Fainting - Yikes!

Despite the fact that I spend most of my time laid up, things are never boring around here. Husband started business school yesterday and with it came a little orientation/reception for the spouses at the business school.  Let's just say I made quite the impression.  Attempting to be a supportive spouse, I put on a dress and some cute shoes and went to the reception, despite being in a lot of pain.  I mingled for about an hour and a half, was in the middle of a conversation and BAM, fainted. One minute I'm talking, the next minute I'm on the floor, laying in a puddle of my dropped glass of wine, with the ENTIRE party standing around me. Humiliating.  After I came to and said "can everyone stop staring at me," I was laying on the floor and was asked several times "are you pregnant?" - I'm like "no, definitely not" and this guy at the party copped an attitude and was like "well, how do you KNOW you're not pregnant?"  At that point I just said I gotta get up. Because I hit my head really hard on the floor, they called the school EMT's who wanted me to go to the ER and get checked out.  Remembering the Natasha Richardson ski story, I figured better safe than sorry. So, Husband had to miss the Orientation after-party to sit with me in the ER next to two yelling crack addicts (one of whom was pregnant).  All in all, I'd say a successful evening.  Played the part of supportive spouse - check.  Killer headache; no brain injury - check.  Free ambulance ride - check.  I think I just got myself out of all future school events!

I don't think Husband is even phased anymore.  I can't say he looked totally surprised or particularly freaked out when he showed up to get me post-faint.  Married 10 months and that was already our second trip to the ER.  The last ER visit was post-Laparoscopy/Appendectomy when I had a 101.5 fever and was sent to the ER.  Hopefully no more hospital visits anytime soon.  Still don't know why I fainted but I'm guessing it was just the combination of a sort of hot room and being in a lot of pain.      

Back in the Real World

Returned from a nice trip to the beach to find a big stack of denial letters from the insurance company and other health insurance bills. Lovely. But, I had an equally large stack of wonderful cards and notes - so thank you!

It took me about a month and a half to get an appointment with a certain "pelvic pain specialist" in NYC -- since I'm pursuing things with Hopkins and have an appointment there next week I almost cancelled but I decided to go incase things didn't work out with Hopkins. The doctor was young and seemed knowledgeable but was one of the more arrogant I've seen. He actually laughed about choices my other doctors and I have made. I'm glad he thinks it's comical and absurd that I had numerous doctors telling me to go on Lupron. That was annoying -- particularly since he didn't even look at their records.

While taking my history he clearly didn't think I had a nerve problem and then after examining me he back peddled and came to the conclusion that I may have a problem with a distal branch of the pudendal nerve. I couldn't believe it - I thought I was past hearing "pudendal nerve problem". Apparently not. He wants to put me on Elavil. Originally he wanted to try me on Lyrica (again) but I had bad side effects last time so he decided on something else. I may try it since anti-depressants are the one class of drugs I haven't tried and from what I've read, a lot of people with nerve problems have luck with Elavil (aka Amitriptyline).

He also wants to do a nerve block next week and even mentioned down the road a spinal cord stimulator. This is essentially an implanted pain device in your spine. Commonly used for nerve pain. NOT something I'm interested in. When I asked if you could use that while pregnant he was laughing and saying how great it would be during labor. Yeah, keep on laughing buddy. Am I laughing? No. So, the verdict is out on this guy.

Hopefully things will go well with Hopkins and I can make some progress there before going down a path with this guy. It's just frustrating because at the Mayo Clinic they laughed at the prospect that I could have a pudendal nerve problem. A few days before that, a top pudendal specialist, Dr. Antolak, gave me a pudendal diagnosis. My physical therapist thinks it's genitofemoral/ilioinguinal. Who knows. Can someone just figure me out already?

On the Beach

Husband, Dog and I packed up and got out of the City for the week and headed to Long Island.  After 6 years and many travels, this was Dog's first trip to the beach. She was very zen about the whole thing. Played in the ocean, then sat on the beach like a person and just watched the waves crashing.  I half expected her to bust out some yoga moves or meditation any minute.  After my 2 recent pre-melanomas, I stayed under the umbrella with my 70 SPF on but Dog soaked up some rays for me.  I had to skip physical therapy this week but I don't think it will do too much harm.  

Husband just left his job to go back to graduate school so now we're one unemployed and one disabled.  Should make for an interesting combination going forward.  Ramen noodle recipes anyone?  When we rented the house we're staying in, we failed to mention that part and just said we were a lawyer and my husband's previous occupation.  Sounded a lot more impressive than an unemployed guy and a chick on disability.  

Pain Changes Things

I'm back from a small blogging break. It's been a frustrating time. I've made the choice of Hopkins for my care and that has meant weeks and weeks of waiting. Members of my family came for a visit and thought cleaning, buying some new furniture would change something for me. It didn't. They want to blame my frustration and anger on "drug withdrawal" when in reality, I'm just frustrated and angry. Period. But, it's easier to blame "drug withdrawal" than accept and discuss that the family member you know and love has been changed by months of pain, frustration, isolation and having to go against most doctors to get the help they need. I've had to take charge of something that I'm not qualified to take charge of. Constant pain is maddening. Dealing with these doctors, almost equally as maddening.

My decision to go off all the drugs -- turned out to be a good one despite the fact that my pain doctor (number 2) told me this would put me in more pain, I would be doing harm to myself, and that it was completely against his medical advice. As I sat in his office a patient came in to get a refill of her Methadone prescription. She was so doped up I'm surprised she could even find the office. She even waved to us like a drunk person. That's how much Methadone I would need to be out of pain. And I do believe Methadone would take me out of pain. I'd never get a diagnosis though and I certainly wouldn't be "functioning" in any real sense of the word. It's frustrating to know there's something out there that could take me out of pain but at this point I have to keep enduring if I want to get any answers. Even at the starter dosages I was falling asleep in the middle of conversations with my Husband. I am not a doctor; how are people supposed to make decisions like these? Even my Husband tells me I need to trust my doctors. But I can't do that. Particularly when I seem to be doing better distrusting what they say. All the drugs that I was on were only giving me the negative effects -- constipation etc. which I think made my pain WORSE-- and weren't helping one single bit with my original pain.


I'm waiting for my return visit to Hopkins which will be just another one hour consult before I can have even my first diagnostic nerve block there. It will likely be a month wait after that consult. People die waiting for doctors, procedures, organs. My family seems to think I should get moved up in the line just because I'm in pain. I may be in pain but I'm not dying. I'm certainly not going to get moved up in the line. Dying people don't get moved up in line. I called, pled my case, and was told "go back on your drugs" if you can't wait. Nice.

My Last Rant...

Probably induced by drug withdrawal.  I need to stop ranting and seriously relax.

Too Many Cooks In the Kitchen

My new pain doctor has me absolutely furious.  I haven't really liked the man since he told me I was "doctor shopping" (in my case I like to call that looking for someone that can help) but I guess I got what I wanted -- someone to help diagnose.  The first pain doctor categorically refused to assist in diagnosing me and would only ramp me up on drugs so I eventually found someone who would assist in a diagnosis.  But, at that same time I finally got in to Hopkins where I now feel I can be better diagnosed and hopefully treated.  But new Pain Doctor still wants to stay in the game.  I was just there last week to discuss tapering off the drugs (against his advice) and now he wants to send me for MRI's of my hips.  WHAT?!  Totally out of left field.  He himself thinks this is a pudendal or genitofemoral nerve problem (neither of which will show up on an MRI).  I'm trying to avoid any more unnecessary expensive testing that involves radiation.  I've had enough.  Enough, enough, enough.  9 months of useless testing.  I've had enough radiation to last a lifetime.  Now I just want everyone to leave me alone except for Hopkins and my physical therapist (on the off chance she's doing some good).

    

Sometimes when you get what you're asking for it's just not what you want anymore.

My internist keeps calling for me to reschedule.  He adds no value to this situation.  I essentially pay him $350 in cash and then proceed to update him on what I've been doing with all my other doctors (whose records he has).  It's comical and a complete waste of my time and money.  I'd get more use out of telling my story to a shrink for that price.  But, hopefully he will assist with a disability claim if this is not diagnosed and resolved by September.  So, we gotta keep him in the game.

And, since there was lots of recent heated discussion among the commenters regarding my Houston PNE trip report, I thought I'd add that I got the insurance company's bill from Dr. Popeney who performed the electrodiagnostic testing (PNMLT, etc) in Houston.  He billed the insurance company $1900 for his time with me.  I must say, I cried when I saw that bill.  Not because I'm paying it - my insurance company foolishly is.  But because I thought $1900 for THAT barbaric little session.  Amazing.   Let's put it this way - they had to stamp in large letters on the invoice they submitted - THIS TEST IS A MEDICAL NECESSITY.  Yeah right.  It's called guinea pig testing.  As a commenter on the previous posting seemed to suggest, this may be the best that they have to offer PNE sufferers at this time, but my response is that's not what all PNE doctors do. The PNMLT is a tolerable test and is what many doctors do (though NOT all because about half the time according to Dr. Popeney the results are normal in someone with PNE).  Doesn't sound like such a helpful test afterall.  A quantitative sensory test - also a perfectly tolerable test.  Once you get into the realm of other electro testing - find out what they're doing.  There are a number of PNE doctors out there - use the links provided at the side of my page to find them.  They will all return your calls and you can ask them specifically how they come to a diagnosis.  What testing they use.  To get a diagnosis, you don't have to undergo painful, unnecessary testing for a Doctor's academic purposes.  That's not YOUR purpose.  The other PNE doctors are not doing all of the Houston testing repertoire.

Going off the Drugs

Drugs.  Or "Medicines" as my new pain doctor corrects me.  Whatever you want to call them, I've been keeping the pharmaceutical companies in business lately.  But I've decided to taper off all of my drugs and today was day 1 of no Methadone.  I made this decision in part because with the exception of the Methadone, the rest of the drugs did nothing to help my pain (and I was on them for many months) and being on the Methadone will stand in the way of getting accurate diagnostic nerve blocks.  

Seems totally counter-intuitive, right?  I'm in pain, the Methadone helped, I should keep taking it. But, such is life.  So I've been weaning off that and the Topamax (under medical supervision). I stopped the Mobic.  And did a quick taper off the Tizandine though I was told I could quit cold turkey.  I'll have to keep tapering off Topamax (that one has given me some problems) and then start tapering Clonazepam which is apparently the difficult one.  My new pain doctor doesn't agree with this but my other treating/diagnosing doctor does and I do so that's the game plan.  

I've been on such low dosages of the Methadone now that the pain level is no different.  We'll see how I do pain wise (I think there will be no spike whatsoever) but so far nothing has changed except my mind is no longer a bowl filled with mush.  In fact, I feel better without all these drugs clogging my body.  Since they weren't actually helping with my pain, they were really only causing other problematic side effects.  

I had doctors telling me conflicting things on this and ultimately I had to go with my gut and stand up to the pain doctor telling me that I was going to do more harm to myself.  Do I wish I could be diagnosed and on a ton of Methadone?  YES.  But I cannot.  Once I have a diagnosis, I'll probably be singing a different tune.  I just hope that's soon.  First call Monday morning is to Hopkins.  "Hey guys, remember me?  Want to do that nerve block soon?"