Any dorsal nerve decompression successes?

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flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: Any dorsal nerve decompression successes?

Post by flyer28 »

Still have the constant pain at the base of penise. more on the right side than on the left.
Considering biofeedback for pelvic muscles. the focal point of my pain is in the area of ischiocavernosus muscle and upper part of shaft.
Still thinking about dorsal nerve entrapment. Pain is not abysmal, but persistent.
Only diagnostic contra PNE is that pain is not positional.
Am scheduled for 3Tesla MRI for 9th November and will probably then contact prof. Aszmann for further consultation.
I think that dorsal entrapment is more and more probable.
Meanwhile I know how tough is this condition to battle.
Never giving up but momentary the moral is quite low.
Matt
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Any dorsal nerve decompression successes?

Post by AliPasha1 »

Hi Matt,

The Pudendal nerve seems to be the culprit because as in my case the starting point of reference was the Pudendal nerve and not the dorsal nerve .However,Dr. Bautrant did a crappy job and wasn't able to decompress the whole nerve initially which was expected of him.

I hope that Professor Aszmann starts doing the Pudendal nerve surgery soon.

Kind Regards,
Ali
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Any dorsal nerve decompression successes?

Post by Karyn »

AliPasha1 wrote:Dr. Bautrant did a crappy job and wasn't able to decompress the whole nerve initially which was expected of him.
Ali: Is that a realistic expectation with the TIR approach?
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: Any dorsal nerve decompression successes?

Post by flyer28 »

Ali,
you might be right that even my case is classic PNE issue.
This has not been completely ruled out, however dr. Aszmann said after palpation that this is improbable.
Hope that 3T MRI will reveal at least SOMETHING suspiciouos.
Would prefer Aszmann for surgery, of course, when reading all these disapointing stories...
I asked for a date for consultation, till now he did not answered.

But do you think that PNE might be NOT related with sitting?
My pain is basically the always the same, whether I am standing, sitting, walking...
And is clearly more related to anterior parts of pelvis: shaft, base of the penis, ischiocavernosus...
No anal pain.
If I had to estimate what is the problem, I would bet on entrapment of Dorsal somewhere in urogenital diaphragm...
M.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Any dorsal nerve decompression successes?

Post by AliPasha1 »

Hi Matt,

It could be the dorsal ,perineal branches of the Pudendal Nerve as well as genitalfemoral nerve.Those are the two areas where that urogenital area is being served.If you don't have sitting pain,then I doubt that it can be the Pudendal Nerve.

In my case,the paresthersia is related to the Pudendal nerve as per Dr. potter and my rectal pain.

Dear Karyn,
The TG surgery is far worse in reality than TIR and far more dangerous in nature with same unpredictable results as TIR.

Take care,
Ali
Last edited by AliPasha1 on Thu Oct 06, 2011 4:33 pm, edited 1 time in total.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: Any dorsal nerve decompression successes?

Post by flyer28 »

Ali,
at least you know your diagnosis and problems much more precise than me. That s your advantage. And of course your knowledge about topic.
If you know exactly what your problem is, you can estimate your risk/benefit ratio at various types of surgery. I am still not at that point, hopefully will be after 3Tesla MRI.

Let me share some general thoughts from various fields (as a suffering layman):

1. Still thinking that word ENTRAPMENT is overused in diagnosis here. Especially those like me who have bilateral pains.
I think many of us are suffering from inflammation, irritation, tension, etc, of pudendal nerve at various locations, but true entrapment
for those who didnt have complicated pelvic surgeries, complicated deliveries, pelvic injuries etc. - is rare. If I analyse my case: the pain started episodically in 2009 always after mechanical irritation (mainly sex), lasted for 7-10 days, was exactly the same pattern like nowadays and was quite heavy intensity (so no vague discomfort, real bad burning pain). This was repeated 5-6 times and I always fully recovered. That means that there was no entrapment and hope that still isnt. maybe heavy inflammation, chronic tension etc. - all conditions which might be treated conservatively - rest, anticonvulsants, steroids. The aim is to calm down the nerve.

2. Regarding location of inflammation - it must be somewhere in the penile ligaments, the pain is radiating to surrounding (shaft, adductors) but not going into posterior part of perrineum. Slight propagation of pain into the legs. I admitt that problem might be in enlarged veins, pressing on dorsal nerve. I dont have any sensory loss, ED, urinary problems, or pain in the glans of penis. General feeling is that root of penis is inflammed (stretched?)...Pain is not positional, sometimes the worst is when I am lying on the back.
This indicates that either dorsal or perineal nerve is the problem. Dont think that pressure is from Alcock canal, it seems to be somewhere in pubic ramus or urogenital diaphragm or....Adductors are also involved but not the main culprit. I think that other nerves - especially genitofemoral - are also contributing but not playing the major role.

My condition seems closest to what Shawn, PN_Down_under and Ken described in their cases.

3. Still little bit thinking about cavernousos small nerves, vessels etc., that means the pain which is transmited sympathetically. In that case, superior hypogastric plexus block would be plausible solution. I have read that even the patients having severe penile pain after resection of prostate were completely cured with no residual pain. dr. Urban from Prague stated that they have very good experience with that procedure with minimum complications.
Any opinions?

Matt
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: Any dorsal nerve decompression successes?

Post by A's Mommy »

Matt

My opinion is based on everything you've said, Prof Aszmann will definitely be able to help you! He is highly adept at addressing issues with the distal branches at the UG diaphragm. When and where is your 3Tesla MRI? When do you travel to Vienna? Let me know if you need help w anything. I had bilateral surgery two weeks ago in Vienna.

Best regards
Jessica
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
paulette
Posts: 184
Joined: Sun Sep 19, 2010 6:13 pm

Re: Any dorsal nerve decompression successes?

Post by paulette »

Jessica,
I posted this question on a previous topic, but I would like to know some of the symptoms of entrapment at the distal alcock's canal? How is it different from entrapment in the ligaments? Thank you! Paulette
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: Any dorsal nerve decompression successes?

Post by flyer28 »

Finally I have report from my 3T MRI. Here it is

"The course of neurovascular pudendal plexus is bilaterally non-remarkable (regarding both configuration as well as signal) with the exception of single varix in the area of Alcock canal.

Ves. Seminalis in the left is decreased, retracted to the central line and has modified signal intensity – in T2v hypointensity, in T1v hyperintensity. Right ves. Seminalis and prostate is without any significance.

Bladder without any mural abnormalities.

No ascitus.

No pelvic or inguinal LAP.

Skelet without alteration of signal intensity.

Conclusion:
Bleeding of older date into the left seminal vesicula and its retraction indicates chronic inflammation process.
N. pudendalis in all visualized course non-remarkable with the exception of single vascular varix right in the Alcock canal."

my comment: despite of the conclusion of radiologist I think that the main problem is not vesicula but that varix in right Alcock canal. This might press on the nerve. On the other hand, I am little bit confused because my pain is bilateral and not positional (sitting does not make it significantly worse). If there was a compression in Alcock, it would be clearly affected by sitting position. Moreover, dr. Beco wrote me in the email that he does not believe that a single varix might impose PNE.
I fixed my consultation with dr. Aszmann for 21st December. Hope that he will be able to interprete it more precisely and to schedule me for 17mHz ultrasound with dr. Bodner.

All the best to all others suffering mates

Matt
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
User avatar
A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: Any dorsal nerve decompression successes?

Post by A's Mommy »

Matt,

Where are you from? Do you live in Austria?

I am confident that Prof. Aszmann will help you. He is a good man.

Best regards,

A's Mommy

PS: The good news is that it does not seem as though you have scar entrapment. Should your nerve have to be surgically explored, it should be easy for Aszmann to ligate the varix and your nerve should heal almost immediately (in my opinion, alhtough I am not a doctor).
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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