Nerve blocks

[helenlegs 11]

Here is the power point presentation by Stanley Antolak about pudendal nerve blocks at Glasgow in August last year. In it he maintains that the blocks are not diagnostic (alone) and can be therapeutic in many cases when employed with lifestyle changes and medication. He recommends they should be given at 4 week intervals for best results. It also shows the where and how the injections are administered (buttock) and gives some results confirming successes.
Interesting.

[flyer28]

Interesting presentation.
Pretty in concordance with that what prof. Urban from Prague told me: the most of pudendal neuropathic cases are not inflicted by severe compression but by mild irritation of the nerve, inflicted especially by muscles, inflammation etc., so no surgery is recommended. Those cases are very responsive to infiltration to Alcock canal and should be treated in that way, repeated 2-3 injections within the frame of 6 weeks or so. Of course, life style modifications and PT and some medication is the golden standard.
I dont know.

[helenlegs 11]

Yes, agreed flyer.
We do get a bit doom and gloom on here sometimes as it's a little one sided (naturally) as we are 'the sufferers' but it's is good to have a more rounded picture too.
All of the Glasgow presentations are interesting tbh. I'm VERY glad that PN is on the agenda at a urological conference. It will bring so much more attention to our problem. It will be in China this year apparently.
Helen.

[Lex1]

Hi Helen

Thanks for sharing the presentations with us.

Dr Greenslade told me exactly the same thing about nerve blocks when I first saw him. He was very up beat about possibility of curing me with blocks! I am having blocks now every 4 weeks. Had two already, one left, so far diagnostic but only transiently therapeutic for me. Hence likely surgery, which at the mo will be Spire Bristol or France. Another battle for funding with NHS coming up! Wondered at the time where he had got his stats from. Being a sufferer can be doom and gloom much of the time so maybe there is more hope from blocks.

Interesting about the spinal cord wind up, I have developed chronic fatigue as a result of the pudendal neuralgia which adds another dimension of widespread pain and fatigue. I remain hopeful I will get through it and get back to some degree of normality.

Regards


Lex

[helenlegs 11]

Glad to know that you are getting some treatment at least, I guess you have to jump that hurdle (thank goodness hypothetically ) first before you can advance with necessary further treatment . I hope Dr G will be able to secure whatever is still necessary for decompression surgery at Bristol on the NHS. I suppose any private surgeries at the Spire Hospital with Dr Wong(?) will be evidence enough.
I hope all of his patients recover well for future benefit as well as their own of course.
Think I should try marketing a 'package surgery' trip to France oooh! might get mine free.

[Bathsheba]

Where is the proof that this procedure works?

I got my PN from having my bladder blown up under general anesthetic to God knows what times its normal size. In addition, something in the procedure was botched as the urologist was teaching a resident. So, my PN was caused not by irritation, but a direct trauma to the pudendal nerve. An ob/gyn who describes himself as a general pelvic pain specialist promised me that a series of 6 CT guided steroid injections would cure my PN. Well, the first one confirmed the diagnosis of PN but the second one probably knicked the nerve as my whole crotch went numb and I lost control of my bladder. So, no more steroid injections for me.

It could be that steroid injections work for people who have PN due to irritation (sitting for example), but not trauma. However, I have not seen any long term studies confirming that these injections work. They are a terrific source of income for the doctor. Mine charged $1,000 for each injection, which took at the most 15 minutes and he prescribed 6.

My two cents. Be an informed consumer of medical care.

Still looking for relief.....

Bathsheba

[helenlegs 11]

Yes I think you have it spot on Bathsheba, I think Dr Antolak does admit that if the first set of injections have no good effect it is worthless continuing. Remember he is not saying that every patient will improve although 70% seems very high to me. ( not medical however)
One reason may be that the diagnosis is not PN ? although he reckons that the diagnosis of PN is from clinical examination . He must then assume that he always get that right.
However, the big factor in deciding if the problem is PN or PNE is a patients history ie. is there any preceding trauma. If the answer is yes (you and me ) and conventional treatments prove unsucessful ( you and me ) surgical intervention is the only option left.
He does have another presentation about PN surgery which I posted elsewhere. Here it is anyway.
http://www.pudendalhope.info/forum/view ... =23&t=3479 in second post after Also in Glasgow
The presentations are all interesting
Take care,
Helen

[flyer28]

tough day today for me, pain at leat 6/10...so the mood is pretty grimm. But no giving up.
prof. Urban also states that the succes of Alcock blocks (which he considers much much safer than block done at ischial spine) are standard treatment even when the diagnosis is CPPS, so no PN as a primary diagnosis.
Briefly, he told me that the true entrapment is very very rare and almost always is an consequence of some previous violent intervention (pelvic injury, complicated birth, repetaed operations etc.). Be careful for some other action which are not so "violent" but might start PN: cystoscopy, catheterisation, distension of bladder etc.
I never got anything of those. My pain started after prolonged sex (but nothing extraordinary) and several times (maybe 5-6 times) completely faded away before becoming chronic. I knew very little about PN at that time and my urologist dismissed it as some "bruising" or pelvis muscles dysfunction.
There were two warning factors that I was not able to read: pain was always DELAYED (2-3 days later) and was pretty intensive (so no light bruising, but pin and needles in the proximal part of penis and penile crura). If I only knew: I would stop sex for maybe half year, I would stop play tennis, I would stop driving etc.
IT seems to be too late.
But on the other hand:
1. pain is still on the same spot and did not creep further up, so I have no sitting pain, my pain is in anterior part of pelvis
2. I never had pudendal block, maybe the nerve is only irritated and after 2-3 blocks it will subside to previous state (I made this experience in the past for maybe 5 times - the pain completely faded away)
3. Last avenue might be dorsal surgery - I am 100% confident, that if there is an entrapment, the spot of this entrapment is distal to Alcock canal, so it is accesible for dr. Aszmann, whose office is only one hour driving from my home. Maybe this is the last and only luck I had in my life.
Waiting for the blocks and we will see.

[calluna]

Sorry to hear that things are difficult for you, flyer28.

Hindsight is wonderful, if only we knew then what we know now, so many things could be different. But you are quite right, no giving up. I do hope that the blocks help you.

[Lex1]

Hi I agree the stats of 70% are high for PN injections. Mine are now done on the NHS so are free at the point of use. Agree with Calluna hindsight is wonderful, my 1st inj made my pain worse initially but thankfully settled. I know I need three to satisfy Mr Wong and Dr Greenslade.
I thinks stats can be useful but all results should be interpreted with some caution as statistics can be manipulated either purposely or inadvertently during trials. Sample sizes are also small so less statistically significant. I imagine also ' correct patient inclusion' into trials is key. PN can be caused by a variety of different causes and research is still obviously ongoing.
Depending on healthcare systems in different countries may also provide more of a finanncial incentive to massage figures, who knows.

Helen I think a comfy bus to France would be great, with beds and pudendal cushions. Might even be able to negotiate a discount on hotels and treatment! Lol

Regards

Lex