ADVENTURES IN NEUROSURGERY

By Stephen Baron

If was a seven month saga that began in June, 2005 when I was in getting my baclofen pump replaced. Mine had stopped working about four months earlier, and my body was really suffering for it. My spasticity was terrible. After delaying the surgery from Thursday, June 10th until Friday the 11th at 11:30, I finally went in at 5 PM the 11^th. There I was under anesthesia, and a resident was carrying the new pump across the operating room, and, OOPS! he dropped it on the floor. That was only a $12,500 oops, and another $1500 for the baclofen inside it. Fortunately, they didn’t expect me to pay for it. Someone had to chase down the Medtroniics (the pump manufacturer) representative who happened to have another pump in her car. This one, however, was filled with salt water, rather than baclofen. The net result was that what was supposed to be a 1 hour procedure turned into a 3 hour surgery.

But, that was only the beginning. Neurosurgery never called neurology to let them know I got a new pump, and that they, neurology, should tiitrate it. As neurosurgery was concerned only with my surgery, they thought I was done. Accordingly, the evil discharge lady, the EDL for short, called my wife on Monday and said that according to the physical therapist, my neurologist, and me, I was back to my baseline. This was fairly amazing, given that my neurologist never examined me, and my new baclofen pump was turned up so high that I had no reflexes, couldn’t speak, and the physical therapist had examined me before the new pump was fully operational, To say the very least, there is no way I could be back to my baseline.

My wife, dutifully, got me at 10 o’clock at night. All the while the nurses on the floor were shaking their heads in disbelief. The next morning a male nurse came to evaluate me for home care. As soon as he got me into my wheelchair, I asked to be put back in bed… where I stayed the rest of the day.

Tuesday morning, June 15^th, we called the nurse practitioner who manages my pump. She said that she would look for a room for me in the hospital. Shortly afterward, she called and said the only room available was on the psych floor. Sure, I was desperate, but even I have my limits. I passed, and opted to go to the Emergency Room. After six hours, I finally got a room that was not on the psych floor.

Before I got the new pump, I had been getting 600 micrograms (mcg) of baclofen every day to keep my spasticity down to a dull roar, so they started the new pump at a more modest 100mcg per day. But, because I had been without a pump for four months, my neuro-receptors were especially sensitive to the baclofen. Consequently, the hundred mcg turned me into a virtual dish rag. In short, I was completely "noodled out:" no reflexes, no voice, and I had a depressed respiratory function.

My second hospitalization was considerably better. I had known the neurologist since my first exacerbation in 1981, when she was a second year med student. I got regular attention with almost everything. My pump was turned down twice more, even though it had turned down twice since I’d been discharged. My respiratory functions were checked, and because they were particularly low, I was taken off the study medication which controls the emotional incontinence that frequently accompanies MS. In practice, it means that I laugh or cry uncontrollably at almost anything). Checking respiratory functions, checking blood gases requires getting some blood from one of the arteries. This required a particularly nasty needle stick in my wrist. What made t it especially disagreeable is that they use a particularly large gauge needle. I’m not one to complain about needle sticks, having been poked at least a zillion times, but this was in a class by itself.

The height of my visit was when the EDL met my wife. She came into my room, approached my wife, and said "We finally get to meet in person," expecting a warm welcome in return. Instead, my wife took her out behind the proverbial woodshed and gave her "what for." Looking her straight in the eye, she said, "You lied to me, and I don’t trust you. I’ll work with you, but I don’t trust you." Subsequent reports said the EDL was visibly upset. Had my wife resorted to vulgarity, she would not have been so effective, but she had scrupulously
avoided it. This surprised me as well because I’ve always known my wife to be one of the gentlest people I have ever known. That was the last we saw of the EDL because when discharge day came a few days later, a different person did it.

I was home for almost a month, and knew the road back would be a long one, but not as long as it turned out to be. That was July, but little did I know, it was only the beginning.

In September, around the 10^th, the suture line where they put in the new pump began to look especially red and felt painful. Recognizing that this wasn’t as it should be, my wife called the neurosurgery office. Non-plussed, they said if it got considerably worse, we could go to the Emergency Room. When my suture line spurted at my wife, we decided that things had gotten sufficiently worse, so it was back to the Emergency Room we went.

The resident, Dr. Bashra, didn’t think my suture line looked especially worrisome, and suggested that I come to the clinic. As my forearm was leaning on the pump, it was prevented from spurting any fluid. When the resident presented me to his chief resident, though, he moved my arm off the pump and, as if on cue, it spurted like a geyser. Seeing that, the chief resident said I should be admitted for some intravenous antibiotics. Hence, I was admitted again.

September 11^th: After a few doses of antibiotics, I didn’t think, contrary to the assessment of Dr. Bashra, I was quite ready to go home,. Happily, I was able to prevail, and they let me stay for another few days. They sent me home with 10 days of oral antibiotics, and a follow up appointment in 4 weeks. As long as I was on the antibiotic, the suture line looked better, but a few days after I finished it, the suture line got red and painful again.

Seeing this, my wife called the neurosurgery office suggesting that I might need be seen sooner than the suggested 4 weeks. The secretary said that the earliest appointment available was December 9^th, almost two months away, but that we could always go to ER if things got worse. Feeling especially warm I asked my wife to check my temperature. When it turned out to be 99, and knowing that my baseline is 97, she decided it was time to return to the ER. Sunday, September 28^th, at 3 AM I made it to the floor. There, I was given one dose of intravenous antibiotics, but my suture line wasn’t looking any better. Moreover, at one end it had developed a bubble. The easiest way to understand this is to think of a bicycle tire that develops a weak spot. The inner tube starts to bulge, and develops a bubble. That’s what my suture line looked like. Notwithstanding, Dr. Bashra was ready to send me home.

Please allow me to interject here that Dr. Bashra gushed arrogance. He was certain that he knew more about my body than I did, so it was easy for him not to listen to my opinion. My feelings about him are so strong that it is difficult even to say his name without uttering an expletive. After all, he was a neurosurgeon, and I was just a patient. Surgeons, I am convinced, think they don’t put their pants on one leg at a time, whereas neurosurgeons KNOW they don’t put their pants on one leg at a time.

I hold physicians in high regard, but realize they are still human. To keep things in their proper perspective, I ask people three questions, "Have you ever been in a cemetery?" They, of course, answer yes. "Have you ever seen a gravestone?" Again, they answer yes. "Have you ever seen a gravestone that says, Here lies a great neurosurgeon?" Here, they answer no because none exists. We aren’t remembered for what we did in life, but for the kind of person we were, a loving father, mother, spouse, or whatever. Neurosurgeons are just like the rest of us. They just happen to have good hands, gone through medical school, and did a long residency.

I also remember that in Judaism, everyone is buried in a plain white shroud with no pockets. It is the ultimate statement of "you can’t take it with you." Rich and poor, makes no difference, all go in the same way. Shoemakers and neurosurgeons, it makes no distinction.

Meanwile,Dr. Bashra convinced the attending physician that I was ready to be discharged. Accodingly, I was sent home Monday, September 21st.

When my wife heard this, she was livid, and became uncharacteristically vocal about it. In response, the Neurosurgery Department sent an unsuspecting resident to shut up "the wife," not knowing that she graduated from medical school in 1979, and had been in practice for 21 years. The resident, Dr. Dave Packer, was a perfectly nice guy, not in the least bit arrogant. It is just that he didn’t expect "the wife" to be senior him in medicine. My wife pulled back my gown, and, with a stiff arm, an outstretched hand, and a decidedly serious glare, pointed her index finger at my bulging, red suture line and asked, "Are you proud of that? Would you want everyone to see that?" Completely taken aback, Dave muttered something of an apology. My wife continued, "When should we come back to the hospital?" To which Dave responded, "When it oozes puss from the site." Not very reassuring. The discharge orders came with a recommendation for a follow up appointment in four weeks.

As this was quite close to a Jewish holiday, my wife bundled me up with enough oral antibiotics to last through the holiday season, took me home.

That was on Sunday ,September 21st. On Monday, my suture line spurted at my wife, but, because it was close to midnight, she chose to just put two band aids on it, and go to bed. I had a fever of 99, which, given my baseline, made it significant. All was well until Wednesday. When I awoke from an afternoon nap I felt especially warm, and asked my wife to take my temperature. When it registered 102, that was cause for real concern. My wife called the neurosurgery department, and the attending physician on call happened to be someone she knew. He said I should take two Tylenol and go to the ER.

October 12^: Back to the ER we went. Having just seen me a few weeks earlier, the ER staff immediately recognized me. And, they acknowledged that my suture line was bulging and angrier than before. I was admitted and put on intravenous antibiotics. At 9:30 Thursday morning, October 13, the attending neurosurgeon came to check on me. At 12:30, I was in surgery having my pump removed. Could it have been saved? I don’t know, but I wish they had tried harder, but neurosurgeons are in the business of cutting.

But, that was not the end of the story. It seems that after surgery I developed a heavy duty infection that required 14 days of serious intravenous antibiotics. Also, because the infection was contagious, they put me in isolation. Thus, anyone who came to see me, and were planning to see other patients, had to wear a gown, lest they transfer my infection elsewhere. This did not apply to Dr. Bashra. At least that is how he behaved. For he blithely walked past the door with a big orange "X" it.

The following two weeks were specially interesting. For, not only did I get intravenous antibiotics, but I became something of an item on the floor. Because, being quadrapalic, I need someone to be fed. In hospital vernacular, I am a "feeder." This afforded me ample opportunity for numerous conversations, thus I became an unofficial counselor about everything from personal relationships to career and educational pursuits. Either way, it was a pleasure to be of some assistance.

Which leads to this story. My first roommate had a son visiting him. The son stood 6’ 3", weighed 285 lbs, and played right guard for the local college football team. Feeling my oats, (bear in mind, I am 5’ 5", 125 lbs.) I couldn’t resist the tease: "I’ll whip your butt," Almost immediately thereafter, my roommate moved to a different room. I am sure it was a result of my nasty infection, but the story of my bravado, even if it was artificial, sounds so much better.

On isolation now because of my infection, I thought I would be spared another roommate. But, the hospital had other plans. A day later, in walked Darrell. He was my age, 55, he had an interesting story. After graduating from high school, he had gotten married, and been an "over the road" truck driver for 35 years. As this involved long periods of time away from home, he allowed as there had been instances of infidelity. He found that the same was true of his wife. When I met Darrell, he had been separated from his wife for five years. No surprise.

We had many hours of conversation, most of which were not profound, but filled otherwise dull hospital time. All in all, I enjoyed our time together, as it is my wont to find something interesting about everyone. It came from being pre-law adviser at SUNY-Oswego for almost 20 years. You see, when students apply to law school, they have to write a "personal statement" that explains what distinguishes them from all other applicants. My job was showing them why they are unique. Hence I became practiced at asking questions that will most reveal a person.

About six months ago, he explained, he had been introduced to Danielle. That they were very much in love was abundantly clear. It was still puppy love, complete with all the giggling and furtive glances back and forth. All this came to fruition when they closed the curtain between the beds, and turned up the volume on my radio. After that, all I heard was a lot of heavy breathing. I won’t speculate on what went on, but they were both in a very good mood when they pushed back the curtain.. Later, when I asked one of the nurses on the floor about it, she was not surprised. She said that more sex goes on in the hospital than you would ever think. That surprised me, but who was I?

Darrell endeared himself to me because once he learned that I had written a book, and insisted on buying the only copy I had handy. I was flattered. Who says flattery will get you nowhere? I haven’t heard from Darrell since we were roommates, but I doubt that I ever will, but I will ever forget him.

Soon after Darrell was discharged, so was I, but instead of going home, I was sent to rehab at Van Doren, a nursing home/rehab facility combined. The nurses at the hospital were happy for me because they thought highly of the place. Besides, they knew that I would be on the "young peoples floor," and I would be happy there.

Van Doren turned out to be a decent place. Being a county facility, it was particularly neat and clean. On the rehab floor, the rooms were especially large and comfortable. Actually, they were designed for two people, but we were treated particularly well.

When the nurses at the hospital learned that I was going to Van Doren for rehabilitation were happy because they knew the people on my floor would be young. Calling the people on my floor "young," was not entirely accurate, for it had everything from a two year old shot in a drive by shooting, to various senior citizens. On the whole, though, they were middle age or below. It was a strange collection of ALS victims, self-induced recreational -drug disabilities, and developmentally disabled individuals. I was especially offended by one fellow whose practice was hitting staff members who were trying to help him. His excuse, they told me, was that his wife lived 30 miles away, and could only visit him once a week. That was a pretty lame excuse for offensive and abusive behavior.

The staff continually surprised me because they were very attentive to all my needs, and very respectful of all my customs. As I pray daily from a Jewish prayer book, they were careful that it was accessible. This is no mean feat because I rest the book on a reading stand, and use a mouth stick to turn pages. Notwithstanding these peculiarities, they were very careful that everything was just right. Whenever I showed up in the dining room, they checked to be sure that I was wearing my skull cap. And, when it wasn’t, they would quickly fetch it from my room.

Despite being paid barely a pittance, they were thoroughly dedicated. Two women were especially noteworthy. First, there was Pamela Quinn. Pam had worked at Van Doren for several years when I arrived. A believing, serious Christian, she was also the mother of one adult daughter. Pam was particularly attentive to my needs. Whenever I needed something, she was always there with it, and if it was not readily available, she made sure to get it. When it was time to leave, Pam gave me an especially warm kiss and hug.

The other distinctive aide was Johanna Bobbitt. Puerto Rican by birth, Johanna had been a model, a trait you could readily see in the way she carried myself. Absolutely beautiful, she had gotten out of modeling because of her photographer’s advances. Johanna was the unofficial translator for the floor. Not completely fluent in English, she was anxious to read what I had written. Of course, I was flattered, and willingly helped her read the book Sadly, we did not get all the way through it when my time to leave Van Doren arrived.

The rub came when the facility misunderstood my case. Even though I was sent for physical rehabilitation, they thought I was there for "skilled nursing care." As a result, all I received was about 20 minutes of rehab daily. This consisted of being strapped to a "tilt table," and tilted up at an ever increasing angle. After several days, I finally reached 70 degrees. Better than nothing, but not enough. In the end, I was at Van Doren for almost six weeks.

Altogether, I was in bed for almost eight weeks, and it wreaked havoc on my already compromised legs, from which they haven’t recovered yet. It is road a long road to recovery, but I’ll get there.