Scoliosis Support Group
Scoliosis affects all ages. Unlike the naturally occurring curves in the spine, scoliosis causes the spine to curve abnormally to the left or right.
deleted_user
Hi everyone! Basically I haven't really told my story to anyone and I could use some advice or maybe just someone to read and relate to!
Here is my story: I was diagnosed about a year and a half ago with scoliosis at the Shriner's Hospital in Erie, PA. I am currently 19 years old. They told me that obviously it was too late for bracing and that when I was younger I had a slight curve that they thought as I grew, would straighten without a brace because it was mild. It didnt. Anyways when they diagnosed my scoiliosis, I can't remenber the exact degree (i wanna say 36, i know i should probably know this! )-either way they did not mention anything about surgery. Afterwards I had complained to the doctor about having back pains inbetween my upper back and one particular shoulder blade and didnt know whether it was from playing tennis or not. ( By the way the scoliosis in my back is lower affecting my hips- they are uneven) As for my shoulder pain they recommended back exercises. When I was diagnosed, I was in total shock that I even had scoliosis. Therefore,I was basically speechless when it came to asking questions. That leads me to where I am now, still with constant back pain in my shoulder(i do the exercies they recommended too)..the pain usually hurts more when I am at work standing for 8 hrs, sitting during school, and even when I am sleeping. I can never lie flat on my back comfortably, I sometimes wake up because my back hurts so bad. Which reminds me- I went back a second time to shriners, about 4 months ago, to ask what I could do about the pain and unfortunately didnt even get to talk with the doctor! I got his assistant instead, who told me that everyones backs hurt while standing for 8 hours and redirected me to the physical therapist who went over the same exercises he gave me the first time i went there. While I was there, I felt extremely out of place seeing how all of the patients there were under the age of 10. I sometimes feel that they didnt take me seriously or may have given up on me right from the start because of my age. Recently, I have done some research and realized that I may have khyphosis? My Mother and Grandfather both have it severely. I had also asked this while at Shriners to the assistant but didnt know of the medical term it was called. I instead asked her if i was going to get "hunchback" like my mother's, but the assistant basically blamed kyphosis on bad posture and told me to just do the exercises and stay healthy? Anyways through my research, i notice i have alot of symptoms and signs of kphosis. I took ballet up until 6th grade, so I have always had decent posture but i notice now, one of my shoulder blades (the one that constantly hurts) sticks out or curves more even when i try to stand up straight and flatten my back. I am at lost what to do, because I tell my parents about it all the time and they basically ignore my complaints..they think I am over-exaggerating or blame it on the shoes I wear (half the time while I am at work I wear sneakers or birkenstocks). I feel so alone at times, even though my mother has a history of severe kyphosis and scoliosis in her family, she never wants to talk about it. She also said she never had back pain in her life so she doesnt understand why I complain so much. Any advice? Should I try going to a different doctor? Is it too late for me to get surgery? Are their any ways to keep the kyphosis from getting worse besides good posture?
Thanks a bunch to those of you who read this! Hope the best to all!
Here is my story: I was diagnosed about a year and a half ago with scoliosis at the Shriner's Hospital in Erie, PA. I am currently 19 years old. They told me that obviously it was too late for bracing and that when I was younger I had a slight curve that they thought as I grew, would straighten without a brace because it was mild. It didnt. Anyways when they diagnosed my scoiliosis, I can't remenber the exact degree (i wanna say 36, i know i should probably know this! )-either way they did not mention anything about surgery. Afterwards I had complained to the doctor about having back pains inbetween my upper back and one particular shoulder blade and didnt know whether it was from playing tennis or not. ( By the way the scoliosis in my back is lower affecting my hips- they are uneven) As for my shoulder pain they recommended back exercises. When I was diagnosed, I was in total shock that I even had scoliosis. Therefore,I was basically speechless when it came to asking questions. That leads me to where I am now, still with constant back pain in my shoulder(i do the exercies they recommended too)..the pain usually hurts more when I am at work standing for 8 hrs, sitting during school, and even when I am sleeping. I can never lie flat on my back comfortably, I sometimes wake up because my back hurts so bad. Which reminds me- I went back a second time to shriners, about 4 months ago, to ask what I could do about the pain and unfortunately didnt even get to talk with the doctor! I got his assistant instead, who told me that everyones backs hurt while standing for 8 hours and redirected me to the physical therapist who went over the same exercises he gave me the first time i went there. While I was there, I felt extremely out of place seeing how all of the patients there were under the age of 10. I sometimes feel that they didnt take me seriously or may have given up on me right from the start because of my age. Recently, I have done some research and realized that I may have khyphosis? My Mother and Grandfather both have it severely. I had also asked this while at Shriners to the assistant but didnt know of the medical term it was called. I instead asked her if i was going to get "hunchback" like my mother's, but the assistant basically blamed kyphosis on bad posture and told me to just do the exercises and stay healthy? Anyways through my research, i notice i have alot of symptoms and signs of kphosis. I took ballet up until 6th grade, so I have always had decent posture but i notice now, one of my shoulder blades (the one that constantly hurts) sticks out or curves more even when i try to stand up straight and flatten my back. I am at lost what to do, because I tell my parents about it all the time and they basically ignore my complaints..they think I am over-exaggerating or blame it on the shoes I wear (half the time while I am at work I wear sneakers or birkenstocks). I feel so alone at times, even though my mother has a history of severe kyphosis and scoliosis in her family, she never wants to talk about it. She also said she never had back pain in her life so she doesnt understand why I complain so much. Any advice? Should I try going to a different doctor? Is it too late for me to get surgery? Are their any ways to keep the kyphosis from getting worse besides good posture?
Thanks a bunch to those of you who read this! Hope the best to all!
Posts You May Be Interested In
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
For years I had doctors telling me to stand up straight never realizing that my spine was curved until it was too late to brace it. No amount of good posture is going to be able to straighten your spine or improve the kyphosis. You CAN do excersices and physical therapy to strengthen the muscles aroung the spine and that might help with your pain.
Let me know if you have any questions, I understand how hard it is to feel alone in this. GOOD LUCK!
My PT and chiropractor are constantly telling me to practice good posture, but I know what you mean, I have a lot I'm fighting against here! Just like you.
My curvature progressed from 45 to 54 degrees in 6 weeks. If they aren't concerned about it progressing any further (i.e. you're out of puberty and not into menopause is what they told me) they most likely won't do surgery on the curve itself. At least that was the thinking 20 years ago.
I AM NOT A DOCTOR, though and practices may have changed drastically since I had surgery.
If you're not comfortable with what your doctors are telling you, don't complain to your folks, but have a sit-down-heart-to-heart with your parents. Tell them exactly what you're thinking and feeling. Tell them your fears. Show them the research you've found on kyphosis. Show them what you've written here. Just keep the lines of communication open!
I could go on and on about the benifits I've seen. If you have any questions, give me a holler:)
xo, Julia
i have scoliosis and kyphosis, my degree of curve is 110 and i have a hunchback. he said that if left untreated it will keep curving till basically my spine will collapse. Maybe you should check into him.
Because in a year from now, i will be having my back surgery by him to fix mine :)