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Houston Trip Report - No PNE diagnosis

Posted Jul 31 2009 11:47am
Husband and I made it back from Houston, alive, still married, and Husband didn't drown after his swim in the pool.  I do not have a pudendal nerve entrapment from what it looks like so far. So that is great news.  I don't know if the doctors we saw knew what they were doing and it's just a developing area of medicine or if they were complete and utter quacks.  Here's the trip report - and again, I give these Doctors names for the sake of helping others who are searching for information regarding this very rare nerve problem of which VERY few doctors in the US treat:

Day 1: Meeting with Dr. Renney who didn't want to see any records other than my CT and Pelvic MRI.  He took a Pelvic X-Ray.  We briefly discussed my history though I'd call it more of a cross-examination of the answers that I gave during our 15 minute phone consultation. There's a big difference between lacking in bedside manner and a point where you feel like you're just not in good hands.  His personality crosses into the latter.  The takeaway - my symptoms fall into the questionable category -- basically, I'm not textbook.  I knew that going in.  The big surprise - leaving Houston no doctor would tell me whether or not I had a PNE diagnosis.  I would have to come to that conclusion on my own based on the testing they did, the history I discussed with him and the results of the nerve block.  Sounds like limiting liability to me and basically the weirdest medical statement I have ever heard come from a doctor's mouth.  

Next appointment will live on in my nightmares.  Saw Dr. Popeney, neurologist but a D.O., not an M.D., for the PNMLT and other electrophysiologic testing.  I must question anyone who goes into this particular line of gruesome testing and lacks any bedside manner - it's one thing to do it and believe you are helping to diagnose those in pain but it's another to do it when the results are essentially meaningless since the nerve block is really all that matters diagnostically and 50% of people with PNE have normal PNMLT testing.

A "Cuban Doctor" who barely spoke English took Husband and I into the room where these torture procedures were going to be done and suddenly I felt like I was in 1950s Cuba (except we're across the street from Old Navy).  No major medical center in sight.  This is what people desperate for a diagnosis do.  I brought myself to Houston to do this - this team is supposed to be top notch.  I look around this room and top notch is not what I am seeing.  I'm trying to get this "Cuban Doctor" to tell me if the real Doctor is going to come and meet my husband and explain to us what is going to happen in here.  He tells my husband to stay.  He then tells me to put on the paper gown, cover myself up with the paper sheet and get on the end of the table "like I'm about to deliver a baby."  This has me very upset now.  At that point I'm on the verge of a meltdown and I tell my husband to just leave or I'm going to start to cry.  

The PNMLT was pretty bad it measured the speed of the nerve conduction.  The "Cuban Doctor" was standing at the 1950s machine happily running the electrical current (not a single "doing ok?" from either of them) while the doctor is calling out "another 10!" "another 20!"  The whole thing was surreal.  That's the only test I'd read about.  Well, ladies, it gets worse.  Way worse.  In the other test, let's just say it involved needles in places you don't want them, a clamp in another place you don't want it, and electrical shocks.  The "Cuban Doctor" got to do about 20 more electrical shocks.   You have to hold yourself down onto the table.  Pure torture.  And complete heartlessness from those in the room.  Then some temperature testing similar to what I have had done before - abnormal.  They tested a new spot in Houston though - near the Pudendal nerve - that was the only abnormal result of the day.  

Interestingly enough, no blood pressure check beforehand, no female nurse present in the room.  I don't recall even signing a consent form.  That's certainly not the way I've seen medicine practiced the last 8 months.  We go to get the results and the Doctor essentially says your results were normal for the PNMLT but they are about half the time and people still have PNE.  So, thanks for making me your guinea pig!  

Day 2: Meeting with a physical therapist.  Her first question - "so what does Dr. Renney want me to do with you?"  How the hell am I supposed to know?  What follows is absurd, comical and yet another place I dropped off some dignity in Houston.  The highlights: I practiced pooping her latex finger out.  Yes, you read that correctly.  I've been constipated for about 2 weeks because I am a walking pharmaceutical plant and I guess she thought teaching me how to poop would somehow change that?  It was horrifying.  I will not go into any more detail than that.  And we finished the appointment with the conclusion that my hamstrings are tight - that information is about as useful to me as her telling me that my roots are looking a little dark.  No shit my hamstrings are tight.  Did I need to fly to Houston for that?  Why don't you actually check out my pelvic region and you'll find that every single muscle there is tight due to pain.  And then the real kicker - on the way out the door she tells me to do Kegels exercises.  This is specifically what you are NOT supposed to do if you have a pudendal nerve problem or any other nerve problem in your pelvis which leads to shortened, tightened pelvic floor muscles.  At that point I had another appointment to get to so I just said ok thanks I'll do that.  I couldn't even believe what I was hearing! She didn't even feel inside my pelvic floor or she would have known that she just gave me the exact opposite advice of what I should be doing.  

In 14 days I have to e-mail Dr. Renney and let him how I am doing and I will be sure to mention that his Physical Therapist is giving wonderfully awful advice to his patients.  Not that he will care.  

Next appointment was the big one, going in for the nerve block.  After the indignity of learning how to poop, I couldn't even speak in the car for awhile so I was really second guessing whether this was the right place to come, the right thing to do.  But this block was going to tell us whether or not I had PNE.  The Dr. who did the block was excellent.  Dr. Murphy.  The nurses there were great.  It was at Memorial Hermann Sugar Land Hospital - very clean and efficiently run.  The only differences from previous nerve block procedures - no blood pressure taken beforehand, the nurse instead of the doctor went over the consent (very quickly) and I was allowed to keep my jewelry on.  I didn't even meet the doctor until I was in the CT machine. They numb you up and then inject the pudendal nerve thru the butt - I had the right and left side done since I have pain on both sides.  Wasn't too painful of a procedure except repositioning the needles to make sure they're in the correct spots at the nerve.  You're very numb right afterwards and they bring out a chair, sit you down and everyone stares at you and they want to know if you are still in pain.  It's a lot of pressure and since I've had blocks before I knew that this is what would happen.  I had a hard time telling, as I have in the past.  You're numb, you feel weird, but I knew after a bit that it didn't work.  We even left the hospital and drove a bit, got out of the car and walked around it a couple times to make sure.  

The doctor called as promised about 1 hr later and said he was very surprised that the block did not work since part of my testing from day 1 had been abnormal (the warmth testing).  So he believes the steroids that were in the block may help over the next two weeks.  I AGAIN said but I am on Methadone which is making me feel better so how will you know which has improved me in two weeks.  If you have PNE the block is the diagnostic tool.  The steroids are simply added in there as a way to give you some therapeutic help afterwards.  They are NOT part of the diagnosis as they are now trying to have me believe.  I'm starting to believe this group is for whatever reason interested in the money or proving their cause, I'm not sure which.      

Please contact me if you are considering seeing them and would like more information.      

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