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?

Please join me in welcoming new members @llarosa @scottanthony @burt61414 @liv1993 @mlowe @sueh62 and @3naneri to our scoliosis group on Connect.

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@scottanthony

Scott 56 year old male have had life long symptoms from scoliosis. I was aware of the condition at age 17, after years of back pain.

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Hi Scott,
It sounds like you are writing about back pain in the past tense. Do you still have back pain or have you found relief? How are you managing your pain?

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@burt61414

Burt davis. Diagnosed with scoliosis and osteoarthritis about 10 years ago. Progressing and now have no ability to stand for more than 15 minutes.My curve is approaching 55 degrees. Severe radicular pain and weakness in my right leg. Preparing for laminotomy on two levels of my lumbar spine this June at Mayo. Hoping for increased mobility not pain relief. I was walking 18 hole golf courses 2 times each week ten years ago. Now on a good day i can walk about 100 yards.

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Hi Burt,
I’m not sure if you read the messages from @vickiekay and @gailb just above in the this discussion thread. They have both have scoliosis and have had laminectomies. What questions might you have for them as you prepare for this procedure?

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@mlowe

Hi my daughter is 15 with microcephaly and epilepsy she has a 50 degree curve. She wears a brace. What different types of surgery are there? She has the s curve. She’s in verbal and I’m terrified of the surgery!

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Hi @mlowe, please meet @kdubois. Her daughter had spinal surgery. What questions would you like to ask her as you and your daughter consider your options?

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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I’m glad to be a part of this group. I was diagnosed with scoliosis 11 years ago & have undergone two lumbar fusions. My quality of life is improved but my hip pain & posture remain problematic. I still take gabapentinn & tramadol to get through my days. So many activities I would like to participate in but cannot. I’m looking forward to seeing how others have improve their daily lives.

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@3naneri

I’ve been diagnosed with scoliosis at 16 years old, and I am now 45 and my curvature has gotten to 42 degrees now. I have degenerating discs too now. It has gotten soooooo painful! I wake up every morning now with back spasms, it almost feels like the muscles in my spine are highly inflamed. But there seems to be no cure? What exactly can I do? My orthopedic surgeon just tells me to try to swim, and that we will just monitor its further progress every year. I feel so helpless. Meanwhile, I still wake up with the pain every day, it goes all the way down to my hips and legs now. Ouuuuuuccchhh!!! :-(((
What else can I do? I can’t imagine living like this until I die … OMG. 🙁 Helpppp!

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I am far from an expert on scoliosis, and I have now developed it myself, but have had a “bad” back since 1963. I am now 81 with other physical problems, and am in PT weekly for those issues. For my back in general, not specific for scoliosis, I go to a Chiropractor with ART training. (ACTIVE RELEASE TECHNIQUE) and I am mostly pain free, But stretches the chiropractor taught me works wonders. Lay on the floor or a hard mattress on your back. Bring your knees up toward your chest and then pull them down to one side as much as possible , keeping your back flat on the floor and hold it until it until it no longer feels tight. Then repeat to the other side. If my back “pops” doing that (that does not hurt), that usually relieves most of my pain for what ever and not necessarily for the scoliosis. Don’t’ rush this exercise. Hope this might help. @gailfaith

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@3naneri

I’ve been diagnosed with scoliosis at 16 years old, and I am now 45 and my curvature has gotten to 42 degrees now. I have degenerating discs too now. It has gotten soooooo painful! I wake up every morning now with back spasms, it almost feels like the muscles in my spine are highly inflamed. But there seems to be no cure? What exactly can I do? My orthopedic surgeon just tells me to try to swim, and that we will just monitor its further progress every year. I feel so helpless. Meanwhile, I still wake up with the pain every day, it goes all the way down to my hips and legs now. Ouuuuuuccchhh!!! :-(((
What else can I do? I can’t imagine living like this until I die … OMG. 🙁 Helpppp!

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Thank you for the tip. I’ll try this exercise! I’m grateful for any advice.

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@3naneri

I’ve been diagnosed with scoliosis at 16 years old, and I am now 45 and my curvature has gotten to 42 degrees now. I have degenerating discs too now. It has gotten soooooo painful! I wake up every morning now with back spasms, it almost feels like the muscles in my spine are highly inflamed. But there seems to be no cure? What exactly can I do? My orthopedic surgeon just tells me to try to swim, and that we will just monitor its further progress every year. I feel so helpless. Meanwhile, I still wake up with the pain every day, it goes all the way down to my hips and legs now. Ouuuuuuccchhh!!! :-(((
What else can I do? I can’t imagine living like this until I die … OMG. 🙁 Helpppp!

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@3naneri
I have scoliosis and have had it since I was a baby. I am now 68 years old and I never really connected my lifetime of back pain with the scoliosis before the last few years. Now I understand the issues that are the result of the scoliosis and im astounded. I, like @gailfaith, have started working with a chiropractor who is using ART and laser therapy on me. I’ve only been twice and I can feel the difference. I’m sore today, but I have 4 more sessions with him. I felt great after the first treatment. He said this pain would happen, so I m sure its part of my muscles reawakening after nearly a year of being stuck in one place. I recommend some type of “muscle release” therapy. You can Google, Active Release Technique” and read about how it works. I first learned about it on Mayo Connect from a person with chronic pain. People have also recommended Rolfing as a help in pain relief.

I wish you luck in finding some relief and a therapy that works to gives you at least some freedom from pain. I also take Tramadol, 50mg, 4 times a day. I occasionally supplement it with Tylenol on particularly painful days.

@gailfaith, thanks for the exercise tip. I’m adding it to my routine.

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@3naneri

I’ve been diagnosed with scoliosis at 16 years old, and I am now 45 and my curvature has gotten to 42 degrees now. I have degenerating discs too now. It has gotten soooooo painful! I wake up every morning now with back spasms, it almost feels like the muscles in my spine are highly inflamed. But there seems to be no cure? What exactly can I do? My orthopedic surgeon just tells me to try to swim, and that we will just monitor its further progress every year. I feel so helpless. Meanwhile, I still wake up with the pain every day, it goes all the way down to my hips and legs now. Ouuuuuuccchhh!!! :-(((
What else can I do? I can’t imagine living like this until I die … OMG. 🙁 Helpppp!

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Thanks for making us aware of yet another helpful technique! I have gone through several Rolfing treatments and I has made a very significant difference for my pain level and my mobility. My MRI actually shows a improvement as the muscle are not pulling my spine to the same degree as they were before. I highly recommend Rolfing, but I am interested in finding a certified ART practitioner as well!

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@3naneri

I’ve been diagnosed with scoliosis at 16 years old, and I am now 45 and my curvature has gotten to 42 degrees now. I have degenerating discs too now. It has gotten soooooo painful! I wake up every morning now with back spasms, it almost feels like the muscles in my spine are highly inflamed. But there seems to be no cure? What exactly can I do? My orthopedic surgeon just tells me to try to swim, and that we will just monitor its further progress every year. I feel so helpless. Meanwhile, I still wake up with the pain every day, it goes all the way down to my hips and legs now. Ouuuuuuccchhh!!! :-(((
What else can I do? I can’t imagine living like this until I die … OMG. 🙁 Helpppp!

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Please read the post below regarding ART therapy and also consider researching Rolfing to find a certified Rolfer in your area. Rolfing has made a LOT of positive difference for me. Best wishes!

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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Another member was looking into Schroth’s therapy a while back. @mieke did you pursue this therapy? What can you share with the group?

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@jeriliz

I’m Jeri. I am 75 and was diagnosed with scoliosis about 15 years ago. I have many other spine problems and live with a lot of pain.

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@mollyb1968 and @judyuty, you may be interested in joining @gailfaith on this discussion about hyperparathyroidism parathyroid conditions.

– Endocrine surgeons with expertise in parathyroid disease? http://mayocl.in/2qs4rd9

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@JustinMcClanahan – thank you so much for starting this discussion. I’ve been looking for a place to talk about my scoliosis with others, and am very glad to have stumbled up on this and feel most comfortable here. Hi everyone!

I was diagnosed with scoliosis in ’93 when I was about 12. It progressed until at age 15, it was 47 degrees and I had to have a spinal fusion in ’96 with a Harrington rod to correct it. I did very well post-surgery, and could do almost everything. I have camped, hiked, kayaked, ziplined, done 5k walks, etc. All with caution of course.

Now however, I’ve had to go back to the orthopedist, I’ve got sigmoid scoliosis, I’m now getting a thoracic curve in addition to another lumbar curve that’s under the end of where my rod was placed. My left ribcage is also slightly protruding. I’ve also been told I’ve got spondylolisthesis, which I was never told I had before, that I can recall. I really have not had much pain, other than what I thought was muscular.

Though I was told all this was common post-surgical, I’m a little bummed that my spine is still moving around in there. I’m going to be getting an MRI and possibly injections for further diagnosis so I know what else is going on.

Anyone else experienced this post-surgery?

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@mlowe

Hi my daughter is 15 with microcephaly and epilepsy she has a 50 degree curve. She wears a brace. What different types of surgery are there? She has the s curve. She’s in verbal and I’m terrified of the surgery!

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Hi @mlowe, I’m glad you wrote.

This is a scary procedure for both the parent and the child.

My daughter had spinal fusion to correct scoliosis in December 2014 at age 12.5. Despite wearing a brace for at least two years prior, when her curve got to 55º curve, her doctors decided it was time for spinal fusion. After explaining the damage to her internal organs that could occur with further curving, in addition to now being able to visibly see her torso twist unnaturally, we decided to do the surgery.

It can be a painful surgery and recovery, which is why my daughter’s doctor won’t perform it on adults… it’s harder to recover from it the older you get. Be sure to consult with a experienced pediatric orthopedic surgeon who has done many of these before.

Please let me know if you have any questions.

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@mlowe

Hi my daughter is 15 with microcephaly and epilepsy she has a 50 degree curve. She wears a brace. What different types of surgery are there? She has the s curve. She’s in verbal and I’m terrified of the surgery!

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Hi, thank you so very much. How is your daughter now? Does she have pain? Did the surgery help? My daughters back is twisting also. She has to be in a walker with her brace on since she has epilepsy also. Which surgery did she have. Did they cut her back open or just the 2-4 little cuts? Thank you so much for sharing your life with me! I’m a single mom her dad died when she was 4. Making the decisions and being alone threw them are so hard, so I appreciate this very much. Thank you 

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