Day 290. A Taste of the Last Ten Years

So for the last fifteen years at least, my body has mystified me…and the doctors.  It’s been a time of frustration, worry, tears, and as a result I have become a de facto junior medical researcher, by way of the many sleepless nights in pain spent in front of Google, searching for a reasonable solution to the puzzle of what ever could be wrong with me.

That’s easy to write, even easier to read and dismiss. But in the middle of that great desert of agony were deep mines misery of that looked like this:

A terrible, frightening symptom appears, and it persists.  Let us say it is headaches, and I don’t mean tension headaches we all get (I get those too).  These are headaches that feel as though my head will explode (remember this detail:  it will be important much later).   Screaming, crying, crawling on the floor, vomiting, vision blurring, halo-seeing, temporarily blind, memory stealing, cognitive function stealing, fucking horrible headaches.  Forgive my profanity please, but one bit of advice (my conservative mom!) gave me to help get rid of pain was to swear about it.  

So a general practitioner doesn’t know what to do with this kind of pain.  I probably saw ten or twenty of these doctors.  What bothered me is that as soon as they heard the word “headache,” it was like their ears turned off. Right away, they gazed at me in that sort of suspicious way from under the eyebrows:  they didn’t see a pain sufferer, but rather a drug seeker.  Who could blame them when their professional journals (you know, like the Journal of the American Medical Association) seem to focus so closely on the overuse of opiates (drugs like Vicodin and Percoset)?  No question that people like to pop the Percoset. Furthermore, the average person can easily feel slightly superior to the an opiate addict, who after all is just a stone’s throw from a heroin addict, and may shake hands with one who can’t get some heroin.  

All this judgment is easy…until we need those very drugs ourselves.  I learned that quickly. However, I hadn’t reached that point early on with the headaches. I just wanted help, as in, “Tell me, doctor, what you know that I do not, so that I can get rid of these *(&^%$ headaches!”  Finally, I reached the point where I would start a doctor appointment this way:  “Doctor, I am not seeking opiates from you.  I am here to ask you to help me solve my problem.”…Too bad none of them ever did.  

So, since none of them suggested it–remember, I was a woman in my mid-thirties, a ripe age for “complaining.”  Studies show that younger women and men with the same complaint get completely different responses from many doctors.  Remarkable, isn’t it? None of this is anyone’s fault, though, I’m convinced.  I’m just saying. Since none of them suggested it, I referred myself to a specialist.  

 I had nothing but time, mind you.  I anticipated living to a ripe, old age back in the early 1990s.  There were days when I might have paid to shorten my life, but it never occurred to me that I might have more wisely rushed things along…that I might be writing to you today, with fewer than 290 days left to live.

To get an appointment with a specialist, in this case a neurologist, takes three months.  Frankly, they are the absolute worst of all the specialists: hardest to see, least adept at problem-solving.  Indeed, if the topic here were neurologists, I could tell you the most horrific bedside-manner stories about them. I know better, though, because there must be some great neurologists out there that I just didn’t meet.  I am sure of it.  The system is flawed, though. My point is that it took nine months to see a neurologist enough times to have tests and do a realistic medication trial of a single drug.  Besides, what if I had an after hours emergency, like a drug reaction (that happened several times)?  Forget calling a neurologist. The one time I was fortunate enough to see one through a university hospital, a resident doctor on call answered after hours and tried to help, which was a good thing.  However, a private practice neurologist disturbed on a weekend did answer, but she was extremely unkind about it.  Now, as a result of her unkindness, if I decided not to work with her, then another year of testing and trials with the new neurologist would (and did, several times) pass.  This was my life, through all the specialists, good and bad.  (By the way, I have really great health insurance, through a PPO, meaning I get to choose my doctors, so I was able to do a TON of research before I choose a doctor.  I know of what I speak because I had an HMO long ago, and that was true quicksand.  In that case, I didn’t have the opportunity to do that kind of lengthy research to find the right doctor; I just got whatever doctor was chosen for me: typically that would be “unluck” of the draw.  

The neurology carousel, that troubled system, meant that if I had an unusual symptom, I would likely never find a doctor or a nurse who could help or explain it to me.  If I had an exacerbation of severe days-long headaches, or allergic reactions to medicines at inconvenient times, too bad, particularly if they were outside of the three-month cycle of trying to get an appointment.  Furthermore, the specialists offered few possible diagnoses; if I didn’t have a symptom set that fit into those possibilities, then the doctors were not interested in working further with me to determine the diagnosis.  I never found a doctor that was interested in doing serious differential diagnosis. After all, headache patients are known to neurologists (and other doctors) to be a hassle.  Ironic, huh?

I tell all this because I had so many symptoms that encompassed so many specialties for so long that it baffled everyone I knew–to the point that it truly seemed I had made it all up to be appalling.  

However, this Wednesday, after being sick for all these years, and having had a ruptured aneurysm three years ago, and finally the informal, de facto diagnosis of Vascular Ehlers Danlos Syndrome, I got to see an amazing geneticist, Dr. Clair Francomano, in Baltimore Medical Center (at the Greater Baltimore Medical Center, which appropos of nothing is very chichi).  Dr. Francomano (I can’t believe I’m saying this) was every bit worth the wait. For the first time in my life, someone understood every single one of my symptoms and was able to make diagnoses and solve problems in sensible ways I never thought would be possible.  We met one time.  ONE TIME.  It was long.  Four hours.  That’s long for anyone, but for me, it was an endurance (pain) test.  I didn’t mind a bit.  The whole time, it felt like my body was electric.  It was.  It was plugged into a grid of unbelievable brain power, caring, and intention to help.

Tune in next time for what it was like to meet the geneticist….

Advertisements

Day 347. Pretty in PEMF

So my mom and Nathan watch the local FOX station evening news, and I happen to admit that because they called me the other night to say that Dr. Oz had been on to promote the next day’s show.  The topic was to be a patient-controlled device that seems to be quite successful in treating a number of health concerns, but particularly chronic pain such as headache, backache, and nerve pain.  Yes, please.

So, that was one Dr. Oz episode I TIVOed.  I was so excited about the topic that as I watched the show, I did more internet research than pay attention to the commentators.  Do you ever do that, and wake up from your internet dream only to discover that the whole show is over?  If you have a DVR, you can rewind it, but the time you set aside to watch it has passed and there you were, foiled by the time suck on your lap.

Well.  So, I learned that PEMF, or Pulsed Electromagnetic Field Therapy, has actually been around since the 70s, and received its FDA approval in 1979.  (To be clear, this has nothing to do with the ordinary refrigerator type of magnets sold fallaciously as headache and arthritis cures; it’s a different type of magnet.)  The device is frequently used in the field of orthopedics for things like broken bones that won’t knit and arthritic pain.  Also some rheumatologists and physiatrists (pain doctors) are experienced in treating soft-tissue wounds as well as suppressing inflammatory responses at the cell membrane level to alleviate pain and increasing range of motion.

The device(s) (by various makers) seem to have been studied extensively over thirty-odd years — although I did note among the 40 and 50 abstracts I read that none seems to have investigated in a large study group of beyond, say, 50 subjects.  But studies seem to prove in small groups that PEMF Therapy can treat acute pain dramatically well, and chronic pain as well, but somewhat slower.  This has been my experience so far exactly.

Here’s what it looks like:

These machines have one major disadvantage, and that is cost: at present, insurance doesn’t cover treatment, so there’s no $25 copay/visit, and even if there were, at the very least one should be treated three times weekly.  Ideally one would be treated twice daily.  At $25 a pop for copay, the cost would immediately be out of most of our reach (and who pays a $25 copay anymore?).  If there is any good news, it is that some of the machines are now made for home use. Thus, rather than costing $25,000, they cost between $3000 and $5000, which still puts them outside of most of our reach. We can gather, though, if the insurance won’t cover a copay, they certainly won’t cover the purchase price of the machine.

One company, iMRS, figured out a way to let desperate people try the machines.  They rent a brand-new machine for $500/month (with a refundable $1000 deposit on the credit card).  We can rent as long as we like, and if we decide to keep it, all the rent (and deposit) will go toward the purchase price (which is close to $4000).  The cost is still outrageous, but for someone who is desperate (and potentially has only 347 days left on the planet), all money starts to look like the gold-colored five hundreds in Monopoly:  imaginary.

That last argument not holding any water, my Mom and Nathan helped me rent it for a month.  Let’s see how it goes.

Here are a couple of other parts of the machine:

So far, it hasn’t afforded the miracle cure I’ve been hoping for.  I would say, though, that it is fairly miraculous on acute pain, like the headache I wake up with three times weekly that I mention in the probe video, a feeling like someone is cracking open the bridge of my nose and then chopping it up in pieces.  If I run the probe over the offending areas for the prescribed 16 minutes, the headache will be gone afterwards (rather than taking a day, or more, of extra narcotics to try to treat it).   Similarly, it can help sometimes with arthritic pain that pops up as well.

Karma is sweet, though.  Nathan has had a shoulder injury for many years from parachuting from a plane.  He’s a tough guy and doesn’t take any painkillers or complain, but he says he hasn’t slept well for as long as he can remember, and putting on coats and things have been impeded from his range of motion.  I put Nathan on for one eight-minute treatment for chronic pain.  He didn’t feel much different immediately afterwards–and he was pretty skeptical about the device. However, he called me the next day to say that he slept better the night before than he had in as long as he could remember.  And even more compelling was that he had just about 100% range of motion back, which he hasn’t had in lo these many years–since a few years after the injury.  It couldn’t happen to a nicer guy, frankly.  He deserves it!  (He’s coming back for regular treatments now, to make sure the treatment “sticks.”)

Now, here is the controller:

There are so many settings–and I have just as many ailments–I have had some trouble choosing the proper setting to use.  My brother suggested choosing the most painful thing for me, the neuropathy, and empirically pursuing that for the next month. That sounded reasonable, so that is what I mainly do, for 1-2 hours daily (except when I need to treat acute pain). I’ll let you know what I find out.

Any lower back sufferers out there?  $20 a pop; meet me in my guest room!  (By appointment only)