Seeing others with scoliosis

[JenniferG]

I wasn't sure which forum this should go in, hopefully this is ok.

How often do others see people with scoliosis? I occasionally see middleaged people with scoliosis. Some appear to be moving in pain. It takes everything I have not to tap them on the shoulder and talk to them about it, because I am curious, I guess, why they have not had surgery. I would love to show them my x-rays and steer them in the direction of Dr. Askin.

But I watch them pass by thinking it's none of my business but wonder if I'm doing the right thing by saying nothing. Thoughts?

[Back-out]

Personally, I favor saying something - as long as you are careful not to tread on what may be someone's carefully preserved illusions about how they come across. For example, I'd avoid saying: "I see you have scoliosis" since it's tantamount to saying "your deformity is quite noticeable". Maybe they don't realize it (and don't want to).

Instead, maybe you might introduce your interest by saying "excuse me for what may appear inquisitiveness, but I notice you seem to be suffering from back pain, I..." [then start telling about yourself RIGHT AWAY]. If the subject of scoliosis comes up, you would want to speak only of their "slight scoliosis" , for the same reason mentioned earlier. Let them say, "SLIGHT?! Haha!". (Similar situation. I'm interested in where people come from, and often ask about "SLIGHT" accents - No matter how heavy it is! Often, it's someone who shares a nationality or language with me. If I'm sure, of course, I'll just say something in the language. There's no Scoli-ese. though! )

There are a few people in town I see struggling in and out of grocery stores or uncomfortably waiting on me behind a counter, clearly walking with great difficulty. I ask about their situation and talk about my own - surgery I've had, surgery I might have...If I have my walker, it really breaks the ice. In fact, comparing walkers or asking about motorized scooters is a guaranteed opener (and to think, I use to ask about exciting car models! )

No one's been offended yet and some are quite interested in hearing about my choices and deliberations, getting names of surgeons, etc.

[LindaRacine]

Hi...

While I personally wouldn't mind being approached like that, I've discovered that are a lot of people who are really private and who would find that sort of contact totally intrusive and inappropriate. I think it's entirely different, however, if you're in a social situation where you have met and spent enough time to connect to the other person. If I was in that situation, and felt comfortable, I MIGHT say something.

Regards,
Linda

[jrnyc]

i agree with Linda...personally, i wouldn't want anyone i didn't know approaching me..i consider it too personal...
as Linda said, maybe if i met someone in a social situation, it would be more acceptable to me...but if a total stranger approached me about it, i would be...appalled...and feel as if it was...just plain none of their business...regardless of their intentions!!

jess

[lray]

I agree with both Linda and Jess. I would find it very intrusive and inappropriate. Would it be ok in a social situation? Hmmmm, I don't know if that even would be OK. A lot of us on this forum have been "hiding" their backs for many years, and the thought of a perfect stranger mentioning it to me would really upset me.

[JenniferG]

Thanks for your thoughts folks. It's interesting because it seems some people would not welcome the interest of a stranger, but perhaps others might. I guess I'll stay on the safe side.

[LisaB]

There is a lady I run into here from time to time in social situations. She has a much more pronounced rib hump than I do and I keep wanting to say something but I don't feel comfortable. I guess, like others, I'm not sure I would want someone coming up to me. I'm hoping after my surgery I will be around her again and maybe talk about my scoliosis surgery to someone so she can overhear and then she can approach me if she has questions. Jennifer, maybe people are more approachable in Australia than they are here in the US. I kind of thought everyone was very friendly and casual when we were there. Go with your "gut." At worse you've offended someone you'll probably never see again and perhaps you will actually help someone.

[Back-out]

To make my comment clear.

Personally, I would not make contact on the basis of a visible deformity referring it to (as scoliosis). It MIGHT help (in case, the other person doesn't know options exist) However, I agree there's a great risk it could hurt feelings - or it could touch a nerve if it's someone who'd like to have surgery but doesn't qualify!.

I'm not at all sure this is the kindest course of action, though. But I'm pre-surgical. I don't have a success story to share. You're different. I think if you ever DID open someone's eyes to the possibility of relief, you'd never again doubt your course of action. That''s especially true, since you have so much to offer - referral to your great surgeon is BIG. Are we our sisters' keepers? I say, yes. But choices - whom to approach and how, ARE critical.

You are clearly a sensitive, empathetic person, Jennifer. I think you should trust your instincts and take a chance, starting with someone who is well over the line in identification - that is, by pain rather than by deformity. If successful, you might make your criteria broader. IMO it's ALL in how and what you say to them about yourself - that, and the look in your eyes. This is a club where membership is paid by pain.

My experience and motivation are different. I'm talking backs. Not deformity. When I become aware of someone with a painful back condition, I almost always say something - about backs. These extreme conditions are no secrets - often the sufferer is using a cane, wheelchair, or walker. They may have parked next to me in the Handicapped slots. (After a sympathic gesture, "Bad back?", is enough of an entree. They nod. "Me too" Then conversation, if one is up for it.) People can tell if you're on their wave length. Spinal disabilities are central to the life experience of sufferers. Heartfelt comments are shared and it's been mutually supportive.

You who said you personally would be offended, are - at least from what I recall - NOT at all deformed to the naked eye. That means no one would EVER approach you about it, unless it was a medical person with training. If then! (And that WOULD be waaaay over-stepping on their part). That's not at all the same kettle o' fish!

[debbei]

Seeing people like that breaks my heart, but I bite my tongue.

[ADMoul]

I agree with Laurie. For most of my life, I was very sensitive about my back and its appearance and would not have welcomed comments (no matter how well-meaning) from a stranger. However, since my surgery, I have had the opposite situation where people who either know about my surgery or see my scar in a a bathing suit come and talk to me about what I had done and where, etc. etc. I think there are very few, if any, adults in our local community who have had this surgery to the extent that I did and I have gotten lots of interest and questions even from other medical professionals. I know there are all kinds of privacy issues, but I let our school nurses and guidance couselors know that if there are students dealing with this, I would be happy to talk to them, steer them to the right resources, etc. It's such a traumatic and difficult thing for adolescents--I remember it all too well even though it was a million years ago. Now that I'm on the other side, I am very comfortable talking about it, but would not have felt that way even a year ago.

[jrnyc]

i appear quite disabled by the way i walk..bent over when in pain!
i would not appreciate anyone commenting on it in any way...just plain rude!!
it would not matter if they were "well meaning"...it would be completely inappropriate!

jess

[LindaRacine]

i appear quite disabled by the way i walk..bent over when in pain!
i would not appreciate anyone commenting on it in any way...just plain rude!!
it would not matter if they were "well meaning"...it would be completely inappropriate!

jess

Try walking like that in a spine clinic every day! Since it's mostly physicians and other medical professionals who comment, I take it as concern for my well being.

[Back-out]

Linda,

Since we're on line and since we're all concerned both about each other AND what happens post-surgery, may I ask if you do indeed walk bent over every day?

If so, I'm very sorry to hear it. Again, if so, is it the result of the PJK syndrome you've been sharing links about?

[LindaRacine]

Linda,

Since we're on line and since we're all concerned both about each other AND what happens post-surgery, may I ask if you do indeed walk bent over every day?

If so, I'm very sorry to hear it. Again, if so, is it the result of the PJK syndrome you've been sharing links about?

Yes, I am bent over every day, at least when I first get up from a seated position. It's not because of the PJK. It's because of degeneration below my fusion.

[Back-out]

Yes, I am bent over every day, at least when I first get up from a seated position. It's not because of the PJK. It's because of degeneration below my fusion.

I am very sorry to hear it - and interested from a personal perspective as well. I am bent over badly too, when I first arise either from sitting or lying down. My entire lumbar area is severely degenerated - probably some combination of aging and the scoliosis (main curve is 60 deg lumbar).

Until you wrote that, I never fully made the connection or realized about the "adjustment period" I go through when changing position. Truth is, for at least a year, I often just go back to bed with my trusty heating pad turned back on high! At least until the pain killers take effect...And even when I finally get up to face the day, it takes me a good bit of forcing and stretching to un-bend. An overhead rod I can hang from, helps tons, but clearly that will be out after surgery - same as inversion.

Things like this make me wonder if I'll get substantial relief from surgery. That is to say - whether the LT trade-offs will favor my post surgical spine (and limitations) , compared to the ones I start with. Of course, they're not going to stay the same, either. I wonder what the long term outlook is for my lower spine and how I might influence it, if at all. How much worse can those disks get, left to their own devices?

What's more this problem affects me another way that concerns me for rehab. Don't know how to state this delicately, but when I get up at night to pee (much more frequently than average even now) I can't straighten up to walk to the bathroom. There's more to it, but this is enough for now. Bottom line is, I have special reason to fear falling at that point. (I fell and broke ribs last year when I detoxed from high level opiates - unthinkable after surgery). Unsure what I CAN do to deal with this safely. Maybe the fusion will help with the DDD - and maybe it won't.

How do you "unkink" when this happens and how long does it take? I don't recall your fusion length, but I assume the unfused vertebrae deteriorated from motion. Can you walk straight once you get the "rust" out? Were you given any expectations about whether the problem could be resolved surgically?

Thanks!