Hi there,
I would love to hear from anyone who has had an MRN in the UK. Was this possible on the NHS? Did MRN show your PNE? If you could share your story, I'd be really grateful. I'm at a diagnostic deadend right now!
Also, I've read a lot about Potter MRI - are there any docs in the UK who offer similar diagnostics? (I have had a regular MRI but it shed no light.)
I would really appreciate any help or advice. I am living with all the symptoms of PNE, but I'm finding it hard to get a diagnosis.
Thank you,
Cassie
Have you had an MRN in the UK?
Re: Have you had an MRN in the UK?
Hi Cassie,
As I understand it, MRN's are much more expensive than standard MRI's which may account for the reason why I've never been offered one by my GP. Actually I've only ever heard of US neurosurgeon Dr.Aaron Filler who regularly performs MRN's for pudendal neuropathy. He only last year opened a Nerve Scan Center at The Neurography Institute in London. Got the feeling no other PN doctor uses MRN's.
MRI's - as you've found out, a standard MRI shows nothing pn-related as the nerve is too small. I had a lumbar scan done in London and although it was useful to rule out disc degeneration/tumours, etc., a standard lumbar scan doesn't encompass the pelvis at the ischial spine or the Alcocks canal - both prime areas of pudendal irritation or entrapment. Regret to say there is no-one in the UK currently with the expertise and diagnostic software of Dr. Hollis Potter in NYC. Believe me, I've tried to find one, along with a few others who post on here and also on other pelvic pain sites. We do have the 3T scanners here in the UK, but no one is currently up to the job. Its certainly a slow process here to get a factual diagnosis!
To get your diagnosis, or the best you will currently get in this country,your GP needs to refer you to a PN consultant. In your case that would be Dr. Andrew Baranowski at the National Hospital in London. I have had two double nerve blocks done under him and am now asking my GP for referral to Dr. Greenslade at the Frenchay hospital in Bristol. A long way to trek I know, and also apparently permission has to be got from my local PCT for referral out of the London area. That was 3months ago, still waiting on a decision!
I hope you get your diagnosis soon Cassie, and feel free to message me if you want any details about the referral process or the procedure at the National.
Take care,
As I understand it, MRN's are much more expensive than standard MRI's which may account for the reason why I've never been offered one by my GP. Actually I've only ever heard of US neurosurgeon Dr.Aaron Filler who regularly performs MRN's for pudendal neuropathy. He only last year opened a Nerve Scan Center at The Neurography Institute in London. Got the feeling no other PN doctor uses MRN's.
MRI's - as you've found out, a standard MRI shows nothing pn-related as the nerve is too small. I had a lumbar scan done in London and although it was useful to rule out disc degeneration/tumours, etc., a standard lumbar scan doesn't encompass the pelvis at the ischial spine or the Alcocks canal - both prime areas of pudendal irritation or entrapment. Regret to say there is no-one in the UK currently with the expertise and diagnostic software of Dr. Hollis Potter in NYC. Believe me, I've tried to find one, along with a few others who post on here and also on other pelvic pain sites. We do have the 3T scanners here in the UK, but no one is currently up to the job. Its certainly a slow process here to get a factual diagnosis!
To get your diagnosis, or the best you will currently get in this country,your GP needs to refer you to a PN consultant. In your case that would be Dr. Andrew Baranowski at the National Hospital in London. I have had two double nerve blocks done under him and am now asking my GP for referral to Dr. Greenslade at the Frenchay hospital in Bristol. A long way to trek I know, and also apparently permission has to be got from my local PCT for referral out of the London area. That was 3months ago, still waiting on a decision!
I hope you get your diagnosis soon Cassie, and feel free to message me if you want any details about the referral process or the procedure at the National.
Take care,
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.