I would be interested in contacting people (offline from here if necessary( to discuss preparing for pudendal and cluneal decompression in Nantes and recovery afterwards, both the recovery from op/transport etc and going back to work and nerve recovery later.
I am currently a candidate for surgery, i am not interested in hearing opinion's on whether I should have it or not, just from those who have had it in Nantes I need to consider my options and plan for potential time off work ( if I have not had to give up sooner ha, ha)
Also are there any PNE'ers that had or have coccyx/buttock cleft pain/sensitivity.
Thank you
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frodofish
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I had same surgery performed in nante but it was under the care of Mr Wong in bristol. Mr Wong trained with prof Robert in nante and now performs the surgery in the UK. Happy to help if I can. Good luck
Hi, how did the surgery go? Are you feeling better after it? Spoke to MR Wong and unsure if I should have the procedure with MR Wong or going to France. Please help.
I am writing to Dr Roberts in Nantes , France to request cost for cluneal nerve entrapment decompression . My mum is going to come with me but i have no idea how long you need to stay following the op , for post surgery. I do not know even if you stay in hospital following decompression. I have read different articles on the success of thus surgery.
My orthopaedic consultant has done nerve blocks for 8 years and its 50/50 success. i just feel like the UK simply puts a plaster over the problem, rather than address the real issue
I fell last august 2013 and made my back much worse , that flight of metal stairs did a number on my back.
I have not been able work since then, stand more than 10 mins, walk more than 10 mins. I have worked since i was 14 years old , so this has been horrible for me.
I have made a claim against work for the fall but i need more info on cost / success/ stay length too
I saw Prof Roberts two weeks ago. Potentially I need both pudendal and cluneal nerves decompressing. He explained that the surgery would take around an hour and a half, total. Cost was around £5k, normally people stay in for three days afterwards. The next day after the op they have you sitting and moving. It is pretty much up to you when you go home. Some people had gone back to Oz after a week, depends how you are and how far you have to go. I have seen some strict guidelines from surgeons in the US, involving very little activity. This I was told is a big mistake as the nerve has to move and be mobilised. You can do what you want after except cycling, horse riding and rowing. Takes 10 days to get over initial surgery pain approx, personally I WD have thought longer!
I was told to expect no improvement for at least 6 months, nerve fibres need to regrow and brain needs to adjust to freed nerve
That was it in a nutshell, he has done 5000+ surgeries and does 10 a week. He has taught Hibner in US and Antolak, Wong in UK, but not many/any can decompress cluneal nerves.
Have no idea why not on NHS, there is a group in UCLH under Barsnowski who seem to dismiss nerve entrapments other than bus surgery, maybe they have influence....I don't know.
Would still like to hear from more veterans if there are any ,
Hi, I possibly might need this surgery?? Ive had this pains and symptoms of 11years now. Im just now finding a this out. I had a bicycle accident involving the seat of the bike in this area. Any facts and about nantes??? Thanks gary
Pr. Robert sent me an e-mail yesterday in reply to mine; informing me that I will stay in the hospital for 3 nights (1 night before the proceedure and two nights after) that is all apparently for Decompression surgery for the Pudendal nerve entrapment problem which i have had for 10 years on my left side. (have a look at my profile if you want).
I queried the travel arrangements for me getting home which is a 6 hour car drive south (we live in France) and he said no problem as long as I put the seat right back and stop the moment there is any discomfort whatsoever. Get out and walk around. People have gone back to the nearest Airport and then flown back to the UK and further afield! The follow up 'Check Up' is 6 months later.My husband will come up with me and he will stay close by near the hospital. Booking.com apparently have appartments near the new clinic (hospital).
No need for waxing - which I did ask as I wanted to know before I got there (i'm not a hairy person ) but just wanted to know for hygine purposes.
I also asked if I would be provided with a special cushion on leaving. Answer No. So I am going to make sure I have a new one sent to me.
He will send me home with prescriptions for pain killers, anti-imfamatory tablets and plasters etc... I hope that helps a bit.
Hi, I possibly might need this surgery?? Ive had this pains and symptoms of 11years now. Im just now finding a this out. I had a bicycle accident involving the seat of the bike in this area. Any facts and about nantes??? Thanks gary
@Poppy22 - Do you have contact information for Dr Wong ? Is it available on the NHS or did you pay private ? How much did you pay ? It would be much better to have this UK instead !
Mr Wong works in frenchay hospital in bristol and I had to pay to go privately, don't think it's available on the bus sadly. It cost approx £6,000 for the procedure but the nerve blocks and consultations were extra.
Good luck with your decision, Mr Wong is very caring and supportive.
I too have met Prof. Robert and am due to be operated on early next year. (I live in France) I am having the Pudendal Nerve decompression Op.... You have been helpful in the general timing of staying in Nantes. I also would like to know from others who have had the op to let us know what the following months will entail regarding recouperation etc. I am slightly alarmed that the cost of your proceedure is 5K! I would like to look into this further. I would like some advice as to where to stay afterwards ( my husband wants to stay somewhere nearby) I simply can't imagine being able to sit in a car for six hours to get home after three days in the hospital (that is what he said to me - 3 days) and then I could go on my way....hummm and I understand the French language pretty well having lived here for a long time. There are several woman on this site who had the PNE release op in Nantes - they may give us some more finer details once this is posted... Thanks for all your info. To be honest I am rather nervous about the op. I will have to look up Cluneal decompression as I have not heard of that. thank Goodness there is someone who can help. I hope so much we are put out of our misery. All the best.
we are basically on the equivalent of NHS here, but due to my previous problems resulting in a Hysterectomy we were advised to take out 'top up' French medical insurance which, has come in to use due to the post operative pain from the Hysterectomy! resulting in PNE, it has covered some of the costs of all the medication and hospitalisation, scans, nerve blocks and all the endless consultations etc. Therefore I think I may have to pay for some of the costs of the Op and then be reimbursed but I will try and find out.It is certainly not like BUPA. It is just pot luck that I live in France that the Decompression surgery will not cost 5K - but it was very unlucky that my Hysteretomy resulted in more pain than I was in before AND THAT i HAVE TO TAKE THE RISK TO BE OPERATED ON AGAIN. sorry caps on. (the op was performed in France) - so there are mistakes made in every country.... very nervous about the whole thing as I'm sure most people are....the US 28k Sounds totally out of order. Madness.
Hello, I hope you are feeling okay. I imagine you are still off work? I would like to know if you are still on the medication you were on before you were operated on? I know from Pr. Robert that I will be sent home with prescription for pain relief and bandges etc, but he did not let me know about continuing with my existing meds until I see him for a review after 6 months.! I do so hope your op went well. I would really appreciate just a little bit of after-op advice - ie how you are able to sit, any advice you had on relaxation methods to help you through etc.
Thank you so much, i really do appreciate your advice.
I was not taking any medications before the surgery, Pr Roger didn't write me any medications after the surgery except for on the counter pain killers, I've been offered some Tramadole after the surgery but I didn't take it because I didn't feel pain after surgery, there were some little bandages after surgery, yes you can sit in the air plane two days after the surgery but you have to stand up every litttle while
Hi, just a few questions from me. Did you have far to travel from Nantes to home, and how are you doing now? No medication sounds very positive, are you able to do things like walking etc. and what about sitting? I'm planning on going to Nantes after Christmas with a view to having surgery. Any advice would be really helpful. Take care and best wishes.
Yes, I live in Egypt which means 5 hours of flying, the operation is not complicated , it is one hour under anesthesia , and no pain after, you will stay for two days in the hospital after the surgery, you can walk next day and you can sit for short times, I still have some difficulties moving freely due to the incisions, but things are getting a little better now, I don't need any medications now but the hospital give you a couple of Tramadol pills in case of any pain.
Oh thank you for replying so promptly you have been really helpful. Did you have both sides done or just one? How is the pain now? Are you pleased you've had the operation? Sorry so many questions.
Hi, I am 2 years post op in August. I had pn, cluneal ,pfcn and anal nerves decompression. Both sides done , right side came out much much worse. Nearly 2 years on right side improved but still not right and is still worse from op
I am able to access more of like than before op, just frustrating. I had a haematoma, it was considered too small to be other bother, but I often feel like I have a bulldog clip clipping bits of sit bone and butt cheek together. Right side vaginal walls are affected, sexual arousal causes muscles to clamp.
It was a very long and stressful recovery, would I have it done again, hmmm, bit sure . On a good day I would say yes, I need to manage my stress levels, muscle stretches and meditation help. There is a strong muscle component involved as the nerves affected have motor and sensory,....so sensory input often triggers my muscles to tighten . For the first 6 months I could barely get my right leg to walk properly, I walked with a stick for about a year. I still use a cushion, but can sometimes sit on hard chair. You have to be prepared to deal with how you will feel if it goes awry, once done Prof Robert says " Time Madame!" At a check up a year later he said he does see people like me, after surgery, but he has no idea why. I clearly displayed a pattern he recognised, but had / offered no explanation. Looking back at pics I sent him, I think I can see the haematoma, looks like dimpled orange peel skin. It was detected on ultrasound in a and e UK, ( the pain was that bad) but Robert said it would go. Good luck !
Sunday I drove 20 mins x 2, sat for lunch on my fleece and had sat on hard sauna surface. Before op that would have been tricky, I told Prof that it felt like I was sat on a cooker ring that was turned on gradually, sitting just became intolerable. I cwn can. Do more nowx
“There is a strong muscle component involved as the nerves affected have motor and sensory,....so sensory input often triggers my muscles to tighten .”
I am not sure you have read about “Low Dose Naltrexone.” (3.5 mg) It blocks the sensory nerves at the brain source. I have found it nothing short of a miracle. The pain is still there but how I perceive it makes it bearable. The lowest dose available at the pharmacy is 50 mg. so I have to have it compounded at a sizeable cost. I find it such a miracle that I actually pay for the compounded capsules. Pharmaceutical companies are not interested in it’s manufacture as there is no money in it. I thought I would throw that out there. Thank you for your story, I am so sorry for your pain. I has been 10 years and just so overwhelming for me.
If you took the Naltrexone @ 50mg would that be too much?
Can you tell me please who diagnosed you and told you that you were a candidate for surgery? Last summer I went to see Dr Greenslade in Bristol who told me I met most of the criteria for PNE and gave me a nerve block. Everything was numb for several hours except the pain. I had to ring his secretary the next day to tell her how I was, she told me told me to up the amitriptyline to 3 at night which I did, and having tried several times to contact her she hasn't returned my calls, so I can only think that either it's not PNE or the nerve block didn't work. Can't sit, walking can be difficult, pain goes to the top of my sacrum and lower back, it burns, and rubs, just so debilitating. I would be pleased to have any information you have been able to require.
Hi, sorry for slow reply,only had my phone over half term, too small to type on !
I had initial diag from Dr G, like you I have had numerous problems getting any further communication. I had bilateral nerve blocks in Nantes, cluneal and pudendal. Done on the same day about 1.5 hours apart. I was able to sit for 24 hours after the procerdures. I returned to Nantes about 6 weeks ago for a follow up and met Prof Roberts. I have been offered surgery but a currently waiting for results of spinal mri to rule out an alternative / additonal condition.
I have been very impressed with the Nantes team, they listen, they are not opinionated and pompous, they were able to fit me in for the cluneal nerve blocks on the same day, despite not in the plan.
Hello. I have posted quite a bit since returning from Nantes on 26th of April. My posting reads I have had pudendal nerve surgery in Nantes. Have a look.. If it is not too late and you have had the surgery already.
Hope you are well. You had surgery in the Nantes? its a possible that I need this? Im in Ohio and have been mis diagnosed for 11 years. And Help would be great full"
I little scared to be honest about this procedure?
Hi guys I am hoping to have the surgery in Nantes,I found your post so helpful...I would like to know the name of the closest hotel to the hospital, and also is ok to travel on plane after a week....also is there anyone one here who lives in France that I can contact if I don't know my bearings
Don t know about the surgery but have coccyx problems I can not sit because of pn i only can sit on my knees on a yogabench with a swimmingboard on it with a hole in it.
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I need to consider my options and plan for potential time off work ( if I have not had to give up sooner ha, ha)
Anyone have successful decompression surgery?
Has anyone else had pudendal nerve decompression surgery?
Laparoscopic pudenal nerve decompression surgery 
PNE 
