Scoliosis - Introduce yourself and meet others

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.

@muffincat

Sorry to read that you are one of those that have major problems after surgery.
I am presuming you have been offered further surgery to try and replace or fix the broken Harrington rod.
you must be in so much pain that really it would be hard to refuse surgery.
Wishing you all the best

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@chantalmatsushigeregis boy that's a interesting and very long name. lol. Once I realized I was goin have to have surgery on my back my first trip back to the surgeon I had to take 2 Ativan to keep my from turning around and coming home. I did a lot of praying asking for the courage to get through the surgery and God was there for me. Hang in there it will get easier.

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@muffincat

Sorry to read that you are one of those that have major problems after surgery.
I am presuming you have been offered further surgery to try and replace or fix the broken Harrington rod.
you must be in so much pain that really it would be hard to refuse surgery.
Wishing you all the best

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Thank. You. Yes. Going. To. Have. Surgery. Is. Scary. Glad. Everything. Went. Well. With. You.

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@muffincat

Sorry to read that you are one of those that have major problems after surgery.
I am presuming you have been offered further surgery to try and replace or fix the broken Harrington rod.
you must be in so much pain that really it would be hard to refuse surgery.
Wishing you all the best

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Hello @chantalmatsushigeregis. I can hear the concern in your voice and the frustration with the pain. I add my welcome to the other members. I am glad to hear that you are going back to your physician to bring him or her in the loop on what you are experiencing. You may also want to check out this discussion on Connect that specifically is about back pain and harrington rods, https://connect.mayoclinic.org/discussion/harrington-rod-and-lower-back-pain/. If you click that link you will be able to read through and meet members talking specifically about harrington rods.

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Thank. You. Justin. I. Will. Try. That. Website soon. God. Bless

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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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Hi Mollyb1966 again. Responding to you post of Ap27 I think of 2016 again. It has been over a year now that I had the one parathyroid removed and the Ca levels have remained within the normal range! And as I said previously, I never had any symptoms before the surgery, and I still have none so it is impossible to tell you if I feel any different! Remember, I too previously said no doctors I had before the surgery .......and I moved twice and had to change my primary physicians each time....., no one except my current physician even mentioned it, but he recommended no action do to my age and the risks of that surgery. As you may remember, I went and had the surgery done with absolutely no problems at Mayo!

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@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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Muffincat. If. I. Had. A. Chose. When. I. Was. Young. I. Would. Not. Have. Surgery. For. Scoliosis

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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 had surgery on the 22 nd of sept, 2117 I had put it off for over 5 years and now am fused from s-1 to t-11, will be a week tomorrow .in a lot of pain but that is to be expected.i seem to have a good day then a bad day, anxious yo see steady progress. Anybody have any input?

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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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Well done, and now you are on the other side, its TIME and patience and nurturing .;). Because you have a foreign body[ items] in you, now there will be lots of reaction going on so expect pain for a good 6 wks, you should feel a little better than you are at the 3wk mark, then another 6mths before the pain reduces to below that, of the reason why you had surgery. By then you will have adjusted to the new you and be having some pleasant days.
Try and reduce your pain relief after the 3wk mark as it has the nasty habit of causing more pain if you get too used to it, its like the first sign of withdrawal, the pain increases at that 3 hrs and 55 min or when ever you are 'due' for another dose. Keep us informed of your progress

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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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Hoping to be better quicker than that, I was in fair physical shape when I went in to surgery. They ( drs and nurses) sai I was excelling , going for 4-5 walks a day they had to tell me to slow down but by the third day I was in as much pain as the first day. I also have been on fentynal 50 for 3 years so used to it it didn't make much difference now taking fentynal plus 30 mils oxycodone every three hours plus Tylenol 500 every 6 hrs plus Valium 5 every 8 hrs and maintaining. Does that sound right?

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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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Hi,
I've had anterior cervical fusions and want to say 2 things: It takes way longer than you expect, given the need for deep healing and having your body adjust to the new constraints. I was so devastated by the degree of pain that I felt for so long, that I honestly thought I could get through the healing and feel relatively normal again, which took 2 1/2 years. The positive outcome for me was that my electric pain is gone.
While every patient experience is different, I believe that Drs will NEVER tell you how long it will take to feel good again, because if they did, there would be fewer surgeries!
Over time, you should expect more good days than bad, more consistently.
Hang in there!

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