Trip Report

It was a long week...with "answers"....if you call them those except they're all conflicting....one diagnosis from Dr. Antolak of Pudendal Nerve Entrapment (the one I didn't want) and Maigne Syndrome (basically, stand up straight) and one tentative diagnosis from Ma.yo of Genitofemoral Neuralgia.  However, these are only theories at this point and have not been proven until I have a nerve block that brings me relief (even if only 15 minutes).  Scheduled to return to Ma.yo in 2 weeks though I'm not sure they have the expertise in this area.  

So, clearly still nobody has a clue.  If I were a betting woman I'd say I have Genitofemoral Neuralgia.  If anyone knows of doctors who are knowledgeable in this condition - please post or email me.  

Some highlights from the trip and a review of my Health Care Advocate:

1.  Almost being put into a "Pain Rehabilitation Center".  Hello 3 weeks of Rehab!  Ma.yo took a look at my drugs - prescribed by the head of the Pain Clinic at a top NY hospital and said you are on way too much stuff, you need to get off of this under medical supervision.  We're talking 3 weeks in Rochester, Minnesota.  8:00AM to 5:00PM with group therapy, making pot holders and learning ways to deal with my chronic pain - therapy, stretching, relaxation CDs for at night, exercising (I can't exercise, I have a nerve problem in my pelvis!!!!).  I'd go totally nuts.  I met with the Program Manager and was like Listen Buddy, I'm here to get a diagnosis, this whole drug thing came up at the end of my meeting with my internist so I'm willing to do this program because I am on a lot of useless drugs that I had no idea I had to taper off of but I'm assuming you'll let me leave at will for my doctor appointments.  And I negotiated him to THREE appointments.  So, Rehab is out.  I can taper myself off the rest of the drugs under doctors supervision in NY.  

I started having the twitches just being in that place waiting to talk to them.  Big white boards telling you where you're supposed to be.  Everyone in big tennis shoes.  I just kept asking "what did I do to deserve this."  I called my Pain Doc while I was there and left a message for him to call me immediately because they were about to put me in Rehab for the drugs that he prescribed to me!  Not pleased.  I advise anyone taking drugs to find out how long it will take to get off of them before you end up in my boat.  For the record: I'm on LOW dosages of: Topamax, Mobic, Methadone (obviously I knew that one was a problem but I take like 3.5mg), Tizandine (aka Zanaflex), Clonazepam.

2.  My "Health Care Advocate" doesn't normally live with me so she doesn't know my new "sick person" routine.  I can't eat very much because of all of these drugs and their side effects on my system - so I have my own food routine down and it is not to be messed with.  But, being a good Health Care Advocate she thought she should try to feed me - Steak, McD's, pastries, etc.  So try to feed me she did.  I was woken up about every 30 minutes for several hours each afternoon.  I believe this may be torture under the Geneva Convention.  I still remember the side dishes offered from room service at the Sofitel in Minnesota because she read them to me each time she woke me up - buttered linguine, creamed spinach, grilled asparagus, etc.  Tenth rectal exam of the month and sometimes a girl just needs a nap not a side dish.  Finally I had to lock her out of our connecting room on the fourth day.  Other than our food issues and sleep deprivation, she was an excellent Health Care Advocate.  A+ Mom!  

This is a must particularly if you are taking drugs and may not remember everything a doctor says, need someone to ask questions you might not think of or are having procedures done.  A second person in the room can also press a doctor with tough questions if you don't feel comfortable doing so yet.  I on the other hand seem to have the opposite problem.  Sometimes when you're too knowledgeable doctors can almost turn on you - particularly if it's an area that they don't know much about.  They much prefer the intimidated patient -- that's the patient that I was for the first half of this until I realized nobody was going to help me until I helped myself.

I'm headed to Ho.pkins Monday where I think they know what they're doing in this area.  So I'm feeling tentatively optimistic.