I Can’t Scream Because My Jaws Are Wired Shut

In April 2009, I had jaw surgery to correct an underbite (a type of malocclusion), which involved breaking both my jaws and moving them to new positions. It was my first major surgery and first overnight stay in a hospital as an adult. I ended up in the hospital for two nights. I thought I was prepared for the hospital, having researched what other jaw surgery patients went through and even talking to my friend, a nurse; but the reality was more horrific than the bad scenarios I had anticipated. Four years later, I feel comfortable enough to write about my experience. I wanted to share what happened and hopefully, to provide useful advice for those who might be facing an overnight hospital stay.

The Good Samaritan Hospital is located in Los Gatos, California, an upscale community. The hospital costs were toward the high end so I assumed that the care provided would be excellent. I believed in the principle that you get what you pay for. In this case, it was the wrong assumption to make.

The Pain Scale

My nurse friend told me that the most important thing to know for a hospital stay after surgery is the pain scale. The pain scale is a subjective rating from 1 to 10 by the patient regarding the intensity of pain being felt. It serves as a means of communicating to the nurse how much and how soon pain medication is needed. He stressed that, at pain level 5 (still tolerable), I should be asking for pain medication because it may take up to 30 minutes before the medicine is provided. During that time, the pain level will rise to 6 or 7; at which point, the pain will be at the threshold of being bearable. His advice was spot on. Unfortunately, at this hospital, 30 minutes is extremely optimistic.

I noticed that the hospital hired a lot of nurse assistants, who served as first responders to a patient’s call. Unfortunately, most of them did not speak English well and worse, they did not seem to be trained because most didn’t know about the pain scale. After pushing the call button, I had to overcome these obstacles:

1. Someone will ask over the telecom, “What do you want?” Because my jaw was wired shut, I couldn’t answer. I kept pushing the button. Sometimes, my roommate would shout, “He can’t speak!”
2. Eventually, after 10 to 30 and sometimes up to 45 minutes, a nurse assistant is sent to check up on me.
3. The nurse assistant would look at me cluelessly while I tried to pantomime the pain level with my fingers. I only recalled one nurse assistant who understood my hand signals about the pain level. The rest acted as if they had no concept of the pain system. Later on, after I managed to get a piece of paper and pen, most of them couldn’t understand because besides not speaking English well, they couldn’t read it either. I tried underscoring and circling the pain number vehemently but again, because most of them had no knowledge of the pain system, they couldn’t understand.
4. Once the nurse assistant gave up and left for help (I hoped), or was scared off by my roommate who would shout, “He’s in pain!” Unfortunately, most of them couldn’t understand what he said either. In two instances, the same nurse assistant guy came, left, and basically ignored my requests, and I had to suffer to the next nurse assistant on duty for relief.
5. After another 10 to 20 minutes, an English speaking nurse practitioner or a registered nurse would show up. The first words were “What do you want?” And because I could not respond, that phrase was repeated in a louder voice with more irritation. Eventually my roommate would come to the rescue and say, “He can’t talk!” Near the end, after having to intervene on my behavior for more than half a dozen times throughout the night, he asked, “God damn it, what the hell is going on?”
6. After the nurse understood that I needed pain medicine, if she was nice, she would tell me that she needed to get the one nurse in the entire hospital that was able or allowed to give pain medicine (my educated guess). If she was not so nice, she would just leave without saying anything. This would entail waiting another 10-20 minutes (in the hopes that they understood my need) and in one case, a long one hour wait; toward the end of which time I was in total agony.
7. Finally, a nurse would come and give me the pain medicine. She was invariably the nicest sounding nurse, but maybe that’s because she dispenses the narcotics directly into my bloodstream. Miserably, it takes about another 5-10 minutes before the pain relief occurs after the injection.

So, the 30 minutes delay is the most optimistic and the best wait time. The longest was almost one and a half hours. The average was around 45 minutes to 1 hour. Within an hour, my pain level has increased by one or two levels. Over an hour and I was writhing in pain. I now understand what it feels like when pain gets to the level that you basically live in and for pain. Your own consciousness wraps around pain and the pain consumes your very being. That’s all you can feel and all you can think about. It’s hell.

I never got my roommate’s name but I am so thankful that he was present and able to voice my frustration. I never got to apologize for being the cause of his sleep interruptions. My frustration was captured by the phrase which he kept repeating at the end and which I repeated in my mind, “God damn it, what the hell is going on?”

Well, What the Hell Was Going On?

Why were there so many nurse assistants, why didn’t they at least speak English, and why did they seem so untrained? During the first night, I remember encountering six of them (if not more). Likewise, I would encounter the same number of nurses, never seeing the same one twice. Were their shifts so short? Why didn’t they leave a note for each other saying I couldn’t talk? Why did they treat me as if I was intruding and making inconvenience demands? Why is it that as a patient, besides fighting the pain, I needed to battle for my own care?

It wasn’t just the pain medicines. It also took a lot of effort to get the ice packs. I read that I needed to ice the first 24 hours to keep the swelling and inflammation down when the body is in overdrive to address the massive injury. Then later I can switch to a hot pack to encourage blood flow and faster healing once the body is settled down. Because of the communication barrier (I couldn’t talk and the nurse assistants couldn’t understand spoken or written English), it was a struggle to get ice packs. And when I did manage to successfully communicate my needs, I was given one or two small ice packs, totally inadequate, which I had to apply myself. I remember only one instance when a registered nurse got me the long, large ice packs and wrapped them around my jaw. Eventually, I gave up and stopped asking for ice… it took too much effort.

I don’t mean to sound like I’m blaming the nurse and nurse assistants. After thinking about it, I realized that the problem is systemic and the nurses represent just the tip of a dysfunctional iceberg. It starts with the governmental regulations that are meant to protect the patient but create bureaucracies in the hospitals as a side effect; the health insurance industry, high health costs, and mandatory emergency care for the uninsured that force hospitals to cut costs by hiring a larger proportion of cheap, unskilled nurse assistants; the prevalence of malpractice lawsuits that increase insurance costs and adds additional bureaucratic paperwork; and the cost cutting that results in understaffed, overworked and burned out nurses. If we include office politics, drama, and the natural progression towards mediocrity that can be expected to exist in any human organization, we end up with quite a tangled mess.

I talked to my friend, the nurse, and he confirmed that the problem is systemic to the hospital, the administration, the hospital workers (including the nurses), and the bureaucracy necessary to meet all the regulations and to defend against lawsuits. He agrees that this applies to the government and health insurance companies and goes further to say that society itself is part of the problem. Everything results in a dysfunctional organization that barely meets the cares of its patients with of course, an often conflicting focus on making a profit.

Nurses are understaffed and thus, end up overwhelmed with work. As an example, he states that in one hospital, he had to do a mandatory round of all patients every 15 minutes, while having to do physical checkups, paperwork, and ensuring that the medication schedules were being met (the types of medication and schedule were different for each patient). Imagine doing this for a dozen or more patients and then having to do admission for a new patient (or even two). Most days, he can only spare 5 minutes to consume his lunch.

Worse, the nurses who start out caring about the patients and working hard are often rewarded with more work until they burned out or leave. Once they burned out, they just don’t care as much and just try to get by. My friend is efficient and uses his skills to find ways to do things faster in order to handle the load. As a reward at a previous hospital, he was asked regularly to take care of triple the number of patients per shift as other nurses, with the same pay. Adding to his workload, patients were waiting for him to begin his shift so they could report issues and injuries because they didn’t like dealing with the other nurses. His coworkers told him, “Don’t work so hard. You’re making us look bad.” Eventually, he had to quit.

It’s Not a New Problem!

I thought that my health care experience was a recent phenomenon, but it isn’t. I read a book titled “On Death and Dying” by Elisabeth Kuler-Ross M.D., and in that book, there was a patient referred to as “Sister I” who experienced the same problems. She said that the nurses seemed insensitive to pain; their response time was 30-45 minutes; and the nurses were cold and did not want to engage or do their job. So she set about forcing the nurses to do their job. Below are some quotes from Sister I.

• “I think someday if I ever started bleeding or going into shock it would be the cleaning lady that finds me, not the staff.”
• “And part of my making rounds with the patients in the past years was really to find out how ill they were and then I would stand in front of that desk and say So-and-So needs something for her pain and just waited a half hour…”
• “I thought it was typical of certain floors because the same group of nurses is on. It’s something in us, that we just don’t seem to respect pain anymore.”
• “I think they are busy. I hope that’s what they are. But I have walked and seen them talking there and then see them go on breaks. And it makes me furious. When the nurse goes on a break and the aide comes back and tells you that the nurse is downstairs with the key [to the medicine cabinet] and you have to wait. When that person wanted to have her medication even before that nurse went down for her meal.”
• ”And I think there should be somebody in charge of that floor that could come and give you the pain medicine, that you shouldn’t have to sweat through another half hour before anybody comes up. And sometimes it’s forty-five minutes before they come up. And they certainly aren’t going to take care of you first. They are going to answer the phone and look at the new hours, and new orders that the doctors left. They are not going to do this the first thing, find if somebody asked for pain medication.”

That book was published in 1969. I think that if one is dying from a disease, the pain felt must be orders of magnitude greater that what I experienced. I can’t even begin to imagine how unbearable it could be. It’s depressing and horrible to think that this has been going on since at least 1969, before I was even born yet.

Thank God I’m Healthy

Thank goodness that morphine makes me very sleepy. I was able to sleep through most of my stay at the hospital and I think that sleep spared me a lot of problems by reducing my need for pain medication (and the trials of trying to get the medicine).

After that nightmare experience, I am so grateful every day that I am in good health, and that my family and friends are also in good health. Nowadays, I try to exercise regularly and eat healthy (everything in moderation). I avoid taking crazy risks that might result in major physical injuries. I realize that I don’t fear death at much as I used to; I just fear debilitating and painful long-term injuries.

If I should ever be in a hospital again, hopefully I can think clearly and speak so I can be my own patient advocate. And if I can’t, I hope to have someone beside me who can take that role for me and battle the system for the care that I would need. Ultimately, in and out of hospitals, you are the only one responsible for your own care.