope you do too Joanne. 

    Chip I just wish my first PM doctor knew about this nerve block and said something to me me months and a year ago. 

  • Hey everyone, one of the few positives in my life is that this injection is STILL WORKING...I am amazed.

     

  • ArizonaAArizona ArizonaPosts: 165

    Hey, Joel, it is great to hear good news for a change!

  • Thanks AZ, you know it really is a blessing to share anything positive these days for others to read since there’s so much f*d up stuff everywhere you turn.  We need more success stories!  Not that I’m a model of success, but this procedure is a Godsend for me. 

     We try to be thankful for everything good and bad and be as positive as possible in general, but constant chronic pain and a pandemic can cause one to be cynical snarky or down right mean, if we don’t watch ourselves   Joannes said it before but the whole mindfulness and meditation has done less for my ability to manage pain but way more for my brain and managing my mental health through the pain than I ever could have dreamed. It’s a must for post major surgery recovery difficulty.  Comes in handy sometimes   For “doom scrolling” (didn’t even know that was a thing until someone explained its what you do at night reading way too much horrific virus news on your phone)


    Cheers everyone 


  • memerainboltmemerainbolt IndianaPosts: 4,469

    Joel

    Great news, finally. I am so glad this is still working for you. Thanks for the "good news story", it's always nice to have for other members to read.
    Sandra

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