I am a well-known surgeon and so my story may be particularly distressing, because if a medically-savvy person like me can’t get decent hospital care, then what hope is there for the average person? (Incidentally, in my practice, before to taking any patient to surgery, I answer all of their questions and try to anticipate other issues and concerns so that the surgery and recovery will be as smooth as possible, that is, not mysterious or scary.)
On Wednesday, December 19th 2012, I underwent a four-hour, two-level (L3-L4-L5), spinal (lumbar) fusion at Lenox Hill Hospital. Prior to my surgery, my surgeon did not explain what I would experience after surgery. He did say, ” You’ll do great and be playing golf by April.”
In spite of having no advice or advance information from my doctor about my post-operative course or how long it would really take for me to get back on my feet, I did educate myself so that I could ready my house for what was coming when I got home; see the “Preparing for Lumbar Fusion Back Surgery” section below.
What I didn’t know and couldn’t anticipate were my terrifying hospital stay, my intense first week of post-operative misery, and the long, difficult recovery without significant medical supervision or support. Before sharing the story of my surgery and its aftermath, let me briefly describe my medical history.
My Medical History
As a result of an accident when I was fifteen-years-old, I suffered compression fractures of my lumbar spine. I was hospitalized and lay flat on my back for weeks. After that, I had to wear a body cast made of solid plaster that extended from my under-arms to my waist. There was no bathing with that cast, just assisted sponge baths for three months.
Within a year, I seemed to make a good recovery, and I resumed playing sports (golf, tennis, racquetball, and jogging). I did relatively well, that is, I had no medical problems again until I was in my early thirties.
During my surgical training (general surgery and otolaryngology, ENT), I became a long-distance runner. From 1975-78, I ran back and forth to work every day, about sixteen miles a day. I had a locker and shower at the hospital, and most days I just wore greens and a white coat. During that time, I ran three marathons, two Bostons and one Chicago.
Perhaps related to many years of running, in 1978 I ruptured my Achilles tendon playing racquetball, and later that that year I ruptured a lumbar disk. That’s when I had my first surgical discectomy. In 1986, I ruptured a second lumbar disk; and in 2004, I ruptured my second Achilles tendon playing tennis. Between my bad legs and back, my athletic career ended abruptly, but that was not the end of my back trouble.
Just after having moved to New York in 2006, I developed foot drop, leg weakness, and I couldn’t walk. I had ruptured another disk, and that lead to my third back surgery. I recall looking at an x-ray of my lumbar spine with a sinking feeling; my L4 vertebra was obviously very crooked, more so than the leaning Tower of Pizza. As soon as I saw that, I knew that I probably would have life-long, life-altering back problems.
Over the next few years, things did get worse. I had severe degenerative spine disease with an unstable lumbar region leading to chronic back and leg pain. Between hard pavement and uneven sidewalks, walking in New York exacerbated the leg pain. Furthermore, the degenerative process involved the foramen (openings) for the main nerves to my left leg. After walking a few blocks or sitting in a concert or movie, the pain was severe.
To get some relief, I sometimes laid down on bathroom floors at restaurants, in the foyer of my box at Carnegie Hall, or wherever I could. With lying down and stretching, I could temporarily distract my encroached leg nerves affording me temporary relief. I had my fourth back surgery in 2008 to open the neural openings for my left leg. This helped for about a year.
In 2010, I began an all-out effort to rehabilitate my back in an attempt to avoid having a spinal fusion. I did weekly yoga and acupuncture; I stretched and swam daily, and I lost twenty-five pounds. I also tried craniosacral therapy and steroid injections, all to no avail. After almost two years of focused back work, in consultation with my orthopedist, I decided that a two-level lumbar fusion was my best hope for living a normal life with relatively normal activity.
Preparing for Lumbar Fusion Back Surgery … and You Need To!
Remember, I am a surgeon so I have a theoretical advantage in planning my own surgical experience. Here are the most important things that I did in preparation for my surgery.
First. I did not want to have post-operative constipation, as it would stress my back and cause pain; and I knew that I would probably be on narcotic analgesics such as Percocet or Codeine that can cause severe constipation. So, a full week before my surgery, I began eating more roughage, e.g., organic bran cereal, fruit, and salads, as well as take stool softeners. Specifically, I took three Ducolax before bed with a tablespoon of mineral oil, and three Colase first thing in the morning. I also bought a large bottle of Milk of Magnesia and Senecot if I needed even more help after the surgery.
Second. I knew that I would not be able to bend down to pick things up off the floor, and so I also ordered some special items: two graspers, one blunt-ended and one with suction-cup things on the ends, as well as a two-foot-long shoehorn.
I reorganized the locations of my daily-routine items such as toiletries, medications, etc. Everything was placed at waist-level or higher. For the bathroom, I also purchased a shower caddie so that shampoo, conditioner, and soap would be reachable.
In the bedroom, I moved a waist-high, four-foot-long table next to my bed, and it I placed a bedside lamp, remote controls, a laptop, paper towels, Kleenex, hand cream, lip balm. etc. Similarly, I set up a similar area around the couch in my living room. In the kitchen, essentials were placed on a countertop. I planned to use one 39 gallon trash bag each day, hung at chest level, and in advance, I asked my doormen to come to my apartment daily to collect the trash.
Third. I knew that I would need help when I came home from surgery, so I worked out a schedule for friends and family to be with me every day. Also, I had one person who was a cat lover who would come in and play with my cat, feed her, and clean the litter box.
All in all, I planned the best that I could. I prepared for being relatively helpless. And let me reiterate, none of the above ideas or information were provided to me by my surgeon or other ancillary staff.
My Surgical Experience
I had a two-level (L3-L4-L5) lumbar (spinal) fusion performed at the Lennox Hill Hospital on Wednesday, December 19, 2012. After the surgery, I think that my surgeon told me that everything was great. That day, I was on an on-demand morphine pump for pain. In my experience, that pump doesn’t work that well, but at least you don’t have to ring for a nurse to get your pain medication. I remember getting out of bed and walking in the hall that evening.
Thursday, my first full postoperative day, my doctor came by early in the morning for a visit. He looked at my back and told me that all was well. Had I passed gas? Maybe. But by noon I was aware that my GI (gastrointestinal) tract had completely shut down. I tried eating some cereal, but I could not swallow, stomach acid came into my mouth, and my abdomen had begun to swell.
I also discovered that I had cuts (inside and outside) my upper lip, which bled when I touched them; I could not be certain where they came from, but I presumed from the anesthesiologists nails. (Maybe I did that to myself as I awoke? No, I don’t have any nails. I always cut mine extremely short.) It took ten days for these cuts to heal.
That first day, no one listened to my lungs (or abdomen), and I never saw respiratory therapist, but a nurse brought me an incentive spirometer to help expand my lungs; I used it often. I never saw a physical therapist or a resident either that day, but the pain management team came by for a 30-second visit. I was switched over to oral pain medications. Interestingly, they never took a history or asked my about my experience with pain medication. I was placed on Percocet (two every six hours), with morphine shots, too, and a muscle relaxant (Flexeril).
As the day wore on, my GI tract problem worsened to the point that my abdomen was distended; I looked pregnant. I showed my nurse and was reassured that things would be okay soon. Throughout my hospital stay no one ever examined my abdomen. They all asked, “Passed gas?” like it was a rhetorical question that required no answer.
Despite my inability to eat, I continued to get regular meals. In fact the only people who made frequent visits to me were from the dietary department. With precision, they came before every meal to ask which entree I wanted; there was usually a choice of two or three to choose from. I got a great-big tray full of regular food three times a day even though I never ate any of it. Throughout my entire hospitalization, most of those trays went back untouched. No one seemed to know or care that I was unable to eat and that my GI tract was not working.
I also had a low-grade fever and symptoms of a urinary tract infection including burning on urination, frequency, and urgency. A medical consultation was put in, and I gave a urine sample for the lab to analyze.
That evening at about 10 p.m., seemingly urgently, I had to go down to the x-ray department for x-rays of my back. I didn’t know why. Immediately, I became very concerned. Was my low-grade fever a sign that my surgical site was infected? What were they looking for?
They brought me a wheelchair that was like a bad joke. It was constructed of a few metal tubes with wheels. There was no back support and there was no way I could comfortably sit on it. I thought to myself, “Has no one ever asked, or actually figured out, the best way to transport a fresh back-surgery patient to the x-ray department?” I tried to get in the ridiculous chair, and then announced, “I am not going anywhere in this.” Eventually they brought an old-fashioned, over-sized wheelchair. Apparently they kept that one around in order to transport really obese people. I snatched a couple of pillows for my back, and away we went. The x-ray was done quickly, and I asked for the results. Was everything all right? The technician didn’t know. Nevertheless, because I was in pain and could hardly stand up, I think that she took pity on me; and so mercifully she walked me back up to my room.
Again, a few hours later, I asked the nurse to find out if my back x-rays were okay. “They’re not in the system yet,” I was told. As a matter of fact, I was told that the next day, and the day after that. Even Saturday at the time of my discharge, I was still unable to get anyone to tell me if the results of my x-rays were okay. You know, like all patients, I was thinking that something must be wrong. It would have been nice for someone to communicate with me, to let me know if all was well or not. Communication? None!
Now comes the really scary part: Later that (Thursday) evening, I was still in pain but afraid to sleep. I was especially concerned about the Flexeril in combination with my narcotics. Indeed, half a Flexeril put me to sleep immediately. I was seriously concerned about the possibility of having a respiratory arrest and dying. Consequently, I demanded to have a pulse oximer (an oxygen monitor), and I re-hired my first-night, private duty nurse at night to watch me and to awake me if I stopped breathing. (People die in hospitals because they stop breathing. This is called a “respiratory arrest,” and guess what usually causes that? Narcotic analgesics. Unfortunately, this happens fairly commonly.)
Without oxygen, after half a Flexeril, when I started to fall asleep, I noticed that my oxygen saturation would fall into the low 80s, which is not good. So, I used oxygen all the time at night, and I specifically asked my private duty nurse to monitor my respiration. I believe that had I taken all the medication as prescribed by the pain management team—I stopped taking the Flexeril—I might have died. I already knew that I had Percocet toxicity; remember, my GI tract was shut down.
On Friday, post-operative day two, my surgeon came in early, but I was too overmedicated to have a meaningful conversation. After he left, I remembered the back x-rays and my abdominal distension. Had I passed gas? I don’t recall what I answered but my GI tract remained shut down. Still, I got three big square meals a day; I tried eating a little cereal but it just came back up.
That afternoon I got my wish to see a physical therapist. As I was walking in the hall, from afar, I got a smiling thumbs-up, “Walking. Good job. I’ll sign you out.” That apparently was my physical therapy consultation. Wait. What about my questions? What about walking, how much? Sitting? Best position for sleeping? Stretching? Bending, how and how much? Rolling over? I had questions that were never addressed. I never had any physical therapy or even a face-to-face meeting with a therapist.
I was discharged on (Saturday) post-operative day three, just an hour after my surgical drains were removed. I was sent home without any home care. No surgical wound care. No home-health nurse. No social worker. No physical therapist. No physician.
But my GI tract was still completely shut down. I had not had a bowel movement in four days. No one was concerned about my GI tract and no one knew there was a problem? Indeed no one ever laid a hand on my abdomen. Was no one was concerned about Percocet toxicity? Was no one was concerned about my continuing care?
By the way, retrospectively for my almost three days in the hospital, I took more medicine, and similar medicines—Percocet, Flexeril, and morphine—than killed Heath Ledger). In truth, my total face time with pain management during my hospitalization was less than a minute.
As I was on my way out the door on that Saturday, with a black car waiting, engine running, I put on a back-brace that had been supplied, and I thought I had broke one of the strings. Since it was almost the holidays, I wondered if I could get a replacement. Standing at the front desk, the unit secretary offered, “Let me call Sarah, the orthopedic resident; they may have a bunch of those belts in a closet somewhere.”
I waited as long as I could stand and finally went and sat on the only chairs that were by the elevator. Soon thereafter, a young woman got off the elevator. When she was right next to me, I smiled and asked, “Hi. Are you Sarah, the orthopedic resident?” She walked by me without acknowledgement. She heard me but chose not to respond. I wondered why.
I waited a couple of minutes, and then I proceeded around the corner. The young woman was talking to a nurse about a patient’s orders. She did not look at me. It was apparent that she was trying hard not to engage me. Her body language said, “I will get to you when, and if, I am ready.” Finally, I interrupted, “Excuse me, are you Sarah, the orthopedic resident? Did not you not see me? Did you not hear me? You walked right by me at the elevator?”
She responded, “People do not usually call me that.” I responded, “Well I am Jamie. I am a well-known surgeon named Jamie, and my surgeon is David. You know David? And you are Sarah, the orthopedic resident, are you not?”
Glaring, she owned up to it. She was clearly pissed off that I did now call her “Doctor,” and it was also clear that she felt imposed upon. I asked about my broken belt and she told me that she could do nothing. She then turned back to the nurse in a rude, completely dismissive manner.
The orthopedic resident, Sarah, was completely without any concern for my welfare. Her haughtiness and disdain for me were extremely inappropriate. My parting assessment: “Sarah, you are a snotty bitch without one inch of compassion or humility … and you have no right being in medicine.” The Sarah experience was/is my last memory of my Lenox Hill Hospital stay.
Oh yes, guess who actually signed me out of the hospital? SARAH! She was the person who filled out my PATIENT INDIVIDUALIZED DISCHARGE PLAN and signed her name to it. Her discharge plan for me? The discharge plan Sarah signed said, “Regular Diet,” even though my abdomen was distended and I could not eat. The discharge plan that Sarah signed said that I could “Shower” and should have “Dressing changes every 1-2 days,” even though, I had no visiting nurse, no dressing supplies, and no way of changing my dressings.
Finally, the discharge plan that Sarah signed said, “Outpatient Treatment plan discussed with patient.” Whoa Sarah! That is a lie. I never saw you until the very unpleasant confrontation as I was going out the door. Sarah signed me out without ever seeing me or talking to me. Isn’t that fraud, misconduct, and malpractice?
To put this entire horrendous experience in perspective, I am a surgeon. Under no circumstances would I ever take care of a patient the way I was treated. Had those people who were involved in my care worked for me in any capacity, they would all have ended up being fired.
Home Self -Care
I had major surgery and was simply left to fend for myself. After I got home on Saturday (still post-op day 3), I started myself on an antibiotic for my urinary tract infection. All of my classic urinary tract infection symptoms cleared within two days.
On Sunday (post-op day 4), my first full day at home, my GI tract was still completely shut down. I had not had a bowel movement in five days. I decided to stop all of my pain medication. I couldn’t take anything! Narcotic analgesics had got me in this sorry state. Non-steroidal anti-inflammatory medications might lead to bleeding or slowed healing. And so I was stuck.
The pain was unbearable. I could not walk. I could not stand. I could not find any comfort. For three days, the main thing that I did was moan. I also took milk of magnesia, bran cereal, and a special fresh yogurt from a health food store. After three days of intense, mind-numbing pain, on my seventh post-operative day, I had a bowel movement.
On Monday morning (post-op day 5), I had yet to shower and I and needed a wound examination and dressing change. I called the Long Island Jewish (LIJ) home health nursing service and told them that I needed someone to check my back and change my dressing. They told me that it was $100 per hour with an eight hour minimum for a home nurse to visit me. $800 for a dressing change? There was no discussion of my insurance, etc. I hung up and then called my vacationing surgeon’s junior associate and insisted on being seen at his office for an examination and dressing change.
I took a car up and back, an uncomfortable and expensive two hour trip. The doctor changed my dressing, and offered more pain medication. I declined. Since there was significant drainage on the gauze sponges that were removed, I asked to have supplies to do my own daily dressing changes. I would remove the dressing before showing, prepare a new one, and then have a friend stick the new one on my back after it was dry.
New Leg Pain & Learning How to Walk Again
From the time I got home, and in spite of pain, I was active. I made sure to change positions every 45 minutes, and I walked several times a day. I was surprised that on the evening of the 9th post-operative day, I began to experience intense new, burning pain in both legs. Both legs? Before surgery, my pain had been mostly left leg, my right had been fine! And indeed, this new pain was very intense, more on the right than the left, and I couldn’t sleep. I tried taking a pain pill to no avail. The night pain was terrible and it evolved to be persistently worse on my good, right side.
When I went to my doctor to have my staples out on the 11th post-operative day, looking at the x-ray that he obtained that day, he noted that my pelvis was tilted. Had it always been like that he asked? I didn’t know. He told me that this just was probably just compensatory for my back pain. He also told me the leg pain was related to the surgery, that the nerve roots to my legs had been stretched by inserting spacers between the vertebrae. I asked to be started on gabapentin (Neurontin), and I am currently still on it (now six weeks after surgery). The gabapentin, which is for nerve pain, helps.
The day after my doctor visit, I called a physical therapist on my own, even though no referral was made for physical therapy by my doctor. The therapist quickly noted that I was tilted to the left when I stood or walked. We began therapy and exercises to correct this problem (and we are still at it). But more is now clear to me.
Since my spine surgery, my gait has changed completely. For years I was slightly bent over walking, but after my surgery, I was upright enough to carry a book on my head. My posture and hence my gait changed. Since my spine angle has changed, I have found that I push off my toes differently and that I use my lower extremity muscles differently (my calves and especially my thighs and butt muscles).
There is no question that I am learning a new gait, a new posture, a new way of walking and standing. Having a good physical therapist is important for all that. Interestingly, this issue of posture and gait change is seldom discussed; I couldn’t find much in the literature. Even the Hopkins article The Road To Recovery After Lumbar Spine Surgery doesn’t mention it. In the future, these kinds of issues should be addressed by the surgical team both pre- and post-operatively.
As of this writing, I am six weeks post-surgery. I assume that my actual surgery went well and that it is just a matter of weeks before I can walk without any pain. In truth, I have no idea how long my recovery will take. I am still struggling.
The Unbearable Cost of Spine Surgery
I got the bill for my surgery, just the hospital bill, not including the professional fees of the surgeon, anesthesiologist, and others. The bill for the surgery was $147,378 just for the surgery. I was shocked to see that almost $100,000 of the bill was for the two titanium plates and six screws that now reside in my back.
Titanium is not a rare substance. Titanium screws that cost $9,346.05 each for my back cost $1.50 or less at any hardware store. It is impossible for me to believe that the two titanium pates (at $20,825 each) and the six screws—one was more, $15,225—cost almost $100,000. This kind of amazing bill, a joke to most normal people, is real. There is some humor; hand-stamped on each of the ten pages of my itemized hospital bill is:
To Whom It May Concern:
This billis true and correct and each of the items
shown hereon was necessarily furnished or
supplied and the amount charged therefore is
the fair and reasonable value thereof.
LENOX HILL HOSPITAL
I was actually more shocked when a few days later I saw what my insurance company (Oxford/United) had paid Lenox Hill Hospital; they paid $99,000. How does this happen? How much corruption and collusion could there be that would allow an insurance company that balks at paying for an inexpensive medication for a patient to pay almost $60,000 for six screws?
Wow, I have seen my surgeon’s bill—I do not believe that I am supposed to see that one as I am quite certain that he will take what my insurance offers without balance billing me—it was $103,232. I wonder how much they will pay him $50,000, $60,000, $70,000 … maybe more?
The total bill for my back surgery will be in excess of $250,000, and that for really poor medical care! What these bills and their payment reflect is a corrupt system that is out of control; see Bloomberg: Highest-Paid U.S. Doctors Get Rich With Fusion Surgery Debunked by Studies and Newsweek: This Won’t Hurt a Bit.
American Healthcare is in a sad state. Big change is needed. The patient has gotten lost in corporate healthcare, which is driven by the profit motive above all else. I suspect that my surgery that cost more than $250,000 at Lenox Hill would cost about $10,000 in Sweden (for better care).
Times have changed. If you are having major surgery at any hospital, you need to have a patient advocate on and at your side 24/7. Even though I was heavily medicated, I attempted to be my own advocate (rather unsuccessfully). Your advocate needs to ask and demand answers to key questions and issues. S/he could be a family member, or alternatively, you can actually hire someone. A squeaky wheel still gets oiled first. Without a medically-sophisticated advocate at your side, you are at risk … as I was.