I have chronic pain (which I have had for the last 9 years) in the top of my left buttock.
I have seen numerous doctors,been referred to 6 pain clinics,had pulsed radio frequency and epidurals.
6 MRI scans,CT scans,Ultrasounds and heaps of other tests,all of which come back normal.
Hence one of my GPs has told me that he doesn't think there is anything wrong and another told me to go home and drink the red and white stuff! I asked a 3rd GP to refer me to a top london hospital which he did. After further tests the Drs thought I might have a trapped cluneal nerve.At last a diagnosis. I was over the moon.I was then referred to the 'expert' who recommended a nerve block,but told me very bluntly that 'i might have to live with this pain like I would have to live with a leg being amputated.I was distraught,after finding a diagnosis to be told there was nothing that could be done.
MY question is: Has anyone out there been diagnosed with a cluneal nerve entrapment and if so who did they see and have they found any nmedication that can help with this kind of pain.
Has anyone had the cluneal nerve decompressed and if so at which hospital.
I really would be grateful for any feedback
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I know of this entrapment and also an elderly patient who had this surgery in France.These entrapments don't seem to respond at all well to medication in my experience.
At first I tried Amitriptylin with 75mg Pregablin(after 3 mths came off as didn't help)..Now been told perhaps the pregablin could have been increased.Dr put me on tramadol which made me feel quite ill.
Prozac,co-codamol,voltarol,hrt,ibuprofen,paracetomol,amitriptyline with chlordiazepoxide.
butrans patch(made me very ill)
At present just on Dosulepin(anti-depressant) which helps stop the tears ,
I use capaciscian cream to rub in the area which sometimes helps and I use the Tens machine.
I still manage to work part-time,although because my job is admin sitting seems to make it worse.
I think ther is a hospital in Bristol which also deals with this area,Are you aware of this?
I would be interested to know how this lady got referred to the hospital in France (I have read a bit about this on the web) Did it work for her?? London Dr told me not even to consider because it would make me worse. But what are the statistics??
Thx for your interest.Are you in the UK and are you in the medical profession??
The doctor in Bristol is Dr Greenslade. He is at Frenchay Hospital and also sees patients privately twice a week although he is not in favour of private treatment.
I am in the UK, am a patient myself with a lot of expereicne in supporting other patients with pelvic pain and keep up to date with what is published in the research. I am in touch with the majority of the doctors who have an interest in pelvic pain in the Uk and elswhere.
I have been treated by the doctors in France and the doctors there do treat cluneal nerve entrapment by surgical decompression. I have had two pudendal nerve decompression surgeries in Nantes, the second surgery they thought it was cluneal nerve entrapment too, but found it was the pudendal nerve that was trapped, but the surgery is the same procedure so they were able to decompress the pudendal nerve. I don't know any statistics, but I only have good things to say about the doctors in France. They try and find out what is wrong and fix it, they won't send you off to jut "deal" with the pain, whatever they diagnose. After 8 years of pain, I was finally given some hope by the doctors in France, and I am slowly beginning to get better. However, I had to do it privately because I didn't want to wait for the NHS referral, and not sure how it works. But the surgery in France is a lot cheaper than private treatment in the UK. Hope this helps.
Thx again Judy and Fiona Kim for taking the time to answer my blog.
Do you know if my GPr could refer me to Dr Greenslade in Bristol for a 2nd opinion and if I wanted to go to Nantes how do I go about getting an appt there,private or NHS??
I just need to know if it is the cluneal nerve that is trapped.I have so many questions e.g how rare is this?,what causes it? Is there anything I can do to help myself e.g exercises? Can I get in touch with anyone else that seems to have this problem??
I have a trapped middle and inferior cluneal nerve. All that does for me is make my bum numb (I think) no pain.The buttock pain comes from my tight piriformis muscle, although I do have pudendal (and sciatic) problems. The pudendal gives saddle area numbness and pudendal nerve path pain (shooting, burning, itching)
Dr Greenslade diagnosed my pelvic nerve issues. I saw him privately for a consultation (around £200) Of course you can get referred to see him on the NHS if your Dr and PCT are amenable (mine weren't/aren't but everyone else has managed fine )
Dr Greenslade has recommended that I be referred to France for decompression surgery on the NHS now, but then they won't refer me to Bristol, so France will be totally out of the question. There is absolutely NO reason why that should happen to you though, especially if your GP is helpful.
Try and get the referral although there will probably be a fair waiting time on the NHS.
Did Dr Greenslade diagnose your cluneal nerve entrapment?
Mine is different in that mine is painful.Sometimes it is like a knife being driven into the top of my buttock or like a deep bruise. Doesn't hurt to move or walk but if I bend over I can feel a pulling sensation over the top of the buttock.
I am going to try to get an appt with Dr Greenslade to get a 2nd opinion. I would love to get referred to France to get an opinion.Is it Dr Roberts in France? Does no Dr in the UK do decompression??
Its so nice to chat with people that at least know what I am talking about!
Yes it was Dr B that I saw in London,he made it quite clear that surgery is not the answer.
Very reluctant to answer any questions, told me that I had to move on and accept the situation. I feel if I had more understanding of this cluneal nerve that I could accept it better.
Nerve blocks haven't helped,he has suggested another procedure applying a chili preparation to the area,am also going to try differnt medication but am waiting for a letter to go to my gp from him with suggestions.
It is great to know there are people out there that care,sometimes I feel so alone with this problem.
I am going to try to get a second opinion.Any suggestions??
The only other DR I know that deals with this nerve is Dr Greenslade in Bristol.
Just reading your post. I think I had 7 nerve blocks last year with Dr B. Also negative with me about France and I am now on more medication. He has put me down on his NHS waitlist for a Nerve Stimulator Implant - Everyone seems to know alot more than me with regards to where the nerve problem area is. There never seemed to be any time left for question time with Dr B.
No, mine is actually the pudendal nerve which he blocked 4 times. Twice via X-ray, and twice CT guided.
Unfortunately the intrusion made the pain worse.
I discussed surgery with him, but he asked if I had ever heard of a 100% success story, and when I said I hadn't, he said that neither had he!
I asked for the nerve to be cut, killed, frozen, amputated(!), anything... But it was explained to me that pain is like water, it will find another route, or nerve to travel down.
The damage is no longer in my pelvis where I FEEL it, but in the brain and central nervous system.
So now it is about managing the pain with medication & psychological help!
Yes I know he deals with the pudendal nerve, I think he thought that was my problem at first, but my symptons aren't the same I just have a really bad pain at the top part of the buttock,
Do any meds help you at all ? All I take is an anti-depressant at night.
I have had chronic pain for 5 years and was only recently finally diagnosed with a cluneal nerve entrapment of the iliac crest by going private.
I was told by the NHS it was a facet joint condition despite having great flexibility and no tenderness over the area and no sign on the MRI. The NHS just didnt know really and set me on a long road of ever increasing pain medication and pain clinic visits. I had put on 3 stone due to the pain causing inactivity and pills causing weight gain which i am trying to lose now. Exercise is hard when in chronic pain and tired all the time no matter what anyone says.
My symptoms flared up last year with a full time job and i couldnt walk because the pain was so bad so my partner used all his savings to go Private. We searched and found the amazing Dr Fitzgerald at The Spire (see link) who upon examination said he thought he knew what it was. He sent me for a full back and pelvis MRI to check there was nothing more going on. Finally it was confirmed that i had a cluneal nerve entrapment of the iliac crest noted by pressing the area sends a sharp pain and a cry out from me.
I had a nerve block injection which did reduce the pain considerably however we could not afford to go private after the first one. Good news is that Mr Andrew Fitzgerald is NHS as well and saw me again for a second nerve block injection however this one has not worked. He did warn me that due to the nerve being enflamed for over 5 years that a nerve decompression surgery may be the next option . I cannot speak more highly about Mr Fitzgerald to anyone and honestly if i could afford private again i would in a heartbeat however i am willing to wait on the NHS to see him.
For now i am on Tramadol , Celebrex, Nortriptyline, Paracetamol for the pain which only just takes the edge off. I also have the Baxolve XP which helps considerably with pain management.:
At last another person that has been diagnosed with cluneasl nerve entrapment.
It is very interesting to hear that there is another Dr in Manchester,Dr Fitzgerald,as I only came up with Dr Greenslade when I searched the web.
I cannot fault the london hospital for trying everything,I am now waiting to go on a pain management course(where I hope there will be others like me) and I am also waiting to have the Qutenza treatment but I am not holding my breath that it will work.
My GP is reluctant to send me for a 2nd opinion as he says that the London hospital are still trying to help me. However they are adamant that decompression of the nerve will make it worse. Actually I would like to hear if there are any success stories with decompression. Does Dr Fitzgerald actually do decompression?? I thought it was only done in France.
I am still on one anti depressant a day and am also trying gabenpentin.Early days yet to say if they are helping.
Luckily for me it doesn't hurt me to move,only pulling sensation if I bend over,also sleep like a log(probably the meds) The pain however is still there,worse some days than others.Still manange to work, 24 hrs a wk (would you believe in a private hospital) On the days when the pain is really bad, I do wonder if I should give up my job,but again sometimes it helps to work as it can take my mind off the pain.
Please keep in touch,I would really love to know how you get on and if you have the decompression.
Hi to all in this discussion. I had bilateral decompression surgery on the pudendal and cluneal nerves by Proff. Robert at the university hospital in Nantes in 2012. At the time I had classic pudendal symptoms but also severe pain after walking and Proff. Roberts thought this problem was the cluneal nerve. My original pains deep inside the rectum had started very suddenly while I was out power walking. Wrongly diagnosed I had 2 minor ops, one to inject botox into the muscles in spasm inside my rectum. This did relieve the pain considerably in that area and I would recommend it if you have massive muscle spasm with no obvious reason. A second op to massage the pelvic floor muscles which made things worse and the pains started to move further to the front. Anyway I digress, Proff. Robert found problems with both nerves and was hopeful that the op would be successful. Straight after the operation in France I had a real feeling of freedom when I moved and I made steady progress for a few months. He told me to go to a swimming pool and with the water up to my chest just walk about and the resistance of the water would be good therapy. I went a few times and felt better for it, then one day I overdid things in the pool and all my old problems came flooding back, only now sitting, lying, walking, reaching, bending etc. all cause problems
and pain. Then about 9 months ago I was standing up, but not moving far, as normal, when I got a severe pain in my vagina/clitoris/labia area and it has never gone away. So now the only time I leave home is to visit hospital or my GP and everyone is at a loss to know how to help me. On a positive note I must say that the operation remains partially successful but complete success seemed to work out as 40% of the 70% which are partially successful. Not very good odds so think carefully and try things which are not permanent. So far all my ops have helped with one pain but caused another, all of which I think still involve the pudendal and cluneal nerves.
Everyone is different and you must try what you think is best for you.
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