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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