Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Kit wrote:
Also, I do not know if my penis pains are due to something Dr. Ansell did or just due to the progression of the pudendal problem. My guess is that it is the pain progression. And someone asked what Dr. Ansell said about the development of penis pain. Evidently you have not dealt with Dr. Ansell. Once the surgery is done, he is just unreachable and does not give a rip what your status is.
Kit
This is most absurd.How can it be the progression of the Pudendal nerve if Dr. Ansell succcessfully decompressed the whole PN nerve.That is most shocking to learn that he doesn't give a rip about the patients what happens to them after the surgery.This is unacceptable.
I would sincerely advise you to proceed with Dr. Potter and see if your Perenial or dorsal Nerve is indeed scarred,damaged or entrapped in scar tissue and then proceed with Dr. Hibner.
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
AliPasha1 wrote:That is most shocking to learn that he doesn't give a rip about the patients what happens to them after the surgery.This is unacceptable.
Glad to see this in writing, because I CANNOT WAIT to see what happens when you're post op from Dr. Hibner and you try to call him to talk about your case, or even get in for a follow-up appt. I've been hearing that it's no better for Phoenix patients. At least Houston patients can get follow-up from Dr. Renney or Dr. Popeney, to try some other meds or another nerve block if it was helpful.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
Celeste,
Well if Hibner does that,then he better change his protocol.We patients need a better treatment.If I don't get a proper post-up treatment with Dr. Hibner,I promise that I will make sure that I get one.
Just to clarify things,Dr. Eric Bautrant came to my Hospital room everyday for five days after my surgery in Aix En Provence,France.And I went almost everyday to see Dr. Bautrant after my release from the hospital for almost two weeks before returning back to the US.
Regards,
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
Ali,
I had botox with Dr.Jordan in Santa Monica. Not a pleasant experience.
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
Dear Ladies and Gentlemen,
Dr. Hibner has confirmed with Pionogal that the decompression of the dorsal Nerve of the Penis/Clitoris is indeed a reality.He himself decompressed the dorsal Nerve of the patient along with Dr. Aszmann from scar tissue in Vienna,Austria.I am enclosing the patients's email to Dr. Azmann which was forwarded to me by Dr. Aszmann himse.This is proboably the missing link in PNE surgery which has eluded PNE surgeons and patients alike for a long time.I would like to thank Dr. Aszmann,Dr. Hibner,Dr. Hollis Potter,Pionogal,Pelvis Stressly for all their efforts and contributions in making this a success.
Dear Mr. Ali!
Below please find the correspondence of the patient that I have operated 10 days ago. He is an anesthesist himself (that is why he is so proficient in his description of symptoms)
Best regards,
OC Aszmann
--
Dear Professor Oskar Aszmann,
I want to thank you so much for all that you have done for me. I was indeed really nervous and with low expectations (about the outcome of the surgery) prior to the surgery. Surgery is after all a serious matter.
Even if I do not recover 100%, already the recovery and progress that I have experienced during the first days now postoperatively, is a pure miracle to me! For the first time since nearly 1.5 years I am nearly entirely painfree. Of course I am a bit bruised in the operation area, but that is easy to endure compared to my long term pain. I no longer have those shooting painful paresthesias from the base of the penis out in my penis when I sit down, I no longer have this dull and aching pain in the perineum and penis after sitting for a while, and I no longer have the "friction" allodynia when clothes move against the affected area. I have an almost normal "proprioception" (if you understand what I mean) or sensory afference from the left side now, preoperatively I had a disturbing numbness feeling from the area. I do not think that the sensorium is already entirely normal on the left side, but I believe that this can improve over the coming months. I have not yet tried if the sexual function is better, but the fact that the pain is almost gone is absolutely fantastic.
I have been really in a bad emotional and mental shape due to this condition, although I have continued to "live on" with my life as usual. But now when I again notice how good life can be, I realize how tough this has been. I had done a promise to myself, that if I by any chance would improve from this illness, I would make some dreams come true: taking my family on a long holiday trip and finally accepting a short term mission with "Médecins sans Frontières" as an anaesthesiologist and pain specialist this autumn. Now I can start planning for this.
Honestly, you really have probably given me my life back! I can keep you updated about my further recovery.
Just a few questions:
1. When can I remove the Steristrip over the scar?
2. I believe that it is good and important to start with stretching and physical exercise (I run and usually do some stretching after the running) quite soon, in order to prevent me from getting stiff in the area? Can I start with physical exercise already now?
3. I think that I will start with sexual activities within some (3-4) weeks, I think it will be natural when I feel that the bruising pain in the area has diminished?
Please send me the bill and information about bank account number, and I will pay you as soon as possible. Even after paying, I will be indebted to you for the rest of my life for what you did for me!! Thanks!
Best regards
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
Ali, you commented about my post "This is most absurd.How can it be the progression of the Pudendal nerve if Dr. Ansell succcessfully decompressed the whole PN nerve.". You have to keep in mind that Dr. Ansell did not necessarily decompress the full pudendal nerve. He did sever the ST and SS ligaments and other than that, I am not sure what all he did. But the important thing is that I still have the same pain as I had 7+ yearsago and 2 surgeries ago. Based on my pain locations (iscial tuberosity and tip of penis) there is a high probability that the problem is caused by something to do with the pudendal nerve. So I seriously doubt that Dr. Ansell "decompressed the entire pudendal nerve". I thought we had found at least the penis pain caus when Dr. Filler's MRN showed massive scar tissue, but removing the scar tissue did not help anything. Back to your statement that "it cannot be progression of the pudendal nerve problem", if the original problem is still there (i.e. my pelvic pains), whatever is causing it could certainly be just getting worse.
Kit Male age 74 Sitting pains started 10/2003. I have had about 14 years of pudendal nerve pain, including 3 surgeries by Ansell, Filler, and Hibner. None did any good. But finally, I discovered the DRG (dorsal root ganglion) neurostimulator. It was implanted on Dec 28, 2017. It has been a miracle to me. My quality of life has improved 95%, and reduced the pain by about 60%. Anyone with Pudendal pain should consider a DRG neurostimulator.
Kit wrote: May your butt not hurt and your sexual organs be only a source of pleasure.
Kit
Ha ha ha! You just made my day! Wonderful wish for all of us!
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
In the end I chose to describe this sensation as "gnawing."
A note: I am hearing a lot of what I will call squabbling on this forum.
None of my business, I suppose.
But, when I first encountered the pain that I learned to associate with this disorder. The thing that enabled me to go on. Was the information that I gleaned from pudendal.info and tipna.
Please don't let the noise get in the way of the information.
Kit,
This is where the dorsal nerve decompression surgery comes into play.This could well solve your problem.I am going to try this non-invasive surgery and see what happens.I am keeping my fingers crossed.
You have two doctors whom can operate on it now.
1)Dr.Oskar Aszmann in Austria.
2)Dr. Michael Hibner in Phoenix at St. Joseph Hospital.
There is nothing to loose att he moment for any of us.
Regards,
Ali
PS Dr. Dellon can also operate but he doesn't take insurance.
Last edited by AliPasha1 on Mon Feb 21, 2011 6:18 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