Patient Comments: Scoliosis - Diagnosis

How was your scoliosis detected and diagnosed?

Published: July 12

I am a 55-year-old female who was diagnosed with scoliosis at the age of 12. I wore a Milwaukee brace for two years as prescribed by an orthopedic surgeon. I have suffered from muscular pain all of my life. Three years ago, my right shoulder began hurting so bad, I could not stand it. A few months into this pain, my right arm and hand started going numb and having bad spasms. Eventually, I could not use my right arm or hand. I went to a neurologist immediately and was diagnosed with spinal stenosis. I was put in the hospital immediately because the neurosurgeon said that I was in danger of my bowels and bladder shutting down. I had five vertebrae in my neck fused. I regained use of my right arm and hand, but since the surgery, my lower back and hip are killing me. I am in pain every single day. The neurosurgeon who did my surgery as well as my primary care doctor say it is due to my scoliosis. I never had this kind of pain before the surgery! Also my right arm and hand are going numb again. I take pain medication daily and had an epidural steroid shot last week. However, nothing stops the pain. I now walk with a limp and am so depressed I don't know what to do. I have no quality of life anymore. I am very skinny and weak. I am currently researching a new neurosurgeon. I will try anything to relieve this pain! I feel for anyone who is suffering from severe scoliosis. I had no idea when I was young that my body was going to fall apart like this!

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Comment from: Mary in PA, 45-54 Female (Patient) Published: June 18

I was diagnosed in the late 60's when not much was known about scoliosis and I had no real trouble until I hit my mid to late 40's, now I have constant low back pain, hip pain, spine pain, and burning sensations in my spine and legs. I can't work any longer and was denied Social Security. I live on prescription meds just so I can function somewhat normally. I wish there was the close monitoring then like there is today.

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Comment from: Lynn, 45-54 Female (Patient) Published: May 07

It is my whole right side, is what I would say for years. I am 46 years old and have had pain on my right side for 2-3 years. Over a period of 2 years, I have had among other things, an MRI of my brain and told that everything is fine. I am perfectly fine, but should come back for another brain scan in 6 months. Changed doctors and had an x-ray of my thorax because of back pain, went to physical therapy for 8 weeks. Still wasn't informed I had Scoliosis. Pain and uncomfortable feeling resided always so I decided to get a copy of my x-ray, to show a Chiropractor. Was I surprised to see the report say scoliosis? Had no idea, I am starting to research scoliosis and will make an appointment with my MD. I kept saying it hurts right along here, and pointed directly to my spine area with the curve, but I also stated all sensations going into my arm and leg and my whole right side, it sent the doctors looking elsewhere I guess. I t is my whole right side is what I would say for years. Scoliosis explains a lot. I hope with this knowledge, I can maintain a better comfort level. I am a hiking and outdoor enthusiast, and hope to maintain that.

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Comment from: Andrea, 35-44 Female (Patient) Published: June 30

My name is Andrea 40, I was diagnosed with infantile idiopathic scoliosis at 2. I have had 2 spinal fusions at age 2 and 10. When I was 21 I decided to have and anterior and posterior fusion with rods. All was going well until I turned 30. I had a urinary tract infection that i let go untreated which attacked my rods causing major abbesses that ate away most of my thoracic cavity and was inches away from attacking my heart. Moral of my story when you're sick and need antibiotics take them (all of them) It's not worth another surgery and weeks upon weeks of I.V. antibiotic therapy.

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Comment from: Elena2011, 55-64 Female (Patient) Published: June 10

I was diagnosed with scoliosis when I was 9. At that time I came from Cuba without knowing the language and my parents were told I needed to wear a brace. However I panicked over the many changes of a new country such as the language barrier and did not want to have a brace. Now I am 60 and I have done yoga for several years, praying that I can live a few years longer with this crippling disease.

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Comment from: Dr.kafel, 13-18 Female (Patient) Published: March 29

I'm a 17-year-old female. I was diagnosed with scoliosis six years ago. It's about 35-40. I refused to take the surgery. Instead, I do the exercises my doctor gave me. They're perfect. I really feel good when I do them (regularly), but my spine's never going to be normal, anyway. I don't worry about that too much.

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Comment from: Have Faith, 35-44 Female (Patient) Published: March 29

I am a 42-year-old female diagnosed with an “S” curve at age 12. I wore a back brace for five years. I wore it 23 hours a day – I got a one hour break for a shower. It was very hard being an adolescent going through dating/teen years. I was upset to read that girls are not wearing the back braces because of being scared of their friends and what they thought. I wore mine: period. No matter what, I went in every six months for X-rays, and once a year I had to be fitted for a new brace. I was blessed to have parents that took care of this medical condition. I would love to reach out to the girls who are having a hard time with this. I understand. I try to stay positive about it. I do not wear certain clothes because it does show one shoulder blade sticking out. But I could have a lot worse problems. I don't mean to make light of this. It is very hard to deal with as a teenager, but life goes by so fast looking back!

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