Re: Answering my own question now, for those to come: What to expect after surgery

July 27, 2011

Well, it's been a long while, so I thought I'd report in.

Looking at what I posted below, I can't beleive what a cranky camper I was. It

seems like someone else talking.

So the good news is, I'm a year and a half out from surgery now, and I'm not so

stressed and cranky and uptight about all this anymore.

I've taken up jogging and can run about a mile now without stopping or slowing

to a walk. When I started, I couldn't run 500 feet.

Post surgery, there was too much pain. The impact of feet hitting the pavement

was too much for a long while. Then it was just that I was out of shape and had

no cardio tone. (I wasn't a runner _before_ the surgery either, and I was even

more weak after not excercising enough during the pregnancy and the post partum

year while the limp was developing and I was panicking about trying to figure

out what was wrong with me.)

Now I just get up and go. I don't run prettily because of the nerve damage in my

leg (the left one still drags) but I go, and I'm so happy to be able to move as

well as I can, I don't fret about what I can't do anymore. I'm proud of what I

can do.

The surgical site aches a little all the time, but it's ignorable. Sitting up

straight still helps. Being in shape and having tight abs helps. Losing the

extra preggo weight helped. Time helped. Getting over my fears helped.

The foot is still numb in places. But folks tell me it doesn't drag as badly as

it used to, and I'm pretty sure it's not quite as numb as it was. The surgeon

told me not to expect to get anything back in the way of leg function--the goal

was to stop the decay. It seems to have successfully done that, and I think

things are maybe a little better than they were. The thigh muscle doesn't

flutter and spasm anymore.

I still avoid lifting heavy things, except my toddler, who is around 40 pounds

now. Him I can lift. Not carry very far, but I can lift him if I have to, and

I'm careful how I do it.

The last MRI was back in December, and it looked as though the procedure did

what it was supposed to do correctly (which was build a big space around the

lipoma so it wouldn't retether.) (We couldn't remove the lipoma because of the

wrteched tangle.)

So, all in all, if I could send a message back in time to myself when I was

wondering whether to go through with the procedure or not, I would send back a

" yes, go for it--it'll be ok. " The pain happened, and what lingers afterwards is

manageable ache, and what I got out of it is a much lower stress level about

catastrophic outcomes from leaving the mess unmanaged.

Hope this is helpful if there is anyone out there still trying to figure things

out.

Thanks to all of you for support while I was going through the rough part.

Oh, in case I didn't answer the quetion below before: it was Dr. Dachling Pang

in Oakland CA who did the surgery. Highly recommend, if you can cope with the

long wait list for elective procedures. Good staff, too. The anonymous resident

who closed the surgical site did very neat work, and the scar has healed up very

clean. Looked like enstein's monster when I first came out, able to wear a

bikini without feeling self concious now--well not about the scar anyhow. Very

professional physician's assistant also who manages my follow up care.

best wishes all . . .

> > >

> > > When I first joined, I asked what to expect after surgery and how best to

get ready for it, and many of you were kind enough to share your experiences. I

thought there might be others in the future with the same questions, so I

thought I would summarize what I've learned from all this while I still remember

it.

> > >

> > > 1. Learn how to do a proper log roll from a qualified physical therapist

or download the instructions online and practice before you go in. Every shift I

had a different nurse looking after me, and they all had different ideas about

how it was supposed to work, many of them confusing, painful or useless. The

most awkward thing in the first few recovery days is not being able to roll over

by yourself to hit the call button to get your nurse to come help you with

something.

> > > The best trick I heard was the one about tightening your core muscles

while you are doing it. That really did help--and my abs weren't in any pain so

it was a good set of muscles to use. Staying in any one position for very long

gets uncomfortable, so you will wnat to be able to roll around a bit.

> > >

> > > 1.5 Immediately post surgery, keep your spine and hips aligned at all

times, no matter what. Even a slight torque is shudderingly awful. This will get

better in a few days. Having good core muscles before you go in helps with this.

Read up on ergonomic websites about how to sit up properly on your sitzbones,and

avoid slumping, slouching or leaning on armrests, because you really will be

more comfortable that way. It takes a few weeks to build up your " sitting up

straight muscles " if you're a habitual armrester like me, and it's nice to do

that beforehand. (I was lucky and happened to be taking classes on this to treat

an unrelated elbow/wrist injury--who knew it would turn out to be useful for

this, too?)

> > >

> > > 2. Having friends/family visit in the hospital is actually useful. I

thought I would not want much company (not the chatty type when in

pain/drugged), but I found that with people who understood that they were there

to watch over me and not necessarily to socialize, the nursing care I got was

greatly improved. If you're the " just leave me alone until I need something "

type, tell them to bring a book. (Wishing all of you understanding loved ones

like mine.)

> > >

> > > 3. Avoid annoying the nurses, and don't waste time arguing with them. They

have an awful lot of power over what happens to you, and how long it takes to

happen. That being said, if anyone tries something outright obnoxious, like

trying to convert you to their religion, or persuade you that you are mentally

ill when you're pretty sure you're not, feel free to make a note of it and

report it to their management after you are safely home. (I'm so not kidding

about this--one nurse did try to engage me in " theological debate " at a truly

inappropriate time, and I also overheard them trying to persuade the patient in

the next bed that she was demented and didn't know what day it was. She had

pissed them off about something else and they were retaliating by forcing her to

use a bedpan when she felt ready to get up and use the commode.) My response to

the " missionary " was to simply tell her I didn't want to continue the

conversation and to pretend to go to sleep. She accepted that and didn't seem

too offended.

> > > Her management was gobsmacked when I reported it though, and I hope they

will provide her with appropriate training on the subject.

> > >

> > > 4. Bedpans are hideous after spinal surgery--the " lift up your bottom "

position to get into them is agonizing. If you can get upright enough to use the

commode, things are much better. Honestly, I would rather have wet the bed than

use one of those things.

> > >

> > > 5. Prune juice is your friend, but go easy on the stuff 'cause it is

powerful.

> > >

> > > 6. They gave me a 5 pound weight limit on what I could lift and I found

that for the first few weeks, that included the clothes I was wearing. I had to

trade in my old terry bathrobe for a microfleece one, because the terry felt

like trying to walk in plate mail.

> > > I also wanted to wear clothes with no waistband for a long while, and

found myself wishing for my grandmother's housecoats. My mom helped out by

finding a few nice long nightshirts in reasonably modern styles. Having someone

to shop for me was great, because I didn't feel up to going shopping for a long

while. I hate shopping in the first place, so maybe that's just me. For those of

you who find malls during the winter holidays cheery places, maybe this wouldn't

be such an issue.I wanted to hibernate and shuffle around in my bathrobe and

slippers for a week or two, which is when I needed the new clothes the most.

> > >

> > > 7. As soon as you can walk (if you are able to walk) do as much of it as

you can. It's good for you, and it helps convince people that you are well

enough to discharge. Recovering is much nicer at home if you don't really need

ongoing medical care.

> > >

> > > 8. Sitting in a car is hideous awful. They are not designed to let you sit

upright the way you want to after surgery, and the layback position is not a

good one post surgery. If your car ride home is more than 20 minutes, take lots

of pain meds before you begin, and stop every 20 minutes or so to stand up and

straighten out. Warn your driver in advance that these are the rules, and plan

some pit stops.

> > >

> > > 9. Watch carefully for signs of urinary tract infections--you may not be

able to feel them right aftr surgery, but they are very common. Your pee should

not smell funny.

> > >

> > > 10. Do lots of slow deep, deep breathing while you are lying on your back

the first few days--the lungs don't inflate well in that position and that

leaves you prone to infections. Hey, you haven't much else to do while you're

lying there, so it's something to do anyway.

> > >

> > > 11. Having stitches pulled out feels a bit like having your eyebrows

plucked. You can feel it but it's no big deal. (I didn't know that, and I was

worried about it).

> > >

> > > 12. I get tired a lot. I can go about fairly normal for a while,and then I

" hit the wall " and am suddenly compeltely exhausted and need a nap. (Even

without taking any pain medications, but especially with.) I'm told this is

perfectly normal. Having childcare during my naptime is still 100% essential.

Even if the baby doesn't nap, I still need to.

> > >

> > > I think that's about it for tonight. Hope this was helpful, and wishing

all of you the best of health and healing.

> > >

> >

>

July 27, 2011

Great to hear your news! Surgery was a really difficult decision for me too and

in hindsight I wish I'd done it when first diagnosed 7 years earlier -- maybe

then I would have avoided some of the nerve damage I have in my one leg. I too

am doing so much better after my detether and then spinal fusion 2 years later.

It's been a long haul and was worse before I got better for a long time after

both surgeries. Am now 1 year post-op for the latter and am able to walk

further and no more aching legs! Doubt I'll ever run again (or wear a bikini!)

in my lifetime but to be able to walk at least 20 minutes is such a gift and I

am swimming and doing pilates. Hoping for more gains over the next year as I

continue to heal. My only question is running really an ok thing to be doing?

I've always wondered about that -- I used to run a lot when I was younger and I

always wondered if that contributed to my early wear and tear to my tether and

spondylolisthesis. Thanks for sharing your great story! Dee

To: tetheredspinalcord

From: mscurio@...

Date: Wed, 27 Jul 2011 05:55:06 +0000

Subject: Re: Answering my own question now, for those to come: What to

expect after surgery