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Dutch
Posts: 6
Joined: Wed Feb 09, 2011 1:04 am

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Post by Dutch »

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Last edited by Dutch on Tue Feb 20, 2018 2:20 am, edited 2 times in total.
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Penile Pain - Update

Post by AliPasha1 »

Hi Dan,
You seem to be a good candidate for Dorsdal Nerve Entrapement.Dr. Dellon in the Baltimore/DC area is your best bet and if that doesn't work out,you can always get operated by Dr. Oskar Aszmaan in Vienna,Austria who was probably trained by Dr Dellon.You can also see Dr. Hibner for the dorsal Nerve decompression surgery since he is going to start doing them by next month.There is no point wasting time with Dr. Marvel.
I was confirmed by Dr. Dellon two weeks ago that I have bilateral dorsal Nerve decompression.

Kind Regards,
Ali

PS

Dr. Potter's MRI also revealed that I have dorsal nerve compression in the Pubic symphysis and Dr. Dellon confirmed her MRI findings with his PSSD testing and physical exam.
Last edited by AliPasha1 on Fri Apr 01, 2011 4:49 am, edited 3 times 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
Pelvis Stressly
Posts: 297
Joined: Fri Sep 17, 2010 3:56 pm
Location: Toronto

Re: Penile Pain - Update

Post by Pelvis Stressly »

Hey Ali, you actually went to see Dellon, or just sent him your report from Potter? Assuming it's the former (which makes sense, given that you mentioned a physical exam!), would love to hear the details of your visit, if you don't mind sharing (I'm still thinking of going down to see him).
Thanks a lot, PS.
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Penile Pain - Update

Post by AliPasha1 »

HI PS,
Dr. Dellon seems like a very knowledgable,experienced doctor and he can help you in my opinion.He is about 67 years old and has been in the Peripherial Nerve business for quite a few years.He did a physical exam as well as PSSD(Pressure threshold) Test which determined that I had extensive bilateral dorsal Nerve compression which would explain the burning Sensation in my Penis as well as ED issues.It needs to be determined how much it will help the sitting Pain.

He is new in the PNE business and is finding ways to improve the surgical approach.He isn't impressed by the PNE surgical results so far by other doctors and believes that the surgery can be less invasive and the recovery time should be much shorter and less painful.He has done thousands of Peripherial Nerve surgeries of different parts of the body like PN in his career.

He is expensive and has no association with any insurance company in the US.He takes cash upfront and you have to deal with the insurance company yourself after the surgery or office appointments which is a big headache from the patient's perspective.He will write you a letter to get you approved as an "In Network "doctor.After that,the insurance company will determine the surgical price in that particular area and then apply the "IN Network "Benefits if approved "In Network".In the end you are at the mercy of your insurance company.It seems that you might get a few hundred dollars reimbursement at the end.

The surgical Centre and the anesthetists are "In Network".

I am currently working with my insurance company to see how much reimbursement I will get after the surgery and the office visit.So far it doesn't seem that I will get much reimbursement at all.I have had a Pre-determination done by my Insurance company.

Even though he is very expensive,I would still recommend people to see him.

Kind Regards,
Ali
Last edited by AliPasha1 on Fri Apr 01, 2011 4:20 pm, edited 2 times 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
Pelvis Stressly
Posts: 297
Joined: Fri Sep 17, 2010 3:56 pm
Location: Toronto

Re: Penile Pain - Update

Post by Pelvis Stressly »

Interesting...thanks for the detailed report Ali.

So your PSSD results w. him were abnormal? Meaning you had clearly compromised penile sensation? Did that come as a surprise to you, or has that always been one of your symptoms? Reason I ask is, loss of sensation isn't an issue for me, but my WDT results w. Antolak were abnormal (much to my surprise!), so I don't know how 'obvious' that symptom needs to be for it to register on a test like the PSSD.

Are you planning to follow through with Dellon and have the surgery? I'm surprised you went to see him to be honest...thought your plan was to go to Aszmann instead, to keep costs down.

Anyway, glad he seemed competent & you had a good experience. Hope he can help!
PS
User avatar
ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Penile Pain - Update

Post by ezer »

Very interesting Ali. Did Dr.Dellon say anything about your other entrapment at the ligaments? Did he think It is a factor and do you still plan to have surgery with Dr.Hibner to address that aspect?
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Penile Pain - Update

Post by AliPasha1 »

Hi Ezer,
The Bilateral PNE sugeries with Dr. Hibner are still on.The only question is with whom to have the Dorsal Nerve Decompression surgery.I am proceeding with the less invasive approach first and if it doesn't help,then I have no choice other than to proceed with the Modified TG approach by good old Dr. Hibner.

If the dorsal Nerve decompression surgery doesn't help,then surely I am entrapped in the falciform process of the Sactrotubeorus ligament as indicated by Dr. Potter's MRI.

I have named this year as the "year of surgeries" and my final attempt to get my life back.

I didn't discuss much with Dr. Dellon about PNE.The main point that we discussed is that he isn't impressed with the PNE results and the invasivenesss of the surgery and the recovery time.He has done so many Peripherial Nerve surgeries and their recovery time is within 5 to six months at the most.He believed that there is something missing from the picture and he would like to solve this Enigma.

.My main objective was to confirm dorsal nerve compression.

As far as PNE is concerned,I have full confidence in Dr.Hibner.

kind Regards,
Ali
Last edited by AliPasha1 on Fri Apr 01, 2011 2:33 am, edited 8 times 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
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Penile Pain - Update

Post by AliPasha1 »

Hi PS,
I wasn't very surprised about the dorsal Nerve compression because Dr. Potter's MRI had clearly indicated dorsal nerve compression in the Pubic symphysis and my symptoms correlated with it.The Dorsal Nerve decompression isn't limited to just Penile numbness,You can have a burning sensation,pinching ,Urinary burning in your respective Penis as well as ED and some sitting pain to some extent.
The German acquintance of mine who had bilateral surgery with Dr. Aszmaan had ED issues as well as numbness and some sitting pain.He is thrilled with the results in ten days.He has complete normal erections as well as his numbness is improving daily and he is getting his sensation back.

My left side of the dorsal nerve of Penis had 35 times more pressure than a normal person and my right side had 22 times more pressure than a normal person.The normal is 1 GM/mm^2

I am contemplating whether to have surgery with Dr. Hibner,Dr. Aszmaan or Dr. Dellon at the moment,but Aszmaan is still my favourite pick of the doctors. :D
Regards,
Ali
Last edited by AliPasha1 on Fri Apr 01, 2011 4:53 am, edited 2 times 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
Pelvis Stressly
Posts: 297
Joined: Fri Sep 17, 2010 3:56 pm
Location: Toronto

Re: Penile Pain - Update

Post by Pelvis Stressly »

AliPasha1 wrote:The Dorsal Nerve decompression isn't limited to just Penile numbeness,You can have a burning sensation,pinching ,Urinary burning in your respective Penis as well as ED and some sitting pain to some extent.
I know, but the PSSD measures numbness specifically.
When you say that...
AliPasha1 wrote:My left side of the dorsal nerve of Penis had 35 times more pressure than a normal person and my right side had 22 times more pressure than a normal person.
...you mean that it required that much more pressure from the device (as compared to a normal person) for you to even feel anything on either side of your penis, correct? That obviously indicates some degree of numbness, no?

My question was, did you know had that numbness before the test (ie. was it an obvious sensation), or did the results come as a surprise to you? Because personally I don't feel any numbness, but I'm not sure that means none exists (especially after seeing my abnormal WDT results w. Antolak, assuming I trust those).

Thanks, PS.
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: Penile Pain - Update

Post by AliPasha1 »

Hi PSSD,
I have no numbness in my Penis ,just burning.It doesn't measure numbness or burning sensation.However,during and at the end of the test the tip of my Penis felt like hot iron molten for a few hours.It was really an awful feeling.THe PSSD just determines how much presssure is being applied from the base of the Penis to the tip of the Penis.For a normal person,it is 1 GM/MM^2 .Mine is was 34.3 on the left and 22.4 on the right.That means that is badly compressed. For a diabetic person
it is usually 30 or something.
The test is used for all peripherial nerves in the foot,legs,hands,neck,Pelvis etc.It is not specifically for the dorsal nerve only.

Take care,
Ali
Last edited by AliPasha1 on Fri Apr 01, 2011 1:20 am, 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
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