My unusual bone tumor . . .

I have written before about the fact that I have a history that includes a fight with a bone tumor back in 1980.  I recently wrote a summary of the events that led to that diagnosis, because my lawyer in the fight with Social Security thought that it would be helpful to our fight.  After some reflection, I decided to post it here, as well.  Hope you find reading this to be helpful in understanding me . . . .

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Vernon Pope’s Bone Tumor Discovery

This is a factual summary of the events leading to the discovery of a bone tumor in my left femur in October of 1980.

The story begins on September 17th. I was active duty in the United States Army, assigned to Ft. Eustis, Virginia, training to be a helicopter mechanic. On that day, I awoke with the rest of my unit at 0500 hrs. (which was normal for all normal duty days). At the time I awoke, I was not aware of anything amiss. I sat up, spun on my bed, and placed my feet on the floor, feeling normal. The very moment I stood up, I felt a searing pain I have struggled to describe ever since. The best estimate I can give to what that pain felt like is imagining what it might have felt like to have my whole left leg doused in gasoline and set fire. I screamed so loudly that half of the men in my barracks came running to the room I shared with 5 other trainees.

Very quickly I was questioned about what was wrong, and it was decided that I needed to get to the nearest medical aid station immediately. Two of my fellow trainees created a fireman’s carry chair and hauled me to the aid station. The medics on duty checked for sprains, broken bones, charlie horses, and other usual suspects, without discovering the cause of the pain. By the time the examination was concluded, the First Sergeant of my unit was also on location. The medics gave me some non-prescription pain killers and said they didn’t know what was wrong. They sent me back to the barracks on 24 hour bed rest – and specifically instructed my First Sergeant that if I was not feeling better by noon I should be admitted to the main base hospital for further testing.

The First Sergeant took me to the hospital at 1205 hrs. that same day.

The following days were a series of tests, x-rays, and other exams. Nobody who examined me ever suggested that they felt my pain was other than real, but no evidence was found for a cause with any test the hospital at Ft. Eustis was capable of performing. On October 8th, I was put in an ambulance and transported to Bethesda Medical Center for a full-body bone scan, with and without contrast.

On October 9th I was informed that the bone scan had revealed a shadow on the left femur that had not previously been seen on x-ray. I was scheduled for a biopsy of the site of the shadow for the following morning.

The doctor who performed the surgical biopsy deserves some mention, I think. He was Col. James W. Blunt, Jr, MD. He was the Chief of Orthopedic Surgery at Ft. Eustis at the time in question. He was also the Hospital Commander, and the highest ranking Orthopedic Surgeon in the United States Army.

I went into surgery at 0700 on October 10, 1980. I was back in my room after recovery by noon. At 1300 I was informed that I had a bone tumor – eosynophilic granuloma (please forgive me if I misspelled it – I am not an oncologist), and that I would be permanently disabled.

I want to call attention to a few facts of this narrative. First – that I experienced extreme pain all of the 23 days before we knew what was causing it. Second, there actually was a very real problem. Third, that the same sensitivity to changes in my body is why when I experience a migraine headache now, it isn’t something I can medicate and still go on with a normal day.

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Another open letter…

I know, I seem to write a lot of “open letters” – but mostly I write them as open letters because I have very low expectations that anyone with any authority in such matters would actually care about what I have to say.  Even so, I still need to try to express it – “get it out of my system” so to speak.

This one is to the judges who decide eligibility for US Social Security Disability programs.

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Dear Judge,

We’ve talked once, and you’ve been in contact with my lawyer several times, about my pending claim for disability.  The fact that I have a permanent military-service-related disability is well documented and not in dispute.  You do seem to have some issues over what some call my acting “against medical advice” – so I thought some explanation would be called for.

I first had trouble with the leg that is home to my disability one week before I turned 18 years old.  It took the US Army 3 weeks to find the problem, do the biopsy, and give me a diagnosis (bone tumor) and treatment program.  I was in severe pain the entire 3 weeks, and could not walk at all due to not being able to put weight on that leg.  After the biopsy, I was informed that I was permanently disabled.  It took 6 months for me to be willing to believe that – 6 months during which I returned to the hospital over a dozen times for stress fractures around the biopsy site.

Becoming convinced that I actually did have a disability, I then began to follow “medical advice” – to the letter.  I never exceeded the limits the doctors imposed on me, took the pills they gave me for pain, did the physical therapy they assigned me, and 6 months later had recovered enough mobility to walk unassisted for short distances.  The US Army surgeons who worked with me said I would NEVER be able to exceed walking one mile per day – total.  That includes the trip to the shower, trips to the bathroom and coffee pot, going out with my wife – everything.  Not more than a mile.  That was the high end estimate back when I was still young and mostly fit at 155 pounds.

I’m now over 50 years old, and my most recent trip to the bathroom scale put me at 224 pounds.  I have trouble walking around the block.  Still, that isn’t really what this letter is about.  I had my first migraine headache about 20 years after that biopsy.  I had been taking prescription strength pain killers for the pain in my leg for 20 years.  During that entire time, nobody ever once told me that migraine headaches are a known side-effect of long term use of pain killers.  Even after I was diagnosed with migraine headaches by the St. Louis VA hospital, nobody shared that piece of information.  Not once was I told that I was buying 20 years of nearly-normal functionality by sacrificing the rest of my life. I had to find a copy of the Physician’s Desk Reference and learn it on my own.  But, if you look in the fine-print information on every drug I was given for that pain over the previous 20 years, it is there to be found.  Tylenol, 800 mg. Motrin, Tylenol 3 with Codine – and several others that are now over-the-counter – they all state in the fine print that the migraine headache side-effect is a known possibility.

Yet you think I should continue to trust the very same types of people who were never once honest with me about the possible harm their treatment protocols were doing.  Even worse, the ones I work with now won’t discuss the implications of the drugs they want me to take for the migraines, either.  If I were to blindly follow their recommendations, how much worse can I expect to be when I turn 60? Or, fate willing, 70?  Are you honestly suggesting that I throw intelligent caution to the wind and cooperate with their prescriptions that might lead to my early death?