Michigan or Ohio Folks

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Grace
Posts: 56
Joined: Wed May 08, 2013 4:18 am

Michigan or Ohio Folks

Post by Grace »

I live in West Michigan and have doctors who are not knowledgeable or interested in PN/PNE. Lots of lovely people, but I need someone who has broader knowledge or is able to invest time to help find appropriate care for me.

*I'm also including Ohio because I am a natural born buckeye and probably can arrange a visit more easily than in any other state.

I *really* need support. I don't know what to do next and my docs are just steady prescribing away.

Any Michigan/Ohio contacts--patients or practicianers, would be appreciated. I'd love to have some conversation. Post or PM. Thank you!!
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
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Violet M
Posts: 7183
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Michigan or Ohio Folks

Post by Violet M »

Grace, there is a gal who has been sending me info about Dr. Ken Peters in West Michigan and successful neurostimulator implants. She is doing great after having an implant. Here is a link you might be interested in:

http://www.beaumont.edu/destination-medicine-times-five

Dr. Peters has a lot of experience and has published a lot.

I've known several people from Ohio and really haven't heard much good about the Cleveland clinic -- or other docs in Ohio when it comes to PN. I'm not saying there aren't any good ones -- I just don't know of any.

You may not be ready to go the neurostimulation route yet -- even though this is not typical sacral neurostim. I know it appeals to some people who really don't want to go the PNE surgery route. Personally, I wanted to figure out a diagnosis and try to fix the problem before going the neurostimulation route but this guy does sound very knowledgeable and may be able to help you with a diagnosis and point you in the right direction. It's something to keep on your list of options anyway.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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