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Moderator

Scoliosis - Introduce yourself and meet others

Posted by Justin McClanahan, Moderator @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?

Interested in more discussions like this? Go to the Spine Health Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 9, 2018
In reply to @besaple "Hi my daughter was just diagnosed with Scoliosis and i am scared to death. she has..." + (show)
@besaple

Hi my daughter was just diagnosed with Scoliosis and i am scared to death. she has a 70 rotational curve i think that is right . and the first doctor we talked to wants to do spinal fusion and rods she is 12 and i am worried about all the pain and 50% of movement loss.. they said they would have to go down to the L3. I have been looking around on the internet and have come to terms with some sort of surgery for the degree of curve she has but i found something called VBT Vertebral Tethering.. does anyone know about this and the outcome? also if they could do it on a rotational curve? any advice or your own experience would be great . Thanks

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Hello @shenriq - if you click the View & Reply in the email notification and scroll to the top of the discussion, then you can click the +Following link and you can select to unfollow the discussion. You can also click the Unsubscribe link at the bottom of the email notification you receive.

John

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sharon2000 | @sharon2000 | Mar 17, 2018
In reply to @sharon2000 "@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that..." + (show)
@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I went to a neurosurgeon yesterday. He is the first doctor I’ve seen in the past years that ask to look at my back and within 5 minutes of meeting him. However he is the only neurosurgeon the other doctors I’ve seen were orthopedic surgeons. The other doctors only wanted to look at my MRI’s. My new doctor who had already looked at my images & then my back told me I have flatback syndrome. I have never had back surgery it just happened naturally. Having CT’s of neck & lumbar next week. Already know I need surgery but if it’s scoliosis flatback surgery I will need to go to Atlanta for the surgery. If it’s a bone turned up he said he could do that here at the local piedmont hospital but if I need rods he said they can’t do that kind of surgery locally. Any advise? I’m 52 female.

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cocoa | @annieecruz | Mar 17, 2018
In reply to @sharon2000 "@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that..." + (show)
@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I would suggest seeing Neurosurgeon, Dr. Jeremy Lee Fogelson at the Mayo Clinic. He is honest and accurately diagnosed me with failed back surgery syndrome. I do not advise rods. My scoliosis rod surgery took 23 hours and I had several complications. I now have radiculopathy, a painful coccyx, my back hurts, my left foot is purple and cold, I have costochondritis, I have ischial tuberosity pain . . . It has been 8 years.

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bernese53 | @bernese53 | Mar 17, 2018
In reply to @sharon2000 "@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that..." + (show)
@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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Thank you for posting this. I am trying to decide about proceeding with spinal fusion (c6-7) as well as lumber fusion (L4-L5). Where did you have your back surgery done?

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sharon2000 | @sharon2000 | Mar 17, 2018
In reply to @sharon2000 "@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that..." + (show)
@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I have never had back surgery but still wound up with flat back syndrome. I’m sure it is from the scoliosis. From what I understand they will be taking a section of my spine out like a wedge to straighten up spine & the rods will help hold in place. I was thankful this doctor actually looked at my back. I have had 8 injections in 9 months & none have helped. Tired of being prodded with no result.

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johnbroward | @johnbroward | Mar 18, 2018
In reply to @JustinMcClanahan "Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94,..." + (show)
@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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Well it was gradual but almost 6 months now since surgery and the big improvement is I am off all pain killers, still have some but it's tolerable. I see dr fogelson next Friday to see if I get released for activity or not. He said I should be able to play golf again and I'm ready I hope, we'll see . I have been walking a mile a day on treadmill for exercise

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busybee | @busybee | Mar 18, 2018
In reply to @sharon2000 "@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that..." + (show)
@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I had mine done at Walter Reed Army medical center in 1974.  At that time is was primitive compared to today.  The couldn&apos;t do anything for you after 18 years old because the spine was considered not flexible.   As an adult I am forever grateful someone
could correct my back  but as a 14 year old child I was scared, humilated, and ridiculed at school. Things today are some much easier.  When I had it done there was only 3 hospitals that treated scoliosis.   I wish you all the luck in the world.  You will
be glad when it is all done  

REPLY
busybee | @busybee | Mar 18, 2018
In reply to @sharon2000 "@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that..." + (show)
@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I&apos;m sorry your ordeal has not been successful for you.  I had mine done when I 14 in 1974.  I have perfect posture and forget it is even I  there. Yes, there are things I cannot do but as everyone with challenges you learn to know the  extent of what you
can do and how to make it work for you. My rod is the total length of my spine and I can bend over and touch my toes which is amazing.  I am truly sorry for your pain and it is a shame it didn&apos;t help you. 

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Parus | @parus | Mar 18, 2018

I am too old to get help for the scoliosis which developed late in life. Lost 4" off of my height and traveling any more than 20 miles is no longer possible. Even if I could I would not be able to do anything once I arrived at a destination. I so miss nature, bird watching, hiking, running. Is what it is. Will only get worse. so much to look forward to...excuse, lost in the pit of self pity at the moment. Could be worse.

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3 replies
cocoa | @annieecruz | Mar 18, 2018

You can have surgery as an adult for Scoliosis. Never too late. Call Dr. Nassr or Dr. Jeremy Fogelson at Mayo Clinic. It can impact your internal organs.

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