I have made an appointment to see Dr. Andrew Goldstein in Washington, DC in late April. When I told the NP who manages my pain meds that this morning, he was encouraging and said there is another man who is known in the (small) circle of people who treat pelvic pain competently - one in the Chicago area (might decrease travel cost, as I could drive there instead of flying). He's tracking down the name for me, but doesn't have it yet. He thought it was "Fong" or something like that. Anyone happen to know?
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12 comments:
Kate,
Never heard of the other guy, being you are in MSP, you can fly out via some of the discount carriers (air tran or frontier) to DC and do it all in a one day trip. At least that is what my does. That way it is ~$200-$300, sometimes less if you catch a good deal and you don't need to get a hotel or car as you can get to his office via the subway.
Kate,
Have you seen any of the PN specialists? There is a list on both of these sites: www.pudendalhope.org and www.tipna.org. These sites are full of information for pudendal neuralgia (PN) or pudendal nerve entrapment (PNE). Some people have been helped with injections alone, others go on to have PNE surgery, which frees the pudendal nerve.
I have PNE and enjoy reading you blog very much! Thanks!
Do not see Andrew Goldstein! I did, and he is a wolf in sheep's clothing. He snapped at me for asking about treatment options not suggested by him. Also, his fees are higher than the average specialist's. There are other docs out there. I don't know about anyone in Chicago, but do know of various specialists all over the U.S.
I'm considering a Dr. Irwin Goldstein in San Diego in CA. He has a good rep. I had a phone consult with him late last year, and he sounded informative and honest. Much better choice than the other Goldstein. Andrew Golddigger (my name for him) has let a lot of sufferers down. Please stay away from him.
I recommend Dr. Richard Marvel. He's in Baltimore, MD, and has worked closely with Dr. James Campbell who's founded the American Pain Foundation and authored several books on pain. Dr. Campbell operated on me for PNE and I was amazed at his kindness, listening skills and humbleness. Dr. Campbell is now retired, but has been sharing his knowledge with Dr. Marvel. I've recommended Dr. Marvel to other people and they've all been very pleased with his expertise and polite bedside manner.
Here's Dr. Marvel's website.
http://md-baltimore.doctors.at/dr/richard-marvel-drrichardpaulmarvelmd
Dr. Deborah Coady in New York City- see www.sohoobgyn.com
Kate,
Did you ever find the name of the Dr in Chicago? My wife has been going to a PT in Burnsville that is really good, who recommended a doc at the UofM, and i would have to say we are not very impressed. I thought I read somewhere in your blog that you had gone to the UofM, if I'm remembering correctly who did you see? Lastly, one of your readers suggested i should start my own blog to give the male perspective on these pelvic pain issues, and I would appreciate if you could add it to your "Other Good Places To Go"
Thanks,
Husband
http://sadhappyplace.blogspot.com/
There are mainstream differentials for pelvic pain. Try this in Google:
"groin pain" "differential" inguinal infection stone -pudendal -PNE
It reveals there are many long-recognized -- and treatable -- causes for pelvic pain, among them infections, inguinal hernias, kidney stones, anal fissures and many more -- and none of them are "pudendal." Also consider inguinal hernias: www.nytimes.com/2011/05/17/health/17brody.html
Pudendal nerve entrapment ("PNE") is a myth. The European Association of Urology, in its "Guidelines On Chronic Pelvic Pain," states:
"proof of the [PNE] diagnosis resting on relief of pain
following decompression of the nerve in Alcock's canal is
rarely achieved."
In other words, if PNE was real, the surgery to fix it should work. But it doesn't work.
Dr. Robert J. Spinner did PNE surgery at Mayo Clinic under the direction of Dr. Stanley Antolak. The surgeries failed -- failed horribly -- and Dr. Antolak was fired as a result. Dr. Spinner, who remained at Mayo Clinic, said:
"I have... performed surgical pudendal nerve dissection as
well as placed electrodes on the nerve to alleviate pain
syndromes. My experience is limited and without much success.
...this procedure should probably only be done under
a scientific protocol, approved by a human subjects
institutional review board. I am not at present referring
patients for these surgical procedures."
Mayo Clinic found PNE decompression surgery does not work, and stopped performing it.
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