Irradiated to The Max and Beyond

Me She Hulk, Me Angry

A friend called last night to tell me to watch the local news.  Apparently the hospital I received my radiation treatment from has discovered a major miscalibration of their brain tumor treatment equipment, starting in the year I received my treatment.  The explanation I read stated that the physicist who helped setup the new equipment did not caculate the dosage correctly.  This physicist is no longer employed by the hospital group, thank goodness, but apparently the poor souls receiving radiation could have gotten significantly more radiation shot through their brains than ordered. An article about Cox Health System and the overdoses was published by the New York Times, so this is big time news around here.  See also an article and newscast from the local NBC affiliate, KY3.

I did not receive radiation treatment to my brain, but I did receive high dose rate brachytherapy which is individually calculated by a physicist - with my luck the same physicist who botched the calculation for the other machine.  The first two brachytherapy treatments I received were 15 minutes with a very heavy radiation source.  After reporting side effects after both of those treatments, I was apologized to and was told that "they" had not meant to irradiate my entire body, just a quarter inch into the skin (which is standard for brachytherapy) so they were going to change the radiation source and length of my last treatment.  It was only five minutes long with a much lighter source.  I did not have the side effect issues I had had with the prior two treatments.  I speculate that there was a gross miscalculation for the first two treatments.

I also received external beam therapy, which during my treatment was delayed several times because new software was being installed.  I don't know whether it was for machine calibration, machine control, or other purposes, but it did throw the patient flow off so it had to be related to treatment. 

I am very aggravated because I have been struggling with after effects of radiation treatment for the last five years, and have been unable to get local physicians to acknowledge the cause.  I hate to be a conspiracy theorist, but perhaps part of the problem I had getting a diagnosis was that they were already aware there was an issue with the equipment/physicist in the first place.  After all, the physician I saw in St. Louis had no problem stating my digestive, nerve and incontinence issues were due to radiation treatment, while the Dr. Dunces I saw locally had me doing the testing shuffle insisting that it must be some other organic or disease issue.  The local colorectal surgeon was the only one willing to state that the problems I had were from radiation exposure

Whether it is ever officially acknowledged or not, I am certain I received too much radiation for my body or my tissue to handle.  I have contacted the hospital and asked them to please investigate.  I hate to have to escalate my inquiries through official channels, but have no fear of doing so if needed.

I feel like the Incredible She Hulk, irradiated and glowing green ready to tear up some buildings in my rage.  I guess there isn't much to do about it now the damage is done, but gosh durn I'd like to put the smack down on some doctors! 

See my related posts Post Radiation Neuralgia; Electric Pain Chaser; Seeing Dr. Dunce;  Another Dr. Dunce Day; Wash U Rocks

The Art of Diagnosis

Money Makes The World Go Around

While waiting on someone to complete their shopping today, I listened to The People's Pharmacy on National Public Radio. The subject was "The Art of Diagnosis" and the guest was Dr. Lisa Sanders, an internist at Yale University that in addition to being a physician writes a column for the NY Times and is a consultant for the TV show "House".

Dr. Sanders stated that many diagnoses were guesses, using the law of probability to start with the most common and then parse down to the less common if the most common did not work. For some of us who have gone through the guessing game more than once it is gratifying to know that what we felt - this is just an educated guess - is true. She said doctors needed to be more open about how they come up with a diagnosis and what the alternative (or less likely) guesses might be if the first one doesn't work out. She also stated that all patients have a story to tell, and many diagnostic errors occur when the physician or the medical establishment fail to pay attention to the story.

When I was trying to find out what had happened to me when The Headache began, I ran into many different physicians and many different diagnoses. The first was migraine, then status migrainosus, then migraine aggravated by sleep apnea, then intractable migraine, then medication overuse headache, then cluster headache mixed with migraine, then a cluster headache variant, then transformed migraine with occipital neuralgia, then paroxysmal hemicrania, then chronic cluster, and finally the only diagnosis that has really fit - hemicrania continua.

Almost every time I was interviewed I was asked "When did this headache start?" I would answer "December 2007" and the reply would be "I mean THIS specific headache" and I would answer "Since December 2007 - one nonstop headache" and then I would be ignored, and more expensive tests or drugs would be ordered. I guess because I had a documented history of migraine the doctors were going with the most probable diagnosis, but the last physician I saw actually listened and said - "One headache - this has been one headache this long?" and gave me the hemicrania continua diagnosis. She didn't need any tests, xrays, sleep tests, or hospital stay to diagnose this either - she just needed to listen, and apply her specific knowledge.

Having worked in healthcare and around healthcare for 20 some years I have a cynical attitude about healthcare entities and their primary motivation for doing anything: MONEY - either making more, or spending less. There are exceptions, and I have been around a few, but healthcare is big business in this country and has concentrated a lot of wealth in few hands. I don't see this changing anytime soon. Nor do I see any incentive for physicians to be better diagnosticians - value is not being placed on this skill, value is being put on the amount of time spent with each patient, i.e. more time = less money.

Hoping for a better world, knowing I probably won't get what I wish for!