postsurgical tales of terror-avoidance, pls share

February 10, 2016 7:51 AM

I have some questions about upcoming ACDF surgery.

Next month I'm having a three level (4-5,5-6, 6-7) ACDF with autograft bone taken from my hip. I've already spoken at length with various doctors about expected outcomes and recovery times, I have a wealth of general dos and don'ts, and way too much information about extremely rare but terrifying possibilities.

What I want from you, dear mefites, is your own personal experiences in recovering from ACDF surgery. What did you do, or have done for you, that made things easier? What unfortunate things befell you that you would wish to avoid in a do-over? What are things you think you should have done, or done sooner, that could have helped you out?

I would like to hear:

- what positions did you find most comfortable for sitting and sleeping?
- how long was it before you felt comfortable being a passenger on public transportation?
- what happens when you sneeze, will my head fall off? Seriously how do I sneeze/cough without injuring myself.
- was your voice affected and if so, for how long?
- how long did it take you to feel like eating solid food again?
- in the long term, is your post-surgical activity level the same as or better than prior to the surgery?


I don't want to hear:
- something you heard that happened to your neighbor's friend's aunt who had this surgery
- something you found on google just now
- something you saw on Dr Oz

I know you are not my doctor, I know you are not giving me medical advice. Please assume I have read all previous AskMes on this subject. Thank u for your time and I hope you get to hug a dog today.

posted by poffin boffin to Health & Fitness (10 answers total)

Hi! So, good news - I'm 10 years out from this surgery right now (one less level than you, I was C5-C7), and I'm totally fine. I had donor bone, not autograft, so I didn't have the additional hip ow that probably entails. Are you getting some sort of stabilizing hardware? What sort? That will help me answer your questions better. :)
posted by kythuen at 8:29 AM on February 10, 2016

Best answer: Ok. Ask if they are using any growth factors in the bone chips they are using in the fusion. Research the possible outcomes of those/that product. There are growth products that are currently used that can cause overgrowth and that becomes a problem/necessitates a surgical revision. Also ask if they are planning to augment the autologous bone chips with cadaver bone. Some people can (rarely) end up with an immune response to that material. Research the use and side effects of cadaver bone. Ask what instrumentation they will be using. Ask why the surgeon has chosen that brand of instrumentation. Ask the surgeon how many ACDFs s/he has done with that brand. Research that instrumentation. The spine/ortho instrumentation business is brutal and dirty- knowing WHY the surgeon is using that particular brand is important.

My father and step-mother both had ACDFs a little over a decade ago by the same surgeon. My SMom had a fantastic recovery and after about 6 months was back to normal activities. She does tend to get sore after a long day and can no longer mow the acreage on the tractor. My father has had overgrowth and as a consequence he has chronic nerve pain in both arms and a chronic throat clearing cough from the irritation to his esophagus. He has never returned to normal. He has difficulty driving for more than a couple hours and could not return to work as a commercial fisherman. his voice is altered and has not returned to normal. Had he known they were planning to use a particular brand of growth factor (off label even!) he would have told them not to.

They both find relief from a high quality heating pad. They also have lots of different types of pillows everywhere because what feels comfortable on Tuesday can suck by Thursday. I think that they are much more mindful of taking care of their necks because they don't want to end up needing more surgery. (In fact, my dad should probably have a revision but he lost some cognitive function due to anesthesia and refuses to go under again.)

So much of your outcome depends on what happens in the OR. Ooh! Also insist that they use cerebral oximetry- when they have your neck jacked back like that, it can interfere with cerebral perfusion- totally NOT what you want. Studies support its use. I wouldn't be intubated without it.

Disclaimer: not a doctor. My husband and I own a perfusion / stem cell business and have seen the inside of many, many ORs.
posted by PorcineWithMe at 8:51 AM on February 10, 2016 [1 favorite]

Poffin, I'm so sorry to hear things have gone this direction for you. Gentle {hug} and best wishes.

I am XLIF, fused T12-L2, incision was through side. Different area, so I'll pipe in with only two things: first, keep up with the laxatives immediately post-op, and escalate if necessary. I had problems in this area, and it was distracting and painful. Avoid that.

Second, I am actually amazed at how mobile my back is, now. I thought I'd be a board; I'm not. I'm a very little limited in spine rotations in yoga, but that's it. I was told I wouldn't sleep on my stomach again, but I do.

However: I'm achy a lot still, and more significantly -- the lack of (real, whether I perceive it or not) mobility at that level means that other parts of my back take the strain, and they are much more quick to complain now. I would guess that will apply to you too. So my advice is: keep up on mobility and flexion for your other back parts, whole body really, while you're working on neck rehab. As you know, it all goes together, so keep working on it all.
posted by Dashy at 8:55 AM on February 10, 2016 [1 favorite]

Best answer: I asked a question here about caring for someone who had this surgery a while back and hopefully some of those answers will be helpful.

The friend in question had that surgery and a revision 3 years later. I took care of her the first week after she was released from the hospital. From my observations:
- she was most comfortable sitting propped up on the couch with lots of pillows around so she could adjust support for her legs and arms.
- she did not feel comfortable on buses or the subway for a couple of months, mostly because the subway can be a bit jarring and she was nervous about subway stairs.
- with a neck brace, coughing and sneezing were... you know, not fun, but she didn't injure herself further.
- her voice was not affected except for a minor throat-clearing irritation for a few weeks after surgery. Her surgeon told her this varies widely among his patients.
- she ate solid food a few days after being released from the hospital, but soft textured solid food. If I remember correctly, she had mostly shakes/soups/yogurt for about a week and then really wanted a sandwich. She did fine with the sandwich.
- her post-surgical activity is much better than before the surgery. She is more mobile and has a similar experience to Dashy's in that she can't do super twisty yoga stuff but she is much more flexible and mobile than she was pre-surgery.

I will also second the recommendation to get on the laxatives immediately post-op while taking pain meds.
posted by bedhead at 10:11 AM on February 10, 2016

Best answer: - what positions did you find most comfortable for sitting and sleeping?

It's been quite a while for me, but as I recall I felt most comfortable sitting up to sleep the first few days/week. I had one of those big pillow-with-arms things, and then an extra pillow for my head, and a tiny pillow for the very back of my neck.

One thing I would not have thought of before the surgery - to sleep well and comfortably sitting up, I also needed pillows to support my arms. The weight of them pulling down on my shoulders was painful otherwise. So basically I slept in a giant pillow farm, but it worked.

- how long was it before you felt comfortable being a passenger on public transportation?

It was at least a week, possibly longer, I can't quite remember. What I do remember is that it was a lot more comfortable to sit sideways than it was to sit facing the driver. So when you do get back on public trans, if they have sideways seats, choose those for a while. And if you have a collar, wear one. I found that the muscles that stabilize the sides of my neck were a lot less traumatized than the ones that stabilize front/back.

- what happens when you sneeze, will my head fall off? Seriously how do I sneeze/cough without injuring myself.

Your head will not fall off! At least, mine never did, and I'm extremely sneeze-prone (and we are not talking about delicate, lady-like sneezes here. We're talking sneezes that elicit "Wow!" rather than "Gesundheit!")

But, sneezing might hurt while it's happening. If you feel a sneeze or cough coming on you can generally brace yourself enough that it's minor and forgettable.

- was your voice affected and if so, for how long?

I was hoarse for about a week, and felt a bit like I had a lump in my throat for a while, but it was never really troublesome.

- how long did it take you to feel like eating solid food again?

Not long at all - a day or two, max.

- in the long term, is your post-surgical activity level the same as or better than prior to the surgery?

It took a full year for me to feel really normal, but only the first six months of that were actively unpleasant. At a year I rarely thought about it. At two years, I was doing everything I had done before. It's had nearly zero impact on my life long-term.

One thing that took a while was using a laptop. Because of the angle you tend to hold your head at, it took a while for that to be comfortable; I switched to a desktop for about three years after the surgery. However, right now I am typing this on a laptop that is my main conduit to the world, with no pain. Even that gets better pretty quickly.

The non-zero impacts have been:
- I'm suspicious of every arm pain and tingle - convinced it means I will need surgery again. So far, they have been random and meaningless and I haven't needed any further surgery; I'm just a person who worries about that.

- It's a little harder to spin my head around like Linda Blair and see traffic coming up behind me while driving. It's not *painful*. It's just that my head doesn't go quite so far around as it used to. It's maybe a difference of 10 degrees or so. I can compensate by twisting a little more at the waist. (Note: For the first year or two, it was a little bit painful. Not anymore though.)

- It's a little harder to sit side-on to the television and watch. I prefer to sit so I don't have to turn my head much if possible, because I get a little achy sitting with my head turned for a half hour or an hour.

A few other things you didn't ask about, that I found interesting/significant:

- I wasn't offered physical therapy to help recover; later, I found out a lot of people are. As a result, my pain level for the first six months was pretty bad, and my recovery was pretty slow. It sped up significantly when I finally complained enough to my surgeon to get a PT referral. I did a lot of arm-bike-pedaling, and got a lot of great info on exercises to help strengthen my neck.

- Your back may also hurt a lot. The position I was in during surgery did a number on the muscles of my back and I was pretty miserable for a while. The more you walk, the better you'll feel. A hand massager will also help a lot.

- Your neck is attached to everything in your body in unknowable ways that will sneak up on you. After surgery, before you leave the hospital, someone will teach you how to stand up without pain, how to get into a car, etc. (If they don't offer this, demand it - they'll have an occupational therapist who can do this). Pay attention! All of it will hurt anyway for a while, but not nearly as much as it will if you don't do it like they tell you. Also, have someone on hand to help you for the first few days of the surgery. You'll need it.

- This surgery is a trauma to your body, like any other major surgery. And like any other major surgery, it comes with a risk of post-surgical depression. This is something that, in my experience, *nobody* talks about. I had a major case of it, for a full year after my surgery. I felt like my life was over, I'd never be healthy/whole again, I would never be able to do anything or be normal again, fill-in-the-blank with your favorite metaphor of despair. Don't just suffer through it, like I did! If you start to feel bad, tell your PCP, tell your surgeon, tell everybody who will listen. They can help, if they know about it. A lot of people need a short course of antidepressants after surgery, and also just talking to a therapist can help. Don't let this catch you by surprise if it happens to you! Be prepared to advocate for help for this.

These last few things were pretty scary to read, I would imagine, but keep in mind that it all gets better and easier for almost everyone. I never even think about it these days unless someone asks a question on metafilter (or I have to change lanes quickly!). I walk, bike, go to work, use a laptop, turn my head without pain, tie my shoes, look at the ceiling, look at the floor, etc, like anybody who never had this kind of surgery.

And hey - if you want to chat more about this - or if you need somebody to talk to who's been through it when you're recovering - please feel free to email me. You can reach me at [e-mail].
posted by kythuen at 10:48 AM on February 10, 2016 [2 favorites]

Response by poster: Are you getting some sort of stabilizing hardware? What sort?

I know it'll have plate & screws but I forget if there will be a cage as well.


the lack of (real, whether I perceive it or not) mobility at that level means that other parts of my back take the strain, and they are much more quick to complain now.

I was wondering about that as well since I also have a herniation at L5 but everyone I've spoken to said that the strain will not be any worse than it already is. No one has suggested any kind of surgery for the L5 either as it is pretty minor in comparison.


wrt pooping YES BY GOD 100 LAXATIVES PER MINUTE, I almost prolapsed my vag after my hysterectomy from poopstraining and NEVER AGAIN shall I suffer such godawful indignities.
posted by poffin boffin at 10:51 AM on February 10, 2016

Ah, ok, then all my answers above will likely hold true - I seem to recall some people don't get stabilizers, which would probably lead to issues I never had to deal with.

Use my email in the answer above (see edit) if you need it!
posted by kythuen at 10:54 AM on February 10, 2016

Response by poster: Oh and wrt physical therapy: all of the drs I saw said it would be up to me, because my overall fitness is high and the muscle development in my back and neck and shoulders is already very good and supportive. I will probably end up doing it anyway just to be able to DO something other than sit around the house.
posted by poffin boffin at 10:59 AM on February 10, 2016

Oh, one thing I forgot - and you may already know what works for you, because you've had surgery before. This was my first surgery, and the first pain killer they tried on me in the hospital didn't work at all. I think they tried dilaudid first, which didn't work, and then morphine, which did - or possibly vice versa. But the important takeaway is, they may think the first thing should work and you may have to yell your head off if it doesn't, before they switch you.

The only oral med that really touched my pain pre- or post-surgery was oxycontin. I had to bug the crap out of my doctors to get it. I imagine that will only be harder to get now.
posted by kythuen at 11:04 AM on February 10, 2016

Apologies if these are too general tips but I recently had knee surgery and there were several things that I really didn't think about before hand and I was shocked at how difficult life became during the first few weeks of recovery. So my tips would be to get a beanbag to use as a big pillow (I had to remove some filling to get it to just the right support) and to wear shoes or firm boot style slippers day and night, the pressure on my heels from lying/being seated for long periods drove me crazy. I started wearing my Uggs in bed at night and wished I'd done so from the start.

I also had to emergency buy a nightie because I didn't own such a thing and being able to plonk down on the toilet without having to deal with any clothing suddenly became a really useful thing to be able to do for the first few days.
posted by Ness at 4:06 AM on February 12, 2016