UNBELIEVABLE!!!

[Karyn]

Good luck, AM!
Is this medical proffessional a physician or a surgeon?

[Celeste]

What you should do is take him with you to Phoenix for your second surgery. Maybe he can even join in on it and use your surgery to get trained.

[pianogal]

What you should do is take him with you to Phoenix for your second surgery. Maybe he can even join in on it and use your surgery to get trained.

Brilliant. Why not?

[Celeste]

What you should do is take him with you to Phoenix for your second surgery. Maybe he can even join in on it and use your surgery to get trained.

Brilliant. Why not?

Exactly. It's not like he's a family member or something.

[A's Mommy]

I wish it were that easy to get doctors trained in the PNE surgery. I'd be blasting it to every doctor I knew, surgeon or not!!! Unfortunately, I think there are guidelines here in the US. Perhaps with fellowships, etc. Maybe one has to be a gynecologist or a neurosurgeon to do it. Maybe they have to move somewhere and study with one of the physicians.. I don't know. Does anyone know how Shobeiri and Conway trained with Antolak? Was it in just a small amount of time that they went and observed or did surgeries with Antolak's assistance, or what? For some reason I think the US laws for medical practice are more stringent than that. Like, for example, one has to get a license to practice medicine in the state where they are training... I'm not sure, though. It could be different for every state. Then, I know you have to get the procedure approved by the hospital. I think that's what Dr. Hibner's in the process of doing with the dorsal surgery he has learned from Aszmann, but I could be wrong.

When I had my PNE surgery, I talked to EVERY one of Hibner's assisting physicians. I was like "you're learning this, right?" and they were like, "no, it's ugh, uh, uh, a very specialized surgery." I'm like COME ON........!!! Maybe Castellanos has changed his mind by now. Hope so. He was my assistant.

[Celeste]

I wish it were that easy to get doctors trained in the PNE surgery. I'd be blasting it to every doctor I knew, surgeon or not!!! Unfortunately, I think there are guidelines here in the US. Perhaps with fellowships, etc. Maybe one has to be a gynecologist or a neurosurgeon to do it. Maybe they have to move somewhere and study with one of the physicians.. I don't know. Does anyone know how Shobeiri and Conway trained with Antolak? Was it in just a small amount of time that they went and observed or did surgeries with Antolak's assistance, or what? For some reason I think the US laws for medical practice are more stringent than that. Like, for example, one has to get a license to practice medicine in the state where they are training... I'm not sure, though. It could be different for every state. Then, I know you have to get the procedure approved by the hospital. I think that's what Dr. Hibner's in the process of doing with the dorsal surgery he has learned from Aszmann, but I could be wrong.

Antolak teaches a seminar. I think it's been taken up by the urogyno community, but chances are that people in other fields (dermatology, etc.) wouldn't bother with it. Now we have plastic surgeons getting into it. I'm not sure there's any prohibition on who CAN do what; 20/20 always has specials on all kinds of doctors who take a weekend seminar on plastic surgery, liposuction etc. and start doing it because it's not covered by insurance and therefore lucrative since patients will pay out of pocket for it. Of course the results can be disastrous if they get in over their heads and that makes for the story.

Maybe you can be the travel concierge when your contact hangs out his shingle.

[drds89]

For as long as you've been around on the forums, you've NEVER heard of ANYONE apply for a handicapped permit?!?!

No, I never have, or I wouldn't have said so. Two people have spoken up, one had it only pre-op. So, now I'm not even sure it's a common practice even in this population. Obviously I'd heard of people I've known get them for other reasons, but never PNE.

OK, you can officially add me to the HC 'list.' I am still lying in the back of our minivan / not able to sit or drive / walking is very limited. It is 5 minutes to my office and church (10 to 15 min standing, 15 min down, etc). My wife asked my doctor for a HC sticker for my appointments with my doctors. I don't 'do errands' anymore and she doesn't use it except when I am in the car.

The link below is the form for VA where I live/practice, it may take some to load. There are certainly 'check boxes' that would allow the PNE diagnosis, and believe me, I have had patients ask me for handicap stickers for reasons that would make your head spin. PN/PNE is a no-brainer for me as a physician to grant a HC sticker.

http://www.dmv.state.va.us/webdoc/pdf/med10.pdf

I've always felt what a sad commentary it is that we even have to have laws for Handicap parking spaces /stickers (so many of us Americans are 'me-first').

I was surprised by Celeste's initial post and followup; I would have thought the opposite from the degree of disability posters here and TIPNA often relate.

Has there been a poll? Has there been a dedicated / titled thread with 'Handicap stickers' here or TIPNA? A randomized, controlled study?
Maybe just another area of life where PNE sufferers have to be ashamed, and so don't talk about it? Or maybe we're just so much out of the game of life and never even leave the house, why bother getting a sticker anyway?

So I must ask Celeste, do you now think the diagnosis of PN/PNE may justify a handicap sticker (temporary or permanent),for those with severe symptoms, or prolonged post-op recovery?

I most respectfully think your conclusion is too hastily made and unscientific (see bold above), but you are certainly entitled to your opinion, just as long as you don't come across as authoritative -- when it is your mere opinion or anecdotal observations. It really doesn't matter how long you have been around the boards.

AM, I'm sorry you got that unjustified note. Maybe heavenly sandpaper, though. Bless those who curse you (impossible in and of ourselves). Our grocery stores have 2 to 3 front rown spaces for customers w/ small children in addition to HC spaces.

[Celeste]

I was surprised by Celeste's initial post and followup; I would have thought the opposite from the degree of disability posters here and TIPNA often relate.

So I must ask Celeste, do you now think the diagnosis of PN/PNE may justify a handicap sticker (temporary or permanent),for those with severe symptoms, or prolonged post-op recovery?

I most respectfully think your conclusion is too hastily made and unscientific (see bold above), but you are certainly entitled to your opinion, just as long as you don't come across as authoritative -- when it is your mere opinion or anecdotal observations. It really doesn't matter how long you have been around the boards.

Yes, I'm aware that your opinion is that it doesn't matter how long I've been around the boards, but hopefully even you could admit that in those 6.5 years I've had an opportunity to talk to an awful lot of people. This was the first time I'd heard of handicapped stickers for PNE. Not really sure why it's such a crime to say so, but I don't want to interfere with your belief system so I'll have to let it go at that. I feel secure in echoing your remarks that whatever your opinion, it's fine as long as you don't come across as authoritative.

Looks to me now like the stickers are not all that difficult to get if you want one, though, so maybe this will be the new trend.

[LottaNerve]

Count me in on the handicap permit crowd! I have had my placard for 3 years, and originally got it at the recommendation of my urologist, and it is a lifesaver. Like A's Mommy, I am unable to walk very far (and I don't even have to worry about lifting an active two-year old up and down from a cart!) I definitely need the placard; I can't even drive now, and my caretaker helps me out of the car and into the store, or dr's office, or wherever we are going. By the time I have walked a few aisles in the store my legs are "done" -- I have had to shuffle back to the car hoping I would make it, holding on to my caregiver's arm.

AM, I think you are very brave and noble, doing your part, grocery shopping for your family when your husband is working such long hours. Here is a big hug from me and the many, many compassionate people in your PNE family. We "feel" you girl.

------>>> as far as this thread turning into a "poll" on whether or not PNE patients should have handicap permits -----------Shall we have a show of hands of all those with handicap placards?
(JUST KIDDING) I'm trying to add a little levity to the situation ....

- Sharon

[Violet M]

I will email the lady in charge of the CME firm I worked for today.

As far as funding, usually some doctors are registered with "speaker's bureaus". Back when I worked for CME, docs were paid money by the drug companies to speak, say, if they were doing a talk on DVT Prophylaxis (Deep Vein Thrombosis Prophylaxis), and a drug company had an interest because their company made warfarin or heparin or something like some blood thinner that would help.

Usually, these drug companies would pay all expenses plus an honorarium anywhere from $250-$2,000 (at least what I saw when I worked there in 2005-2006). I guess what we could try to do first is:

1. Contact the physicians and see if they would be willing to speak.
2. Ask the physicians if they are currently on any speaker's bureaus of any companies (Sanofi-Aventis, Merck, whomever, maybe even the company that makes the neurawrap!) When a medical company can get their product promoted in a surgery/procedure, whatever, they are more often ready to open up the checkbook.
3. If #2 is a no-go, we as the patients can put together the PowerPoint presentation. We can assign certain portions (video interviews, scholarly articles, statistics, etc.) to certain volunteers willing to help, and then go from there.
4. If a PNE physician is not willing to do this and doesn't have the time to speak on our behalf, I am working on something else. I may have a physician who is willing to at least take the PNE message to my local area. Maybe if the fire spreads, the presentation can be passed along to either the IPPS board and they can take control of it, something like that.

Any more thoughts???

Warm regards,

AM

Thanks for the list AM. Got your e-mail -- we can brainstorm some more.