Cluneal Nerve Entrapment of Iliac Crest Surgery Options

[Hollyef]

Hi

I have a cluneal nerve entrapment of the iliac crest.

I fell 8 years ago on ice and have not been the same since. I was passed from one doctor to consultant all sure I had : fibromyalgia , facet joint and even told it was in my head. The reason being, my spine looked fairly healthy for a women my age .

My chronic pain has affected my life beyond measure. Finally, after a terrible flair up, i went private and found Mr Andrew Fitzgerald , orthopaedic at The Spire . I was given an MRI again and when he examined me, pressed near the cluneal nerve , i yelped. At last i had a diagnosis 6 years from the original fall . I was given nerve blocks which have been 50 /50 in success.

Last august 2013, i slipped on metal stairs that were wet and fell, breaking my wrist and damaging the cluneal nerve more along with adding a Tarlov cyst symptomatic to the base of my spine ( yes i have put a claim in ) i have not been able to work for a year.

I cannot stand or walk for more than 15 mins and although on 50mcg Fentanyll patches of morphine, i still walk with a cane at 31 years old.

I have read on here about nerve decompression surgery in Nantes , France, under Dr Roberts. Along with Dr Christopher Wong in Bristol, who trained under Dr Roberts. I wondered if these doctors offered nerve decompression for cluneal nerve entrapment . Also, i realise Dr Roberts in France is private, so how much the surgery costs and sucess rate percentage. If Dr Wong in Bristol, is he private and how much is surgery ?

I feel like the NHS only puts a plaster on the problem with nerve blocks that are 50/50 . They do not address the root cause and address it .

If you have any info please let me know

Holly

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Holly,

Just to let you know that in Europe, the cross border health directive allows treatment for rare conditions which this is. There is information online on how to go about this.

[Hollyef]

Hi , thanks for replying. I was not aware cluneal nerve is a rare condition.

I assume i research " cross border health directive " to learn more about treatment options ?

Are you saying NHS treatment is available or private?

My apology , i am unsure what it all means

[66crusader in reply to Hollyef]

You could have it done in France and the NHS pay, you will need a good GP supporting you. I would only go to France for surgery, he is the expert.

I am considering it for PN..........but these surgery are a big disission.

[2cv1964]

I'm going to travel up to Nantes in January for PNE Pudendal Nerve Entrapment decompression op. I am on the French health system here - but I want to find out how much it does cost .. so will be back on this site when I find out.

[Hidden]

Hello Holly-

I also have severe cluneal nerve entrapment. Were you able to find release or nerve neuroablation in the UK?

Thank you for any advice.

Nat.