Scoliosis - Introduce yourself and meet others

Posted by Justin McClanahan @JustinMcClanahan, Apr 25, 2017

Let’s talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles group, I’ve noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let’s chat. Why not start by introducing yourself?

(Female) Hi I was diagnosed with mild scoliosis when I was 13, it has been very slowly getting worse I am only 21 now but I would really like to know if it has caused many other medical problems in other people. I also suffer from chronic back pain but I am unsure if it is solely related to the scoliosis as it as not a severe curve. I have many ongoing problems with my reproductive system and genital area and I would really like to know if anyone else suffers the same or similar. I am really stumped for what to do because not many doctors seem to take me seriously they just give me pain relief and time off work, nothing long term. I am in a really tough spot at work now where they are monitoring my time off and treating me like an immature child for example in meetings I get told “it’s good to see you’re turning up for your shifts” and I have also been told that at this point I don’t really have a choice and that I would have to come in to work in an adult diaper with pain or they would refer the meetings to HR to put me down for ‘not fit for work’( I work at a hospital in administration) I really would like to be at work as I need the money as I am recently married, so all of this is also having a really bad effect on my mental health! Sorry to ramble on I am just trying to put it all out there because I feel like I’m not getting anywhere with anyone else.

@sophee

(Female) Hi I was diagnosed with mild scoliosis when I was 13, it has been very slowly getting worse I am only 21 now but I would really like to know if it has caused many other medical problems in other people. I also suffer from chronic back pain but I am unsure if it is solely related to the scoliosis as it as not a severe curve. I have many ongoing problems with my reproductive system and genital area and I would really like to know if anyone else suffers the same or similar. I am really stumped for what to do because not many doctors seem to take me seriously they just give me pain relief and time off work, nothing long term. I am in a really tough spot at work now where they are monitoring my time off and treating me like an immature child for example in meetings I get told “it’s good to see you’re turning up for your shifts” and I have also been told that at this point I don’t really have a choice and that I would have to come in to work in an adult diaper with pain or they would refer the meetings to HR to put me down for ‘not fit for work’( I work at a hospital in administration) I really would like to be at work as I need the money as I am recently married, so all of this is also having a really bad effect on my mental health! Sorry to ramble on I am just trying to put it all out there because I feel like I’m not getting anywhere with anyone else.

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Hi @sophee I am 52 & have Scoliosis my curve is only 20 but I have had lower back pain most of my life. I was told I would never have a child went to fertility dr for 2 years. But after giving up finally became pregnant at 29. So it can happen. This last year or so everything seems to be getting worse. Changed from an orthopedic surgeon to a neurosurgeon & within 5 minutes of meeting him he ask to actually look at my back and not just MRI’s & told me I have flatback syndrome. I can say I appreciated a fellow patient advising me to see a neurosurgeon if I needed back or neck surgery. Yes to the mental issues. I’m really not sure how chronic pain couldn’t cause depression. I hope some of this helps. Hang in there!!!

They also have a scoliosis group.

@sophee

(Female) Hi I was diagnosed with mild scoliosis when I was 13, it has been very slowly getting worse I am only 21 now but I would really like to know if it has caused many other medical problems in other people. I also suffer from chronic back pain but I am unsure if it is solely related to the scoliosis as it as not a severe curve. I have many ongoing problems with my reproductive system and genital area and I would really like to know if anyone else suffers the same or similar. I am really stumped for what to do because not many doctors seem to take me seriously they just give me pain relief and time off work, nothing long term. I am in a really tough spot at work now where they are monitoring my time off and treating me like an immature child for example in meetings I get told “it’s good to see you’re turning up for your shifts” and I have also been told that at this point I don’t really have a choice and that I would have to come in to work in an adult diaper with pain or they would refer the meetings to HR to put me down for ‘not fit for work’( I work at a hospital in administration) I really would like to be at work as I need the money as I am recently married, so all of this is also having a really bad effect on my mental health! Sorry to ramble on I am just trying to put it all out there because I feel like I’m not getting anywhere with anyone else.

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Sophee, so sorry you are being hit by one of the most unhealthy places to work in for its professional bullying tactics and thats in a hospital setting. I did over 45 yrs of my younger life, working as a nurse. And on hindsight bullying was rampant back in the 60s.
You certainly have many 'things going on' but for your back I can only sggest getting a good physio or I think you call them PT and get a set of exercises. the important thing is to get those supporting ligaments and muscles keeping your back straight and with the natural curve in it. Having problems with your pelvic organs is a worry, and I am guessing well investigated, one would have to wonder if you have either pinched nerve or maybe something similar to a spina bifida defect, but that would have been picked up on Xray.

I did work as a nurse with pain and illness, Im more obstinate than my donkey. And at times would leave my shift as unable to continue. That also met with sarcasm. As did my slowly fading away and heading for the coffin. I never shared my pain, my reasons with my co-workers, and that also met with bullying so you wont win which ever way you try to cope. So Im guessing since you need to work then do go. As I dont believe the USA has a good disability system or attitude.
I am now at the end of the 3 score and 14 life span, and no longer go to docs for treatment but wanting to know the diagnosis so that I can manage myself. One would think that would please them, but no it brings more arrogant attitude and refusal to help. But for me its how I can best manage if I know what is what. [different to my scoliosis,] I hope you can find out there someone to be part of the team with you, that can guide you on coping, and managing and slowing down 'things'
Yes pressure on the nerves can cause pain and dysfunction of pelvic organs

@sophee

(Female) Hi I was diagnosed with mild scoliosis when I was 13, it has been very slowly getting worse I am only 21 now but I would really like to know if it has caused many other medical problems in other people. I also suffer from chronic back pain but I am unsure if it is solely related to the scoliosis as it as not a severe curve. I have many ongoing problems with my reproductive system and genital area and I would really like to know if anyone else suffers the same or similar. I am really stumped for what to do because not many doctors seem to take me seriously they just give me pain relief and time off work, nothing long term. I am in a really tough spot at work now where they are monitoring my time off and treating me like an immature child for example in meetings I get told “it’s good to see you’re turning up for your shifts” and I have also been told that at this point I don’t really have a choice and that I would have to come in to work in an adult diaper with pain or they would refer the meetings to HR to put me down for ‘not fit for work’( I work at a hospital in administration) I really would like to be at work as I need the money as I am recently married, so all of this is also having a really bad effect on my mental health! Sorry to ramble on I am just trying to put it all out there because I feel like I’m not getting anywhere with anyone else.

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HI Sophee……my scoliosis was not diagnosed until after my first baby at 32…..It has gotten worse but kept at bay by my chiropractor of 25 years!!!! I am starting to walk unevenly at 75, probably because of how my shoulder leans over a little BUT have never had any organ system or health problems based on the scoliosis. Maybe an overall medical evaluation would help.

Thankyou everyone for your advice! I probably should have mentioned my spinal curve starts at my pelvis and bends to the left, my pelvis is at different heights so I have one longer leg by about 2cms. And also I was told that it has a twist (outward) at the middle of my back and at my neck. They told me when I was 13 I might have trouble giving birth naturally because the opening is off Centre. This is why I was wondering if it could be causing all those problems in my pelvic region!

@sophee

Thankyou everyone for your advice! I probably should have mentioned my spinal curve starts at my pelvis and bends to the left, my pelvis is at different heights so I have one longer leg by about 2cms. And also I was told that it has a twist (outward) at the middle of my back and at my neck. They told me when I was 13 I might have trouble giving birth naturally because the opening is off Centre. This is why I was wondering if it could be causing all those problems in my pelvic region!

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you are probably much worse than me, but I got kicked in the back by my sister when I was about 10 and the start of my back problems, Its only ever been noted when Ive had other xrays etc. that I have a twisting scoliosis. [about 8yrs ago] prior to that it was only reported as scoliosis and spurs on the thoracic level. Apart from seeing my physio , I basically see that my software[ muscles] keep the hardware [bones] as straight and strong as possible. Resting during bad times and pushing to the extreme during the good times. do you do swimming so that you are exercising with no weight bearing??
as for natural birth, babies are pretty squishy during birth, and unless its really narrow [ your obstetrician] will know if its going to be a planned bypass or a have a go level of difficulty

Kathy W, 58 years old, had Herrington rods when I was 15, replacement rods when I was 29 and total reconstruction when I was 49. I developed flat back syndrome and was so bent over I couldn't walk more than 10 yards without resting. Hips are full of arthritis. I was on Darvocet at night and pain patches during the day. A specialist in Louisville replaced all the hardware and reshaped the spine 9 years ago. No I'm pain free and walk 4 miles a day. It was a struggle to find the right person to help me but I found him and glad I didn't have to travel to get there. I think there is hope for others.

@kathyw40241

Kathy W, 58 years old, had Herrington rods when I was 15, replacement rods when I was 29 and total reconstruction when I was 49. I developed flat back syndrome and was so bent over I couldn't walk more than 10 yards without resting. Hips are full of arthritis. I was on Darvocet at night and pain patches during the day. A specialist in Louisville replaced all the hardware and reshaped the spine 9 years ago. No I'm pain free and walk 4 miles a day. It was a struggle to find the right person to help me but I found him and glad I didn't have to travel to get there. I think there is hope for others.

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Hello Kathy-
I’m happy to read a post with a positive outcome. In three weeks I’m having a full reconstruction. My spine will be straightened and new hardware put in. I’m hopeful my outcome is as good as yours. I’ve put weight on as it’s become harder & harder to exercise. I’m concerned it will affect my recovery and success. I’m staying positive!
Joyce

Oh! Kathy what a wonderful story and it will give others faith and hope that they can too find someone so adaptable to these awful,things that happen to some of us thank you for telling us……Beryl

Netta here. 76 yrs. Diagnosed with severe scoliosis at age 60. My goal is to avoid surgery in my life time. Pilates 2x’s wk.

Hi my name is Cynthia and I spinal fusion in 1974 at Walter Reed Medical hospital. My rod goes from the bottom of my neck to the top of my hips. As a 14 yr old going thru pupuberty it was awful. I could not sit for an entire year because my rod extended down so far. I wore a body cast for a yr and kids at school made fun of me everyday. I am now 58 yrs old and have never had an issue with my rod or spine. No pain however watching me getting up from sitting on the floor is a sideshow. You adapt and know your limits. I have a scar the complete length of my spine and would wear a bikini in younger years. I have never been ashamed of it. I call it my battle scar. Things were so much more primitive 44 years ago but I had great military doctors

@nettamae

Netta here. 76 yrs. Diagnosed with severe scoliosis at age 60. My goal is to avoid surgery in my life time. Pilates 2x’s wk.

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@nettamae, welcome to Connect. It sounds like the pilates must be helping since you have avoided surgery already for 16 years. How are you doing with pain and how much does the pilates help?

@muffincat

Good morning all, I was kicked in the lower back by my sister when I was aged around 10, I still remember the months of pain at the time. Then the on going problems. AS a teenager I put it down to having ‘nurses back’ in those days no lifting gear available.
The first mention was when I was around 40 and an Xray mentioned mild scoliosis, and then when 55 an Xray reported twisting scoliosis.
Ive never had special treatment for it, apart from physio to keep me going from acute episodes.
Now Im about to hit 70, and finding that its getting more restrictive,
hoping to get to know you all and learn the tricks to keeping on keeping on!
MuffinCat

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I have a similar situation with scoliosis but I am 55 now. I also have other problems with my neck and very low back and pelvis. Suddenly got considerably worse a few months ago. Nothing is helping the pain and flare ups. I am worried or my future.

Hello. I’m Jackie… live in Canada. Finding in my “old”age now: more and more back issues…. trying to determine if it’s from my scoliosis: or if it’s other causes etc…. and looking for ideas or proactive solutions from others going through similar experiences

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