Remembering Pain

I've been thinking a lot about pain recently, physical, psychological and even what I would call spiritual pain. I've experienced all these in measure. In the late 1990's I had a procedure to correct a congenital defect in my chest wall (basically my sternum was crushing my heart and lungs together, which is not really a good thing). It's called Pectus Excavatum and used to be corrected by opening up the entire chest cavity, removing a portion of the ribcage altogether, reshaping this and then putting it all back together again (the Ravitch Procedure). This is, of course, a very invasive operation. However, were I to do this all again, it's what I would opt for. Instead, I had a newer, minimally invasive procedure (the Nuss Procedure). The Nuss Procedure has the benefit of only two small incisions on either side of the chest; much less surgery time, blood loss and all the related risks. The surgeon places a curved steel bar under the sternum and inverts it which pops everything into the correct place (sorry, 'pops' isn't the best word to use there; there are not a lot of good colloquial words to use when describing orthopedic surgery that don't involve some cringing). The bar then stays in place for a year and a half to two years whilst the bones learn their new shape. 

This all sounded well and good; but I was among the oldest patients to receive this relatively new procedure at the time (optimal age is in the early teens). In my 20's, the bones and connective bits had already hardened to their adult form. Unfortunately, this meant the procedure itself and the recovery following were painful...extraordinarily painful. 

I'm going to post below an extract from a letter I wrote to friends a couple weeks after the surgery then follow up with some other thoughts on the nature of pain and recovery. I'm thinking about this for some other reasons now that aren't related but there are a lot of things that I haven't shared about this particular procedure that might be useful for people in the same situation I was in.

I'm beginning to taper off on the meds now and can actually sit down and concentrate for more than a few moments. After eating only narcotics for a week and coming home to the same, one's mental state is altered slightly left of normal. I had planned a reading list for the hospital stay but found I was unable to concentrate at all on words (actually, in the hospital, the words would not stay still for me to read them.) If some of this letter makes no sense, I place full blame on modern medicine.

It is 9:36 a.m. right now; two weeks ago today I was in the O.R. having a fourteen inch steel bar run across the width of my chest under the sternum. Within the hour I will wake up in the recovery room in an extraordinary amount of pain. Fortunately, I remember nothing from the recovery room. Apparently I woke up and began violent convulsions; they gave me pain medication called Demerol (Pethidine) which I reacted to and went into respiratory depression (my breathing slowed way down). A couple hours later I remember waking up in my room with the doctor standing over me saying that the surgery was successful and he was pleased with the results...and, yikes, I was still in a lot of pain!

I had an epidural tap to reduce the bulk of the pain. An epidural is similar to an IV but it is inserted in a space along the spine. It has to be placed very precisely. When I woke up, instead of my chest being numb, my arms were asleep. Somehow the end of the tap had been misplaced after the surgery (perhaps when I was trying to launch myself out of the recovery room) and the drugs weren't reaching the right set of nerves. So the pain team (led by Dr. Napoleon Burt--if you need pain management, he is the man) set me up in bed (aaaaarraraaag!) and repositioned the tap. They were pumping a morphine derivative called Dilaudid (Hydromorphone) in the epidural. I was a little concerned about having narcotics pumped into my system but am exceeding glad of them. I had 10cc/hr. through the epidural and whatever else I needed for "crisis pain" injected through my IV of some other form of morphine. Even after that I was really in agony sometimes. The first few days had some gruesomely painful episodes. On the first day Dr. Burt told me that I had chosen one of the top three most painful surgical procedures to undergo (somehow nobody mentioned that bit-o-trivia beforehand.) It was not the movie kind of pain where a hapless character has his legs bitten off by a creature from the 8th dimension and screams out the big cinema cry of pain. It's this pain where you can't cry or scream or move to release any of the psychological pain that the mind is going through as well. I found names for the different kinds and levels of pain. There was the always the sore tightness across my chest (almost as if someone had gone in with a metal bar and stretched out all the muscles and bones). The most frightening time was the ten minute window I had before the onset of crisis pain. There was a certain pain that would begin and build into the feeling of someone carving off my chest with an old electric turkey knife. Once that pain began, there was no going back to the base level without a lot of drugs. I'd call for the nurse immediately and she would shoot a dose of morphine into my IV. Oftentimes that was not enough though and I'd just be there in bed writhing. The next step was a heavy dose of Dilaudid; as this is a really powerful opioid, it would knock out feelings of anything for an hour or so. The problem with that drug was, once it was administered, my breathing rate would slow down to 10...7...4...3...LOUD ALARM...breaths per minute. It begins to shut down the involuntary reflex centers of the brain. So my pain was gone but I would have to think "breathe, breathe, breathe." If I dozed off the LOUD ALARM would sound because I was forgetting to breathe.

After a few days the pain team was able to generally regulate my discomfort and it came time to remove the epidural tap...perhaps we should have left it a bit longer. By the way, it was a little celebration every time I had another tube taken out. I had the regular IV, the epidural, a catheter for (well, you know), a tube in my chest to drain out extraneous fluids and air, and various sensors attached for monitoring cardiac and respiratory function. Once I could get up, it took several minutes to disconnect me from everything and go to portable mode. Even then I was trolling around with the IV stand in one hand (the IV and epidural pumps were these hi-tec computerized deals) and this clear bag-o-pee in the other while all these wires from the sensors trailing behind.

 This is the bar that was in my chest; there was a smaller stabilising bar running vertically as well  .

This is the bar that was in my chest; there was a smaller stabilising bar running vertically as well  .

Then the epidural was removed (Saturday). The idea is to put the patient on the medication he is to go home with and see how he does. I didn't do well. The first line up of medications made me really nauseous (I say really nauseous because they we giving me an oral anti-nausea medication along with one in my IV and a patch behind my ear--I was still vomiting up the works.) Also note that I hadn't really eaten till then either; I was puking Canada Dry ginger ale and Jell-O. I didn't realize that one can actually projectile vomit (launch vomit with ballistic force across the room). I soaked down Dad and a couple nurses more than once. Of course, it was exceptionally painful to vomit; it felt like somebody punching my right in the sternum. So we got on this cycle of medication, nausea, vomit, pain, medication...at some point someone inadvertently ordered another dose of Demerol, the painkiller that I reacted to in recovery. My skin turned red up the vein that my IV was in and I began breaking out in these fiery blotches all over. We couldn't figure out exactly which of the meds was causing my nausea; we kinda found out when I took a 400% dose of one and had an upchuck frenzy. So we switched around several of them and tried this anti-nausea medication used for cancer patents taking chemo (Zofran, take one pill every 4-6 hours as needed...5 pills, $148!).

I didn't leave the hospital till one week after the surgery. Even then I was still sick (I don't remember the ride home) and uncomfortable all over (my bowels went to sleep--ever go a week without, eh...). I don't remember a lot of what happened during the stay; I was heavily medicated most of the time. For several days afterward, I could taste medication and was still hallucinating (whoa, had some wild times with that too). Fortunately, I'm tapered way down now on the medication and have a voracious appetite. I'm back home in WV at my parents for now. I'm still generally sore and can't lie down flat but every day marks an improvement. I have breathing exercises and am gradually going up to my expected capacity (I'm at about 1/4 right now). The lungs have to be trained to use the extra space now provided. The bar seems to have stayed in place; except I can occasionally hear a click-click where the metal and ribs are still making arrangements for living together. And, of course, I no longer have this big dent in my chest. I'm still rather slim but much more aerodynamic now.

There is more to relate about coming to terms with the everyday pain I experienced over the next year and a half with the bar in as well as what medications can do and how that can effect one's perception of pain and recovery. I'll write more about that in the coming weeks.