Cluneal nerve problems/neuralgia?

Hi all, i've been to see Dr B in London, i was referred to him because of possible PN, but he thought it was the cluneal nerves causing my sitting/pain problems. Anyway he did a diagnositic bilateral nerve block, which didn't really help much. He wants to repeat the procedure to see if it helps the second time. I'm feeling a bit reluctant to do this as i really cant see how doing the same thing again is going to help and to be honest i felt worse for a while after it last time, so that is another worry about repeating it.

So i was wondering, is there anyone who has had this done and can comment of having the procedure done twice? I've been struggling to find any really useful information about this condition.....so .many thanks in advance for any replies..

14 Replies

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  • Hi

    In what way did you feel worse?

    I had five nerve block injections with Dr B and had no relief whatsoever. I suffer from p/n symptoms. You have to decide whether or not its worth attempting another attempt. What makes the second attempt any better than the first?

  • Hi jacquie, thanks for replying.

    What i meant was the nerve blocks caused me more pain initially then this settled down, back to how i had been before the injections! So the same as you really, no real relief at all. So as you say i'm just wondering what is going to make the second attempt any better than the first, i've not had a clear explanation on this from Dr B, just that it might work differently each time, but i'm just wondering what's the point is of putting myself through that again, if it was going to work why wouldn't it work the first time!?

    so i would be interested to hear if this has happened for any one, ie an improvement from subsequent injections, making it worthwhile doing?

    tia

    Iggy

  • Hi,

    With pudendal nerve blocks there are two possible locations ( the ischial spine and the Alcock's canal ) for doing the blocks. If one location doesn't result in any benefit, the other might.

    It may be worth asking if the same is true with other nerves in that area. We have done a leaflet explaining about different types of nerve blocks. If you would like to receive this let me know: info@pelvicpain.org.uk - we ask for a contribution/donation to the charity for this.

  • Hi Iggy

    I think you find with Dr B that he repeats the same injections twice, e.g. two in the i/s and than two in the a/c. I have had so many of them i have lost count where they were putting in the injections. Is this done privately or the NHS? What are your main symptoms and how long have you had them? I have been suffering for eight years now so fire away with questions...

  • Hi Jacquie and Judy,

    Thanks for the replies but i don't have PN (according to Dr B) i have cluneal nerve neuralgia, so the injection site(s) would not be the same would it?

    btw my main problem is pain when sitting, increasing in intensity the more i sit, relieved by sitting on a toilet seat, but the more i sit the more the pain spreads out into my bottom, lower back and the backs of my thighs, so you might think PN possibly - well i did, but he thinks not, he does see alot of people with these conditions i persume he must be right?

    x

  • Is there a difference?

  • Yes Jacquie, i believe so, the cluneal nerve follows a different course to the PN

  • Good morning Igno, I have had two x-ray guided pudendal nerve blocks done by Dr. Curran at the National Hospital in Queen Square, round the corner from UCH, which didn't give any relief. She learned the procedure from Dr. B., but thought it would be worth sending me on to Dr. B. for two CT-guided nerve blocks. I think I had relief for most of the following day with the second of these, but that's not long when measured against the rest of my life - even though I am now 80! It would seem to me that even if you had reasonable relief, say for a month (I wish!) it only means that you would have to go through with the procedure again and again. I do wonder whether Dr. B. is doing all these blocks for research. If you live a long way from London I can understand you hesitating to go through it all again. Apart from your journey time, I found that the waiting time before they get going was very stressful, especially as, like you, I find sitting so exceedingly painful, and you have to sit, with nothing to occupy the mind from 10a.m. until they get around to doing the procedures late moring or early afternoon. I think they are usually done on a Friday, possibly at the end of the week's surgery, and then slot us into brief vacancies of a CTscanner room! I should try and quiz Dr. Baranovski a bit. You could write to him, or phone his secretary and ask if you could have a word with him. They seem very kind and understanding, although rushed off their feet, but it's your body going through all the suffering.

    Do you, or does anyone else find that their pain seems somehow connected to their bowel function? I am always worse after this daily happening, and then the pain gets even worse as the day progresses. I am beside myself by the time evening comes. I am much better if my mind and/or my body is occupied or active. But as I am a) older b) less active , and c) now live alone this becomes more difficult. Sitting at the computer aggravates the pain, and yet it's less while I am here as my mind is very actively engaged....but don't I suffer for my inactivity when I shut down and get off my behind! Has anybody heard anything positive about Bowen therapy? Best wishes to all. Sheilam

  • Hi I agree with all you say about having more nerve blocks, the whole thing is stressful and to be honest for me anyway a complete waste of time. Didn't feel also that time was given to me to explain the procedures etc, very much in out and off you go. You need a little more compassion when you are suffering.

    I had Bowen therapy last year had around six sessions, it was interesting as the pressure was so light on your body and afterwards really felt a tingling and heat where she put her hands on your body. I thought it much nicer than massage, but I didn't get relief, infact there were areas which aggravated my pain, so I gave up on it. Its all worth trying. Finding the cause of the problem is the main thing, treating the symptoms come after that, not before, as you could be wasting time and money. Of course meds are necessary for the pain. This is my opinion only.

  • Do you notice any difference between sitting on hard and soft surfaces ?

    There is a clunealgia that is linked to pudendal neuralgia where the nerve block is at the ischial spine ( this is the first type of nerve block that is carried out if the pudendal nerve is suspected )

    The other type is isolated clunealgia where the location of the injection is different from either of the pudendal nerve blocks.

    I think it's important to know what type of nerve block you've had and perhaps what was injected. It is usual to receive copies of the reports. These should describe the location and what was used ...

  • Hi JudyB, I am new on this site, thought I had PNE after going round in circles trying to find why I was in so much pain, not being able to sit, or walk some days and in constant pain. Went to see a specialist who said it was a sacroiliac joint problem and gave me a steriod inection into the joint, no relief the pain was still there. Then I had an epidural no relief pain still in the same place which seems to be at the bottom of the sacroiliac joint. He could only suggest the pain clinic, so decided to research this myself and found this site which has been a godsend. I went to see Dr. Greenslade last July who listened to me and gave me a nerve block, said that I met neatly all the Nantes criteria if the nerve block was positive. Sadly the nerve block didn't work the pain was still there even though everything else was numb. So I assume that it's not PNE tried to contact his secretary on several occasions but she didn't reply. I have also been to see Maria Elliott a physio in London who specilises in Pelvic pain but after 4 sessions there was no improvement and she recommended an osteopath. I am now seeing an osteopath, still with no improvement, can't sit on any soft surfaces only hard ones. Just like a hamster on a wheel going round and round. Just wondering if my next move should be Nantes to get a proper diagnosis. I am in constant pain, I've had an MRI scan also a CT scan nothing has shown up. I has a fall on my buttock 12 years ago and I think it could now be related. Would welcome any advice.

    Thank you.

  • It could be related to a fall even though it was a long time ago. You can e-mail me at info@pelvicpain.org.uk if you want to see the doctors in Nantes.

  • Thanks, might do that Judy. Going to see another osteopath tomorrow just to see if he can help as I'm told he's very experienced. If he can't, I think I will have to go to Nantes even if it's just to get a diagnosis.

  • Hi,

    I'm glad to have found this discussion. I saw Dr Baranowski yesterday and he has sent me for an MR Neurography of my Lumbar Sacral Plexus, which I am having on Friday. He agrees with me that my pain appears to be coming from my middle cluneal nerve as it certainly follows the middle cluneal nerve's distribution as it coers off the sacrum. I got the feeling that he had never seen this before and had only come across superior cluneal nerve entrapment over the iliac crest. I think my pain is as a result of a bone island near my right sacroiliac joint.

    I'm really hoping that the MR Neurography will at least give me the answer I have been looking for for the last 4 years. Has anyone else had success with MR Neurography and does anyone else have middle cluneal nerve neuropathy?

    Many thanks,

    Jeremy

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