Health Organization for Pudendal Education

After > 6 years of 3 different pelvic physical pain troubles (PN; a shot, high hamstring muscle tendon has awful untreatable tendinosis; and an ilioinguinal nerve with neuritis in one groin) and after standing for years now, I'm thinking of seeing Andrew Elkwood, MD in NJ. I'm currently suffering physically much more than usual because I'll be moving locally next week from one tiny apartment to another and I've had no helpers for all the sifting, sorting, lifting, bending, etc. All that physical work led to far more PN physical pain (internally on the pelvic midline) and also aggravated the other two physical troubles. There's so much sorting, throwing things out, donating things, etc. that I'm overwhelmed by the ordeal and can't do the physical work. I stopped all this work ~ 5 days ago and haven't done really anything since the suspension of work: I'm too physically miserable. It'll cost me so much for the packers and movers to do all the work and they'll be packing up useless papers, garbage, things I want, things to be donated, stuff to be thrown out, etc., etc. And once I'm in the new housing, the same thing happens all over again but in reverse! Oh, how I HATE moving all my objects/items from A to B.

His clinic told me my studies are too old and have to be re-done. But the clinic person who wrote to me said I could simply meet with him to explain things and I suppose to show those older records. [Elkwood wanted these studies/tests done:
1. MRI lumbar spine
2. MR neurography of pelvis attn to pudendal nerves
3. CT abdomen with valsalva maneuver to rule out occult hernias
4. CT guided blocks of pudendal nerve at alcock's canal with lidocaine, kenalog and 50 units botox
5. Clearance from colorectal surgeon, urology(male)/urogynecology(female) and spine/back surgeon

Only #3 was done a few months ago at the VA and #1 might not be too old for him. My rather-new-to-me young female VA MD refused to order the others. I'm going to tell her that I simply can't be running all over NJ having these tests/studies done when at least #2 could be done locally. [I had #2 done in Nov. 2013 and it showed neuritis in one of the pudendal nerves-- the other one wasn't discussed so it may be healthy.]

Before traveling probably by railroad to NJ, I'll have to brush up on PN matters and look for records. I'll be traveling alone so I wonder how tricky and difficult that's going to be for me.

How is Dr. Elkwood as a PN surgeon? Does he give time for explanations and questions or is there a bad rush through things with little time to ask questions? Is he an empathetic MD? a pleasant one to consult?

That sounds extremely challenging to try to move by yourself. I don't think I would have been able to do it when I was going through PNE.

I haven't seen Dr. Elkwood as a patient but I did speak with him for a phone interview for our website. He was not in a rush, he was thorough in answering all of my questions, and pleasant. I found him to be very knowledgeable but not arrogant. I have not spoken with any of his patients so I don't know what kind of results he is getting with pudendal nerve release surgery.

Violet

Violet M wrote:......

I haven't seen Dr. Elkwood as a patient but I did speak with him for a phone interview for our website. He was not in a rush, he was thorough in answering all of my questions, and pleasant. I found him to be very knowledgeable but not arrogant. I have not spoken with any of his patients so I don't know what kind of results he is getting with pudendal nerve release surgery.

Violet

Thanks Violet.

I've been in email contact with one of his helpers. I asked in a gentle way for info on outcomes, on how long I'd perhaps have to stay in NJ if surgery was done, etc., etc. but was told nothing. That was no surprise to me. This withholding of info and details isn't good for us when there's so much physical hardship in traveling long distance, especially in my case with 3 pelvic physical pain problems.

I agree with you. One thing I appreciated about Dr. Bautrant was that he spoke with me by phone and emailed with me prior to my trip to France. When a physician does that it shows that they have compassion. On the flip side, some of these doctors work their butts off and trying to talk to every patient would be a huge undertaking but it would be nice if their staff was informed to where they could provide useful information. I guess one of the limitations is they can't release info about patients due to HIPPA but it seems like they could give you a general idea of what to expect, especially when you are coming from out-of-state.

Violet

Violet M wrote:I agree with you. ....... I guess one of the limitations is they can't release info about patients due to HIPPA but it seems like they could give you a general idea of what to expect, especially when you are coming from out-of-state.

Violet

You would understand this Violet. Thanks again for the support.

MDs could state things, by themselves in either a phone call or in an email message or have a helper do this, in generalized ways. I'm not seeking names of patients who had this or that outcome. I'd just like to know something like this: Out of 50 MALE patients, X% improved, Y% stayed the same, and Z% reported a worsened condition. I would think that it's not too much to ask about outcomes in this manner.

Maybe I can get some other helper to correspond with me. Maybe the one who's written to me is too worried about saying this and that-- I don't know. I always HATE the incredible power imbalance between MD and patient and this is far worse when one meets a specialist in maybe only 1 meeting! It's just too easy to not understand key things or not have one's questions properly dealt with, or wind up in trouble because of some [bad] plan of action or even no plan to help.

Unfortunately, we have to advocate for ourselves when it comes to this illness. I appreciate the fact that you are gentle and not rude like some patients would be but maybe you could try having a list of top 5 questions and call again, hoping to get a different staff member. Just keep politely asking the question in several different ways until you hopefully get some answers. I completely agree with you that it would sure help the patients if there were better statistics available.

Violet