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The past two weeks saw me struggling with the local medical community. In short, I was misdiagnosed three times in a span of five days resulting in delayed treatment and extraordinary unnecessary costs. Welcome to the modern world of administering health care based on dollars rather than sense.
On September 19, 2019, I noticed a slight headache along with some pain in my left jaw. The headache was on the left rear of my brain. By Friday evening my jaw, ear, and brain hurt. I pride myself on being aware of unnecessary medical costs so I waited until Saturday morning to go to an “Urgent Care” clinic. This is the Saturday clinic operated by Northwest Health Services in St. Joseph, Missouri. The pain had kept me awake through the night and I was waiting at their door when they opened at eight o’clock A.M..
I saw a Nurse Practitioner, a job title that I have come to respect, and she looked me over. She examined my left ear and quickly noted redness and inflammation and diagnosed an ear infection. She prescribed amoxicillin, an antibiotic, and sent me on my way. I was actually relieved because the symptoms had sent my imagination into the wild world of brain tumors and jaw cancer. An ear infection was satisfyingly manageable. The pain was to be managed with ibuprofen. (Ultimately I would be on 800 mg of ibuprofen three times a day for ten days).
On Monday morning, September 23, 2019, I awoke with extreme vertigo, nausea, headache, sore jaw, and pressure in my left ear. The room was spinning as if I had just downed forty-two cold Busch Lite 12’s. I took a hard fall in my kitchen, bouncing off the wall and falling into the kitchen cabinets. At eight o’clock I called my primary care giver. She is off work on Monday’s and there was no one else in that office available to see me. The Nurse recommended that I go to the Mosaic Life Care Emergency Room in St. Joseph, Missouri. This is the only local option in St. Joseph, where I live. I called a friend to give me a ride and off we went, stopping along the way so I could step out of the car and vomit – the nausea was debilitating.
It may have just been my sad misfortune but the ER Physician who saw me, Dr. Spinks I believe, was something of a minimalist – he does not do any more testing than he believes is absolutely necessary. Actually, an ER nurse said that about Dr. Spinks, minimalist was her term. It felt like I was in an urgent care clinic rather than a hospital ER. They did some blood work, all ‘normal’. Dr. Spinks said I had an ear infection but that it was probably viral and the amoxicillin was probably not doing any good – but I should continue the regime to avoid the super-bug thing. He prescribed Meclizine for the vertigo and ondancetron for the nausea. The headache and jaw ache was not addressed. No CT Scans, no MRI’s, no substantial testing. I was discharged from the ER with a feeling that the ER personnel thought I was one of those people who abuse health care services. This may have been the worst experience with medical care I have received in sixty-nine years.
On Wednesday morning, September 25, 2019, the pain was overwhelming. The whole left side of my head was excruciating. At eight o’clock A.M. I called my primary care office. The Family Nurse Practitioner (FNP) that I normally see was booked for the day. I insisted on seeing someone. After some unnecessary haggling on the phone they booked me with a different FNP for eleven o’clock AM. My pain informed me that this was not good enough. I called them back and told them I wanted to see an Ear, Nose, and Throat (ENT) Specialist. The desk clerk informed me that I would have to come in and see the FNP for a referral. I have a PPO and do not require a referral to a specialist.
My pain took over and I went to the unhappy place in my mind where I become aggressive and unforgiving. I called the local ENT office and they told me that they could see me next Tuesday. Not good enough. This ENT office is a part of the Mosaic Life Care network. I called the Mosaic switchboard and asked to speak to what I call “Administration”. My intention was to complain to the highest levels of local health care. They transferred me to the office of “Patient Care Advocate”, where I was received by a voice mail asking me to leave my name and number. I did. I have dealt with the Patient Care Advocates at Mosaic in the past and my impression is that they are diplomats – nothing changes but you feel better about not getting good service.
I called the switchboard again and asked to speak to Dr. Laney’s office. Dr. Laney is the CEO of Mosaic. They connected me. A lady answered. Her name is Karen and she unfortunately had to talk to me at a very bad moment. I was sarcastic and difficult as I explained that I wanted to see an ENT that day. She did not put up with my guff, ultimately hanging up on me. I called back in about thirty seconds. She answered and told me that she had contacted Dr. Turner – the man in charge of all Mosaic clinics. Karen is a champion. Dr. Turner called me in less than five minutes. (I should note that I actually retired from Mosaic many years ago. I worked in information systems and Dr. Turner remembered me.) Dr. Turner found an opening at the Mosaic ENT that afternoon at two o’clock P.M.. My head was pounding. I called my PCP to cancel that appointment and report that I was seeing an ENT.
I arrived early and the ENT Clinic staff was efficient and courteous. I was in the waiting room for only a few minutes. After some preliminary testing (puffing air into my ears) a staff person led me to a treatment room where a Dr. Gaunt quickly came to see me. He immediately saw my ‘ratcheting eyes”. My eyes were not moving in a smooth continuum as they moved across the room – they were jumping in quick movements he called nystagmus. Dr. Gaunt did some further testing, with his nurse present, and they both saw the tell-tale signs of small calcium crystals dislodged in my ear canal. I am paraphrasing because I do not know the exact medical terms. Dr. Gaunt prescribed physical therapy to reset the crystals – or to get them out of my ear canal. Again, that was on Wednesday, on Thursday and Friday I did physical therapy at the recommended local physical therapy place (Performance Plus). Dr. Gaunt also ordered a CT Scan for the following Monday, noting that it could easily have been done in the ER.
When I woke up on Friday morning I noticed that my tear ducts in my left eye were overactive, dripping tears down my cheek. When I had my first cup of coffee I noticed my lower left lip seemed a little numb, like I had been to the dentist. Late in the morning I called the ENT office and reported these new symptoms. A Nurse called me back around three o’clock P.M. that Friday and told me to call back if the symptoms got worse. The symptoms got worse but the ENT office was closed.
On Saturday morning my left jaw hurt, there was pressure in my left ear, my headache along the left side of my head was excruciating, and the whole left side of my face was drooping. I could not close my left eye and could only smile with half of my mouth. Clearly I was in medical trouble. If we count the Doctor of Physical Therapy, I saw four medical professionals in a week and my symptoms got progressively worse along the way. No one addressed the headache – none of the diagnosis explained all of my symptoms. I called the nurse hot line on the back of my insurance card. (United Health Care Advantage Plan, a medicare management program). The Nurse listened to my story and had me do some exercises to see if I was having a stroke – for instance she had me extend my arms and test movements. I asked to go to Kansas University Medical Center (KU) Emergency Room in Kansas City and she agreed. My friend, who had been driving me around all week, gave me a ride. We arrived at KU in the early afternoon.
The folks at KU don’t mess around. I was in a trauma room in minutes and was soon hooked up to EKG’s and an IV preparation installed and an ER Physician came in to personally hear my story (some say History and Physical). He took his time and listened to the story that I have told here, all the while typing into my medical record. KU is just that, a University with a teaching hospital. My ER doc was probably a third year resident. He was clear that he had to report his findings and recommendations to his boss. The resident did an examination and he too saw the nystagmus – the irregular eye movements. He said he was going to recommend a CT Scan. He left the room. A while later another Physician came in, the Boss. He examined me closely, paying particular attention to my left ear. He spoke briefly, “I think you have Ramsey-Hunt Syndrome but I am going to call Neurology.” “What is that,” I asked. He said that I appeared to have shingles in my inner ear. He said it looked like the shingles virus had attacked my facial nerves causing my face to droop. He cautioned that this was a preliminary finding and that they would learn more with testing.
It was not long (what is long in an ER?) before another Physician came in – this time a Neurologist. I don’t know the names of any of these physicians but they were all prompt, courteous, professional, and above all – competent. The Neurologist ordered a MRI of my head. He said if the problem was Ramsey Hunt then the MRI would clearly show the inflamed nerves and inner ear chaos (my words).
The afternoon progressed with Emergency Medical Technicians (EMT’s) coming in to do EKG’s and preparations to go to radiology for the ordered exams. I was taken by an EMT to radiology for a CT scan. Later I was taken by another EMT for the MRI.
The Neurologist returned before the Radiology Physician had interpreted the MRI. He looked at the MRI images himself and cautioned that we had to wait for the Radiology interpretation but that he saw what he thought were clear signs of the nerve inflammation predicted by Ramsey Hunt. Another hour passed and the Neurologist returned with the official results. It is Ramsey Hunt. This diagnosis is confirmed by the tests and explains all of the symptoms. The Neurologist said the recovery from Ramsey Hunt is generally good. Early diagnosis and treatment is essential to full recovery. He said that I would likely have some permanent facial paralysis that would likely only be noticed by a medical professional. I was discharged from the KU ER around nine thirty P.M. on Saturday, September 28, 2019. I had prescriptions for Prednisone and an anti-viral medication and some lubricant eye ointment.
My left eye will not close or blink. The eye ointment keeps it moist and protects it. I wear a patch to protect the eye from dust particles. My vertigo is almost gone but my depth perception is minimal. My vision is blurred from the dichotomy of dry eye and overactive tear ducts. Most of my facial paralysis is but a nuisance. There is no actual pain in my face. It is a pain to constantly be wiping my eyes of excess tears. Eating and drinking is awkward because half of my mouth does not work. I struggle to blow my nose on the left side. Today, October 3, 2019, is the first day in two weeks that I have not begun my day with ibuprofen. I can feel a slight headache but I am trying to escape drug therapy.
So there it is. That is the story. What can we conclude? What does this story say about modern health care in America? Anything? Nothing? Is this incident an aberration? I think not. It is clear to me that the cost of doing testing, like a CT Scan, determined medical outcomes. The astounding irony is that ultimately the cost of my care went out the roof as a direct result of medical professionals trying to hold down costs. And worse than that, my diagnosis was delayed a week – which will likely result in permanent consequences.
I do not know what to do other than to tell this story as accurately as I can. My hope is that someone with authority to take action sees this story and does something to address the farce of medical treatment.
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