"How is your back?"

[billanschell]

That's the question I always get from people who knew about my surgery but aren't close enough to me to know all the gory details. I imagine others on this site hear it, and it's a tough one to answer. What I want to say is:

"As far as my back goes, the fact that I had a laminectomy covering three vertebrae leaves me sore at times, but that's a picnic compared to the real problems. When they cut open your spinal cord you lose your sense of where your legs are in space - proprioception. When I wake up in the morning, I have no idea where my leg are. When I'm driving and walking, I have to concentrate and make a point to verify their position. But that's nothing compared to the discomfort. I'm on a variety of pain meds, but they only partially reduce the pain. My knees feel clenched, my ankle feels like it's being squeezed in a vice, and even though I'm largely numb from the waist down my legs feel totally strange when anything brushes against them. Then there's the fatigue: Between the side effects of the meds and the concentration it takes me to walk like a normal person, by early evening I'm about done (which in my case is when I usually have to go to work). And my whole life has been changed by the fact that I can only stand in place for a couple of minutes before my knees start aching, and I'm only good for about a mile of walking, after which my knees are pretty much shot for the day. Most of the things I'd like to do with my son (kick a ball around, go to a festival or the zoo) are no longer possible."

Nobody wants to hear all that. So what is the best answer? For people who I believe are truly concerned I say something like: "The real damage isn't to my back, but to my legs as a result of them cutting into the spinal cord. So they're sore all the time, I'm always on pain meds, and I get tired quickly. But at least I can still lead a pretty full life, and my piano playing isn't affected much."

For people I don't know well, who heard about the surgery from others, I just say "fine," or "could be better, but I'm getting around okay." There doesn't seem to be any point in bumming them out with the details.

I'm sure others get this question, and I'd be interested to hear how you answer.

--Bill

[ScrapHeap]

I'm pretty much lock-step with your answers. Nearly identical.

I go into details w/those who really are concerned. I'll tell them as much as they decide they want to hear.

For those who are interested but don't know me on a certain level, they get the more abbreviated explanations.

For those who don't really give a rats rump about me in general but were bold (or stupid) enough to ask, I give them the full Monty! I especially focus on bowel and bladder issues - lots of details about self cathing, frequent heavy sedimentation in the cath bag, frequent stones, how painful it is to go several days w/o having a BM and how disgusting it is when the dam suddenly breaks. I can be a total bunghole when provoked or severely irritated. I figure, why ask questions about someone they have no interest in? Worse, why ask questions concerning their well-being, or lack thereof, when they could obviously care less? So if they are hypocritical enough to ask, I'm honest enough to let em have it, both barrels. Consequently, they only ask once.

[went]

I normally look down at my wheelchair, and then say "Guess."

Then I think about giving them the finger, and sometimes follow through with it.

[8338]

To both of your answers I totally identical to you. If I don't walk with my legs apart or don't concentrate my balance seems to go. I do find though that now I can walk out into the wind (only out to my truck) and I can look away a little while walking and not only straight ahead.
I cannot, however, walk too far without a cart or something to hang onto. My legs tend to freeze up and I forget everything I was taught about bending my knee when walking.
I can't believe that I used to skate, run, skip, get up from sitting without thinking and just start walking. I was just thinking yesterday why I get tired so easy and it must be because of all the effort I have to put into everything that I do.
Barb

[kerry]

People often ask me what's wrong with my back. I usually take the time to explain to them that I had a tumor in my spinal cord & that it messed me up from the neck down.
I usually stay away from explaining about proprioception which is a big problem for me especially in my arms and hands. Here is a link I think you'll find interesting regarding proprioception: serendip.brynmawr.edu/exchange/node/1699
It includes a short story about a man who lost proprioception in his entire body due to a disease which destroyed his preceptor cells. He simply can't stand in a room that is dark; without light he just falls down.
I think one of the reasons we get so tired is because of the effort we have to do with our eyes due to our lack of proprioception. I think another reason we get so tired is because we no longer have a complete spinal cord the muscles that we do have connected up have to work so much harder. Those are my thoughts anyway.
Kerry

[billanschell]

Great article. Not only does it explain why we are more fatigued as a result of not having proprioception, but - using phantom limbs as an example - it also explains why, once our proprioception is compromised, we feel pain in our limbs when there are no real muscular problems.

"When the matrix sends out signals to the missing limb and receives no response from proprioception the matrix registers a problem in the limb instead of no limb. When the brain recognizes something wrong it reports a painful sensation to clarify that there is a problem in the area of the limb to the rest of the brain, and the person experiences a painful limb even though they know it is not there."

Thanks for this link.

--Bill

[shannan]

Funny, alot of people appear to avoid asking me how I am now. It's not like I gave them a smart ass answer or anything...sometimes a very bitchy and clipped "fine" is all that's needed.

[rugger8]

This is my first post but have been following the forum for about a year now. Guess I finally got tired of being a wall flower and decided to put in my two cents!
For the most part I feel like people are really concerned when they ask but I want to spare them the dirty details. "Pretty good" is the usual answer.
When I'm in a crappy mood what I really want to say is "Pretty good except I need to carry catheters wherever I go, When I'm in the bathroom I sound like a man peeing, (not such a good thing when you're a woman) I'm CONSTANTLY worried about passing gas in front of everyone..., I'm almost always constipated, my butt, feet, legs and other bits and pieces are numb, I can't stand it when people touch my feet, and I hate Hate Hate not being able to play sports/run anymore. Other than that I'm perfect!" But of course I never say that!
Thanks for letting me vent it to you all. I feel better now!!!!

[8338]

Nugger,
I'm glad that you joined our little family. I'm curious of where your tumor was and how much they got out. Keep posting.
Barb

[rugger8]

Hi Barb,
I had a Laminectomy from T12 to L4 back in 2004. They were able to remove all of the tumor (Ependymoma). I will be four years tumor free in September!