Hi,
I had bilateral pudendal nerve decompression surgery which has reduced my pain by up to 70% on a good day. However I have remaining pain and the doctors in France suggest it could be cluneal nerve entrapment. Has anyone here had surgery for cluneal nerve decompression and what were your symptoms like before and after?
Thanks!
Fiona
Hi, I saw Dr Baranowski recently and he suggested that I have Middle cluneal neuropathy. I am scheduled for a root nerve block at s2 and s3 to hopefully provide an answer. Middle cluneal problems seem rare and usually people with cluneal problems have superior cluneal issues that present as pain that starts over the iliac crest. Do you know which you might have? My symptoms are butt ache that comes out of the sacrum and travels down the back of my thigh. The distribution of the butt ache exactly matches the distribution of the MCN, and for the back of my thigh ache, it was suggested that the posterior femoral cutaneous nerve may also be involved. If the initial injection is inconclusive I will go for a second block for the PFCN. What are your symptoms?
Hi, not sure what kind of cluneal nerve entrapment, but going for a nerve block in may in France. Saw dr b five years ago but had pudendal nerve decompression in France. My symptoms are left sided, pain around the notch just above the butt cheek that spreads into my lower back, down the back of my thigh and along the side of my knee to my foot. I also get pain in my lower abdomen. This pain has remained after the surgery, whilst the pain from the pudendal nerve is almost gone. What is pcfn? Good luck. Are you private or nhs patient with dr b?
Sounds more like superior cluneal nerve, although I'm no expert ;-). If you google cluneal nerve you will see how the superior comes down from the spine over the iliac crest and the Middle one comes out of the sacrum. The PFCN is the posterior femoral cutaneous nerve which is another close relation of the pudendal it comes out of the sacrum and covers the skin of the posterior thigh. I'm seeing Dr b privately. Great news that surgery was a success.
Sorry forgot to ask. Are the guys in Nantes doing a steroid and local block or just local when you go in May?
Not sure to be honest. The pudendal nerve blocks were with steroid. But the doctors in Nantes don't like doing many as the steroid can be damaging itself, so it may not be.
HI I WAS DIAGNOSED WITH INFERIOR CLUNEAL ENTRAPMENT, WHICH DR DO YOU RECOMEND?
Hi I was told I had pne and cluneal nerve entrapment. I had blocks bilaterally in sept last year in Nantes. They did not use steroid, they said it does not work. The inferior cluneal nerve runs through the same set of ligaments I seem to remember Dr Riant showing me. Your symptoms are in the same area as mine. I get pain right on the bone , under butt cheek and down back of leg.
Hi, can I just ask whether in Nantes they sedated you. Dr B uses awake sedation which means you can't drive after a root nerve block. Driving or at least sitting in a car seat is 100% guaranteed to bring on my pain so I'm keen to be able to do that immediately post injection. Is this possible in Nantes? Also whilst we're on the subject of Nantes do you mind telling me how much the cluneal blocks cost in Nantes.
I have had two pudendal nerve blocks in France and they use no sedation. They cost around 150 euros, I think that's also how much I will pay for the cluneal nerve block.
Hi did you improve with cluneal nerves, have you done anything?
Hi , did you have improved with cluneal nerves?
What treatment options are you pursuing? Have you had surgery for the pudendal/cluneal nerve entrapments?
So far I have been down the usual routes. Surgery is an option for me. At the moment I am looking at the work of Katy Bowman, the more I read the more it makes sense. I saw David Mccoid yesterday and I have a lot to work on. I am considering the Katy Bowman approach as a body alignment/ life style change. I have si joint issues and piriformis problems and no physio has ever permanently changed this. When i looked into Katy Bowmans work it seemed to click that I could reshape my movement and body shape myself to alleviate many of my issues. Many of my issues come from my psoas muscle, which causes lots of problems as it runs from lumbar spine right down to ischial bones. I figured that if I could find a way to release that, other changes may happen. My buttocks and hip flexors normally very solid and tight. I am hoping that by using my body differently I can change this or at least be in a better position to recover.
Hi did you improve with cluneal nerves, have you done anything?
Left side good, right side worse, much worse than b4 surgery , now 1year post op
I am sorry, I really hope you get better, I know your pain, I am so confused about this surgery in Nantes I would really appreciate any advice from you, I can't live like this. I already been to Nantes they only offer me surgery.
It is a lottery, I am sorry. How did your pain start ? A lot of my pain is from muscles that spasm, but this is all since the surgery. On a bad day it feels like a sharp metal rod is being driven into me. I have the raw sensation along inner and back of thigh. In surgery he released pudendal, cluneal, perineal and posterior femoral cutaneous nerves. I found a haematoma when back in the UK, as the pain was so bad I ended up in emergency hospital. I was worried about infection or haematoma. Scan showed haematoma, but Robert said it would shrink. My pain is around the same area. It is ironic as he fixed the bad side, but made the good side worse.
Yes It's a lottery I agree, and I was looking all over the Internet try to find someone who treats this nerves The only one I found it Robert and dellon, but dellon cut the nerves so I believe Robert surgery is better, my pain came out of nowhere 6 years ago, it was only one side the after 5 years become bileteral in one day, it getting worse all the time, it feels like pulling hair pain almost never feel burning but the most I feel it at th chick buttock connection . I am aging to Nantes again in the end of this month, want to have cluneal block I saw also dr Aszmann he made a pudendal block which had no effect , it looks like he is not sure what I have , I think about Cryoablation as well. Hope we both get better.
Personally if it was me I would look at mind/body connections. I have learnt a lot about my body since the surgery. I have had Pranic Healing and did a basic course to work on myself. You can also explore psychotherapy with a Pranic healer, you do not have to talk about issues as in counseling. They work on you emotional body by sensing energy. I developed symptoms after several physiotherapist sessions on si joint. Robert told me my spaces for the nerve were very tight, essentially the friction from physiotherapist was the trigger. I was desperate for surgery , as most people are. But my recovery was very slow, I was barely able to walk around my garden with the pain in my right side, the first 6 month were hell and I had to take a year off work.
Thank you for all the info I will read about this healing I hope you feel great Jane a nice weekend
Hello Fiona,
I am about to have decompression surgery in Nantes for PNE - i am very sorry to hear that you may have to consider more surgery for clueneal entrapment as well!
Gosh - I don't know what to suggest. I had hoped for someone to give me feedback on post operative situation on the pudendal nerve decompression surgery, but I feel bad as you continue to be in pain.
I hope the Pain Support Team can help you on this one.
my thoughts and prayers are with you. Also i do not know the difference between the Pudendal pain and the Clueneal pain.
Take care.
Fiona2cv
Hi Fiona, don't know if you are still active on this website but read your post with interest as so many times I read that nerve decompression hasn't worked or worked enough. Are you still about 70% pain free from pudental nerve pain? Where did you go for surgery? Also do you ever get treatment for cluneal nerve entrapment? Susie x
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