Hi, I have a cluneal nerve entrapment of the Iliac crest diagnosed after 5 years of misery, by Mr Fitzgerald at The Spire, in Manchester. He told me that it is a common yet poorly understood condition. I told my pain clinic at Hope Hospital, who said they had never heard of the diagnosis.
I have had a number of nerve blocks which have been hit and miss. I contacted a consultant in the UK , who had trained under Dr Robert in Nantes. He told me that he recommended that I go to Nantes for treatment as Dr Robert developed this operation for cluneal nerve entrapment of the iliac crest.
Knowing that people can have treatment for Cluneal Nerve Entrapment treatment in Nantes, France. I wondered if anyone here has taken this route and how much in total it cost for everything ? I need to be able to calculate an estimate for the everything ( so I can figure out hotel prices dependant on number of stays and flights )
I wondered if anyone has been to see Dr Robert in Nantes ?
What is the process for getting an operation under Dr Robert in France ?
Did you have to go on separate occasions for the consultation, pre op and post up and how much were each consultation ?
How long did you have to stay prior to the treatment and after for follow up ?
How much was the treatment in Nantes for Cluneal nerve entrapment ?
Did or can you get help through the EU Directive to pay for some of the costs ? ( since this operation is not in the UK )
Finally, has anyone had positive results from this treatment ?
Thank you
Holly
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HollyElsieN
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I had the cluneal nerve for the last 8 years but was diagnosed by Mr Fitzgerald privately at The Spire. As far as Mr Fitzgerald was concerned, I was under control with the pain and had nerve block which as I said were hit and miss. I was working and going to the gym but was on pain medication.
I fell down a flight of dangerous metal stairs August 2013 and I am now registered disabled because of the plethora of symptoms. I had an MRI following the fall and that was when they found the Tarlov cysts at my sacrum.
Mr Fitzgerald said in exacerbation " I had you fixed,no more falling down stairs !" . The pain clinic at Hope said there is nothing they can do for either condition and just have to accept that I am disabled now.
I was told by Mr Fitzgerald, that the fall in August 2013 caused more damage to my cluneal nerve and also the Tarlov cysts.
I really now need to know what the process is for getting my cluneal nerve treated in France under Dr Robert...Do I write or get referred ? How much it will cost in total.
My Tarlov cyst is not being treated by the NHS as they said there is nothing they can do, but I now have a consultant name in London whom I will go see for a second opinion.
Who knows what symptoms are from the Tarlov cysts or from the cluneal nerve. All I know is that I am in chronic pain 24/7, have fentanyl patches and tramadol for the pain and that only blurs the edges but not relief ,plus at 32 I walk with a cane, cannot stand or walk for more than 5 minutes and sitting in high backed chairs hurts terribly.
I refuse to accept there is nothing I can do. I will go see the consultant in London for a second opinion on Tarlov cyst but also I want to have my cluneal nerve treated in France .
I just wish there was some information on how to get treatment for cluneal nerve under Dr Robert. It seems very hard to get clear directions as it is all hear walkthrough forums lol
I thought Judy-B on this forum can act as an intermediary between you and France? I am looking at going over for a consultation.........you can email Professor Robert direct....as I no of a people who have.....and it is possible with help of your GP to get the surgery paid for.....again I no of a few who have had it paid for via the NHS this is for pudendal Nurelaga.. a consultation visit with a nerve block is around the £1,000 mark and surgery for PN is around £6,000......if the NHS won't pay....but if others get it paid then so should the others......Good luck.
The cost is lower than above. You can e-mail me at info@pelvicpain.org.uk. I don't know of anyone who has managed to get the cost covered for surgery for the cluneal nerve so this could be a dfferent kettle of fish from pudendal nerve decompression. We are in regular contact with several people who have had the latter covered by the NHS.
What are your symptoms of cluneal entrapment, I am seeing the Nantes team this week, I have PN but also symptoms over SI, ilica crest, the area that matches Maigne / thoracolumbar junction. When I sit down it feels as though all the nerves over left hip have been stretched, butt goes all weird, then there is the sitting pain. I had assumed mine was all connected, but could not figure out hip pain. I get electric shocks over SI joint and my glute has wasted over hip area
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