London Neurography: Has anyone with... - Pelvic Pain Suppo...

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London Neurography

johnhunter58 profile image
16 Replies

Has anyone with suspected pudendal entrapment had an MRN (not MRI) scan done?

If so, and it showed entrapment, what was your next step?

My GP and the consultants I've seen say all is okay from the MRIs and I'm wondering who to go to with a possible positive MRN scan. Do doctors accept them?

Any help gratefully appreciated.

John

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johnhunter58
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16 Replies
Allthatjazz123 profile image
Allthatjazz123

A regular 1.5 MRI won't show up the Pudendal nerve and you have to be very highly qualifed to read PN entrapment anyway. I think what you need to do is be referred to a good neurologist and have EMG. Contact the Cobalt Centre in Cheltenham. They may be able to help. Also if you can get in touch with Judy who runs this site, she may be able to help you with the right referral path for PN. There's also the Hope for PN site, with loads of information. I do hope that helps. It can be like wading through oil with PN. Even finding a doctor who knows anything about it. Good luck.

frodofish profile image
frodofish in reply to Allthatjazz123

Even if you have an MRN, no surgeon beyond possibly Filler in the US would use it as a diagnosis. It gives too many false positives. In the UK you can have a nerve block under Doctor Greenslade, or you can go to the Nantes team. MRI's are used, but normally to rule out any spinal issues that may contribute. Have you looked at restorative excercise with David Mcoid, he recovered using it, other men seem to have had success to. I think the neurography is Filler's team in UK,.....but I am not sure,.....Google Aaron Filler and reviews or scam and it may put you off. There were several horror stories.

johnhunter58 profile image
johnhunter58 in reply to frodofish

Thanks for the reply Frodofish.

I am so tired of doctor's telling me there isn't anything wrong when I am in such pain.

I've heard that only an MRN can pick up irritation of the pudendal nerve.

John

Pinky2233 profile image
Pinky2233

I have had it done in the US. Did not show entrapment consistent with MRI's .

johnhunter58 profile image
johnhunter58 in reply to Pinky2233

Thanks for the reply and I am sorry that you had no success.

Are you from the U.S.A. or did you travel there?

John

r5cervelo12 profile image
r5cervelo12

Hi, John I have not. But what is a MRN? I was thinking of getting a 3.0 or 1.5 MRI, for myself.

johnhunter58 profile image
johnhunter58 in reply to r5cervelo12

Thanks for the reply.

A MRN can pick up nerve irritation which MRI's can't (and it can no doubt do other things as well).

I have pudendal nerve pain and I am fed up of doctor's saying nothing is wrong when it clearly is - I'm in pain!

They just say well nothing shows up on the MRIs.

John

r5cervelo12 profile image
r5cervelo12 in reply to johnhunter58

John, I'm in the same position...I don't know if I have PN? because there's so many other branches of nerves around that area. If you don't mind whats your pain issues. Mine happen falling on a bicycle seat. I first thought it was my back, after many...of spine doctors I seen I went to Germany and had a disk replaced that was bad. But it did not help with my pain. So for me just a big process of elimination. I will look into MRN. Im going in for nerve blocks if my Pt trainer says so next week. Also I have talked to a Dr. Oskar Aszmann on PN hope, Have you tried him? He asked me to get a 3t or MRI and send it to him.. But I have not go one yet. Trying to get doctor to listen...its kind of joke the ones I've been to here in Ohio.

Gary

johnhunter58 profile image
johnhunter58 in reply to r5cervelo12

Hello r5cervelo12 and thanks for your message.

I think my problem started in September when I fell from standing onto a plastic crate about 6 inches off the ground. I think I fell on my tailbone.

Anyway, I remember thinking that wasn't very painful at all ... but in early October I started feeling a throbbing/stabbing pain in my backside. The pain is constant, it's hard to sit for long and sleep is difficult. I also have tingling in my toes/feet.

I'm on pregabalin and amitriptyline but I don't think they're that useful really.

MRIs show nothing. A few dodgy discs (I am 58) but nothing to explain my pain.

I have seen a pudendal physiotherapist but no real change in symptoms.

Doctors aren't interested - unexplained neuralgia.

I am getting depressed, obviously, with the pain and I do find it so disheartening when nobody seems to believe that you have very genuine pain.

Rant over ... for now.

Good luck in Ohio.

John

r5cervelo12 profile image
r5cervelo12 in reply to johnhunter58

Good luck to you as well.

Gary

in reply to johnhunter58

Hi John,

Just wondered if you had any luck arranging an MRN? What are your latest thoughts/plans about your problem?

Thanks.

johnhunter58 profile image
johnhunter58 in reply to

Hello Socirul.

Belated Christmas greetings!

I didn't go for an MRN. I rang the U.S. and was sent the forms but I wondered just how 'valid' an MRN scan is in the U.K..

I am still in a lot of pain and I am going to see Dr. Greenslade in Bristol on 7th January.

Let's hope the New Year brings some good news for everyone on this site.

John

in reply to johnhunter58

Okay, thanks John for the update. Hope your appointment goes okay. Would you mind posting an update afterwards?

Seasons greetings to you too.

johnhunter58 profile image
johnhunter58 in reply to

Hello Socirul.

I did get to Bristol and saw Dr Greenslade.

The latest MRI I had in early Dec showed two prolapsed discs. I didn't know this until I went to Bristol. The results were sent to him the day before. I had an MRI in Nov and that didn't highlight any prolapses ... just general wear and tear.

Anyway, in the end Dr Greenslade gave me an epidural steroid injection.

I don't think it has had any effect (cica 50% success rate).

I may or may not have a pudendal issue but right now am telling myself it's a disc problem.

It is so easy to get depressed with near constant pain, and that makes things worse. I have to try and be more positive.

Good luck Socirul and keep in touch.

John

johnhunter58 profile image
johnhunter58

Certainly Socirul.

I am thinking/hoping that there will be more than one visit.

All the best.

John

Hi John, I'd say don't "try" and be more positive; my experience with that approach is that it's draining and doesn't really work (although it can get you through in the short-term). The "trying" I prefer is to explore new ideas and maintain the ones that seem to help. That offers me more hope.

Here's some things that have worked for me:

*Daily walking, trying to be aware of my posture as I move.

*Heat pad twice a day (I've got one of the wheat ones you put in the microwave).

*TENS machine. Experiment with pad positioning. (This is the one I bought: amazon.co.uk/gp/product/B00...

*Stretching exercises (work out what helps). My hamstrings are always really tight so I focus on those. If you know a park with "monkey bars" try dangling from them, letting your legs and pelvis "drop" down. I'd say be really careful if you want to do this as the impact of landing back on the floor could hurt your back even more! Some places also have two parallel bars at waist level that you push yourself up on; I try and hold that posture for 20 seconds or so. I don't know your pain level or how these things would affect your discs though...

*Drink plenty of water.

The fact that you say you have tingling in your feet (I have numbness in the legs and feet in general) suggests that it perhaps might not be the pudendal nerves.

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