How would you prepare for a lumbar spinal fusion, given physical limitations and extreme emotional distress?

July 30, 2009 2:19 PM

The spine isn't healing, in spite of doing everything exactly as the doctor said. Surgery is in the offing, but maybe not for another month or so. Given that we have this time to kill, how do we - and how does our daughter - prepare for the surgery to make it and life afterwards go better?

Our daughter's spine was crushed 3 months ago. She was given conservative treatment, 3 months in a hard shell with a leg extension. We thought she was healing. She wasn't. Now, she's looking at spinal fusion surgery. Due to the ever-present, ever impossible intrusions of the insurance industry, she can't be treated by her neurosurgeon. We have to find a different one. We might have done that, but he's a busy man and won't just take a patient under another doctor's care, so we have to get in line. He won't even look at her records or do an initial consult for at least 3 weeks. No clue when the surgery would be.

She's not very mobile, as part of her spine is in many pieces. She's in a lot of pain when she stands or walks. Given that she hasn't done much moving in 3 months, her body is fairly weak, although she was in excellent health before the injury.

Is there anything she can do to prepare for the surgery during the wait time, given that she can't do much (no bending, no lifting, no pushing, no pulling, etc., etc.) that will help the surgery and recovery go better? Can anyone tell me specifically what it feels like to have the rod there (this is the lumbar spine), anything you'd have done differently, anything anyone else could have done to help you that you might not have asked for at the time - either during spinal surgery or a time of immobility?

She's a college student. Thanks to the help of her university, she was able to finish up her freshman year, but she clearly won't be going back to school this semester. Any ideas when she will be able to go, live on her own, carry books and groceries and resume her life, if all goes well (given that none of it has gone well so far), and considering that she won't just be recovering from the surgery, but from 4 months of enforced immobility?

I know you're not a surgeon or her surgeon. Just looking for any advice to make a horrible situation a little easier.

posted by clarkstonian to health & fitness (18 comments total)

This won't help with the medical aspects of your question, but consider looking into which courses her university offers online. Even if she only carries one or two courses for the upcoming semester, this may help her feel less like her life has been completely derailed by this injury.
posted by onshi at 2:47 PM on July 30 [1 favorite]

I had double spinal fusion (L4-L5, L5-S1) four years ago. I do not notice the rod or the screws at all, ever. That doesn't mean I don't know that they're there -- my lower back is much less flexible than it was, and I do need to be careful of what I do (no running, no diving/jumping, no off-road biking, etc) and how I sit, and the muscles are more sensitive to 'overwork'. Nothing overt, but they do let me know when they've been overused.

While I was 40+ when I had my surgery, and thus didn't have books, etc to carry, I do have a family and two school-aged children. 3 months after surgery, I was back in the gym (with activity restrictions) and at the grocery store (although MrR still got the critter food), at 6 months I was doing laundry and housework, and a year later was back to playing saxophone. A teenage friend of mine had scoliosis surgery (screweyes and cable, thoracic) in May and was off to college in September, albeit in a ground floor room right on campus, and cleared for full activity in 6 months.

For post surgery, get some coldpacks. The clay based ones (Thermipaq brand - nayy) are nicer than the gel ones, I've found, although the homemade ones that one of my nurses suggested (1 gallon ziploc bag half-filled with a mixture of alcohol and water so it "freezes" to a slurry) worked nearly as well -- double bag for peace of mind.
posted by jlkr at 2:49 PM on July 30 [1 favorite]

Sorry, no spinal info, but most junior colleges offer on-line versions of all the requirements and if your in-district school does not have something she can take that is available at another junior college, in cases such as yours they will waive the out of district fees.

My daughter's the same age, I've been thinking of you. Best wishes.
posted by readery at 6:12 PM on July 30

I snapped my C-2 clean in half my Freshman year of college, I jumped straight to the surgery and had it fused (C1-C2). It sucked, but in a lot of ways it was a really positive experience for me. I found that being that age it gave me a lot of material (and time) for some serious reflection on life and my place in it and the direction I wanted mine to take.

I spent about 3 months in a hard brace and another 2 or so in a soft one. It was about a year before I was "fully" healed. I still can't look behind me so well, but I do all sorts of other stuff just fine. It was about 9 years ago that I broke it.

I'd say that by far the biggest positive thing I had for my recovery was to have amazing supportive people around me, family and friends. It seems from your post that she should have at least some of that covered. You really feel kind of old and weird for a while, people being around and making things as normal as possible is huge. Plus, it's pretty boring after a
while.

The one thing I'd do differently is to follow my recovery restrictions a little better. I kinda did some stuff I wasn't supposed to earlier than I should have and I think it set back my overall recovery time a touch (I was 18 and cute girls wanted to hang out, hard to say no!). Though at the same time, it was hugely positive for my mental state so I dunno.
posted by teishu at 6:53 PM on July 30

jlkr, this is exactly the surgery our daughter is going to have. Did you have to be in any kind of shell or brace. If so, what kind? The no running is a hard restriction. She was a runner/jumper/gymnast. What do you do if you're tempted to run? What would happen if you had to run?

teishu - People have been great, but they're starting to move on with their lives, without her. I know that once she gets back into the world, she'll be fine - but she will be almost completely physically isolated from her friends for probably another 3 months. Any suggestions?
posted by clarkstonian at 7:19 PM on July 30

Oh, wow. I had scoliosis when I was 12 and had my spine fused, from above my hips to about my shoulder blades.

For recovery, now, I do not notice. I even forget that I had the trouble!

Then: bending. Hard to get your mind around it but eventually your body forgets that you can't bend except at the hips and neck, and copes. Picking things up with my toes, bending knees to clean teeth. With a straight back it's harder to resist falling if you are pushed (backwards) past your centre of gravity. You get stronger later. Basically you have to rely on the flexibility of other parts of my body (legs, arms) to compensate for your back.

Flat-back bed rest: a computer (laptop? net book? smartphone? (iphone?) ipod touch?) with email/facebook will help her stay connected with her friends, as will phone calls. This is hard with the college age thing, I was starting high school.
also: Audio Books.

Running. the surgury will take a bit out of you and you won't feel like much physical activity at first. When you feel like running, the restrictions are more precautionary than big red DO NOT DO! (I am not a/your doctor). Not that you should start doing 1 mile runs, but if you had to run, it would be ok for short bursts. In a formal setting you should be allowed to not run. People will understand.

I might forget and start running, then remember, stop, walk. No biggy. Of course, I was weakened from the surgery so wasn't a fan of running. After I recovered I did cross country, I did rock climbing. My surgeon had a newspaper clipping of a girl show jumping a horse (she was a patient of his) on his wall.

I had a brace, ymmv. a friend of mine in the next bed of the ward had a cast.
posted by titanium_geek at 8:55 PM on July 30

titanium_geek - wow. To do this at 12 would be hard. I hope she'll be doing what you're doing in another few years. Circumstances are a little different, since her L5 is gone & not coming back, but she will also have a much shorter incision & fusion. Congratulations on healing so well! She has a laptop, phone, ipod. We ordered a Kindle. She's teaching herself Japanese. She's staying engaged. It's just that she's already done it all for 3 months. Her friends came, called, wrote, baked, sang, but it's getting pretty endless.
posted by clarkstonian at 9:40 PM on July 30

I don't know if it's really helpful, but I remember a novel from high school about a 15 year old recovering from a broken neck, dealing with the loss of social life, no more karate, etc. Peeling the Onion, an Australian teen fiction book.
posted by jacalata at 10:29 PM on July 30

This is only my thoughts so please forgive me if any of it seems unfeasible - i wish your daughter the best of luck with the surgery and please pass on congratulations to her for being so strong through it and staying engaged and positive.

What I wondered was about her friends - you said they are drifting a little because of how long it has been now. You say they came to her and have been keeping her up with reading and writing and baking and stuff - brilliant.

I was thinking, it would be great if your daughter didn't feel like they were going out of their way to see her, and if it could be more of an all-round beneficial type thing, and more regular. So how about starting a book club, which is always held round at yours, once a week? Or, a movie club, or even a knitting group, quilt-making, sport-watching, taxidermy - whatever floats her boat.

Make your house the "club-house" for one or two things that her and some of her friends like - that will keep them coming round regularly, and make her feel less obligated to their kindness.

Just a thought anyway. Good luck.
posted by greenish at 3:42 AM on July 31

The problem, greenish, is that they're not here. They're scattered all over the US & other countries, they have summer jobs, they're traveling. She wasn't injured here - she was injured on campus. That makes it a lot harder.
posted by clarkstonian at 6:17 AM on July 31

Does she have Skype with a good webcam and mike? That makes it more fun to talk to friends. She's learning Japanese in the midst of this...something tells me she's amazing and will come through this stronger than ever. I wonder if she'd like to blog - there are communities of young people with medical issues, whether it be cancer, spinal issues, etc.

I wonder if you have anyone to talk to yourself? Sometimes the hardest thing about caregiving is not over-compensating for the patient's loss.... make sure you have your own outlet to discuss these things that isn't her or her mother. Whether that be a counselor, clergyman, best friend, support group, or a walking partner, just give yourself a break a few hours a week (sounds impossible, I know). Good luck to you all -- for whatever reason we've all been taken with your story and are rooting you on.
posted by barnone at 7:28 AM on July 31

No brace or cast, but I'd been as active as possible until I went into surgery. The nurses had me out of bed and walking to the bathroom within 24 hours of leaving the OR. The first two weeks after surgery, while the muscles and incision are healing, is ghod-awful -- sometimes, even breathing hurt. After that, it got easier.

The problem with running, or anything else like it, is that the curve and flexion of the lumbar spine is a large part of the body's shock absorbing mechanism, and with a lumbar fusion, you lose it. I can run for short distances if I need to (using sprinting form so that my feet and knees absorb more of the impact), but jogging and running for distance/fitness is no longer a part of my life -- it hurts if I do a lot. And if I do too much of it, I'll get to see my surgeon again, and while he's a nice man and a wonderful doctor, I don't want to see him on a professional basis ever again.
posted by jlkr at 8:13 AM on July 31

Our daughter is wonderful, talented, beautiful, capable, but very, very private. She doesn't like her friends seeing her in this condition (being cared for by her parents - horrors!). She lived in fear that the press would get hold of and run with this story and has worked very hard to prevent that. So she won't Skype until she's healing and looks physically normal again. She won't have anyone stay here until she can care for herself.

I'm trying to convince her that blogging is a good idea. As this drags on and on, she's a little more receptive to the idea.

I understand now why the neurosurgeon was so vague about her running or playing lacrosse - thanks, jlkr. I didn't understand why you couldn't run if you'd healed. Can you do sit-ups? Some variant of sit-ups?

We have a really good support network - not physically, but emotionally. Meta is part of that, barnone. People have given us some amazing advice.
posted by clarkstonian at 10:12 AM on July 31

Sit ups? I laughed, remembering my first attempts at sit ups. You see, I just can't bend like normal. However, you can still bend at the hips. In later high school (oh, about 4 years after the surgery) I was asked to do sit ups as part of my Phys Ed class. Hilarious. With someone holding my knees/feet I was able to get off the ground a little. After that I gained confidence. More "sit ups" (bending at the hips, even funny lie-on-ground-wave-legs-around reverse situps) later and my stomach muscles are stronger. Potentially I could have done them earlier, I don't know. I know the first year after my surgery physical activity was limited to walking. I never played team sport because of my operation (and general unfit and uncoordination- I wasn't sporty to begin with.)

You can use Skype without the webcam, to talk to her friends elsewhere for cheap. I know what this is like also. All my high school classmates are on other continents (except for one, but she lives in another state). It is true that friendships falter over lack of shared ground. It is true that you lose touch with some friends. But I learned there are two types of friends- friends of the moment and friends of the heart. The friends of the moment at the time can be hard to distinguish from heart friends, they are still good friends. But heart friends- when you catch up with them again, it's like you never left. All friends are not heart friends, and this hurts. But as time goes on you make new friends (both moment and heart) and the old heart friends? You can always catch up with them.

Knees/joints: I had a knee brace. With a better diet (more fish, I think, moved from a landlocked country to Australia) I don't need it anymore, but my leg joints take all the stuff the spine isn't taking anymore.

Blogging: she can do it anonymously, if she wants.

Care for self: will happen after the surgery. To begin with, I had to have help to roll over, then just one person, then I could do it myself with supervision ("log roll", no twist) to get out of bed, when I couldn't sit up (stupid stomach muscles) I could "roll out" and stand up. The best way to empower her is to encourage her to find safe, if "weird" ways of doing things- supervised at first to make sure she doesn't hurt herself (and badly...) but then she should be able to get around her "disability".

I don't feel like I am a disabled person now. Sure, after the surgery I was weakened, had to learn new ways of moving, sitting, etc, but now I feel as able bodied as anyone else. well, I can't join the armed forces, but I didn't really want to anyway.

Oh, and vitamin E cream does amazing things for scarring. I had two ops: one scar is from my side around my shoulder blade and another is straight down my spine. The shoulder one was harder to get to and wasn't creamed as often. You can see that one more. Daily scar rubbing with vitamin E as soon as possible. They also fade with time.

Sorry for length. Hope you can get the surgery happening soon and the recovery moving. I know it seems like forever now, but for me and many others, it passed. :)
posted by titanium_geek at 4:25 PM on July 31 [1 favorite]

Hm. She's not going to be happy about the sit-ups. She'd done a hundred a day for years. Well, we'll have to work on that. As for the log roll & all of that, part of her spine was crushed in April. She's already done all of that. We know about draw sheets and log rolls and the whole nine yards. It's frightening to think that she has to go through it all a second time. I think maybe I'm more firghtened than she is.

She was captain of her lacrosse team. She was really physically active. She's fairly driven, as well. They've told her she can be out of her brace as much as she wants, since it's only supporting her muscles and not helping her spine. They suggested 15 minutes. She spent 5 hours. If she can make herself well, she'll be well.

Scarring is a big issue for her. There wasn't a mark on her from the accident. They had promised her minimally invasive surgery if necessary, but now, it's going to be a big ol' honkin' scar, and she is dealing with that. We'll get some vitamin E cream.

Any idea whether she could use an elliptical machine. It seems that works the legs and hips more than the back? She likes using one.
posted by clarkstonian at 6:58 AM on August 1

(quote)It's frightening to think that she has to go through it all a second time. I think maybe I'm more firghtened than she is. (/quote)

For her, it's something inside that she just has to face. For you, this is your daughter going through this. (deep down still your 'baby girl', yeah?) I know my op hit my parents hard, probably harder than me, I was a bit oblivious to it all. I didn't see myself drugged, fresh out of the operating room, which was obviously tough for my folks.

Does it work in the US to be able to ask the doc/surgeon questions about activity? Can you ask your neurosurgeon what she is allowed to do? Remember not to rush anything- it seems like forever now but in reality will soon be a blip of memory. I would suggest that the elliptical after the surgery. (this sucks, but yeah. better safe than sorry. ask your doc for confirmation.)
posted by titanium_geek at 1:06 AM on August 2

titanium_geek, you can ask, but they generally won't answer. We asked (back when we thought she was healing) whether she'd ever play lacrosse again, and he just smiled vaguely. Because of our malpractice laws, they won't commit to anything, which isn't very helpful for the patient, but is understandable.

Generally, here, your physical therapist handles your physical recovery.

Right now, she's up and walking without the shell, which makes the surgery all the more painful. She can walk (can't bend, can't do anything that would destabilize her spine), and she looks almost normal and well (if 18-year-olds walked and moved in slow motion). Of course, she isn't normal and well, but we don't see that.

You're right - it's brutal for us. I feel much worse now than I did after her initial injury. I just want her to be well.
posted by clarkstonian at 8:12 AM on August 2

Part of the reason that the docs won't give you a firm answer is that they really don't know. Every back injury is different, every surgery is different, every response to surgery is different, every recovery is different. (For a given spinal surgery, an experienced surgeon will have seen every outcome from wheelchair bound to complete and full recovery, and there's no way to determine who will go which way before the surgery is done. It's sometimes hard to tell even after surgery.)

Chances are really good that she'll come out of the surgery just fine, with some reasonable restrictions; but the docs just don't know, and rather than foster unreasonable expectations, they're pessimistic.

No, she won't be the same active girl that she was before the accident. You need to deal with that. NOW! Don't harp on or stress about the things she may or may not be able to do after the surgery. THAT DOESN'T HELP, now or later. She'll find other things to do. She will probably be able to do most exercise routines (I do yoga and Pilates and aerobic training on ellipticals in the gym and road bikes), as long as she stays away from high-impact stuff. I'd be really surprised if she even wants to play contact sports, if only because it will F*$@ing hurt when she gets hit from the side or back.
posted by jlkr at 1:01 PM on August 2 [1 favorite]