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View Full Version : Asking others about their scoliosis...



amae28
04-04-2008, 06:46 PM
OK so I am in college, a sophomore, and in my organismal biology class (about 40 students) there is a girl that often sits near me that obviously has scoliosis. I'm guessing by the very prominance of her rib hump that it's at least 70-80 degrees. I was surprised one day to see that she had a scar the full length of her back too because it looks as though she hasn't had her scoliosis corrected. Nevertheless, I am having surgery this summer for my scoliosis, and althought it is apparantly not as severe as hers, I am DYING to ask her about her experience with it. I just feel like it would be completely out of the blue and come off as rude, like... "oh, I saw that you have scoliosis, so what's going on with that?!" lol, obviously I wouldn't say it like that, it's just that I don't really talk much in that class and I don't want to be prying into her business. Would it be innappropriate to some time ask her quietly, "hey, I'm having surgery this summer for my scoliosis and was just wondering..." I don't even know how it would be not rude to ask her. Should I just not say anything? UGH! I just want to know! I wouldn't be offended if someone asked me but I feel like I would be prying into her privacy. any input or advice?

briarrose
04-04-2008, 07:45 PM
A girl I know who had scoliosis surgery said to me, "You have scoliosis don't you?" I replied yes and she said she could tell. She wasn't rude about it but it made me feel very self conscious. Asking the girl in your class may make her feel the same way. I would maybe talk about the surgery to someone nearby in the hopes that she would be listening and maybe she would chime in. Maybe that's kind of cowardly but that way you wouldn't have to ask ;)

rosie1108
04-04-2008, 07:49 PM
Go for it!! There is really no reason not to. Worst case scenario- she thinks you are some special breed of crazy, and doesn't talk to you ever again.

That doesn't seem like a big risk, since it doesn't sound like you've ever talked to her before. I really don't see that happening, I'd even venture to guess that she was once where you are now, and would be more than happy to discuss it with you.

I can tell you that more than likely, she had a stabilization done ~5+ years ago, and in that case they were more concerned about keeping it from progressing than straightening it out. The harrington rod procedure usually got minimal corrections of 40-50% if the patient was young, and less than that in older teens and adults. In that case, she would still show cosmetic deformities. I was supposed to have harrington rods put in back in 2001, I was 15 and they were estimating that my 55 degree curves would be reduced to 30-35. I just had the newer procedure done, and my two 65+ degree curves are now both about 15 degrees.

I hope you get up the nerve to ask her, you'll probably get a friend out of it!

Rosie

Singer
04-05-2008, 07:49 AM
Before my surgery, I used to see an older lady in the supermarket all the time who had very pronounced scoliosis with one hip way up higher than the other one. She would lean on the shopping cart like she was in pain. I used to stare at her because I imagined that's what I would look like if I hadn't had my surgery. I was dying to say something to her but could never think of a tactful or sensitive way to do it.

If someone had asked me about my own deformity, which I took great pains to hide, BEFORE my surgery, I think I would have been flustered. But now, with my great figure, if someone wants to ask about my scars, that's fine with me. ;)

The fact that this young woman's scar has been visible tells me she might not be too self-conscious about it and might not mind a friendly question or two. As in: "I hope you don't think I'm completely rude, but I noticed your scar and I'm about to get my own scar this summer......"

Susie*Bee
04-05-2008, 07:59 AM
I agree with Singer-- that would be a good way to bring up the subject; mentioning the scar rather than the deformity. People can be so sensitive... :eek: but if you were able to see her scar, then she can't be too sensitive about that, I would guess. You could even say something like "I have scoliosis and will be having surgery this summer. I noticed the scar on your back when..... and wondered if that could be a battle wound from a similar surgery." Good luck!

CStadler
04-05-2008, 12:09 PM
I don't believe you have to point out the scar or the hump. Just say hello and tell her you hope she doesn't think you are rude but you are having surgery for scoliosis this summer and would she mind you asking a couple of questions. That way you let her know you don't want to be rude but are just asking for advice. It will be fine if approached in the right manner. Good luck and let us know how it goes.
Carol

sccrm08
04-05-2008, 01:36 PM
I noticed a woman with a scar on the front of her neck once and asked if she had a spinal fusion and she said yes, how did you know. I pulled down my turtle neck and showed her I have the same scar. We discussed the surgery we each had and she did not seem to mind.

myachingback
04-05-2008, 11:07 PM
Very sweet and considerate of you to be so considerate. The other folks gave you lots of good advice! My 2 cents worth is if you want to bring up the subject do it one on one. If approached the right way she would probably even appreciate the contact and both of you will end up with an ally in the scoli battle! Two heads are better than one!
Good Luck,
Chris

Karen Ocker
04-06-2008, 05:37 PM
Another approach would be talk about your own operation/scoliosis and don't mention it to her--unless she starts talking about it. You could ask her to "wish me luck" regarding your upcoming surgery and go from there.

A difficult scenario for her would be having had a major surgery resulting in a poor correction and then having people noticing the poor result. This happened with my first surgeries (done in 1956) which left me with a big rib hump. A person told me it looked "terrible" and "couldn't it be fixed?". :(

Mobee211
04-07-2008, 02:43 PM
Hmmm tough one. I am VERY VERY self conscious abotu my scoliosis. Someone once asked me what was wrong with my posture and I bawled and spent the better portion of the weekend being very depressed.

skoshi314
04-07-2008, 04:34 PM
I remember when my curve became noticable and how self-conscious I was. What I didn't know was that was a perfectly normal way to feel about my scolio. I'd be self-conscious, then I'd feel bad for being self-conscious which would make me more self-conscious and it became a vicious cycle. But at some point, it stopped being such an issue for me. Once my daughter's friend asked me what was wrong with my back so I told her. She had this confused look on her face while I was explaining it to her, in 9 year old terms, so I asked if she wanted to see my back. She said sure and her reaction really caught me off guard. Instead of saying "Gross!" she said "Cool!" Not what I expected. From that point on I've tried to take advantage of as many opportunities to educate people on scoliosis as I can. I think knowledge may be the key to acceptance.

nzgirl
04-07-2008, 06:22 PM
I guess it depends where they're at with it. Everybody swore they couldn't tell I had scoliosis... then when I had it corrected they could really tell the difference! I wouldn't mind being approached, and neither would a lot of people here... but some would. I say go for it, she may be feeling really isolated because of her scoliosis (in terms of her experiences with it, even with friends etc..) and may be glad to know that there is someone else around with it. New friend?! Just think of a tactful way of bringing it up and make sure you tell her about your situation.

flowergardenj
04-07-2008, 10:01 PM
My son has scoliosis and someone at work appears to have it as well. I keep trying to decide if I could ever bring up the subject with her, but I don't know her at all except to nod in passing. There is also someone who takes the same commuter train home and I would love to talk to him as he has a pronounced forward bend, but same thing-how do I broach the subject?

Do you think maybe your classmate is sitting in lecture looking at your back and wondering how she can bring up the subject with you (assuming from your profile that your back would be somewhat unusual as well)? How would you like her to approach you? What wording could she use to ask you questions that wouldn't upset you but would open up the topic for discussion?

For me, it may be more awkward since I do not have scoliosis and might seem to be prying into personal space when I first make a comment or ask a question.
Sitting in silence for now....
flowergardenj

amae28
04-08-2008, 07:18 PM
There are so many different ways on how people could react (just based on looking at your responses), and I don't think I can predict if I'm going to offend the girl or not, no matter how I approach it. I wouldn't point out her deformity, i think I would just flat out say that I'm having surgery for my scoliosis in June and was just wondering if she's had any experiences with it. I think I'm going to remain silent for now as well though. Personally I think that my deformity is very noticeable but a lot of my friends have told me that they didn't notice until I pointed it out. they may just be being nice though, who knows... anyways, I am not really self conscience about how I look, I just don't think it's anything cute, lol. Personally I would not be offended if someone said that they noticed my back and wanted to ask me about it, I'm actually really excited to talk to people about it. I know that that is not how everyone feels though.

dealornodeal
04-08-2008, 11:47 PM
I agree with many of the same comments as well as your concern for the young lady's feelings. I have scars down the full length of my back and a few years ago I went to the beach and had on a bathing suit with my whole back out and I could often feel people looking at me, but I was proud to show my scars, it was part of my life and they each have quite a story to tell, but also know that it's great to get further insight from someone that's actually gone through the same procedure, so maybe your idea of letting her know you are going to have surgery will open the lines of communication and get you some great info and who knows maybe a new friend. ;)

LJ

loves to skate
04-09-2008, 09:18 AM
Would it be possible to just make friends with her first and then see what happens? She might then be the one to start asking you questions, or as you get to know each other better, I would think it would be easier to ask her questions about her back. Just a thought. Good luck.

CHRIS WBS
04-10-2008, 11:04 AM
I went to a meeting here at work this morning and sat next to a woman who appeared to be in her 30s. Following the meeting I wanted so badly to ask her about her scoliosis but I just could not get myself to broach the subject with her. I have seen her a couple times in the past and someone mentioned that she can occasionally be seen using the treadmill in our fitness center. I have never seen anyone with such a serious deformity. She is completely bent over and has a huge hump on her back. I doubt if she even reaches four feet in height. I suspect though that she has more than just the scoliosis that is twisting her body. When you think you have it bad, just look around and you will always find someone who has it even worse.

Wishing
04-10-2008, 12:10 PM
I am somewhat of mixed opinion regarding this matter. However, I think the intentions and empathy shine through. I know that even though I was very defensive over the years regarding my scoliosis, I think that I would have welcomed someone who was a fellow sufferer and had empathy with whom I could talk. It was such a lonely world and I stuffed so much pain inside. I had given up on treatments over the last 20 years as I thought none were out there and thought I have everything done that was possible. How wrong I was as scoliosis treatment continued to evolve and advance at a rapid pace and I didn't know it. If someone had approached me, I would have an empathetic person to talk to and also I may have learned alot about current treatments.

Wishing
04-10-2008, 12:55 PM
I read somewhere on this forum that someone shared about feeling bad about having scoliosis and then felt bad about feeling bad. I felt this way for so long, and it was a relief that someone else felt that way who understood. This was a tension and stress reliever as I realized that these feelings were normal. This kind of empathy really helps. It was then that I could look at my strengths and weaknesses and move on.

CHRIS WBS
04-10-2008, 01:06 PM
What really surprises me is that the medical community in general apparently is not aware of the advancements and that treatment is available for adults. It was just a few years ago when I saw a new gynecologist who looked at me with horror when she learned that I have scoliosis. I never heard her say, “Do you know this can be treated?”

Wishing
04-10-2008, 01:28 PM
Yes, Chris, I found that out the hard way. Over a period of 18 years, my internists rarely mentioned my scoliosis and only in passing. I guess they thought since I had been treated for it years and years ago, there was no need for further discussion. Even when I developed night time headaches and high blood pressure episodes which accompanied them and saw neurologists, they diagnosed cluster headaches, or benign hypnic headaches or vascular headaches. It was only after I wound up in the hospital two years ago for an episode of severe breathing problems when walking, was I diagnosed with severe restrictive lung disease. Eventually, my night time symptoms were due to severe breathing problems while sleeping, and I was started on a Bi-Pap at night with elimination of most of my symptoms and a major reduction in blood pressure medication. I had been treated all wrong for some years and could have progressed to pulmonary hypertension and severe heart problems if it had not been caught when it was. I though I was being treated by very competent internists and neurologists.
So, I found out how unaware many doctors are about scoliosis treatments and resultant problems from scoliosis. I had given up so much that I could not even bring myself to look up the word scoliosis on the internet. So, talking to people experiencing some similar issues can be very enlightening.

sccrm08
04-10-2008, 07:49 PM
Last Year when I went to a surgeon and he said he could help me, i was so happy because for so many years I was told there was nothing they could do for adults. When I told my Sister in Law and Brother in Law that there was help out there for adults and I showed them my x-rays, He told me a story about a women he worked with and how bad her scoliosis was. She also thought there was no help for herself. My Brother in Law went to work the following week and went to talk to his co-worker and told her about me. She told my BIL she would see a Dr. again. As it turns out we both had the surgery around the same time and my BIL tells me she looks great. Some Adults don't realize there is help for our scoliosis.

CherylPJ
04-14-2008, 06:26 AM
My greatest sources of information and solace have been other people that I dared talk to about scoliosis. I'd say, "Take a risk." Your classmate may be glad that you did. As someone said, you may also gain a friend. I have. :)

The responses to your question remind me again how great this Forum is.

amae28
04-14-2008, 08:57 PM
I agree there is little knowledge in the general medical community about scoliosis and modern treatments for it. My family doctor, who diagnosed my scoliosis originally, thought that I was due for surgery when my curves were only in the 30's... "haven't you had surgery yet?!"... and my experiences with nurse practicioners have been even better- one who did my physical recently for my job at hospital asked me if i was able to work (I'm 20 with a curve in the 40's), and my sister, who had a physical for nursing school was told that she has mild kyphosis, which she does but it's nothing to get excited about- and she responded by saying that her sister has scoliosis- the nurse then proceeded to say, "oh no! That's terrible! How did she catch that!?". I almost died when she told me... like a virus or something. I just hope by the time I get to medical school things will have changed.

Cheryl- I see you are having your surgery with Dr. Lenke too! about 5 weeks after me! We'll have to share experiences.