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 and Spine Health groups, 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?

@ldawn

I understand; giving up what we love to do is hard. Can you be involved with horses in another way, like a 4 H program? Have your doctors suggested anything besides medication?

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Yes, I have worked with many interventions over the past 15 years.
Medication, and keeping active with my gardens and little farm are what is the most viable for me at this time. I would have kept my horse even without riding, but a 1500 pound animal even bumping me unintentionally could put me on the ground. I do get to see her regularly though. How are you doing with activities?

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Hello @oliviab,

Welcome to Connect. You may notice that I moved your message and combined it with this existing discussion. I did this as I thought it would be beneficial for you to be introduced to the many members who are also talking about scoliosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s a Q&A from Mayo Clinic about "Untreated Moderate to Severe Scoliosis May Continue to Progress” that might interest you – https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-untreated-moderate-to-severe-scoliosis-may-continue-to-progress/

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@kanaazpereira

Hello @oliviab,

Welcome to Connect. You may notice that I moved your message and combined it with this existing discussion. I did this as I thought it would be beneficial for you to be introduced to the many members who are also talking about scoliosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s a Q&A from Mayo Clinic about "Untreated Moderate to Severe Scoliosis May Continue to Progress” that might interest you – https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-untreated-moderate-to-severe-scoliosis-may-continue-to-progress/

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Thank you for for your help.

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Too whom it may concern my first name is Veronica Lynn schenck I know that I have scoliosis too in my back too how can I get my back fixed too I am disabled and live on my own one bedroom apartment and am disabled too and I am 43 years old too I live in the United States of America too and I live in Cranston Rhode island near broad Street near edge wood elementary school on Wentworth Ave in Cranston Rhode island 02905 what doctor's could take a look at my back and do surgery on my back if they think if it is that bad too because sometimes I can't stand the pain at all and the closest hospital would be Rhode Island hospital too for the scoliosis too please let me know by finding me a really good doctor too look at my back and do e x s and what ever else they need too do and if they need too admit me too do the scoliosis surgery they can find a really good doctor too for me too please message me back.

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@vschenck

Too whom it may concern my first name is Veronica Lynn schenck I know that I have scoliosis too in my back too how can I get my back fixed too I am disabled and live on my own one bedroom apartment and am disabled too and I am 43 years old too I live in the United States of America too and I live in Cranston Rhode island near broad Street near edge wood elementary school on Wentworth Ave in Cranston Rhode island 02905 what doctor's could take a look at my back and do surgery on my back if they think if it is that bad too because sometimes I can't stand the pain at all and the closest hospital would be Rhode Island hospital too for the scoliosis too please let me know by finding me a really good doctor too look at my back and do e x s and what ever else they need too do and if they need too admit me too do the scoliosis surgery they can find a really good doctor too for me too please message me back.

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Hello @vschenck, welcome to Connect. You may notice, I edited the last sentence of your post to remove your phone number. I did this because Mayo Clinic Connect is a public site and it is important to protect your private information from potential spammers and salespeople. If you are replying by email, it is important to also know that your email generates a post on the Mayo Clinic Connect website in the discussion you are responding to and that is a public site. You can always click on VIEW & REPLY in your email notifications to understand where your post goes on the website in the discussions that you are participating in.

@vschenck, If you are comfortable sharing a bit more while we wait for other members to share their insights with you, have you had any contact with the Rhode Island hospital?

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Hi everyone — I see that there is a Video Q & A on Scoliosis today that you might want to watch.
https://connect.mayoclinic.org/webinar/video-qa-about-scoliosis-1/?date=1561680000

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Hi, I'm 72 years old still fit and trim. Was a 3-5 mile daily runner until spring 1999. Experienced numbness in left cheek that eventually spread throughout my body…pins and needles, tearing flesh feeling, partial paralysis of my legs and intense, round the clock solid pain in my tailbone area. I had 3 epidurals, 2 guided to no effect. I spent several years seeing different physical therapists and chiropractors. I tried TENS but it was no relief as was the case from a not-so-good acupuncture western doctor at a pain clinic. 1600 mg of Neurontin & 10 mg of Flexeril at night for 9 years allowed me to recover some strength at night to make it through pain filled days. A orthopedic doc, who by coincidence, I had seen the year before for my first back issue, said I had a dramatic deterioration in my discs, thus the degenerative disc and osteoarthritis disorder. Nothing was ever said about the pins and needles, burning, numbness and partial paralysis in my arms and legs. Those symptoms gradually faded with the meds and some sleep but the tailbone was the predominant issue. I retired early 8 years after onset and reduced my meds in favor of ibruprofen and other stretching and exercises. Gradually, what I experienced as cold feet crept up my legs as pins and needles and burning. I have refused to go beyond 600 mg of Neurontin at night and 5-10 mg of Flexeril except on a brief occasion when I got a diagnosis of Small Fiber Neuropathy. Three years ago, I had a compression fracture in my thoracic spine when picking up my 85 lb. dog, something I used to do regularly when he was 100 lbs. I was given a diagnosis of Osteopenia. By the way, I read one article on the web that Neurontin leeches calcium from the bones. Two years ago I was told that I have scoliosis which seems to be worsening. I do spend too much time sitting at the computer which is not good for this condition but what else is there to do that keeps me mentally engaged.

My question to the group, is there anything that can be done to bring the spine back into alignment? Is there a brace or harness or something one can wear to accomplish this?

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Hello. I recommend seeing a neurosurgeon. I suffered with similar symptoms, including scoliosis. I was able to see a top notch surgeon at Barrows Brain & Spine last year. He straightened my spine via fusion and a lot of disc work. Today. One year later, I’m pain free. The fusion creates some restrictive movements, but worth it! Best of luck to you. I had the surgery at age 66.

Liked by jager5210

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@jamaz

Hello. I recommend seeing a neurosurgeon. I suffered with similar symptoms, including scoliosis. I was able to see a top notch surgeon at Barrows Brain & Spine last year. He straightened my spine via fusion and a lot of disc work. Today. One year later, I’m pain free. The fusion creates some restrictive movements, but worth it! Best of luck to you. I had the surgery at age 66.

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Thanks

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@vickiekay

I am very happy to join in on a discussion about scoliosis. I have had severe rheumatoid arthritis for 30 years and am now 57 years old. In 2004, I had a laminectomy and a discectomy on L4-L5….and since then, severe scoliosis has developed. My spine has two curves and a LOT of pain that has led to using a small electric scooter (called a Luggie) since I cannot walk distances.

I have tried many things for relief. In addition to my RA meds including Enbrel, Prednisone and anti-inflammatories, I am on Cymbalta, Hydrocodone and Fentenyl patches since the pain is so horrid. Acupuncture, massage therapy and yoga have all offered some relief.

But the BEST relief has been Rolfing! It has been an amazing process that is best described as deep tissue work on pressure points. I HIGHLY recommend this if you are suffering. Look it up on the internet and find a certified Rolfer. There are two groups who do this type of work: Rolfers and Structural Body Integrators. The people who do Rolfing, in my experience, are MUCH more effective in helping me. After seven sessions with a Rolfer, I am now able to walk a short distance — and people are noticing that I am not bent to the side like I had been! Hooray!

I just ordered an infra-red heating pad from Amazon and it will arrive tomorrow – the infra-red heat is supposed to be more penetrating than a regular heating pad….so I keep trying “stuff”…..anything to feel better!

I will look very forward to hearing what has worked for the rest of you! Thanks for sharing!
Vickie

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Great post and best wishes…

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Hi all! I am almost 53 years old. I am introduced myself to the group. I had a spinal fusion with a Harrington Rod in 1980 at 13 years old. I had back problems, anxiety, fibromyalgia through the years but managed to raise 4 children, work, get a BA in psychology and lead an active life. The past few years since menopause my symptoms got worse. The past 5 months I am in extreme pain and got diagnosed with sagittal plane imbalance with flatback, forminal stenosis, broadbase osteophyte complex, ddd, slipped disc, bulging disc etc… I work as a design consultant in a fast paced sales environment on concrete flooring. My knees, hips joints and of course my back gets worse by the day. My DRs say to suck it up but my performance is failing and I’m getting no sleep and am depressed. I can’t go broke but can’t continue this type of work. I used to sit and it was just as hard because I was stiff.

I don’t tolerate meds too well. GAbapentin makes my breathing weird and flexeril is iffy too. How does everyone handle life in pain? My only option is finding a specialist in revision surgery that’s super risky. Thank you for any information.

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@nicoleo

Hi all! I am almost 53 years old. I am introduced myself to the group. I had a spinal fusion with a Harrington Rod in 1980 at 13 years old. I had back problems, anxiety, fibromyalgia through the years but managed to raise 4 children, work, get a BA in psychology and lead an active life. The past few years since menopause my symptoms got worse. The past 5 months I am in extreme pain and got diagnosed with sagittal plane imbalance with flatback, forminal stenosis, broadbase osteophyte complex, ddd, slipped disc, bulging disc etc… I work as a design consultant in a fast paced sales environment on concrete flooring. My knees, hips joints and of course my back gets worse by the day. My DRs say to suck it up but my performance is failing and I’m getting no sleep and am depressed. I can’t go broke but can’t continue this type of work. I used to sit and it was just as hard because I was stiff.

I don’t tolerate meds too well. GAbapentin makes my breathing weird and flexeril is iffy too. How does everyone handle life in pain? My only option is finding a specialist in revision surgery that’s super risky. Thank you for any information.

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Good afternoon and a huge welcome to you @nicoleo. I am so glad you found Connect. You have had some very rough times. I am amazed at how much you have accomplished.

You are the same age as my daughter. I had a similar back surgery when I was 25 or so. Like yours, that surgery led to others. I was in a carpool and when it was my turn to drive, I let someone else drive my car so I could lie down in the back seat. When the pain became very bad and I was in my office, usually in the afternoon, I would just lie on the floor during staff meetings and sessions in my office. How did you get through the day? So I handled pain at that time the same way that you have been handling pain.

After a while, you can no longer suck it up. You mentioned that your doctors told you that. Under what premise about your health conditions are they saying that? What do your doctors tell you about your future? You have a lot of life to live.

So I gave in and had revision surgery when I was 37. That one worked and is still working today. The key factors…..I became very active…..yoga, walking, hiking, rollerblading, sailing, biking, even golfing. And I went to a trainer to learn about back exercises which I practice daily. Although the surgeon said I might have to have another "revision" in ten years….I am now 77 and have avoided back pain and another surgery.

You have a very busy life. Do you have help? What ages are your children? Remember, Connect is a group of non-medical folks who have learned to live as well as possible and are willing to share their experiences with others. May you be safe and protected. Chris

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@gailb

@jeriliz, I too was told about 15 years ago that I have scoliosis. I remember having to wear leg braces with big oxfords when I was young. They were probably to correct something to do with the scoliosis, no one ever told me why. Only recently has it become a problem as my back is giving up to degenerative disk disease and all the other problems that happen to lumbar disks. I had a laminectomy in December, 2016, and was on 3 different prescriptions for pain and muscle spasms. I have stopped taking 2 of the drugs and now only take Tramadol primarily for my arthritis. I decided feeling the pain was preferable to feeling drugged and goofy. Good luck with your scoliosis.

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My 13 daughter has 55 degrees curve and has been treated with brace. We think about getting the minimally invasive surgery which we don't know much about this yet.

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My 13 years old has 56 degrees scoliosis and needs the surgery, we think about the minimally invasive surgery

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@kdubois

Would love to talk about this topic! I was diagnosed with scoliosis at about age 12, but I never wore a brace. Though it never got super-bad, I don’t like my posture, so I am scheduled to begin yoga in May as I’ve read that it can help. I also bought a device that is worn that keeps reminding you to sit upright when you slouch, but I haven’t tried it yet.

Unfortunately, my daughter inherited it from me, and she was diagnosed by age 10. After wearing a brace for several years, it still progressed enough to be very visible, and it would have started damaging her internal organs, so in December 2014, at age 12, she had spinal fusion. she has two titanium rods aligning her spine with screws holding them in place. It’s a rough surgery to go through, but her surgeon made it clear that the longer we waited to do the surgery, the harder it would be on her to recover.

The fusion has helped her significantly; we no longer have to worry about damage to her internal organs, there’s no curvature visible at all, and clothing fits her much better. If you didn’t know she had the surgery done, you wouldn’t even know it because her scar is barely visible at all. She still grew some at the top and base of her spine, so she’ll be a nice height in adulthood.

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I wonder where did she have the surgery? Was the minimally invasive surgery?

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