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Scoliosis Fusion Chronic Issues

Oct 21, 2015 10:43 PM

I was just wondering if anyone here had scoliosis fusion as a child/young adult and do you have any chronic complications? Apparently "failed spinal fusion" is the cause of CRPS for me. Interested to hear what others have dealt with.

Oct 22, 2015 2:41 AM

Hi I'm a scoliosis girl too! I have a few auto immune issues RA and blood disorder to go with CRPS, fibro, ect. Do you have a Harrington rod? If so Google it and look at how at least 67% are leeching rust into our bodies and causing autoimmune problems. Great right! Welcome to the group I will catch up with you soon, I think it is way past my bedtime.

Oct 22, 2015 8:12 AM

@LMB - great to hear I'm not alone. I've been trying to find others who have a pain pump and I haven't found anyone (through several resources). Anyways, I have seen quite a few with rods that have pretty major, to even massive, side effects. I'm sorry to see that. I think I have even more complications because they misdiagnosed the curve the first time I had surgery, so they only fused the low back (I was 12 yrs old). A few years later (after my spine continued to curve), they had to take out the original rods and then fuse pretty much my entire back (except my neck). I didn't have that many issues after my first surgery, in fact I bounced back to normal activities faster than doctor thought I would. But I've had massive issues with my entire health ever since the second surgery (@ 16 yrs old). Now, I just turned 40 and my life has literally been turned upside down over the last 3 years. It's been exhausting and just terrible. And the worst part is I had to leave an awesome profession because of it. I was actually one of those people who loved my job. I feel like it was ripped right out of my arms. I'm so disappointed!

Now that I've talked all negative, I can say I've seen some mild improvement over the last year, but it is still so frustrating. I'm waiting to hear the status of my disability application (appealed after 2 denials). Keeping my fingers crossed! ā˜ŗ

Oct 22, 2015 8:46 AM

DCMomInPainOuch, welcome to the our community family. I am sorry that you are having such a difficult time. I didn't have scoliosis as a kid but I do now. I also have DDD, DJD, cervical spondalytic myelopathy, SI Joint Disfunction with fractures, no left shoulder joint, impingement syndrome in both shoulders, Costochondritis among other things. (There are so many, I can't remember them all and really can't be bothered to complain enough to list them all... LOL!!! I hope that you find the information and support that you are looking for being here with us. We are all here for different diagnosis but we have one commonality among us and that is Chronic, irretractable pain. I've been in pain for 22 years and it's been hard to say the least. At any rate, I am glad you found us because it's a safe haven for venting, laughing, gathering info, getting support and understanding is very important. The one thing you'll realize quickly is that you're never alone. There is always someone here to come to the rescue when you reach out. It really helps to speak to folks that understand. So, welcome again and I will keep you in my prayers.šŸŒ»šŸ™šŸ»

Oct 22, 2015 2:23 PM

DCMomInPainOuch, I only recently was told I have very mild scoliosis in my upper back. It must be what causes my pinching pains. I wish you well in finding others who can help. šŸ™šŸŒ¼

Oct 27, 2015 7:38 PM

I had the corrective Harrington rod surgery as a teen and mine did fuse properly first yr after it just now yrs later it's having other pains and pain in general and my rods are titanium but I am still experiencing pain - seems like the muscles still wanna turn <3

Oct 27, 2015 7:48 PM

I have scoliosis but was not treated as a child. I'm so sorry to hear the nightmares you are going through. I'm getting the results of my first screening since 2007. I'm praying its stayed at same angle and not gotten worse. Blessings to you all and hopes for relief from your pain and the bad side effects from your surgeries. āœŒļøšŸ’œ

Nov 20, 2015 12:21 PM

I started a Facebook group for people with spinal fusion for their scoliosis or people considering it. Please join if this fits you and spread the word. Thanks!!

Search FB for "Scoliosis & Spinal Fusion Support Group". Thanks!!

Dec 11, 2018 11:25 AM

Doctors discovered my scoliosis when I was 12 but nothing was done. Last year, at 48 years old, I had corrective surgery with rods and fusion from T1 to S1. I am really struggling with the pain, 14 months after surgery. It is much better than it was last year but I worry that this is it. Iā€™m glad I found this.

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