Who to see in London?

[Holly]

Hello,

I have suffered with pudendal neuralgia for 20 years now. i last saw a specialist in around 2015 and wonder if i should try again to find help? Have there been any break-throughs in the last 10 years?!

Has anyone seen a doctor in London recently? I saw Dr Baranowski on my last appointment and wonder if he is still the best person to approach? I saw him at UCLH. Is he still there these days?

Thanks for any ideas.

Holly

[Violet M]

Sorry, I don't know anyone other than Dr. Baranowski in London.
This is the latest info we have for him:

National Hospital for Neurology and Neurosurgery
Queen Square, London WC1N 3BG
Phone: 020 7837 3611

He is still listed as working there:
https://www.uclh.nhs.uk/our-services/fi ... baranowski


You could check with some of the PT's to see if they know of any other specialists. https://www.pudendalhope.info/european- ... nd-ireland

[Holly]

Thank you, Violet.

I do wonder how much Dr Baranowski practices these days. My digging around on the internet suggests he is a lot less accessible than he used to be. His own website no longer exists, he doesn't have any private clinics as far as i can see and when i emailed his NHS secretary it bounced back as undeliverable!

The London Pain Clinic might be worth adding to your list though as Dr Chris Jenner seems to get some good publicity?

The pain team at the National Hospital for Neurology and Neurosurgery is excellent I am sure but i don't know if one can build a relationship with one doctor. You might just see whoever is on the rota that day? If anyone has any recent experience of going there, it would be useful to know how it works.

I will ask around the PT's too - good call.

All the best,
Holly

[Violet M]

Thanks, Holly. It sounds like you have done a bunch of research already. Wishing you the best in finding someone who can help you.

In order to add a physician to our list we would need their permission. They can contact us via our contact form that can be accessed from the homepage at pudendalhope.org.

Violet

[eraser]

Thank you, Violet.

I do wonder how much Dr Baranowski practices these days. My digging around on the internet suggests he is a lot less accessible than he used to be. His own website no longer exists, he doesn't have any private clinics as far as i can see and when i emailed his NHS secretary it bounced back as undeliverable!

The London Pain Clinic might be worth adding to your list though as Dr Chris Jenner seems to get some good publicity?

The pain team at the National Hospital for Neurology and Neurosurgery is excellent I am sure but i don't know if one can build a relationship with one doctor. You might just see whoever is on the rota that day? If anyone has any recent experience of going there, it would be useful to know how it works.

I will ask around the PT's too - good call.

All the best,
Holly

Hi Holly,

I appreciate this might not be very helpful given your post was a long time ago but I hope it can help others.

The National Hospital for Neurology and Neurosurgery do offer pudendal decompression surgery privately and via the NHS. However, my understanding is that the unit that offers the surgery only has 1-2 surgeons. They will only offer the surgery, if you have nerve conduction studies that indicate you have decompression surgery. Unfortunately, they misrepresent the sensitivity of their tests and claim they offer more tests than other countries that offer nerve conduction studies. However, nerve conduction studies are not necessarily diagnostic (including SEP) and and other countries such as France have abandoned them for good reason. That unit also believe in MR neurography, which is also rarely diagnostic and many international specialists now do not even bother with them. You should be able to get these nerve conduction tests on the NHS but the wait is long I understand. The nerve conduction tests are extremely painful, far worse than a nerve block (for comparison, a nerve block was a walk in the park).

Chris Jenner does appear to be good but I do not have any personal experience. He's a pain consultant so what he will be able to offer is very limited. My understanding from video's that I have seen of Chris on youtube that he does offer pulsed radiofrequency and nerve blocks. I suspect of of the pudendal nerve also but I do not know for certain.

I am not saying do not necessarily go to The National Hospital for Neurology and Neurosurgery but their neurology department unfortunately lack expertise. If you have nerve conduction studies that are positive, at least you should theoretically be able to get surgery but this isn't how entrapment should be diagnosed. I have no idea of their surgical expertise however. If you are looking for surgery and have positive nerve conduction studies, feel free to message me about NHS funding.

[Violet M]

If you have nerve conduction studies that are positive, at least you should theoretically be able to get surgery but this isn't how entrapment should be diagnosed.

Interesting comment, Eraser. It would be an interesting discussion to find out, for people who have had PNE surgery, what was it that led your surgeon to believe you had an entrapment and to recommend that you have surgery? I started a new topic where we can tell our experiences. https://www.pudendalhope.info/forum/vie ... hp?t=12403

Violet