Health Organization for Pudendal Education

Yoland, thanks for sharing your experience with Dr. Dellon as I am sure it was quite difficult for you to do. I am sorry your experience was not better but as you said you were praying for a clear sign and you felt like you got it. My experience was not like that with him. They were quite pushy about surgery and I told him and the scheduling secretary I would talk with Dr. Howard first and would need approval from my insurance company. I have not had surgery with him and I chosen other surgeons and other surgeries. I do know he does not believe in Reflexive Sympathetic Dystrophy and called it Really Stupid Diagnosis. I did not agree with his statement on that but I was ok with that. I never have a problem disagreeing with a doctor.

Yoland prayers are sent to help guide you in your next step.

Yoland, that time we talked on the phone I just felt like you were just a really together person, and I am so sorry that this horrid experience happened to you. You did not deserve this. I for one am really grateful that you shared this account for others' sake, even though I'm sure it was very difficult to revisit it. (((((Hugs))))) to you, my friend.

Yoland - OMG! I'm sorry you were treated so very badly! Patient experience with Dr. Dellon appears to be highly variable. Not so much in terms of surgical results, but their personal interactions with him.

Celeste wrote:You did not deserve this. I for one am really grateful that you shared this account for others' sake, even though I'm sure it was very difficult to revisit it. (((((Hugs)))))

Me, too, Yoland!!!

Violet M wrote:Karyn, it was my understanding that Dr. Conway is one of the few surgeons who does follow-up so that's too bad he is not in your case.

Thank you for allowing me the opportunity to clarify, Violet! Dr. Conway is outstanding when it comes to returning phone calls. Especially for patients he's recently operated on.
Follow up is a bit different. Understandably, follow up with travelling patients is difficult. He likes to see patients 1 - 2 weeks after surgery, before they go back to where ever it is they came from. He will respond via telephone if a patient calls him with a complaint or question. I am not a travelling patient. I was scheduled to see him 2 weeks after the surgery and then again in 4 weeks. At my 6 week appointment, I asked when I should schedule my next follow up. To my surprise, he told me I didn't need to schedule another appointment. I kinda sputtered and replied, "Well, I'm on diability from work. They're going to need medical updates on the paperwork you filled out". He then directed me to give him a call in a couple of months and we could do it over the phone. Needless to say, I wasn't very comfortable with that. I called his office the next morning and scheduled myself another appointment. At my last appointment (August), he suggested I come back to see him some time next year.

Violet M wrote: Was he unaware of his initial surgery results when he traveled to two other docs to learn a different approach?

That's what he said. To the best of my knowledge, he's also unaware of his TG approach outcomes, too. He's stated to me (on numerous occations) and a couple of other patients I've gone to apointments with that he doesn't have the time or resources (financial, personnel) to track surgical results.

Oct. 31, 2011 - Dr. Dellon - This was supposed to be my surgery date for my last pelvic nerve surgery -- to release the posterior cutaneous femoral nerve and inferior cluneal nerves. However, on Oct. 28, two nerve blocks were given near the ischial tuberosity where I felt pain. This was to make sure I was a candidate for surgery to release the posterior cutaneous femoral nerve and inferior cluneal nerves. To our surprise - and my dismay - neither block gave any relief or numbed me. I had one more block in the left vulva area where I was still feeling intense pain -- this block also failed to numb me or provide relief. At this point it was decided I was not a candidate for surgery. Dr. Dellon suggested that I was having central nervous system pain and advised that I seek help with sacral stimulation.

But ..... CNS in these very specific areas? Really?

yoland wrote:Dr Dellon does not believe in central sensitization, and if a surgery isn't better in 4 months it was a failure.His words.

nyt wrote:I do know he does not believe in Reflexive Sympathetic Dystrophy and called it Really Stupid Diagnosis.

I'm confused. Does he just go with what's convenient at the time?

LottaNerve wrote: I am the healthiest sick person my doctors have ever seen. Except that the word “spastic” kept coming up. Bladder spasms. Bowel spasms. Everywhere spasms. So it is making sense to me that the problem is my CNS and brain coordination -- my nerves aren’t working right

I agree your nerves aren't "working right". I don't agree it's for no reason, though. Sharon, have you had BOTH sides of the PN operated on? I know you mentioned the dorsal approach with Dellon in regards to the PN but was it the same side Hibner worked on? You also mention the perineal nerves. Nothing about your rectal branch or any of the other nerves which innervate the genital region. Was the injection you got in the vulva area guided, too?

Hi,

I would like to make one point.Dr. Dellon should have done a redo PNE surgery of Lotta Nerve to prove his criticism of Dr. Hibner that the neurowrap and repairing the Sacrotuberous ligament aren't worth it.The pictures which Lotta nerve is showing are neuwarps of the nerves of the respective arm/legs and not the pudendal nerve itself.

Her Perineal nerve pain can be just referred pain from the Pudendal nerve itself.

Science needs proof and unfortunately Dr. Dellon didn't provide any evidence in this case.

Regards,
Ali

AliPasha1 wrote:The pictures which Lotta nerve are showing are neuwarps of the arm/legs and not the pudendal nerve.

Yes, that's true, Ali. I did quite a bit of reading regarding the neurawrap and everything I read claimed this collagen based product does in fact dissolve in a short period of time. However, it IS a manufactured product and some times defective materials happen.

AliPasha1 wrote:Dr. Dellon should have done a redo PNE surgery of Lotta Nerve to prove his criticism of Dr. Hibner

I'm not sure any patient needs to be used like that, especially when they're paying out of pocket.

She is still in pain and her issue hasn't been resolved and Dr. Dellon failed completely.I meant not for experimental purposes but to get her well because he could have killed two birds with one stone.

Regardless,the results from dorsal nerve decompression surgery/PNE surgery are disappointing.

Regards,
Ali

All this thread is rather grimm reading. I feel sorry for all you suffering more after surgeries.
It seems that all this optimism about new surgeries is slowly fading away. I thought that the old
devastating TG approach might be replaced by something more smooth and safer, but it seems
not to be true.
Operations are a very tough decisions. there is always hope, that the worsening after surgery will
not be permanent and that in the long run you reach at least your baseline pain.At least.
Both my urologists (who are not experts in PNE, but good professionals with many years of experiences)
told me that if there is not a MAJOR clear cut proof that nerve is pressed by e.g. fibrotic changes from
injury, previous operation etc., there is better option to avoid surgery.
I dont know, waiting for next consultation with prof. Aszmann, but.....
M.

Hey guys,

I have read the thread, and just like everyone else, i do not have exact answers.... and i feel horrible for he pain and suffering we have all been through with surgery, injections, etc....its terrible! I think ALI, has done the most research and is quite knowledgable with the PNE issues....surgeons, and is a benefit to the forum because without ALI we would not have found the surgeons throughout the country to assist us, and we would not have found dr potter for her mris. So i say to ALI, Thank you for being diligent and thanks for your help research, and assistance. If not for ALI, we would all be stuck going to dr filler for his mrn....i believe potter is the best for radiology, and HSS is the best hospital in this country for research.

I urge everyone who has been told that the pain is from the CNS, like Sharon, to talk with their doctors about a treatment called, low dose naltrexone. It was a medication used to get people off their addiction from smoking...but they used 50mg. With chronic pain, they only use 3.0 mg to 4.5. It acts like a reuptake inhibitor...it inhibits endorphins from being reabsorbed back into the prior nerve cell. It has helped many with fibro/chronic pain/CFS/Depression. Also, please note that many researchers have implicated the immune system in chronic pain and depression...they believe that an overactive immune system increases cytokines causing either CNS inflammation or increased hypersensitivity to the pain receptors of the nervous system.....this can happen through trauma, stress, etc...please know, none of us are too blame, its how the body functions sometimes under certain extreme circumstances...all of us have suffered, and no one needs to be reminded of prior traumas, stressful life events. But when we suffer these events, the system gets modulated in such a way as i stated above. Also, Dellon is completely wrong about RSD, or as it is known now, complex regional pain syndrome....its almost condescending to say that RSD stands for really stupid diagnosis...the sympathetic chain continues to fire into joints, or limbs and causes blood to leave the area, and eventually the limb/joint is stiff and begins to die...some doctors believe that it is from the CNS and others believe its local, and can be treated by treating the joint/limb with strengthening the connective tissue, ligaments and tendons.

Also, for people with SIJD or piriformis syndrome, please check out prolotherapy/platelet rich plasma and stem cell injections...all can help this problem and it is non-surgical. do not let doctors charge you outrageous amounts for prolo it is not expensive, should not be more than 200 per treatment. PRP and stem cell injections are much more expensive, around 900 and 4000 respectively. All can strengthen connective tissue and i believe that we all have connective tissue weakness to some degree. I have had PRP and prolo. I have prolo more than 4 times to my feet, head, low back, hips and neck. I was NEVER made worse in any way, but it hurts initially with the shots and for about a week after, the results can be seen in 4 to 8 weeks, its biological healing, so it takes time, but it helped me last winter into the spring, before i had hip surgery for a labral tear. I was not able to run, exercise, lift weights with my legs, i had pain with sitting; muscle spasms, etc. After prolo in oct 2010 to the low back and hip ligaments/tendons and then again in jan 2011 to the same areas....i started to feel better by mid-late march 2011. It is not a cure, but i was sitting without a cushion, and reduced spasms, less pain, i was able to have sex without pain most times...and again its non-surgical. Its not a replacement for a trapped nerve, but please consider it, because surgery is rough, it should be tried prior to surgery if possible. I have never taken LDN but was given it, and may try it soon. If i do, i will report my experiences.

I wish you all well, good luck, and most of all, a pain free life, free of pudendal problems.

Grerichman, if you try LDN I would be very interested in your experience. From other forums I participate in the results have been quite mixed with some noticing differences and others no difference.