UK doctors & 3T MRI update

[eraser]

Thanks Violet. I have had several mri's of lumbosacral plexus and I am already aware of the nantes criteria. I think my mind is made up as I have always been a believer in surgery and my symptoms are that bad. Convincing the nhs of this will be another matter mind!

Is this a new thing that the nhs isn't assisting patients in the UK to pay for surgery? I don't remember anyone posting about it before. If so, that is extremely unfortunate!

Violet

I am not saying they won't but I have heard that it is not so easy from users on this form and knowing the current healthcare landscape in the UK, I can understand why. There is a general reluctance amongst pain specialists in relation to surgery and instead they prefer to use methods, which largely don't work and certaintly don't in the long term (i.e. steroid injections). Additionally, due to the way that services are commissioned in the UK, if commisioning bodies do have a local policy (most rare conditions such as this) then an exceptional funding request needs to be made. Exceptional funding requests are determined by an independent panel and whilst I think they will find in favour of patients with pudendual neuralagia in general, funding restraints does put all of these types of requests in the balance. Consultant admin in the NHS is generally quite bad. Hopefully I am proved wrong but we will see and I will report back.

More information about exceptional funding requests:-
https://www.england.nhs.uk/long-read/in ... -patients/

[Violet M]

Well, I guess there is reason for hope that it will get paid for -- you just have to go through a tedious process it sounds like. Wishing you the best as you pursue treatment.

Violet

[eraser]

Well, I guess there is reason for hope that it will get paid for -- you just have to go through a tedious process it sounds like. Wishing you the best as you pursue treatment.

Violet

Thank you, sure I will manage it somehow. Just ridicilous.

[April]

Hi eraser,

You asked about my post-op pain. It was not bad. I had a device that dripped lidocaine on the nerve for several (maybe 4-5) days afterwards. I also had pain medication (though I tried to not take much of that). My pain levels fluctuated quite a bit in the year or two that followed, but I would say I got most of the pain relief in the first year or two, and then I seemed to very gradually get a little better for a couple of more years. But I still (and I am sure I always will) get pain flares every few months that I control with a heating pad. And I also have a small amount of pain off-and-on most of the time. You asked if I can do everything I would like to do. No, I cannot. For example, I don't do anything more intensive than walking for exercise, since my pne started from working out intensively on a step machine.

Again, I'm sorry to hear about the challenges getting it paid for through the UK health care system. Keep us posted on that.

April

[eraser]

Hi eraser,

You asked about my post-op pain. It was not bad. I had a device that dripped lidocaine on the nerve for several (maybe 4-5) days afterwards. I also had pain medication (though I tried to not take much of that). My pain levels fluctuated quite a bit in the year or two that followed, but I would say I got most of the pain relief in the first year or two, and then I seemed to very gradually get a little better for a couple of more years. But I still (and I am sure I always will) get pain flares every few months that I control with a heating pad. And I also have a small amount of pain off-and-on most of the time. You asked if I can do everything I would like to do. No, I cannot. For example, I don't do anything more intensive than walking for exercise, since my pne started from working out intensively on a step machine.

Again, I'm sorry to hear about the challenges getting it paid for through the UK health care system. Keep us posted on that.

April

Many thanks, I suspect I wouldn't get a pump if coming from the UK. I am glad you've had some improvement, although sorry that it hasn't given you a complete cure. I will let you know as hopefully it can help others from the UK.

[April]

Thanks, eraser. Yes, do keep us posted.

April

[Balenul]

Their biggest concern isn't that there isn't a definitive test and they are concerned about people who have had the surgery, and have ended up much worse. I think very soon, they will end up having to accept that it's the only way forward.
Peter

Yes, there is always a risk of getting worse with surgery, although from reading patient reports on this forum for many years now, it is not typical for people to get worse. When you are already in a really bad state as I was before surgery, you get to the point where you are willing to take that risk. I know it's an agonizing decision. It's true there isn't a definitive test for whether you have an entrapment, but there are some criteria that can give you a pretty good idea as to whether you have an entrapment. https://www.pudendalhope.info/wp-conten ... iteria.pdf
These criteria aren't always 100% accurate but still worth considering since some or all of the essential criteria are typically present.

I agree with kimc that Dr. Antolak is a "true giant in PNE field" as he was the doctor who confirmed my diagnosis when there were few doctors in the US who even knew anything about PNE. I think he did the pinprick test on me but also recommended an MRI of the lumbosacral plexus in addition to the lumbosacral MRI I had already had, to rule out any obvious problems in those areas (such as a tumor or spinal radiculopathy) -- but not an MRI of the peripheral pudendal nerve, and not an MRI to determine if there was a pudendal nerve entrapment.

I wish you the best as you figure out what to do.

Violet

my nerve is with problems on right side and i wake up alot...have no sitting pain etc...only horrible urinary issues and abit of right base penis pain but not big and rare.So criterias don t work good for all like you said