Health Organization for Pudendal Education

My name is Joanna-I have been suffering with what I have to believe is PNE for close to 5 years now-and misdiagnosed every step of the way until about a month ago. This is my 1st post. I have recently been to a PT for PN and have an in person Dr. appt. w/Nel Gerig, the Co. specialist Nov 4th. The PT said besides the PNE she's also sure of some SI stuff. My big question:
I have a phone appointment with Dr. Renney this coming Tuesday. Can you all offer any relevant, important questions I should ask? I really don't want 2 blow this opportunity.

My pain, the surgeries and fiascos I have been involved are terrible-my last pain doc is being investigated by the state and federal authorities, so dealing with this disorder has been complicated by other stuff. I see my new pain dr Mon so I will inform him of the PN & SI and ask about changing to valium, trying Lyrica (have tried neurontin, gababentin), & possible SI blocks. (ideas glened from this site and TIPNA)
I really am NOT looking @ the surgery. The success rates look dismal, my last surgery left me with more nerve damge than b4-so im a lil gunshy. Just having a real diagnosis, then being able to go from there will help my sanity. There's nothing worse than paying for a major surgery; it kept leaving me broke, less active, and then have a Dr. tell me it's my fault (or in my head) and quit returning calls. I aggressively went after this pain & was literally @ a point of suicide from the pain & burden I felt i was 2 my family. I now have a glimmer of hope.
To the many men on H.O.P.E.-my heart goes out to you...I can not imagine in a million years being in this pain (men being reluctant to go 2 docs) & then unable to work (mens role as primary breadwinner) u R champions in my eyes. So many stories (male n female) have literally ripped my heart out. Thanks beforehand for any help=)
Joanna

Joanna,

Hello there!

If you are not looking for surgery with Dr. Renney, the phone call may not even be needed. Dr. Gerig will be able to answer treatment questions for you.

The PN injections are mostly diagnostic; we haven't heard of any success stories lately from them. Dr. Gerig may suggest you get them done (Centeno Clinic, Dr. Hanson will do them) just to have a firm diagnosis. Are you continuing to see Terri (PT)?

I can try and find my questions for Dr. Hibner and give them to you.

You may not need to ask a lot, besides his opinion on further treatment. Just tell him your story and let the conversation go from there.

all my best,
cari

ysabal96 wrote:I really am NOT looking @ the surgery. The success rates look dismal, my last surgery left me with more nerve damge than b4-so im a lil gunshy. Just having a real diagnosis, then being able to go from there will help my sanity.

The reality is that you won't be getting a diagnosis over the phone this week. I hope you are clear on that. All you will be getting is a chance to talk about your history, what your pain is like, what has or hasn't helped, and what tests you have had to rule out other problems. You will not even get told that you might have PNE. In fact you will get ASKED if you think you have PNE. If you think yes and Dr. Renney agrees, then he will see if you want to come to Houston to get tested to get the diagnosis. Going to Houston is NOT a commitment to have surgery, only to get a diagnosis.

My advice is to have a cheat sheet of your history because your 15 minutes will go fast.

Hi,
perhaps I wasn't clear...I do not want to waste my phone time and "skip/not ask" a question I should ask, perhaps about "radio frequency ablation, alcocks canal, new meds, etc". I know I won't get a diagnosis over the phone-that would be a very rash dr (There was a very detailed info page that came along with the commitment for the phone call & I wasn't guaranteed the phone call until he read through my history, so he must believe there's a PN possibility-the PT was sure of it). Honestly, if it isn't PN, there isn't a whole lot left for docs to pinpoint or operate on.
I would like some concrete testing, the PT sent her findings onto the CO. Dr. Anyway, I guess I was asking more along the lines of what tests I should be asking for, the questions above.
And yes Cari, I am still seeing Terri. My last PT session left my Tummy and way low back, almost near my bum, achin. Did u ever have that? ugh.
BTW, I called Centeno again for the injection by Hanson...I think they are still wanting to give me PRP 1st. (another battle)

Thnaks 2 u both=)

ysabal96 wrote:Hi,
perhaps I wasn't clear...I do not want to waste my phone time and "skip/not ask" a question I should ask, perhaps about "radio frequency ablation, alcocks canal, new meds, etc".

Until you're diagnosed, you won't be getting any answers on treatments like that. The whole point of the call is for you to do the telling, not so much the asking. There's not really any point in going through stuff like that until you're diagnosed, ie in person. Hope this makes it clear. Just have your list of every point you have about your history and treatments and results and you should be ready for the call.

Good luck!

Welcome to the forum, Joanna. Just a few brainstorming ideas here:

If I were in your shoes I think 2 of the main things I would want to find out from a phone conversation with Dr. Renney is:

1. Does he agree that you are on the right track with the PNE diagnosis?
and
2. What steps does he recommend you take and what would the Houston team be able to offer you as far as treatment goes?

For the first question you need to have a concise list of your symptoms, how long you had them, what precipitated them, what makes them better or worse, and what you've tried so far.

For the second this is your opportunity to shop for a team of doctors so you may want to ask things like what their success rate statistics are, what type of follow-up do they do, what treatments are they recommending for suspected cases of PNE, what complications could you expect from those treatments, what treatments do they see not working, how do you get insurance to cover (what cpt codes to use), what tests should you have before coming to them, etc.?

Good luck!

Violet

Hi Joanna,
Sorry to hear about your long battle and problems along the way, I hope you find that you are on the right track now, it does sound like it. If Dr Renney already has a history and a PT's report(not sure about the last one) as you say he must think a PN diagnosis could be correct.
As Celeste said the history and symptoms are so important, try and think if there is anything you feel is a problem that has been left out of the history already sent. Maybe read through the home pages (you probably have already) and tick the list of symptoms there that you have, to make sure you have the whole PN related symptoms you suffer from in front of you.
I nodded when I read Violets suggestions, she seems to have covered it in a nutshell.
Maybe don't go over old ground (stuff he already has) unless he specifically asks of course and try and record what he says. maybe put it on speaker phone and have a friend write what he says although he may send you a report?
Oh! and then come back and tell us all.

Good luck.
Helen

Hello Joanna,

I had a phone conversation with Dr Renney at the beginning of last year. He obviously had my information that he had requested in front of him and he began the conversation by saying...."So you've been having this for a couple of years...." So I did not have to go over my symptoms much, just repeat very briefly. I had written a list of things to be sure to ask. For example, his directions said you had to be seen by a urologist, neurologist and gyn before coming there and I had not seen a urologist. He told me this was not necessary as I was not having problems in that department.

Dr Renney goes over what to expect from your first diagnostic visit there, that you will see their neurologist for a PNMLT test (not sure if they still do this) and that you will see a Women's Health PT, to find out if you have any muscular issues and check you for SIJD, and you will have a CT guided block, done by a neuroradiologist at the hospital in Sugarland. He will ask you if you have any medical questions he can answer and after you have finished he then gives you back to his assistant, Shae, who will tell you about the paperwork you need to fill in. Once they receive all of this they will make an appt for you, if you wish to go there for diagnosis. I personally felt very confident with getting my diagnosis there.

He was very easy to talk to. I do recommend having a list though to be sure you get your questions answered, but if you forget something, he is very good about answering through his email system, which is also free of charge.

Best wishes, Jeanie