A bit of clarification

[Alessandro76]

Hi,
Yes more or less we are living same experience.
Now I’m on this situation since 2 week, and finally Im on my way to airport to fly to my
Physiotherapist and get 2 strong week of sessions. I really hope he will be able to bring me back, or at least give answers.

At the moment I’m sitting on the train ( which in England are not so comfortable)
And it seems fine, let’s when I will be seated on the plane.

In the Coming week for sure I will know what is happened .. by the physio and by the mri scan

To me
You should never ever leave physio,
On my case physio plus benzodiazepines are only things working.

[Alessandro76]

I live in terror mood, even if in 12 years all the doctors, all the MRI all the physio have always been excluded from a neuropathy, I am always afraid, when I have eposodes like these, I think, ok here we are.
Do I have a neuropathy? I don't understand ...
that's why I written on this forum, perhaps some member can give me more info, don’t know..

if you live in europe why don't you consider a visit to france ???

[Alessandro76]

Anyhow, I have to thanks this forum, when I had strong crisis
4 years ago, this forum helped me to find what I was looking for.

At the time I never developed classic neuropathy symptoms
But 4 years ago, without do nothing, I have started to feel pain around my tailbone
And I had this “tennis table ball” in my rectum.

I digited on Google” tailbone and external body in the rectum “
and as result All pages mentioned pudendal neuropathy.
I was shocked.
I’ve read any topics, but especially, I read the doctor list based on the comments read on the forum.
And I’ve sent 3 email
1 to Becò
1 to Bautrant
1 to Auzaman

Becò replied almost immediately , and he wrote me that I was not accepting anymore males.
Auzaman Never replied
And with bautrant I booked a visit..

All of them have different surgery approach for what Ive read,
But for sure they have all, enough experience to give me a diagnosis.

[flyer28]

Keeping fingers crossed for your journey and exams and PT.
My problems are in anterior part and dr.Aszmann is best neurosugeon in this anterior operations (dorsal nerve decompression).But the results are mixed and I have always read that a positive block is a necessary precondition for operation, The block did nothing although it was placed very exactly under ultrasound guided technique by one of the best interventional radiologists dr. Bodner in Vienna (I live 60km from Vienna, so for me it was only one hour driving). No need to go to France I think.
In these gloomy 2011-2013 years I was almost sure that I have a true entrapment of right dorsal nerve. But the MRI (without other confirming indications - Tinnel sign, palpation etc.) is never a 100 procent proof...In that time I was almost ready for operation. But then I gave the chance to physiotherapy, which delivered some very good resulst..If you had asked me in 2018 or 2019 if I would go to operatioon I would say never ever...I was even playing tennis or soccer occasionaly without problems.
I think in pelvic myoneuropathy the huge role is played by anxiety and catastrofizing...Your (and mine too of course) insight to your condition is heavily distorted by your current panic attacks and anxiety. I know it very well. For example, I found a pattern, when anticipatory anxiety (long flight or long session in comitte in my job or so) is inducing the flare up even before the journey or session started. This is true devilish anxiety which can wear million mascarades...Usually when I was flying to vacation to Greece every year, the fisrt flight was an endless torture...and the flight back home was fully relaxed and comfortable...Anxiety plays a major role in this condition and the people who dont have CPPS/PN cannot understand that..be strong buddy..

[Alessandro76]

the doctors mentioned by you are really considered.
To be honest you are right, I guess we should know before which branches of our pudendal nerve is involved and then do the most appropriate research’s.
Saying this, what I would to understand from you (or other memers) is a simple thing,
if I got correctly, they did block nerve before the Tinnel’s massage?, for instance, if they had the massage before the block nerve it was not necessary? I’m assuming with the Tinnel massage if something was wrong with your perineal nerve you would jumped from the bed?


To be honest, I really do not understand. I was sitting on the plane for almost 3h and the only thing I felt was my superficial perineal area tight. ( nothing more)
Second question

How is work the first visit Aszmann? Waiting list? ( bautrant it’s almost 3 months) and before the visit with you need to some exams, but you will do it the before on his Clinique)

About trips or other I flew to Thailand, 2 times in 2019 and early 2020, more than 12 hours of flight, no problem, I was riding a motorcycle in not exactly confortabile roads and I did not any issues etc etc and now? Btw, the anxiety is the real element that keeps loop always on

[flyer28]

I was at dr. Aszmann several times, maybe 3 times. In fisrt visit he palpated all the suspected spots of entrapment and said that "you dont look like my patients" who are screaming when he palpate the pudendal nerve (they feel sudden stabbing, electric like pain). I felt nothing only the pressure of his finger.
Then I made 3Tesla MRI where he found some fibrotic thickening in right dorsal canal. He said it might be the culprit of my pain. Then he tried distal pudendal nerve block - but I did not have any alternation in my pain. So I did not go to operation. Meanwhile I started PT which delivered some really good results and delivered many months of almost asymptomatic periods, even post-ejaculatory pain was diminished to one or two days discomfort and thats all. So I tried to research CPPS avenue. Almost all CPPS patients report post-ejaculatory pain and many other symptpoms similar to mine. I feel that I have some kind of PN but I was able to manage it with conservative ways (despite of recent flare-up with predominantely neuropathic pain).