As June is Scoliosis Awareness Month, I have been sharing your own inspiring scoliosis stories across my blog and Instagram.
I will be continuing this feature going forwards, as I think it’s so important for us to keep talking and sharing stories!
If you would like to share your own scoliosis story, please email me or DM me on Instagram. 🙂
My Scoliosis Story – Isabel
Hi, my name is Isabel. I’m from Rehoboth, Massachusetts, USA and I will be 55 in September. My scoliosis journey is a very long one.
I was born in mainland Portugal in 1966 in my grandmother’s home. My mother noticed something wrong with my spine that very evening when she was bathing me. She took me to the doctor the very next day, but being the times and the place she was told that I was just a newborn with pliable bones and as they strengthened they would eventually straighten.
Obviously, my spine never straightened and my parents did keep an eye on me. We eventually came to the states in early 1969. I never had any issues other than my mom hemming my pants differently as it seemed I always had one leg shorter than the other.
As I became a young woman my parents had me see a chiropractor and eventually an orthopedic surgeon who did recommend surgery when I was just shy of my 17th birthday. I was stubborn and vain. Not suffering any pain at the time and not wanting any scars, I convinced my parents that I not have the surgery.
Life went on. I married and eventually became pregnant. I did have horrible back aches during my pregnancy, but just chalked that up to being pregnant. During our sons delivery, I experienced excruciating pain in one of my legs and eventually the loss of the use of that leg for about two days, which my ob/gyn attributed to my curved spine.
In 2005 just before I turned 39, I started have quite a few health problems. It seemed I was having imaginary kidney stones, UTIs, problems breathing. A client of the firm I worked for at the time suggested it may all be linked to my back and referred me to his back doctor.
I initially saw the doctor’s assistant and immediately was told that no doctor would operate on someone of my age. My husband and I were very insistent on seeing the doctor himself and mentioning who I was referred by. I did eventually see the doctor and he immediately became one of my favourite people. I was given full x-rays, he sat with me and spoke about my symptoms. Upon being called back to meet wiht him again, he let me know that he would operate on me and that everything I was experiencing was due to my spine started to curve inward as well as my “s” curve.
I eventually ended up having two surgeries. One in 2006 and another in 2014 for my lower spine. I have no range of motion, trouble tying my shoes, sleeping, getting up and down stairs, I suffer from a form of neuropathy and also lost feeling on the right side of my stomach and abdomen area. The first surgery left me with a very large post surgical hernation on the right side of my body which I eventually had two surgeries on. One in 2008 and one in 2016. The muscle in that area has pretty much atrophied and I look like I constantly have a large bulge on the right side of my belly and hip area.
I’ve been on permanent disability for about 3 1/2 years and just last December had surgery for an intrathecal morphine pump because of the pain I experienced on a daily basis.
Although the pump has helped me get a better quality of life, I still need to know my limitations.
The advice I think I would give to anyone reading this, is to get diagnosed as early as possible and treatment as early as possible.
I have been through horrible pain, physical therapy, hospitalizations, my first surgery was expected to be 6 – 8 hours but ended up being 16 hours. My family has suffered anxiety over me. It’s truly been a very long journey.
Thank you for letting me share my story. I know it was a long read. Thank you so much.
Thank you for sharing your story, Isabel. It sounds like you’ve really been through it 🙁
Lots of Love,
I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.