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Spring72
11-21-2010, 07:20 PM
Hello, I've been hanging around here in silence for a while...just reading and learning about you all. I have talked to a few of you and appreciated all of your advice, I've never known anyone with my condition so it's nice to talk to someone who actually understands. I have an S curvature and wore a Milwaulkee brace for 6 years, was told my curves would not progress, and never went back. I ignored my scoliosis for many years (19), had no pain or limitations. About 6 yrs ago I started to have pain and started losing some height but still would not go to the dr. guess I knew what was coming and was trying to avoid it....sound familiar? To make a long story short my increasing pain finally led me to go this past May and found out that my curves which were T30 and L38 when I was 19, are now T43 and L56 at age 38, I now have DDD and kyphosis and my spine isn't very flexible...of course now I am told by two surgeons that I need surgery and not to wait more than 1-2 years. I think I'm still in denial, I have pain meds now which help take the edge off and allow me to exercise for a little longer, I've recently lost 106 lbs and although I feel great physically the weightloss has done nothing for my back pain, which was my main goal. It's also a double edge sword because being so heavy all of my adult life my curves were not very noticable and now I see that I am 'crooked as a snake' which makes this all even more unbearable. Trying on new clothes in the dressing room just makes me ill, not only do I have alot of extra skin......I am deformed. I've never seen myself this way before, it is all very shocking and hard to accept. So much for increasing my self esteem :( After many consultations with my surgeon I have made the decision to wait.....until 2012 to have the surgery, he believes that my pain may increase but the curves won't increase enough to change the outcome and that nothing is emminent, I just need to do it when I am ready. So barring any further complications...pain down the legs, pain and limitations that I can't handle anymore ect, I am waiting and I feel a huge weight lifted off of me (no pun intended) and am planning to live this time to the fullest and enjoy my new body...crooked and all. You all have such inspirational stories, I hope someday to be able to post about my great outcome. Sorry this is such a long read.....thanks for listening :)

Elisa
11-21-2010, 07:47 PM
^^ Hello and welcome!

I think it's great that you are going to "live this time to the fullest and enjoy my new body...crooked and all."

That's interesting that you lost so much weight and now your curves are more noticeable. My son is a string bean which accentuates his crooked spine and I'm always trying to get some weight on that boy. I'm thinking if he could beef up his body his bones wouldn't show through so much. He comes by it honestly though b/c I've always struggled to keep weight on and his dad is quite slim also.

Question to members: Are most scoliosis patients thin by nature? Of all the pics/videos I've looked at lately, most seem to be on the svelte side.

Spring72
11-21-2010, 08:07 PM
Thank you for the welcome Elisa :)

It seems to me that all the scoli's I've seen on here are on the thin side also.......I must be the exception. Didn't start to get heavy until after being put in the brace, but I don't think that was the cause unless it led to emotional eating and I just never realized, that brace was a 'killer' and really messed me up....in many ways. I thought maybe my kyphosis had been getting worse recently because when I lean up against a wall the only part of my back that touches is my hump, the doc says it is not worse it is from the weightloss....who knew

golfnut
11-21-2010, 08:18 PM
Spring72,
Welcome to the forum. I think many of us try to ignore our scoliosis as if that would make it go away. I've always hated to think of myself as deformed, even though I am. It was easier to just say I have a bad back. I never even told my best friends that I had scoliosis until I made the decision to have surgery. I guess the idea that it can be corrected made it okay in my mind to admit that I had this imperfection. (It's certainly not my only one!) I'm sure you'll know when the time is right for surgery.

Mojo's Mom
11-21-2010, 09:10 PM
Spring72,
Welcome to the forum. I think many of us try to ignore our scoliosis as if that would make it go away. I've always hated to think of myself as deformed, even though I am. It was easier to just say I have a bad back. I never even told my best friends that I had scoliosis until I made the decision to have surgery. I guess the idea that it can be corrected made it okay in my mind to admit that I had this imperfection. (It's certainly not my only one!) I'm sure you'll know when the time is right for surgery.

I am the Queen of Denial...I knew my curves were progressing because I could remember when my whole back touched the floor, or the wall, and it was impossible to ignore the fact that I couldn't do that anymore. The first time I really noticed it was early in the progression, when I tried doing some stomach crunches I hadn't done in a couple of years. It was a type of crunch where you lie on your back with legs up in the air and crunch to push the legs up in the air, and the extra force felt strange and painful on the left side of my lower back. But I talked myself into believing that it had probably always felt that way, I just didn't remember. But as the hump increased, it became gradually more and more impossible to convince myself that nothing had changed. I would lean back against a wall and find I just couldn't do it. I'd try to lie on a hard surface and realize I couldn't lie flat.

The worst wake-up call I ever had was one day when I went to a lingerie store for the first time in years, and they had mirrors that showed my back view, something I generally avoided seeing. I was so shocked I just had to leave, and cried all the way home.

I also found it was suddenly easy to tell people about my scoliosis once I decided that I would have surgery. It's funny how you feel like you can "come out" about it once you can view it as something that can be fixed.

Spring72, although I have always been Skinny Minny and so can't relate to your weight problems, the rest of your story could be mine. I understand where you've been! And I have chosen to wait a year or two for my surgery, even though my curves are bigger than yours and I am in considerable pain, with radiating pain all down my left leg and into the foot.

Don't settle for less than one of the top surgeons, by the way. Go where you need to go. I'll go halfway across the country, and it will be worth it.

Doodles
11-21-2010, 09:59 PM
Spring 72
Welcome to the forum! You have such a great attitude about going forward when you feel ready for the surgery and enjoying it all before then. I think you'll do great with those plans and get lots of support from here. Take care. Janet

Spring72
11-22-2010, 08:13 PM
Thank you all for the warm welcome, I'm sure I will gain much strength from all of you :)

Golfnut-
I too didn't tell anyone about my scoliosis until I found out that I needed surgery...I don't know anyone personally that has it so ppl just don't understand any of it either. The only ppl who knew anything about it said, "oh, was that why you wore that brace in high school"? That's how I am remembered........the girl in the brace :(

Mojo's Mom-
I am glad and sad at the same time that you can relate to my story, but it nice to know.....misery does love company ;) I am planning on having the surgery in my hometown because I don't like the idea of traveling after such an ordeal, but I do believe that I may re-evaluate my options when the time comes.

Doodles-
Thank you for the support.......I do hope I can keep up the great attitude!

jeneemohler
11-22-2010, 11:24 PM
Welcome!
You will find amazing information and support on this site. The longer you hang around, the more you find in common with other scolis. It has been a lifesaver for many of us, to have someone who truly understands our situation and who so willingly helps with all of our questions. People who do not have it just cannot understand. We are here!

I made up my mind a couple years ago that surgery was inevitable. But it seemed unreal. I just kept putting it off until next spring, next winter, next spring..... But then my pain level took a change for the worse this past 6 months, and I shrank 3". I knew I had run out of time. You, too, will know when you have reached the end of the procrastination! Hooray for you, to choose to live this last span of time before surgery with a great attitude. Do some things you think you may not do after surgery. No regrets!!

Spring72
11-22-2010, 11:48 PM
Thank you Jenee' for the warm welcome :)

I am a long standing member of the procrastinator club..idk, maybe that will change sooner than I think :eek: You are right and I do believe I will know when the time is right for me.....hoping I don't put it off too long. I really need a push to do something 'big', I don't deal with change very easily. I'm glad you have decided to go for it........I see you are set up for January, good luck to you, I will be waiting to hear about your wonderful outcome :)