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JenniferG
07-23-2010, 05:43 PM
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
07-23-2010, 05:52 PM
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. :D In fact, comparing walkers or asking about motorized scooters is a guaranteed opener (and to think, I use to ask about exciting car models! :p)

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

LindaRacine
07-23-2010, 06:12 PM
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
07-23-2010, 06:43 PM
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
07-23-2010, 09:12 PM
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
07-23-2010, 09:30 PM
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
07-23-2010, 10:14 PM
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
07-23-2010, 10:57 PM
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
07-24-2010, 07:04 AM
Seeing people like that breaks my heart, but I bite my tongue.

ADMoul
07-24-2010, 12:45 PM
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
07-24-2010, 04:17 PM
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
07-24-2010, 05:44 PM
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
07-24-2010, 06:38 PM
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
07-24-2010, 07:05 PM
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
07-24-2010, 09:33 PM
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. :o 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! :)

jrnyc
07-24-2010, 09:36 PM
hi Linda
sent you a private message...

jess

CHRIS WBS
07-26-2010, 12:16 PM
Even a scoli surgeon hesitates.
http://drlloydhey.blogspot.com/2009/08/walmart-spinal-deformity-screening.html

Back-out
07-26-2010, 01:13 PM
Even a scoli surgeon hesitates.
http://drlloydhey.blogspot.com/2009/08/walmart-spinal-deformity-screening.html

Good find, Chris! There is one interesting distinction which he's naturally sensitive to - that he feared he might be seen as "trolling for business".

It's striking that this woman who was working as a Walmart's cashier (can hardly think of a worse job for someone with Scoliosis! :eek:) , said - after recognizing him by name:

"I have had several customers come up to this counter and see me bent over and suggest that I go to Raleigh to see you. My business manager has also been a patient of yours, and suggested that I come to see you..."

In her instance, numerous others HAD taken it upon themselves to speak up (and make a recommendation). I think it's a very variable decision, to be made by person and circumstance. Here, I think one important point is that the "kibbitzers" had a special recommendation to make. It's infrequent that a famous scoliosis surgeon is located in ones vicinity (especially in a relatively rural area).

The degree to which the patient is out-going matters too. Step one is a smile. If returned, that's an important sign that there may be receptivity.

titaniumed
07-26-2010, 10:14 PM
Jen
Is Wal Mart in Australia? LOL Its great to hear that you are doing well.

Itís the large kyphosis cases that really stand out.... Sometimes scolis are difficult to spot, even with training...

I was introduced to a scoli camping up in Oregon, and that happened through the person I was travelling with. She mentioned that I was a scoli, and was introduced. We talked for hours.

I have met scolis simply by saying that "I am a scoli", "been battling it for years" and have never had issues with people being offended...Itís the same ice breaker technique that Amanda has mentioned...Suddenly, I'm not a stranger and we have something in common. I now try to get people to post here, which can be difficult... Some are afraid of computers. I will suggest just reading and when they are ready, they will post in time.

I'm as open as they get, and will discuss scoliosis for as long as it takes. If a person wants to discuss the topic, more power to them, I wouldnít want them to have to go through all the learning curve I went through. It probably has something to do with having scoliosis during the "dark ages" years ago when there was nobody. I thought I was the only one. I never believed that there are so many of us.

Surgery is a very personal decision and takes time to ponder over. Everyone is afraid of the unknown, and pain. Everyone has their loved ones telling them to "get it fixed" or "donít do it, are you crazy?" Many have these little things on their minds, and the worry that goes along with scoliosis, so it really is a matter of reading the person in the first few seconds, and if they are responsive, go for it. Some really are very inquisitive, and need someone to talk to. Its best to mention your story, and leave it at that. If they ask, you could say that I had surgery with Dr So and so, or had pain relief doing this or that.

I find it difficult to recommend my surgeon and he did a great job. He could be the best on the planet, but all surgeons will have a certain amount of complications. Its just the nature of the business. If something were to happen, how would I feel? I will explain this to Sharon, and I know she knows, but I'm still a little worried. I know that many un-fused NSF posters appreciate referral's, but this is how I feel. Complications can happen with any surgeon....

Funny how when your shoulder is broken, and it doesnít move, how suddenly surgery has to happen. Same goes for things like laser lithotripsy's and gall bladder removal for extreme gall bladder attacks. Major pain dictates when someone will have any surgery.

The Dr Hey article that Chris posted is great. Nice of Dr Hey to say "just come on over", no pressure. Going to a surgeon can be very scary and this situation just shows that surgeons should just let scolis come for a visit, and absorb some information with no decision necessary. It sometimes takes several visits over a few years, like in my case.
Ed

LindaRacine
07-26-2010, 10:22 PM
I find it difficult to recommend my surgeon and he did a great job. He could be the best on the planet, but all surgeons will have a certain amount of complications. Its just the nature of the business. If something were to happen, how would I feel? I will explain this to Sharon, and I know she knows, but I'm still a little worried. I know that many un-fused NSF posters appreciate referral's, but this is how I feel. Complications can happen with any surgeon....


I've always felt that way.

And, while I'm posting to this thread, I thought I'd tell you about two times that I wish I didn't know that some people find it offensive to be approached. Last year, at the Scoliosis Research Society annual meeting, I was walking with some friends (I think there were a few doctors and a few PAs), when we came up behind a man who walked with a walker, and whose right shoulder was resting on his right hip. It was so tempting to try to take him hostage and bring him to someone like Dr. Boachie, who would have been just minutes away. The other occasion was also last year, when I saw a man walking down an outdoor staircase with his head tilted to the right, resting on his arm, and completely upside down. (Imagine the headless horseman.) I would not have even thought like something like that was possible.

--Linda

Back-out
07-26-2010, 11:44 PM
Starting to think we should just wear sandwich boards saying: ASK ME ABOUT MY SCOLIOSIS.

Then anyone interested can just approach us! :)

Back-out
07-26-2010, 11:47 PM
Shocking and tragic. Linda. Maybe, seriously, it would work if we had cards to give out - basically, saying the above. Maybe also showing before and after Xrays (for those who have them) and giving a bit of information.

That could include contact information such as this web-site and even ones home phone if one is willing to be contacted (and reserves the cards for special cases). The recipient could then read the card at leisure after the "giver" is out of sight - then decide whether or not to call.

And the information can say what one would have liked to say to a sufferer - with all the empathy and sensitivity to their feelings that just can't be summarized in those first thirty seconds...That might include an apology if it IS an intrusion (and focusing on our own experiences).

As far as recommending a surgeon, I think any such recommendation, even if solicited, comes with an understood caveat that even the greatest surgeons encounter problems and that it is, in the end, a matter of trust. One involving a calculated risk. That one only passes on a name or names with that understanding because - hey, it's better than the yellow pages! It's a start.

To be left to the mercy of advertising in making such a choice, is a fate beyond TERRIBLE.

rohrer01
07-26-2010, 11:50 PM
I, personally, am very hard to offend when it comes to talking about my scoliosis. I recently started wearing tank tops that actually make it visible, now that my hair is cut. The reaction from a couple of my friends was pure shock! I didn't take offense because now they know that when I say I hurt, they really know that I do. If someone noticed and said something to me, I would be all open and willing to talk about it. That's just the kind of person I am. There is a woman in my town that has an obvious major double curve. Her neck is fused from a car accident and is totally stiff. I've wanted so much to talk to her (she is also the daughter of a friend of a friend) since I've seen her various places. When I've even attempted to just say, hello, she doesn't even acknowledge me. She is definitely NOT a person I would ever bring up scoliosis to, even though I would LOVE to talk to her about it. Everyone is different, as we have seen on this board. You just don't know if you are approaching a very private person or an open person. I guess the best thing to do is to try to make small talk, non-scoli related. If they seem friendly you can mention your own problem. If they are open to discussing it, they will mention their problem to you. Just don't let them know it is obvious to you. That will save their dignity if they are a private person.

LindaRacine
07-27-2010, 12:14 AM
I know enough people who are really private that I would never approach someone outside of a spine clinic about their back unless, as stated earlier, I got to know that person in another way first. And, in those cases, I would only do it if I felt a real connection. Someone posted recently that she was livid when a doctor gave out her contact information to another patient without her approval. That should tell you that we don't all feel alike, and that we should err on the side of offending the least amount of people possible.

I personally don't think that scoliosis is anything about which any of us should feel ashamed, but I respect the rights of others to have a different attitude about it.

--Linda

rohrer01
07-27-2010, 12:19 AM
I have a friend with a VERY severe scoliosis that left her noticeably deformed even after corrective surgery. She is extremely self conscious about it. She talks to me about it because my mom told her I had it. But she is so self-conscious that she takes offense to the movie "Hunchback of Notre Dame". She thinks that is the most apalling story ever made. She doesn't even have kyphosis. She has a side bend. But she feels that the movie is very demeaning to people with scoliosis, as I'm sure many on here would agree. Yes, we have to be very sensitive to the feelings of others, that's for sure. I've never approached anyone about it, no matter how badly I wanted to.

Back-out
07-27-2010, 12:24 AM
Linda

Someone posted recently that she was livid when a doctor gave out her contact information to another patient without her approval.

Even before HIPPAA (but especially now) doing such a thing is a very serious violation of Dr - patient confidentiality. She was right to be livid. This is not just a major invasion of privacy - it's against the law

I have often requested referrals to patients about specific issues, but only by giving my contact information so that persons known to the physicians or PT, can contact me at their convenience and at their discretion, IF THEY ARE WILLING.

JenniferG
07-27-2010, 12:47 AM
Some excellent considerations to think about here. Thanks to everyone who contributed their valuable ideas. Seems I'm not alone in wanting to offer *something* to our fellow sufferers but being hesitant to do so except in certain, rare circumstances.

kt2009
07-27-2010, 08:11 PM
...two cents here, as well. Though my surgery went very well and the doctor got more correction than he thought, I still have a hump above my fusion. SO sadly, some of us still have a more visible indication of our journey than others!

LindaRacine
07-27-2010, 08:35 PM
Linda


Even before HIPPAA (but especially now) doing such a thing is a very serious violation of Dr - patient confidentiality. She was right to be livid. This is not just a major invasion of privacy - it's against the law

I have often requested referrals to patients about specific issues, but only by giving my contact information so that persons known to the physicians or PT, can contact me at their convenience and at their discretion, IF THEY ARE WILLING.

The patient was not in the U.S.