It is good to be back and well enough to start getting back online. I wanted to write about my experience with the spinal fusion I had on March 23rd, and then the subsequent hospital care I received. It is my hope that anyone facing this surgery might get a little bit of insight into what to expect during the entire procedure - from pre-surgery testing to going home.
This is pretty long, but if it helps anyone to be a little less nervous then it was time well spent writing.
Hospital : OHSU, Portland, OR
Surgery/Admittance : March 23, 2012
Hospital Release : March 28, 2012
THE DAYS BEFORE SURGERY
I did all my pre-surgery testing at the Center for Health and Healing, or CHH, down by the waterfront. It was super easy to get to there by streetcar, and it seemed like they could do every kind of test you could possibly need right there (from blood work to bone density scans to MRI’s). Overall, it was a wonderful experience with the staff and the testing, and I really liked the online OHSU MyChart webpage access and also the iPhone App that let you look up your own test results as soon as they were in. This was very cool and a helpful thing for patients, especially for those like me whose fears get allayed quite a lot through the acquisition of knowledge, plus it also helped me ask more intelligent questions the next time I saw a doctor.
Also, CCH made it very easy to make appointments, and by using their highly integrated computer system it was very easy to schedule multiple appointments on the same day. They were also almost always close to being on time, friendly, and very knowledgeable. I can unquestionably say that the online information access and the technology used by OHSU is a huge appeal to me, and it is a big factor in my deciding to use their services for future needs I may have.
Just a few comments:
1) Kate from Dr EDITED was especially great at explaining what was going to happen. For a non-medical person like myself, I really understood what was going to be done to my spine by the time she finished showing me everything using both the scans and with the help of props. She also didn’t make me feel hurried, was really helpful, and this was an overall very good experience.
2) Getting the MRI was the worst test for me, by far. It was just incredibly painful … unbelievably so. Annoyingly, as a patient, I wrote on the paper that I can’t lay on my back for long periods of time and I also verbally told the tech that too before the test started, but she kind of ignored me and acted like I was just like everyone else (that I just needed a pillow under my knees and I would be fine). By the time I got out of the machine after the 30 minute MRI, I was in total agony and almost in tears. It was so bad I was barely able to walk back to the changing room.
To add insult to injury, the tech offered me no help either getting up off the table, unknotting from the pain, and even seemed kind of impatient for me to start moving back to the changing area. She never said a word or acknowledged in any way about the obvious pain I was in. In the changing room I just leaned against the wall and shook for 5 or 6 minutes as I tried to get through the worst of the waves of pain.
I feel like this was pretty unnecessary treatment for a patient with as severe of back problems as I have/had. I didn’t know if I could take a break during the test or what? Nobody offered me any options or even some kind of medication to take before the test so that it would have been more bearable. I also think the tech ignored what I wrote on the form, which is frustrating as a patient.
3) The full spine X-Ray, the CT, the DEXA scan, and the leg blood clot tests were easy to take and had very friendly techs. The X-Ray & DEXA staff took the time to show me the images and explain what everything meant (which I really liked, as I said more information always makes me feel safer).
MORNING OF SURGERY
I arrived around 5:30am for check-in. Little bit of a weird confusion at the front desk, but it worked out ok. After doing a little pre-check in and some financial stuff, I was led back to a pre-surgery area and given a gurney to sit on and I changed into one of those embarrassing hospital gowns.
It reminded me of a number of years ago when I had gotten a tummy tuck surgery at a Eugene facility. At this place, the pre-surgery area was much nicer than OHSU because they had these super comfy big chairs you sat in (no hard gurneys), and the gowns you wore had this air intake thing where you could pump in warm air to keep you really comfortable. It was just a much more pleasant area for patients, although to be fair the one at OHSU was ok, just not as nice as the one in Eugene.
I sat around after changing for an hour or more without much going on. Patients around me had lots of activity, but not much was happening with me for what seemed like a long time.
Then a check-in nurse arrived and everything started happening all at once. I answered tons of questions, talked to three different people from Anesthesia (which was really reassuring), and Dr EDITED surgical nurse also stopped by. I was a little sad/worried that Dr.EDITED never stopped in just to say hi before surgery, and I actually don’t remember seeing him in the operating room either before we started. But I was pretty loopy by the time we got there, so I can’t swear he didn’t talk to me before surgery.
Something really positive needs to be said here about the Anesthesiologists I had. There was one student, one male doctor with the kindest mannerisms, and this wonderfully fun and interesting female anesthesiologist who was, I think, from Hungary. She was such a hoot, her whole demeanor and how she talked to me and the others present made me feel very, very safe about the anesthesia. One good example is when the three of them were all talking together about what they were going to do to me in “doctor-speak” and I remarked “I have no idea what you guys just said”, at which point they stopped and really took the time to explain what they were talking about (it had to do with the speed of certain drug getting out of the system for most people, versus the risk of it staying a really long time with a very small percentage of people). I can’t express how much better I felt when people would explain things to me.
They also gave me a shot here to relax me, and boy-oh-boy did that ever work. I felt high as a kite after that shot, super friendly and very un-nervous and happy. Definitely a happy drug.
INTO THE OPERATING ROOM
I’m next wheeled into the operating room and things seem to be happening very quickly. My first impression of the room was, well, it looked like some kind of high-tech mechanics garage or something. I didn’t see a bed for me, and there was a lot of weird, industrial looking equipment around. I’ve had surgery before, and my impressions from those times were of delicate electronic gear everywhere surrounding a bed. But this time it seemed like they were going to build something (which I guess in a way is true)! I know that this is a strange impression, but that is what I thought.
I don’t even actually remember going to sleep. I have no memory of being asked to count backwards or anything, I sort of vaguely think someone asked me to breath in something and then I just was out. The next thing I remember is waking up, on my side, outside of the operating room.
I woke up in complete peace and feeling just fine. As I mentioned before, I’ve had surgery in the past and waking up was always one of the hardest things for me. Like a scary and confusing climb out of a nightmare, usually combined with nausea. This time, though, I just seemed to wake up all at once feeling perfectly fine, like I had rested wonderfully.
From my perspective, the anesthesiologists at OHSU deserve some kind of super doctor recognition for how well they handled my surgery. I never one time felt the slightest nausea, confusion, or any weirdness from being put under, and that is just unheard of for me personally in my medical history. Thank you, thank you, to all of the anesthesiologists for that from me ☺!
Unfortunately, when coming out of anesthesia I apparently had a bit of unexpected trouble from my heart. It had developed an “arrhythmia. So I was actually kept there in some kind of small room while a very intense dark haired guy from (I think) the cardiac group came down and did an ultrasound of my heart. It turned out to be fine, no heart problems found that I know of, but they wanted to be sure.
One really nice memory during this time was talking to the nurse who was monitoring my pain while we were doing the whole heart test stuff. She was so friendly, and we talked about all sorts of things related to future career plans and about working in the sexual assault recovery field (which is an area where I have been a long time volunteer and where I want to work professionally in the future). Whoever this nurse was, I just wanted her to know it was so great to talk to her during that long time we spent together waiting for the test results on my heart.
HOSPITAL ROOM – Evening of Surgery Day
I was transferred upstairs to my room fairly late due to the complexity of the surgery and the heart test stuff. I remember the bumps hurting a little while I was being moved, but they had this really helpful pad under me that transferred me from the gurney to the bed that worked smoothly and didn’t cause much pain. A little while after being in my room, they came down and rolled me to the CT scan area for a quick check of the fusion. I remember the staff member who was rolling me along joking with me, and he made it a really nice experience keeping me distracted from the pain.
During each of the 8-hour shifts in the hospital, you normally got a main nurse plus a CNA assigned to you. For that first shift my nurse was named Nia and she was really terrific - kind, responsive to my pain requests, and super friendly and easy to talk to.
I was on the neurosurgery floor, in a private room that was pretty good sized, and had a nice big window. Since I was still pretty out of it from the surgery, I didn’t feel a huge amount of pain this during this evening, just some occasional jabs and throbs from my back that were being managed well by my nurse.
I don’t know if it is just OHSU, but pain management seems to have come a long way. I remember that it used to be that pain meds came every 4 hours, and now they have dropped that down to every 3. This is wonderful, because pills always seem to always wear off at the 3-hour mark!
All the pain I experienced from this surgery was in my low back, sometimes radiating into my hip and down my leg (but most of that was from lying in one position for too long). I’m sure everyone experiences it differently, but for me there seemed to be three kinds of pain – razor blades, knotted muscles, and the dull ache. Razor blades are like your back is full of these incredibly sharp little knives that stab you every time you move. You end up spending all your energy trying not to move to avoid the pain from this. Knotted muscle pain is just like what it sounds like, where it feels as though someone has twisted your back muscles into knots. The knotted pain seemed to be worse after any kind of movement, especially PT. Finally, the dull ache is a constant pain that builds and builds if you don’t deal with it, until it reaches the point where you feel like a knife has been jabbed into your back. This is the pain that is the hardest to deal with, because it so much beyond your control.
At this point I was taking Oxycodone and, whenever the pain got too strong, I.V. Dilaudid. It worked well and the vast majority of the time I felt like my pain was under control (level 6 or lower), with some exceptions I will talk about later.
I will never again listen to anyone say something bad about hospital food! OHSU, at least, has totally changed the concept of hospital food so that it is almost exactly like picking up the phone in a fancy hotel and ordering almost whatever you want from room service delivery. The food that is delivered was delicious, easy to get at the times you were ready for it, and always delivered at or before the time they said it would be. I was very impressed every time by the meals I could ask for while in the hospital, and you would hear things like “next time, try the salmon” for a dinner entre. It was that good and that fancy. Wow!
HOSPITAL ROOM – First Day after Surgery
Sleep was not the greatest that first night. The real problem, at least for me, was that I had one way of lying (on my left side) that didn’t ache and hurt. But after doing just that position for 12 hours, you will feel like you are ready to sell your soul for a second position to lay in that doesn’t hurt. It really wasn’t until the fourth night that I could find a way to sleep that didn’t feel like it was killing me, and this is something that plagued me for a long time (up until about 8 days post-op when I had more ability to lay in new positions). I kept wondering if there wasn’t some kind of special bed or padding that could help with this, but more or less I just struggled with finding a way to lay down comfortably between going to the bathroom (which relieved the pressure on me from lying down), and snoozing.
Unfortunately, this first day after surgery seemed to be when the real pain began. The nurses said it was typical for this first day after surgery and the second day to be the most painful, and it was most likely caused by swelling at the surgical site and all the other stuff flushing out of your system. I had been hovering at pain level (on a scale of 1-10) of around 5 to 7 up until the evening of this first full day after surgery, and then I started to experience pain levels that hit 8.
One bright spot was meeting my most favorite nurse named Erin, who took over nights from Nia. Erin was, during the time I was at OHSU, the best nurse I ever had. It seemed like she could tell before I could just what as going to happen and she was always right there helping me through it. Just thinking about how much she helped me brings tears to my eyes, and this goes to show that having a great nurse can make so much difference to how you experience the hospital and the pain.
I know Erin was very compassionate and highly skilled, but I think what made the most difference was how much she listened to me. I felt so understood by her, like there was this amazing advocate out there for me, someone who I knew I could trust to help me if pain or other issues came up. Somehow, and I’m not sure how, Erin more than any other nurse I met understood me and made me feel like she was so completely on my side that I could really trust her to take care of me. That allowed me to tell her exactly what was going on with me, and it was that total trust that helped so much. I few days later another nurse named Andy came close to making me feel that heard and cared for too, and other nurses like Mindy succeeded at this too at different times, but Erin especially was someone I hope OHSU recognizes as the best of the best.
HOSPITAL ROOM – Second Day After Surgery
Morning started out ok. Physical Therapy (PT) had been by and got me moving a bit, which both helped (kind of un-kinked me), and caused the pain to spike. PT did give me lots of good info about how to survive outside the hospital too.
A doctor I had never met before stopped by the first morning (the day before this) and introduced himself as an associated of Dr. EDITED. He returned on this second day to remove the drain in my back, which he did expertly with just a single stitch, and it was gone. He gave me a choice of “a needle shot to remove the pain of the stitch I’m going to do, or a just a single needle prick to put in the stitch”. I figured it was fine to just get it done without any numbing needle shots, and he did a great job of it.
I don’t know if it was related to no longer having the drain, or if it was because I was walking around at the urging of PT for the first time on this day, but unfortunately by this evening the pain had come back and developed into the worst pain I think I have ever felt in my life. When I was asked about my pain level I would say 8, then 8.5, then oh-my-god 9, and finally later that night I hit a pain level of 10 for the first time ever in my life. At one point I was begging for them to just knock me out, and then I was crying and shaking from the intensity of how much it hurt. I really should have been more proactive with my nurse, so some of the pain getting this high is my fault I think, but I just never imagined it would take off like that. One thing that might help future patients is to really explain how pain can peak on this day and how important it is to really, really, be on top of it.
In many ways, I don’t even know how to describe such pain. It was like my back was full of razor blades and someone was using gigantic fists to knead the flesh back and forth with all the razor blades shredding me from the inside. Any movement caused me to shriek in pain as it felt like a knife was being jabbed into my back. By the time Erin had come back on, she and Jerry the CNA were basically taking total care of me (I could not even move myself).
I want to say again thanks to Erin and Jerry for their help that night. Erin got the meds changed and I eventually got the pain down to a tolerable 6 or 7. Jerry, a nice man in his late 50’s, must have seen me completely naked a half dozen times as I screamed when being moved, and yet I could not have felt safer. Thank you both so much for your help that night, it will be something I will never forget.
CNA’s in General
I think the job of being a CNA must be a tough one. Jerry, for example, was very good at what he did. Other CNA’s were bizarrely bad at helping in any way at all. Some examples:
1) When trying to sit up once using what they called the “log roll” maneuver, a CNA grabbed the side of my head and tried to basically pull me upright using my head as a handle. I snapped at her to “stop that!”, which she immediately did, but it was such a weird thing to do to anyone. I would never grab someone’s head to pull him or her upright - it was downright dangerous.
2) More than once I was asked by CNA's if I wanted to take a shower, but I was told by the doctor that I was not allowed to take a shower yet, so I kept having to tell them I couldn’t do that. I’m not sure why they didn’t quite ever understand it.
3) Pretty much the whole time I was in the hospital I was running a low-grade fever. It ranged from 99.5 to as high as 101.8 at one point (I think). I could feel the fever in my face and through body aches, and so they were giving me Tylenol pretty regularly the whole 5 days I was in the hospital to keep it under control. The doctors even ordered blood tests (which showed high white count), urine test, and a chest x-ray to rule some things out. I don’t think anyone ever figured out why I had a fever, and they kept me one extra day in the hospital due to having it, but for most of the time I was there I felt slightly flu’ish as my temp kept fluctuating.
However, several days into my stay, I once again felt my fever had come back just like it had been doing for days and days. In the past, I would tell my nurse, they would take my temp, and then they gave me Tylenol to help bring it down. But this time when I buzzed for the nurse, I got a CNA I didn’t know well who, in this bizarre conversation, decides I don’t know what I’m talking about when I tell her my fever is back and she tells me “well, it is pretty warm in this room maybe that’s why you have a fever”. I assure her that it was warm in the room because I turned up the temp after feeling like I was freezing from having a fever. Then she says “well, maybe you ate something hot and that is why your temperature is high”. What??
These are two of the dumbest things I’ve ever heard. What is most annoying is how dismissing she was of me over the whole thing, like I hadn’t been dealing with the fever for days already and couldn’t possibly recognize it again. Instead, she is offering up this folksy wisdom (I guess, I’m trying to avoid the word idiot when discussing her) about why I should ignore how I feel instead of getting me some Tylenol like everyone else has done. It was just a really bizarre experience with this one CNA.
HOSPITAL ROOM – Third Day through Fifth Day After Surgery
I finally got through the worst night ever and things started really improving starting the third day after surgery. I saw Kate, Dr. EDITED PA, the morning of the third day and again on the fifth day and we talked about going home and what sort of plan there was for that. On the final day my nurse Norma, who was terrific, worked with Kate and got all my discharge instructions and prescriptions worked out. It was very easy for my sister to fill the scripts at the pharmacy right at the hospital.
PT was something that was really stressed to me as being very, very, important for recovery, and during these days I did more and more walking and sitting. I ended up getting a walker, which continues to be super handy even here at home, and I used it in the hospital more often than not. The physical therapist even had me try some stairs, and she told me I was doing really well, better than she expected.
Dr EDITED himself visited me during this time too. I don’t know what it is about neurosurgeons in particular, but the man just exudes confidence, competence, and this very powerful belief that he can do anything to make you better. We talked about the surgery at length, and he told me that it although it was a difficult one (he even found and fixed where my spinal column was damaged and leaking), the post-surgical CT looked “perfect” and he was really happy with the results. I was really glad he came by ☺.
Some Nurse Comments
I had a lot of different nurses over the time I was there. I’ve already talked about Erin, Andy, Mindy was also great, and some of the others who were terrific. I think what was the best about them is that they worked with me, and that they were really available and caring.
Unfortunately, a few of the other nurses seemed to have some kind of different philosophy that made me a bit, well, crazy. Here are some examples:
1) One day nurse I had was caring in this “old-school” kind of way, but she was incredibly difficult to either (a) make happy or (b) live up to her instructions. I’m a really nice person, I try to get along with everyone, but I struggled hard to not get angry with this one nurse.
Some of the things she did that were so confusing was that she would tell me how much she wanted to work to address my pain, but then got irritated when I tried to do that with her. For example, she asked me at the start of her shift if I wanted to keep taking 6mg of pain medicine or go up to 8mg. I told her lets stick with 6mg for now, and I will do some walking/sitting and see if it gets out of control. A couple hours later after walking around I did exactly that, my pain went up a lot, so I asked her if we could go up to the 8mg now.
She acted almost offended that I asked for it to be increased, like I had somehow disappointed her or was being weak. She grilled me about my memory and was convinced I must not have remembered that she gave me 6mg earlier that day, which was weird because I remembered it completely, but now I wanted to up to the 8mg so I could do PT more easily.
This same nurse confused me over and over again with her instructions. No matter what I did, it seemed like I was doing it wrong in some way. She wanted to know what my pain level was, but if I told her it had gone up, she seemed irritated with me (so I found myself minimizing that kind of information I gave her).
Another time my socks had come off and I couldn’t find them, so she got me another pair. When I wasn’t even looking, she threw the package of socks at me. They hit my arm and then landed on the floor. She then asked me in this see-how-helpless-you-are voice, “so how are you going to get them on now?” I kind of stared at her in amazement, because the other nurses had always helped me and had certainly never thrown anything at me before, but this nurse wanted me to talk to a PT and come up with ways to put them on myself.
I could never figure out if this nurse didn’t like me, didn’t like the job, just had no sense of humor at all and came across as cold and uncaring, or something else was going on, but I cringed when she came on shift. My sister was also often with me with this nurse (since it was during the day), and she was dumbfounded at the things she said to me and encouraged me to complain to her supervisor. I honestly just did not understand how different this nurse could be from all the others.
2) I had three male nurses in total while there. One of them, Andy, was really, really, terrific. He was there during the worst of the fever and he helped order tests and really made a positive difference in my life. There is a way a nurse can interact with you that lets you know they are really looking out for you, they listen to you, and that is so reassuring when you are in the hospital. Andy was very much like that.
3) But the other two male nurses had some shortcomings. The first of them wasn’t too bad, but he came in my room at the beginning of his shift and quite dramatically told me “his patients almost never need to buzz him because he checks up on everyone every hour”. Well, maybe that night he was super busy or something, but I saw him a total of two times in 8 hours and it was both because I pushed the button to request more pain meds, and even then he seemed hurried when he was there. I guess I just don’t understand why he made such a promise in the first place? It wasn’t necessary, and it just became a let down when he didn’t really ever show up for me.
3) The final male nurse I had who I will call “C” was, easily, the least involved nurse in my care in the entire time I was there, and possibly even dangerously uninterested. In the past, all of the night nurses really wanted to make sure I got my pain meds every three hours so that my pain never got out of control. I assumed C would too, but he apparently had a different philosophy and he let me sleep past the three-hour point until I woke up in total agony around 4.5 hours after my previous meds. That really, really, sucked, and was totally unnecessary.
To make matters worse, I found out when he did give me my meds, he gave me the pain pills and the Valium at the same time. None of the other nurse’s thought that was not a good idea, they always staggered it, because the combination might make me be too sedated, but apparently “C” didn’t care or didn’t know.
Lastly, every time I buzzed for him he always answered through the intercom, like he was sitting at the nurse’s station the whole night. No other nurse ever answered that way, they either just showed up very quickly, a CNA would come in and find out what I needed (sometimes going to get the nurse), or some other person on the intercom would tell me that they would inform my nurse that I needed to see her or him.
What I honestly felt like was that “C” was just sitting around at the nurse’s station the whole night, maybe watching TV, not caring much at all about what was happening to his patients.
I really, really, hope these nurse comments don’t give the impression I received bad care. 95% plus of the time the nurses were so great and the help they gave was way beyond my expectations. They really saved me during the hardest times of recovery. Maybe it is even because of the outstanding care of nurses like Erin, Nia, Andy, Norma, and Mindy that makes “C” stand out as so wildly different and bad.
I left the hospital around 11am, 6 days after going in. By this time I could walk, with or without the walker. I could even navigate stairs. My pain was under control, the PT had done a great job preparing me, and I had everything I needed to succeed at home. It was such an intense experience, something that will forever change me, and I can already feel some really important improvements in my spine and stability. Thank you OHSU for the wonderful care, nursing, food, facility, all the staff, and your true dedication to the health and welfare of your patients. I know I deeply appreciate it, and I'm sure others do too.
Post edited to remove name of medical professional and or facility. by The Spine-Health Moderator Team