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View Full Version : Girl has scoliosis; doctors amazed!



jelysc613
08-09-2006, 12:17 PM
I always get a kick out of this (and maybe feel a bit concerned), and I want to know if any of you have had similar experiences.

My surgery was almost 12 years ago now, and I have been lucky enough to not even worry about it anymore, for the most part. Anyway, every time I go to a doctor for something else entirely, and they read on their little form how I have scoliosis and had this surgery... they are so curious! Even when my current problem is completely unrelated to scoliosis. Some examples... in February of this year, I had laparoscopic surgery. I'd say 10 different surgeons and nurses "heard about the woman with scoliosis" and came to see me and ask questions as I waited to be brought in for the surgery. One even asked me to sit up so he could check out my back, because he was curious if I'd be able to have an epidural if/when I have children! Another... last week I went to see a hand specialist for some problems I've been having with my wrist. Doctor comes in, looks at my file... "Oh, you have scoliosis? When was your surgery? What did they do? How is it now? What are your curve measurements now? What were they before?"

Their fascination with scoliosis and how I have it and had surgery for it makes me wonder... Am I some sort of rare survivor? Like "Wow, we've never seen someone who lived to tell about it..."

Only kidding of course... but really. I know I'm not THAT rare! ;)

mattie
08-09-2006, 03:08 PM
I know how you feel. My father lives in a retirement complex. All the elderly people and him included think it's a miracle that I can even walk. Those old people call me a miracle child. I tried to explain to my dad that it not that rare for people to have scoliosis surgery and it is not that big of a deal. But next time I see him he is at it again. He thinks I should not do anything like clean my house, do laundry, carry in groceries or mow the yard. He says your going to hurt your back, you just had it fixed. I had my last surgery in October of last year. My GP nurse and receptionist think it's amazing that I am up and about also. I just tell everyone I feel fine and go on about my business.

Mattie

HGD24
08-09-2006, 03:30 PM
I find the same reaction when visiting doctors, even my eye doctor asked me about the surgery and my correction! I think it's just the sheer scope of the surgery has people in the medical field amazed when they meet someone who's gone through it and looks and acts fine afterwards. I'm sure they have a similar reaction to people who have had other "extreme" surgeries. I think having gone through it all, we might sometimes take for granted the true scope of what we really had done to our bodies and what we have accomplished to overcome it. I think it's a survival instinct...if we remembered all of the things we've been through with this surgery, we'd be shocked too!

sweetness514
08-09-2006, 05:09 PM
Oh yeah, and before and after surgery I'm often asked to bend down, and they check my hump...My gynecologist freaks out everytime, and I don't know why he wants to check my back. When he found out I had a broken rod last year and knew I was going in for surgery again, he was amazed at the courage I had(his words) especially since I took the decision to have surgery again(like with my other two surgeries) in a matter of hours. It is a big procedure if you think about it, and there are two ways of thinking when you bring up back issues with people. Some think that it's amazing and a miracle that we can walk just a few days after and we should stay in bed, and some just still don't get that our backs and nerves are cut open and it takes a lot of time to heal completely. It always depends on how you look at things, like if you comapre yourself to people who were in accidents and are so injured they're paralyzed.

But I will say that I have met more than a few people with scoliosis, and most of them didn't have surgery. They are scared or just try to live with it. Sometimes I'm looked at like I'm a freak by some, they just think it's weird someone would put their body through this, and that annoys me. And then the others who act like it's not that big of a deal or can be compared to small surgical procedures who don't even require general anesthesia are even worse. So I think either way people's response for the most part can be weird and it is something that can make us feel alone in what we've been through. I suppose that's to be said about anything, you can't judge or comment on someone's experience unless you've lived it yourself, but you can have compassion and try to understand.

jelysc613
08-10-2006, 09:12 AM
Oh I definitely hear you about people making comparisons to this type of surgery. I was actually just thinking about it the other day. It's hard to put it into perspective sometimes, when you have someone comparing an every day achey back to scoliosis or fusion surgery. The first reaction, in so many cases, is anger and disgust... "How can you possibly compare sleeping wrong and waking up with an achey back to what I went through!" I went through that a lot after my surgery. I was so young and felt like I had been wronged in life as it was, but then I had peers comparing sprained ankles or a broken arm to "feeling my pain of being restricted in what you can and can't do." I just wanted to scream and ask how they dare to think we're the same! I eventually learned about the variance of pain thresholds and the variance of what people think is "the worst thing ever." Still... I can't imagine walking up to a cancer patient and telling them "I know what you're going through." :rolleyes:

Mattie: Your story cracked me up because thats how much of my family was after my surgery too. Maybe some people are amazed because they think that if they went through something like that, they wouldn't get through it. I guess in a sense it's flattering. We did what we had to do to survive, and we did... survive.

HGD: You're so very right... I often forget all that I went through with this. I was 12 when I had my surgery, and I think I have just started to cope and deal with it as of this year. I had a very hard time with it back then and felt so abnormal. I have forgotten a lot of it. Sometimes I read stories on the forum and it brings back memories I had totally forgotten. Yesterday, I saw a photo of a Boston brace (which I wore for a year before surgery) and it all came flooding back... how it holds you in at the abdomen, how hard it was to eat a big meal wearing it, how the strategically placed pads pushed you in positions your body didn't want to go... I forgot everything! I actually went through the past 12 years acting like my surgery was no big deal. In the past year, I started remembering everything and thinking "It was a big deal... it was a huge deal." I think it's because I have learned more about the surgery... I was young and didn't know all they did in there. My parents did, but were they going to tell me about nerves being cut and my spine being fused? No. I went into surgery thinking it was nothing big at all, and I camr out thinking the same thing. I am finally realizing that I was a pretty brave kid :)

Ok, this got lengthy, I am done venting/ranting for now :p Thanks everyone!

dawney
08-10-2006, 04:14 PM
I went to a retirement luncheon a few weeks ago for a former colleague. I saw a lot of people I don't see on a consistent basis so a lot of them were asking about my back surgery. Someone who I have never met must have overheard and was began to tell me how they wanted to operate on his muscle spasms and all he needed was a muscle relaxer. He told me I should go see his doctor before I let anyone cut me. Interestingly he didn't ask what was wrong with my back.
Today I went for my first blood donation. One of the nurses was asking me about the surgery after she read my paperwork. She was acting as if I had something fatal. She held my hand and gave me the grandma nod and smile.

sweetness514
08-10-2006, 06:08 PM
Jen,

you brought up the Boston brace, oh my what bad memories :( I often think how much I struggled with it, the pain and how my teenage years were so hard, I couldn't concentrate in school b/c of the pain and I was tired a lot, didn't sleep much with that thing. I think how happy and pain free I was before scoliosis was diagnosed at age 12, but it also reminds me of everything I went through and it's in the past, at least I don't have to wear that now :cool:

My parents wanted me to have surgery earlier than I did, and I backed out(age 18). I think about how they were in the dark about it then and it was a good thing I didn't for that reason, among others. They really didn't realize how big of a deal it is and all the healing it takes, plus what complications can happen later on, as the doctors told them that was it after surgery, no more pain or surgeries. It's good I waited and had the support I had when I did have it, they had time to understand a bit more what it is about.

jelysc613
08-10-2006, 08:37 PM
Sweetness,

I see you spent 4 years with the brace... I can't even imagine what you went through with it for so long, and then still having to go through all those surgeries afterward. I really admire you for that perseverence, when there are so many people out there who are afraid to do anything about their backs and just surrender to scoliosis. The amount human beings can endure is phenomenal. I only wore the brace for a year before I ended up needing surgery anyway, and that year was way worse than the year after I had surgery... not to mention how cruel kids that age can be, as I'm sure you discovered as well :(

By the way, after surgery, I had a cast on for 4 months... the weekend after I had the cast removed, my parents threw me a "cast off my cast" party and we hung it up and me and all my friends beat it like a pinata :D Just a funny thought... should have thought of that for our braces!!

Suzy
08-11-2006, 12:52 PM
I am with most of you on the comments by family friends and strangers. I could not believe the negativity before I had my surgery when someone found out I was having back surgery. The x-ray tech that took my films said "I would never have back surgery ever, after seeing the results most people get" I asked her if she was talking about scoliosis correction and she said "no, but back surgery is back surgery". I wanted to smack her. She went on and on how terrible the results were that she had seen. Thank goodness I didn't have to stay long. When I was at P.T. a couple of weeks ago another P.T. patient came to ask my guy a question. He was sorry to interrupt our session then asked what surgery I had done. I told him then asked about his surgery (Knee) and he said "wow, you win". I had to laugh, I guess we really do win in the extensive surgery contest. I remember my Dr. telling me it was bigger then open heart surgery. My eye Dr. was also amazed and had a ton of questions. Being on this forum I feel like there are so many of us but if you think about where you live there aren't as many % wise so I guess we are a select few. I did find out about 3% of the poplutation has some scoliosis. So, if you think how many do not have surgery it's no wonder we are such a curiosity post-op.

PNUTTRO
08-11-2006, 03:21 PM
Thoughts that came to mind while reading this thread.
You mentioned people thinking that scoliosis surgery is an oddity and that this surgery is so extreme that people can't beleive that we choose to go through it. I have experienced those reactions, but I get the opposite too.

From an individual that has never had surgery (to my knowledge), she thought that my having a revision surgery should be no big deal. "You will bounce back quickly" Thinking in weeks (maybe days) not months.

Then when I took my daughter to her orthopedic surgeon, I said that I had had scoliosis surgery done when I was a teenager, and have never met anyone else who has had it. His response was, "but we do it all the time". . .

sweetness514
08-11-2006, 06:04 PM
Sweetness,

I see you spent 4 years with the brace... I can't even imagine what you went through with it for so long, and then still having to go through all those surgeries afterward. I really admire you for that perseverence, when there are so many people out there who are afraid to do anything about their backs and just surrender to scoliosis. The amount human beings can endure is phenomenal. I only wore the brace for a year before I ended up needing surgery anyway, and that year was way worse than the year after I had surgery... not to mention how cruel kids that age can be, as I'm sure you discovered as well :(

By the way, after surgery, I had a cast on for 4 months... the weekend after I had the cast removed, my parents threw me a "cast off my cast" party and we hung it up and me and all my friends beat it like a pinata :D Just a funny thought... should have thought of that for our braces!!

What a great idea ;) I know what you mean about other kids being cruel, I never told anybody but a few about my scoliosis and my brace, but when they touched me they felt it and most felt weird or even grossed out, how stupid :rolleyes: Then I thought how "lucky" I was, as I wore the Boston and could hide it under my clothes, where one of my friends had the Milwaukee one, oh how she got teased :(

I think there are a good amount of people who have some degree of scoliosis, but like with many health problems, not many share if they don't have to. For some it's not noticeable and I know how I used to not talk too much about my health issues, until now where I find it can help myself and others to share and even find solutions at times. People really don't understand much unless they experience it themselves. I have struggled with chronic insomnia all my life and it's even more rare than scoliosis, but most people until they experience it don't get how it can bring a person down. They think I don't sleep b/c I'm not tired :rolleyes:

Something funny happened to me in the hospital last time. A PT who helped me walk and was telling me to walk faster, as he told me my rods can't break and after a few days of surgery I should be quick and at the top of my shape. He acted all surprised when I told him I had just had surgery to replace one of my broken rods, LOL. You have to laugh at some ignorance.

Hey, life.

jelysc613
08-16-2006, 10:01 AM
Thanks to all who replied... it's funny how we've all been eyed as "miracles" but don't feel we deserve the title.

PNUTTRO and Sweetness, I've also had the opposite happen, like in your example... people thinking it's no big deal. Thats also very frustrating. The first thing most of us need is validation, and for people to respect that what we had done was a big deal and that we have every right to be angry or sad. To have someone treat you like you need to just "get over it" (whether your surgery was yesterday or 20 years ago) is never a good feeling.

On the other hand, I know I've somewhat breeded this feeling among my friends and family. Aside from my parents, no one really witnessed what happened or what I went through. Since I never talked about it until fairly recently, (or when I did talk about it, I played it off like it was no big deal so I could a.) convince myself of it and b.) not look like a whiner...) all of my friends and even my boyfriend of 4 1/2 years think it was a piece of cake and it never really affected me. My boyfriend knew a great deal about it all, but when I started actually talking more about it and "coping" about 6 months or so ago, he said "You weren't even really traumatized by it though, so why get into all of this 12 years later?" (Please note: He is not a big jerk, he's actually a very senstive guy ;) ) I got upset, but quickly realized that I'm the one who made everyone think it never mattered... and how much I went through with it that I kind of blocked out of my mind for all these years.

P.S. Sweetness - When I had my brace, spandex leggings and large tshirts were in... thank goodness!! :p

HGD24
08-16-2006, 12:47 PM
I live in different state than my family and friends from college and I too made the whole situation out to be no big deal leading up to my surgery (more for my own sanity I think). During my hospital stay, my hubby wrote nightly e-mails to our family and friends detailing all of the things I was going through and some of the things sounded pretty awful! To this day, I cry when I read some of them. After I got home, people would call to check on me and I always sounded happy and rarely complained of pain. Only my parents, in-laws and close friends who live near me now really saw what I was going through and looked like after surgery. At one year post op, I received electronic copies of my before and after x-rays and I sent them to our family and friends...it wasn't until then that most people got the real scope of what had been done. Most of them replied simply by saying "Holy S***!" They really had no idea that my back was as bad as it was. The double curves made me stand almost straight, so to the unknowing person, I looked fine. It gave both me and them a better idea of what I had really been through. I had forgotten how bad my curves were and seeing the before x-rays was a great reminder of all I had been through.

sweetness514
08-16-2006, 05:40 PM
Thanks to all who replied... it's funny how we've all been eyed as "miracles" but don't feel we deserve the title.

PNUTTRO and Sweetness, I've also had the opposite happen, like in your example... people thinking it's no big deal. Thats also very frustrating. The first thing most of us need is validation, and for people to respect that what we had done was a big deal and that we have every right to be angry or sad. To have someone treat you like you need to just "get over it" (whether your surgery was yesterday or 20 years ago) is never a good feeling.

On the other hand, I know I've somewhat breeded this feeling among my friends and family. Aside from my parents, no one really witnessed what happened or what I went through. Since I never talked about it until fairly recently, (or when I did talk about it, I played it off like it was no big deal so I could a.) convince myself of it and b.) not look like a whiner...) all of my friends and even my boyfriend of 4 1/2 years think it was a piece of cake and it never really affected me. My boyfriend knew a great deal about it all, but when I started actually talking more about it and "coping" about 6 months or so ago, he said "You weren't even really traumatized by it though, so why get into all of this 12 years later?" (Please note: He is not a big jerk, he's actually a very senstive guy ;) ) I got upset, but quickly realized that I'm the one who made everyone think it never mattered... and how much I went through with it that I kind of blocked out of my mind for all these years.

P.S. Sweetness - When I had my brace, spandex leggings and large tshirts were in... thank goodness!! :p

I can't stop replying to your thread and posts, forgive me for having a big mouth but I can't believe how I agree with all your posts and have been feeling almost the same feelings.

I often compare myself and the crappy post op care I got when I had surgery, and blame a lot of the pain I had and some of the complications on the orthos b/c they quit giving me pain killers really quick, and it does get me pissed, but I can't know for sure. But like my hubby says there is no use in rehashing the past(even if it is affecting some of my present) and it won't change things. I do get how when we're young we don't see how everything really is or are aware of things, and there's good and bad in that.

I was a weird dresser in High School, kinda punk rock. LOL. Like you, spandex leggings and jackets/loose tops were a blessing. But when I hit 16-17 and became more feminine(I was a late bloomer), man did I start to ditch the brace.

Anyway, thanks for starting this thread and talking about real things. It feels good to share this stuff, and I know what you mean about letting things out and it's ok, without being told to get over it.

Take it easy :cool: