Health Organization for Pudendal Education

Karyn wrote: I'm going to ask if Dr. Conway can contact Dr. Shobeiri either by phone or email to discuss my case. I'd also like to find out if it's possible to have a phone consult with Dr. Shobeiri before January rolls around. Hopefully, this will increase my chances of the scheduled surgery!

Karyn,

I think this is a great idea. Your insurance may even pay for a phone consult and since you've had so much testing already, you deserve to talk with him BEFORE flying out there and not knowing for sure if he'll take you into the OR! I know doctors' time is precious, but even if us patients have to pay for a phone consult, we deserve it and it could cause a lot less hassle.

Warmly,
A's Mommy

Well, so much for great ideas. Just heard back from his office, and I was informed that Dr. Shobeiri does NOT speak with patients over the phone. Not even out of state ones WITH an upcoming appointment. Very upsetting!
Dr. Conway is out of the office this week but I left a message. I remember him telling me he was planning on attending some pelvic pain convention/seminar this month.

You know, that is just NOT RIGHT!!! There are so few PNE doctors in this country and they just need to talk with us!!! I know they are busy and all, but we are paying good money flying all over the country and it's not our fault that we live in podunk America where there aren't any PNE specialists!!!! ARGGGGGGGGGH!!! I'd pay him $500 cash to talk to him.

Why, why why... we need to start a PNE network like the IC network. Getting the word out is going to make the difference. I know these docs have lives too, but if they set aside one afternoon for PNE phone consults, they could still bill for that and then save a lot of us from travelling or give us the gumption to go out there and have the surgery.

Praying for a miracle for you....

It's only going to get worse when we have socialized health care... trust me on this.... doctors will become INFURIATED at the system. And then it trickles down to the patients.


Good luck, America.

Growlingly, (just made a word up)

A's Mommy

Thanks, A's Mommy. And I like your new word "growlingly"! Mind if I use it some times? Like in January, if he sends me packing!

Karyn wrote: Lauren - I will definitely take you up on your offer to educate me about OK and OU Medical Center. What's the weather like there in January???

Typically, highs in the forties. Last January, we had two really bad ice storms. You never know with Oklahoma!

He really needs to come up with a protocol for travelers. As appealing as it is from a marketing standpoint to offer a one-stop surgical trip, there cannot be the possibility of deciding you shouldn't have it (well, unless you show up too sick for surgery that day--flu, other infection, other serious medical stuff).

But I doubt this was addressed in Antolak's seminar.

You're right, Celeste and I really don't know WHAT to think of this. I mean, when I first called a few weeks ago, I (thought) I made it clear that I was calling for a surgical appointment, based on another doctors recommendation. Not for a second opinion, or a consult. But this doesn't bother me nearly as much as being denied a phone consult. I really do understand how someone who's not entrenched in the PNE field would approach surgery cautiously with someone they've never met. I feel the same way. I'd like to check HIM out, too, before anything major were to happen. Bottom line is; it won't be the end of the world if he doesn't perform the surgery. Futhermore, we'll all have a new learning experience, one way or the other!
Warmest regards,
Karyn

Well you would be what, surgery #5? And most of the others were local ladies who had had several appointments with him? So I guess there is a lot to learn.

I think Houston was always criticized for making you take the time to have the free phone consult for screening and then three trips total to be diagnosed and treated, but at least you can say you've covered all the bases and know what to expect when you get there. I had no surprises. But then, the program had been going for a couple of years by the time I came through.

Hi Everyone....Karyn, thank you so much for all your comments (you didn't scare me off , I really appreciate everything you wrote). I am excited for you and the progress you made in speaking to both Dr. Conway and Dr. Shobeiri's offices and all the coordination you've done to get the care and follow-up you need. I wish you all the best!! I met with Dr. Conway in January of this year for the EMG testing and totally agree that he and his entire staff are incredibly warm and compassionate people and experts in PN, and I didn't mean to disparage him At All. I have a lot of respect for him and his dedication to helping PN patients....I do understand that his surgery didn't need to be 'fixed' and that was the wrong word to use. I'm still very torn as to what to do and am only two weeks away from surgery. There is a chance that some of the mesh that was put in during my first surgery (which wasn't performed by any of the doctors mentioned on this site) may be impinging on the nerve and it may not be compressed at all. Dr. Conway wants to do two procedures: first, to see if the mesh is indeed hitting the nerve and causing the pain and two, to do the decompression. Since the first procedure will be done vaginally, he was going to do the TIR approach. Now I'm thinking of just having him cut some of the mesh away and see how that goes after a few months. If there is no relief after that, I could consider doing the decompression the TG way with another doctor. What a stressful and confusing time! But being able to share information with other women going through the same thing really helps.

Hi Chrisdag,
I believe the other doctor would be Dr. Hibner because he is the only one in the US who does redos of both TG and TIR approaches of all doctors.

All the best,
Ali