I’m going to be discussing my post-operative spinal surgery care today, and while this is not for the faint of heart, in response to readers’ persistent questions I’m relating what actually happened.
In fairness, since my surgery several other foreign patients have undergone spinal surgery at the Tongren Hospital, and the staff here seem to have learned from my experience, significantly improving post-operative pain management protocols.
Firstly, I think it may be important to set the stage by discussing the “culture of pain” in terms of East versus the West.
In developed Western developed, complaining about pain is practically encouraged, as this seems to offer pharmaceutical companies many opportunities to produce drugs to address a great variety of types of pain.
When people are in acute pain, as in post-surgery, there are many pharmaceutical options to alleviate the pain, at least short term, and it is pretty standard practice to work with a pain specialist before and after surgery to create a post-surgery pain plan.
In contrast with this perspective, the situation in China is quite different. In China, especially for the generation who lived through the Cultural Revolution 40 years ago, acknowledging pain is considered a sign of weakness, and pain is generally not discussed with medical staff.
I have spoken directly with many Chinese about the concept of pain, and the younger generation definitely vocalizes pain issues more freely. On the other hand, the older generation, including my neurosurgeons, grew up in an era when you pretty much kept perception of pain to yourself, and their answers to my questions reflect this stoic mindset.
I am sure there have been many thousands of Chinese SCI patients before me who underwent spinal cord surgery and experienced intense acute pain afterwards, but out of respect for their doctors they did not complain about their pain, and thus the doctors seem not to have developed an appreciation of the issue.
In the West it is pretty standard to question your doctor and his or her methods as well as to independently research your particular ailment. In China, by way of contrast, this is not the “norm” and as a general rule patients blindly trust their doctors, and especially their surgeons.
Our (Flawed) Pre-Surgery Due Diligence
In advance of my surgery my brother Mattias and Dad did question my surgical team about post surgical pain management and were assured that pain drugs would be administered.
Thereafter most of the discussion focused on my neurosurgical team’s pride in having recruited the just-retired head of anesthesiology of Kunming Medical School to personally manage on my surgical anesthesia. Thankfully, there were no issues with the general anesthesia.
I do take some responsibility for what I’m about to describe because I assumed by post-operative care they intended to use either morphine or Fentanyl — a synthetic 3x stronger than morphine.
Oh boy, did I ever come to regret not doing a little bit more research on pain management protocols here at Tongren Hospital before the surgery and, specifically, for not having asked what drugs they planned to use on me.
Bound + Gagged …
After successful surgery I was wheeled into the ICU where my family was told that they would not be allowed to visit me for the next 24 hours because I needed to rest.
I woke up in the ICU and immediately started feeling like somebody was slicing open my spinal cord as if they had not finished the surgery. Unfortunately, no one had told me that when I woke up from surgery I would still be intubated — meaning the anesthesia breathing tube had been intentionally left inserted down my throat. Needless to say, I was unable to speak, being only able to moan and cry from the savage severity of my pain.
My hands flailed frantically in the air as I tried screaming through the intubation tube, while hitting doctors and nurses left and right to signal to them that I needed to speak. I did not think they had properly sewn up my neck as the pain was like nothing I had ever felt before.
I don’t know how many minutes or even hours passed of me moaning and hitting people, but finally the staff took some sort of purple string and literally tied my wrists to the railings of the bed. I remember this vividly, as if it had happened only yesterday.
I was hysterical, but I must have passed out after a while from the sheer shock of the pain because the next thing I remember was the intubation quickly being pulled out of my throat, the strings being cut after binding me to the bed even as my brother forced his way into the ICU. I felt like they were scampering to hide evidence of an ICU torture chamber before my brother and mother discovered how they’d restrained me.
Apparently, I was making such a scene in the ICU and as they did not know what to do with me they had called up my brother and mom to see if they could calm me down. The instant after they took out the intubation tube, I was complaining and crying that the pain was absolutely unbearable.
Now, mind you, I’ve been living with severe neuropathic pain for quite some time and have a pretty high pain threshold. So, for me to complain about pain I imagine it must have been pretty extreme.
Situation gets still worse …
My family asked what kind of pain drugs the hospital were administering to me through the IV and were astonished to discover that I was only being offered ibuprofen! Crazy I know … after spinal surgery only to be given ibuprofen?!?
My family, understandably outraged, demanded that they switch immediately to morphine to get the pain under some semblance of control.
Also, my brother insisted that I be moved out of the ICU and down to the seventh floor spinal cord injury unit to my room so that at least one immediate family member could stay with me round-the-clock over the next few days.
I can’t remember if it was a day or two or three, but the pain was definitely not abating and they were claiming to have been giving me 8 mg of morphine per hour. To put readers in the picture here, 8 mg of morphine per hour would have knocked me out or caused me to start hallucinating, so clearly we were missing something.
It was only after my brother Mattias leaned really hard on the staff that we discovered what was really going on with my medication. Chinese physicians generally have an aversion to the use of morphine, and sometimes they may also cut costs by diluting drugs. In any event, a junior nurse revealed to me in the middle of the night that, yes, the morphine being administered to me had been diluted.
All Hell broke loose again … Mattias was so angry he was intermittently speechless with rage, as he has opted to sleep with me and had thereby himself suffered a succession of sleepless nights as I moaned and screamed.
Perhaps fearing Mattias might assault a member of staff (I’ve ever seen my brother so angry) the medical team changed course and the morphine pump was suddenly filled with the real thing. But this was crazy, as the 8 mg/hour pump setting had not been reset.
So I started hallucinating and seeing spiders crawling down my wall in addition to the walls melting … and my blood oxygen saturation collapsed suddenly to 70% from a reference normal 98%, leaving me gasping for breath.
I do remember asking Mattias to make sure I didn’t get eaten by the spiders.
After a few days of back-and-forth we finally got the morphine dosing cut very sharply, but we overshot the mark and then the pain returned with a vengeance.
My Dad spoke urgently with surgeons in the United States and Australian, and finally an Australian military surgeon offered battlefield triage advice on how to use what medications we had on hand at the apartment for painkilling purposes. And they came up with a “cocktail” comprised of morphine sulfate and diazepam (Valium) that worked wonders.
After about seven days I was able to go home and rest for the next few weeks.
Truth be told, I remember the exact hours after the ICU very vividly, but much of the rest of the seven days in the hospital was a blur. I think my brain shut out much of that that experience because the pain levels were just intolerable.
I have to give all the credit to my family because they stayed up with me 24 hours a day, 7 days a week making sure that I survived this ordeal.
I have had several nightmare ICU experiences before this one, and I’ve a hunch that every SCI patient probably has an equally terrifying story, so we were prepared for almost every scenario except the one we encountered.
So I turned out to have been the pioneer … the one with the arrows in her back!
But I’m past this now, being grateful simply to have survived and focusing on getting on with life and on my vision for how to put my uninjured brain to productive work as a professional trader.
Nonetheless, I encourage all hospital patients to question everything imaginable and try to assess independently what would be an acceptable standard of care. In my case, post-surgical ibuprophen didn’t cut it, and Tongren Hospital seems to have learned about as much as myself from my bizarre experience.
In conclusion, I will say that Tongren Hospital now administer much stronger pain meds to spinal surgery patients, and I have not heard of any more cases of nurses tying patients to hospital beds or diluting drugs.
Hi Ali, What a terrible narrative of what I would call a hurricane of pain and misunderstanding. It’s difficult to read, so I can’t imagine having to endure it. For the benefit of other patients and for interest, I thought you might be interested in a possible application of Arthur Kleinman’s work on Chinese experience in American medicine. To explain, have a look at this blog post I wrote about Kleinman’s 8 questions: http://www.donnathomson.com/2012/11/eight-questions-that-can-heal.html
Kleinman created his 8 questions to address cultural/medical misunderstanding in the US, but what if you flipped it and probed a little… what do you think?
hi Donna, thanks for the link. I will check it out and get back to you. How have you been doing? also, it’s always worse reading about the experience
You are a trooper Ali! You have an inner strength that simply amazes me! You are indeed a pioneer and because of your experiences many may not have to endure what you have been thru. Continue regardless! Lots of love.
Holy shit! I’m speechless
Haha…I am speechless that you are speechless.