My personal story and journey toward health and wellness
My experience was one much like many others. I had struggled for years with an underlying neurological condition that continued to worsen day by day. As this problem finally grew beyond my control, I went back once again to my PCP (Personal Care Provider) office. After ordering an MRI, the culprit was discovered and I was sent as quickly as possible to a local neurosurgeon. Well… “STAT” according to this Columbia, SC neurosurgical office, meant two weeks. Meanwhile, I was taking Oxycodone, Flexeril and Motrin to merely shave the edge of my symptoms. Unfortunately in my area, there aren’t many neurosurgeons and the ones you do see, are apparently connected to one major group in the Columbia area.
Let’s hit rewind and go back to where this all began… It was a Friday morning. I was seated at my home office desk. I stood up to pour a cup of coffee; and that’s when it hit me. A Louisville Slugger, to be exact. Suddenly, I felt the thug and sharp pain of that baseball bat striking me in the base of my back. Holding onto the table to stop from falling flat on my face, I also grabbed my back. “Oh my God…” I thought, “What the hell just happened?” Trembling with lightening-like pain raging through my back, buttocks and legs, I knew that I had to see my PCP pronto. I managed to hand-walk around my table, crunched over like a little old lady, to get to my telephone. Dialed the number and of course, get a recording of how to schedule a flu shot. After 30 seconds of health care messages, an automated voice comes on the line, “If you would like to schedule an appointment, please press 1.” No brainer. I select the “1” and the desk clerk answers. “I need an appointment with Dr. Lyle,” I say out of breath. The lady looks through the desktop to see if there are any openings. “I’m sorry,” said the desk clerk, “Dr. Lyle is booked for today.” I explain the urgency of the matter and am told that I will need to go to Urgent Care. After listening to all I had to say, she added, “Please ask them to take an MRI.”
What symptoms? If you had asked the local Urgent Care center what was wrong with me, they would’ve told you that their diagnosis was “Sciatica”. Yes, my friend, a symptom was deemed a diagnosis. Of course the X-rays they took weren’t helpful at all. Doctor tells me that all he could see was a little arthritis. “Wow. Really?” I thought to myself. So I ask him, is there anyway something could be pressing on a nerve? Heck, I didn’t know what was wrong with me. All I knew was that I couldn’t walk and the pain was unbearable. “No,” he replied, “let’s not think it is something so serious right off the bat.” Funny… he mentioned “bat” considering that’s what I felt like had hit me in the back. After a shot of Dilaudid and a shot of Zofran to counteract nausea, he sends me on my merry way with some muscle relaxers and pain killers. The second time I went to Urgent Care (and yes, I had to go a second time because all the drugs they had given me weren’t doing the trick) the Urgent Care doctor then determined that what I was suffering from a lower back strain. Hmmm… so the reason I could not walk, could only bend at the waist to stop the suffering, and had electrical shooting pings traveling down the back of my leg from the base of my back was not at all a “diagnosis”, rather labeled a “symptom” because again, just like the first time, they refused to take an MRI of my back. So this time they gave me a shot of Demerol…yaay… NOT! Guess then I had to follow up with my PCP to figure out just what in the world was going on with me.
The following Monday morning, again my PCP is booked but they can squeeze me in on Tuesday morning. “I’ll take it.” Anything is better than nothing, I am thinking. Anxious and in severe pain, I await my appointment with Dr. Lyle. His first impression of me was written across his face. It didn’t take long for him to figure out what was going on with me. He saw me bent over, reeling in pain. In his attempt to help me immediately, he administered a steroid shot in my back, coupled with a patch of Novocain. He automatically ordered an MRI (Magnetic Resonance Imaging) of my lumbar spine and put in a referral request “STAT” to a local neurosurgeon. When I arrive at the MRI clinic, they see how apparent my physical distress is. The attendant quickly retrieves a wheelchair so that I can be seated to relieve some of the numbing pain I am experiencing. My daughter is with me, obviously concerned about what is happening to me. I am, once again, feeling weak and ashamed that I am not strong enough to counter the symptoms I am experiencing. (It had been about a decade before when I was bound to another wheelchair.) At the same time, a million thoughts are running through my mind. How serious is this problem? Is it cancer? What about my job? Will I still have one? Will I walk again? Will I ever drive again? Will I get through this? As a patient, you cannot help but wonder all the things that could go wrong…especially when you have been there before. My emotional surge was very real. I could feel this lump of sickness coming up from the pit of my bowels. “I am not going through this again,” I said to myself, “this is not happening to me!”
“Ms. Bailey-Lloyd?” the technician asks. Now I’m underway to my MRI test. The radiologist and his tech do everything in their power at the Irmo MRI clinic to make me feel comfortable. Besides the evident knocking, vibrating, pulsating, clicking and ticking of the machine, I was going to be as comfortable as could be considering I had to be flat on my back for the duration of the MRI. When the test was complete, I knew by the level of concern and care the radiological associates gave me that there was something very wrong. Carefully helping me back onto the wheelchair, the technician must have seen the look of helplessness on my face, “Your doctor will call you if ‘it’ is surgically medically necessary.” I know they are not to suppose to reveal any results, but it was abundantly apparent that something was definitely off beam. By the next day, I receive a call from Dr. Lyle’s office. I am told that they suspect disc bulges and a synovial cyst. “We are working on your referral to the neurosurgeon,” I am told. Days later, I receive snail mail of my confirmed “STAT” referral to the neurosurgeon. It will be at least two weeks before I see him. Meanwhile, I am fairly drugged up to counter the pain and numbness I am experiencing.
On my neurosurgical appointment day, I am certain to bring my MRI disc (because it is required for the appointment). I complete all the necessary paperwork – which is much more like a book rather than a patient application form. I turn it in and am automatically asked for my co-pay. No worries. I had already figured that. Then I hand the receptionist (who is one of several women) my MRI scan disc, as well as my several historical MRIs. The receptionist, in seeing this, says discontentedly, “Well we aren’t going to be seeing you for the rest of these MRIs. Today is only about your lumbar spine.” “Okay,” I respond. I just naturally assumed they may have wanted any past MRIs for comparative purposes. “Remember the first three letters in assume… duh,” I think. As I begin to look around this neurosurgical office, I notice how cold it appears to be. It’s all rather corporate these days; no personality…no warmness. Glass windows separate their barrage of “intake” receptionists – more like that of a major hospital. The difference is that this clinic is no bigger than my PCP’s office. Then I note the oversized hanging wall sign, “$25 Charge” for all insurance form completion. So now in addition to the morning’s office visit co-pay, I will have to pay an additional $25 for my FMLA (Family Medical Leave Act) paperwork. I hadn’t counted on having to pay extra but in order for me to get paid for my short-term disability (60 percent); I had to have this documentation.
Hmmm… So I wait. The waiting is unbearable. I cannot get comfortable. The chairs are impossible and I am in intense pain; my legs are going numb, too. First 30 minutes passes…then 45… finally, after roughly an hour, I am being called back to see the neurosurgeon, Dr. Holbrook (one of several). I am brought into a small patient room. I am not asked to change into a gown. I am sitting now, on the exam table. The room is tiny and cold. My other half is waiting with me. He is obviously worried about me but no verbal assurances can put my mind…or by body at ease. Fifteen minutes go by…then 30 minutes. Finally, the neurosurgeon comes out of the room next to mine directly into the room I am. “I’m Dr. Holbrook,” he says. Then he asks me to step down from the exam table. It is VERY apparent that I am having difficulty standing or walking, but he insists. Then he asks me to do the impossible, “I want you to stand on your tip-toes.” At this point I am thinking, “What the hell?” I guess the look of discomfort was written on my face. “Use the table if you must,” he adds. So here I am, in the shape that I am, attempting to stand on my tip-toes while I brace the exam table. I am shaking, trembling in pain. The “tip-toe test” didn’t go so well. Then he asks me to stand on my heels. WHAT?! I tell him, “I can’t do that.” He is now disgruntled. He asks me to get back onto the exam table. I am helped by my spouse back onto the table. I am nearly in tears at this point. He pulls out his little rubber hammer and taps me on my knees and on my ankles. He has spent about five minutes with me at this point. Then he scans over my records. “Looks like some arthritis and a little growth,” he says. “What about the bulging discs? What about the cyst?” I ask. “We’re not worried about that. There’s no compression,” he says. Then he adds, “I can set you up for a spinal injection in the office. Do you have any questions for me?” In about eight minutes flat, I am basically reduced to a thoughtless number. I am not a patient. I am just an inconvenience. No, it wasn’t my “feelings” that were hurt. It was the fact that I was treated so indifferently. Did I have an idiosyncrasy that I overlooked? Was I rude? Was I expecting too much? “No,” I responded, “I guess I’ll take the injection,” I add (I mean, what choice did I have?). Maybe I should have screamed at the top of my lungs, “You really don’t care, do you?” But I didn’t. I was raised to respect people in authority. I was raised to respect medical doctors.
Dr. Holbrook exited the room and a nurse returned a few minutes later. I am crying, almost hysterically now. Nothing can console me. The nurse appears kind. Through my tears, I tell her, “I feel like this was an absolute waste of my time and money. I waited all this time to see a neurosurgeon, who I don’t feel even looked at my MRI (How could he? After all, it was like an assembly line in that place.) And his only course of treatment was an injection? I already had one of those,” I say, trembling. Honestly, how could she respond? “I’m sorry,” she says. I then ask her, “Can I get the injection today?” I am in excruciating pain, now. I had been compelled to do the impossible in my condition – stand on my tip toes…stand on my heels. Unbelievable! “We can squeeze you in this afternoon,” she replies. I ask her, “Will this be another office visit?” “Yes,” she replies. Now I am faced with a real sense of urgency. I won’t be paid for another two days. I am short on funds. I have spent countless dollars on prescription meds, doctor appointments, and now the co-pay for this neurosurgical appointment. “Is there any way I can pay my co-pay on Friday?” I ask. She ponders a few seconds and she replies, “Yes, that shouldn’t be any problem.” I receive my referral paperwork for their “pain management” doctor to give me an injection later in the day. In tears, trembling and barely walking, I pay for the documentation. Today’s total? $65 with insurance (my insurance company was charged over $300 for the visit). Wow… all this and they did nothing for me (unless you count FMLA completion but that wasn’t even completed until the following week…and NO thanks to their erroneous filing, my disability check was shorted) but pretty much insult me. As I was leaving, I did manage to get a new RX for muscle relaxers as I would not have survived without them. I guess the $300+ covered that portion of my visit?
The ride home takes about 30 minutes. Now I have to wait until late afternoon to go back to the neurosurgical office to get the spinal injection. Hindsight is 20/20, it is said. This case is no different. My mom had warned me about this doctor when I gave her the name, “I don’t trust him,” she had told me, “there’s something about this doctor I just don’t like,” she added. That was just days earlier. But I assured her, “I don’t even know him, you don’t know him. I have to have some treatment and he is it.” Boy, how wrong was I? And that proved even truer upon my return the same day to my spinal injection appointment. I limp into the neurosurgical office. One of the staff sees me and pushes the handicap button so the door opens automatically as I enter the building. Again, I approach the same receptionist I had seen earlier. I hand her the appointment referral and reiterate that I had been given the “okay” to pay for my office co-pay two days later. She hesitates for a moment and says, “We don’t typically do that here. Who told you that?” I explain that the nurse had okayed it. She then hands me more paperwork to complete. At this point, I am thinking everything is on the up and up. About 10 minutes later, what appeared to be a nurse, came out to get me. As I begin following her to the back, she takes a left turn into a different office. It becomes apparent to me that I am being diverted elsewhere. “I am with our financial office,” she says. Puzzled, I cannot believe this is happening. I ask her why I am seeing her in this office. She explains that they don’t make payment arrangements. She further goes onto tell me that I was “mistaken” in what the nurse had told me. Long story short, this visit became a real nightmare. Now not only was I being refused treatment (the spinal injection) because I could not pay AGAIN that day, but I was also being accused of lying about what the nurse had told me earlier. I am crying beyond belief at this point. “No one here would have told you that,” she said, “maybe she was referring to the medical documentation,” she added. No, I am thinking and I tell her exactly that. Towards that end, I limped out of the office in tears; beside myself for the level of disrespect and outright apathy.
I haven’t yet filed a complaint with the medical insurance board. I call my FMLA disability company and explain the whole story to them. They are aghast. They don’t blame me for seeking medical care elsewhere. However, the problem does still remain that I still need documentation to get paid. Frantically, I begin searching for neurosurgeons. Par for the course, I see that ALL neurosurgeons in my area are attached to the group office I just visited. Jeez… now what? Now I start looking in surrounding areas. I run across a Dr. James Dillon. To my pleasant surprise, I see that he has a 90+ percentage rating (online) with his patients. This is refreshing. His office is only a little further from my residence than the one I had just seen. So I contact my PCP. I know I must have a referral in order to see him. It takes an additional week, but I am FINALLY able to see Dr. Dillon.
As soon as I came through the door, I was immediately greeted by the friendly staff, “You must be CarolAnn,” said Kay, the lone receptionist. She had a cheerful smile on her face and she took ALL of my information, including past MRI data. She handed me a small intake form, which took less than five minutes to complete. I asked her about Dr. Dillon and she told me the story about how he had personally saved her life. What an endorsement! As I waited, some patients came and went. Each was referred to by his or her name by staff. This was a nice welcome to me! Even though I was in pain, the staff at Dr. Dillon’s office went to great lengths to make sure I was completely relaxed and comfortable the entire time. Not only did they go out of their way to make me feel special and appreciated, I was made to feel like family.
After about 30 minutes, Dr. Dillon’s nurse, Stephanie, escorts me to the patient’s room. A few moments later, a very tall, older but gentle-appearing man stepped into the room. He reached out his hand to introduce himself to me and my spouse. He showed deep concern for me. He asked me several questions about how I was feeling. He asked me in depth about my symptoms. Then he got down on his knee in front of me. He placed his hand beneath my feet. He asked me to push and pull on his hands. I could only do so much, but he realized it. Getting back up on his feet, he sat back on his swivel chair. He carefully went through every page of my reports, and then he turned to me, “CarolAnn,” he said, “after looking through these reports, your symptoms and your MRIs,” he paused, “It appears that you have a growth on your lumbar spine.” “What does that mean?” I ask. He goes onto to explain that as large as this growth is that it is surgically medically necessary to be removed. “The pain and numbness you are having is a direct result of this cyst,” he added, “It is compressing the nerves.” Funny he mentioned the whole nerve compression thing. The last neurosurgeon clearly stated that nothing was being compressed. Wow. At that point, I go onto to tell him about my entire experience and how discouraged and mistreated I had been. He listens intently. Then he tells me, “Well, we are going to take care of you.” And while I was fairly scared about the surgery, for some reason, I felt reassured… a sense of calmness. I knew, in my heart of hearts, that Dr. Dillon was in fact going to take care of me. He spent at least half an hour with me and never once looked at his watch. It wasn’t about the money. In fact, I was never asked about a co-pay. When I pulled out my wallet to pay for it, I was told not to worry about that now. They would take care of the billing with my insurance and that if I needed any additional help with my FMLA, that they would be more than happy to assist me in that regard. Furthermore, Kay went onto suggest other ways of helping me in this obvious financial setback. Had I stepped out of time and back into a place where doctors actually cared?
Within a week, I am scheduled for surgery at Aiken Regional Medical Center. The staff is compassionate, respectful, informed and intelligent; and this community medical center is by far, more advanced than my metropolitan area hospitals where I reside. They automatically take a MRSA test during pre-op. This consisted of a simple nasal swab to prevent the spread of MRSA. By the time I came into the hospital on my surgery date, the test results had come back and I was cleared of MRSA, but it was determined that I was hypoglycemic. So an intravenous sugar was administered to build up my system for the neurosurgery. In just a little while, I was headed for the surgical room. No sooner had I entered was I back in the hospital room. I was sore, but amazingly…for the FIRST time in weeks, despite my obvious surgical incision and staples, I could WALK upright. I was weak, tired and feeling some pain twinges but God, was I thankful! Dr. Dillon came to see me before the surgery, after the surgery, and every day thereafter when I was in the hospital. (By the way, the hospital staff on the fourth floor was AMAZING!) Each time he came with a smile and a hug. That’s what I call compassion! By the time I left the hospital, I was in much better shape than I had been prior to this medically necessary surgery. Dr. Dillon and his very courteous and compassionate staff hold true to the Hippocratic Oath. If anyone in the South Carolina area ever requires a quality and qualified neurosurgeon, I would STRONGLY recommend him, his staff and the Aiken Regional Medical Center. My journey to wellness is just beginning, and Dr. Dillon and his staff will certainly be a part of that. I am touched by Dr. Dillon’s level of sincerity, intellect and expertise… but even more honored to have him as my neurosurgeon and physician. And through his immediate and concerned actions, Dr. Dillon has HONORED ME as his patient.
South Carolina: The Darkness and Light of Modern Neurosurgical Medicine
My personal story and journey toward health and wellness
By CarolAnn Bailey-Lloyd – Senior social media specialist, online copywriter, ghostwriter and professional blogger and web consultant
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