View Full Version : I need some advice!!!!

03-26-2007, 05:30 PM
My name's Nikki. I am 19 years old, and I was born with congenital scoliosis.
At birth, my mother looked into me getting surgery to help correct the curveature in my spine. Forgive me if I sound like I don't know what I'm talking about, because for the most part, I don't know. I just know, that I have congenital scoliosis, and that getting surgery to help correct the problems assiosiated with congenital scoliosis, in my case, creates the risk of me becomming paralyzed for the rest of my life. This is so, because my neck is tilted to one side, and there are tendants connecting from my shoulder to my neck that are holding my neck in a tilted position. The doctors explained to my mother that they were unsure what would happen if they were to cut the tendants holding my neck in place, and that they feared it would end in me being completely paralyzed.
I believe that doctors knowledge about congenital scoliosis has greatly increased since then, and just maybe, there is hope for me. I haven't seen a specialist about my spine in over a year, so right now, I am unaware of just how severe my curve has gotten since then.
Being this way throughout my whole life, has greatly lowered my self esteem. Because of my scoliosis, I am afraid to go out and do something with my life, such as attending college, or getting a job. I fear people will judge me on my appearence, and this scares me. I feel that I am completely capable of doing something any other normal person in this world could, but I am afraid that others won't feel the same way. It's always been this way. I've always let scoliosis ruin my self esteem. And not only is it ruining my self esteem, but it's completely damaging the relationship I am currently in.
To add to all of the stress assotiated, I have suspicions that I am pregnant because I am close to 3 weeks late for my period. I don't know what kind of risks the future holds for me or my unborn child due to the fact that I have congenital scoliosis.
I have a doctors appoitment on March 29, with my family doctor. When I go there, I am going to take a pregnancy test. Also, I am going to ask her to make a referral for me to seek medical attention about my congenital scoliosis with the right doctor.
If anyone has any advice given my situation, what so ever, please feel free to comment. Any kinf of advice would be greatly appretiated. I thank you in advance for any advice given.

03-26-2007, 07:00 PM
Hi Nikki

You should really see an orthopedic surgeon and have some x-rays done (but first find out if you're pregnant!). I know what you mean about being embarrassed to go out in public. At work the other day, my friend said that I limp. I know that I limp from my scoliosis. I asked her if she ever noticed my back. She said no so I bent forward. Then she noticed. I have a pretty big rib hump, but no one has ever noticed. It's usually the people who have scoliosis who notice others have it. If you want to go to college, go. Don't let your self esteem hold you back. You'll be happy with yourself if you just go and do what you want to do.

Houston Curves
03-26-2007, 08:31 PM
Hi! I do not have congenital scoliosis, but I do have familial scoliosis (it runs deeply in my family). Your comments bring back a lot of memories for me. I came from a very abusive house and my self esteem was so low that I would never meet another person's gaze when walking on the sidewalk - I would just stare at my feet (there are unfortunately many reasons for self esteem issues). I can remember the first time was getting intimate...the guy touched my back and said "what is that?" I could have died! I actually apologized to him!!! My scoliosis has progressed over the years, and my main issue is pain. I don't know if you have any pain with your scoliosis yet, but you'll have to trust me on this - PAIN is the most amazing equalizer (physical or psychological I think). These days it doesn't matter where I am or who is around me, when I'm in pain, all I care about is sitting down or lie down. And when I had an emergency C-section, I didn't care if my gown was closed in the back or not when the nurse came in to help me to the bathroom.

I am very happy to know that you're in a relationship (it took me far too long to find Mr. Right at 38 yrs old) and congratulations on the possible pregnancy (another thing I tried all my life for and only recently achieved). If I could go back in time and tell myself anything, it would be "You are BEAUTIFUL and don't let anyone tell you differently." Every person is a very beautiful and special person - we just don't all know it! I had twins and one is a special needs child, and if I can do ANYTHING to protect her (them really) from those feelings of inadequacy, I will. More than ever, I am now so aware of how wonderful people can be - just remember that you are worth as much as anyone else!!! I mean that most sincerely. Please let me know if there is anything I can do.

My suggestions, seek out all the information you can get and, if this is something you cannot see yourself living with for the rest of your life, then take action. As for the pregnancy, you may already know this, but they will not even consider operating until after you give birth. I doubt they will even take any x-rays, but it is well worth asking. Don't wait to see someone. One year of youth is worth so much!


03-26-2007, 10:01 PM
Hi Nikki-
I think alot of use can identify with how you feel. I am 45 now and just had surgery 3 months ago but I wore a brace for 7 years as a teen and it greatly affected my self esteem. The bright side? It makes you much more empathetic towards others that also suffer from low self esteem either because they look "different" or for some other reason. As you get older you will realize how what is on the inside really is what makes you who you are. I have a brace on now because of the surgery and I could care less if people stare. But in my teens it felt devastating. Don't let this stop you from anything- plan your life! And as soon as you can you need to go to a very good doctor who specializes in scoliosis. My curve was very severe and I went to Dr. Boachie in New York. He is excellent. I will pray for you!

03-27-2007, 02:12 AM
Hi Nikki,

Your post here has not only hit home with me as far as self esteem, but also the fear of being pregnant at a young age.

I think only those of us with scoli can understand how it can lower our self esteem, I know it made me feel unworthy as a young person. But I now know that's not true!!!

I wish I would have had this kind of support system at such a young age!!! You can do what ever you want to do!!! I personally felt deformed, and was degraded having to wear my brace through junior high and some of high school.

Don't think you have to settle!!! You can do what ever you want to do!!!

And now that we know we can be corrected successfully, at any age, the younger the better, the world is your oyster!!! I know that's an old expression, but don't give up!!!

Don't let this keep you from following your goals and dreams!!!