Hi everyone!
This is my first post here. No one truly can understand what I am going through except those have been through it too, so I would appreciate any insight/advice you could give me. Sorry I'll try to keep it as short as I can- just want to get you all the details- so here it goes!
Like always- diagnosed w/idiopathic scoliosis at 12/13 during school. My parents took me to one doctor- and my curves were measured at 35 and 38 at the time. No follow up- ever. Never asked how I was dealing with it. Never brought it up again- ever. Suffered with extreme depression since. Made my first appointment at 18 with a specialist. Too late for bracing at that point. Doctor said wait and see, 50/50 shot I would need surgery. I'm now 27.
July 2013- now at almost 60 degrees at each curve- with scoliosis, kyphoscoliosis, DDD, etc, etc, etc.. underwent first surgery to fuse T2-L4. 80% through surgery while putting in a screw, the nerve signal machines reported I lost function in my right leg and then my left. They removed all screws and rods, closed me up- and waited. Luckily- I could move my legs- terrifying, nonetheless. My surgeon says the machines just reported wrong, but I've met a few other people that have had the same thing happen and weren't as lucky- so I am starting to doubt that. Had surgery a few days later and was fused from T2-L4.
Two months later, after one fall- and a head one car accident- started having really bad pain. (I was going 5-10 mph at best, not a serious car accident). Went to see my surgeon, xrays showed I was fine, but I knew something wasn't right. Kept pushing for a CT- that finally showed the screws at L3, L4 came loose. Had surgery in November to put in a cage and reinforce with bigger, and more screws. Saw my doctor again yesterday, and was told L5 is not holding up and I need to be fused now to the sacrum. The original plan was to wait 10-20 years to fuse the remaining segment to maintain as much flexibility as I could while I was young. 10 years turned into 2 months.. To make matters worse, I am having the exact same pain in the exact same place as I did when my screws were loose. I KNOW my screws are loose again, but waiting on another CT to confirm.
I could handle my screws coming loose if it indeed was from my car accident- but I am starting to doubt that. My surgeon said he has seen people in much more severe car accidents and falls than I had much sooner after surgery that were fine. Now with my screws almost surely loose again, I am reaching out for help. Why isn't my body taking these surgeries? This will be my fourth surgery in nearly six months and I'm only 27- and I haven't even had a baby yet, which I really want. I've had so many complications already, and I haven't even hit the one year mark to know if I am fused yet! Let alone all the things that can happen if you don't fuse correctly.. or even if you do.... :|
I've read a lot about people fused to the sacrum that are either permanently disabled or not able to sit more than 5 minutes, 30 minutes at best. What advice can you give me about fusing all the way down? I'm already T2-L4.. so I don't know how much more it will really affect me, but I really would like to know what I'm in for. As far the nerve machine issue, what are your thoughts? Do you think it was just the machine, or am I just really, REALLY lucky? Any thoughts as to why my screws have come loose twice now? Any tests I can do to get this figured out? As far as pregnancy- my doc says to fuse to L5 first, then try to have a baby because of the extreme pain I'm in. (He first said baby first- but not until I told him about my pain). But after reading people can't sit more than minutes at a time, how realistic is it I will be able to carry a baby then? or even now for that matter? I would really appreciate any insight you all could give me.
Scoliosis is so great, isn't it??!!
-Lauren
I attached Xray pics of the before/after of 2nd surgery- I will try to upload the revision surgery pic soon. (Xray doesn't show the cage though, so everything looks the same)
This is my first post here. No one truly can understand what I am going through except those have been through it too, so I would appreciate any insight/advice you could give me. Sorry I'll try to keep it as short as I can- just want to get you all the details- so here it goes!
Like always- diagnosed w/idiopathic scoliosis at 12/13 during school. My parents took me to one doctor- and my curves were measured at 35 and 38 at the time. No follow up- ever. Never asked how I was dealing with it. Never brought it up again- ever. Suffered with extreme depression since. Made my first appointment at 18 with a specialist. Too late for bracing at that point. Doctor said wait and see, 50/50 shot I would need surgery. I'm now 27.
July 2013- now at almost 60 degrees at each curve- with scoliosis, kyphoscoliosis, DDD, etc, etc, etc.. underwent first surgery to fuse T2-L4. 80% through surgery while putting in a screw, the nerve signal machines reported I lost function in my right leg and then my left. They removed all screws and rods, closed me up- and waited. Luckily- I could move my legs- terrifying, nonetheless. My surgeon says the machines just reported wrong, but I've met a few other people that have had the same thing happen and weren't as lucky- so I am starting to doubt that. Had surgery a few days later and was fused from T2-L4.
Two months later, after one fall- and a head one car accident- started having really bad pain. (I was going 5-10 mph at best, not a serious car accident). Went to see my surgeon, xrays showed I was fine, but I knew something wasn't right. Kept pushing for a CT- that finally showed the screws at L3, L4 came loose. Had surgery in November to put in a cage and reinforce with bigger, and more screws. Saw my doctor again yesterday, and was told L5 is not holding up and I need to be fused now to the sacrum. The original plan was to wait 10-20 years to fuse the remaining segment to maintain as much flexibility as I could while I was young. 10 years turned into 2 months.. To make matters worse, I am having the exact same pain in the exact same place as I did when my screws were loose. I KNOW my screws are loose again, but waiting on another CT to confirm.
I could handle my screws coming loose if it indeed was from my car accident- but I am starting to doubt that. My surgeon said he has seen people in much more severe car accidents and falls than I had much sooner after surgery that were fine. Now with my screws almost surely loose again, I am reaching out for help. Why isn't my body taking these surgeries? This will be my fourth surgery in nearly six months and I'm only 27- and I haven't even had a baby yet, which I really want. I've had so many complications already, and I haven't even hit the one year mark to know if I am fused yet! Let alone all the things that can happen if you don't fuse correctly.. or even if you do.... :|
I've read a lot about people fused to the sacrum that are either permanently disabled or not able to sit more than 5 minutes, 30 minutes at best. What advice can you give me about fusing all the way down? I'm already T2-L4.. so I don't know how much more it will really affect me, but I really would like to know what I'm in for. As far the nerve machine issue, what are your thoughts? Do you think it was just the machine, or am I just really, REALLY lucky? Any thoughts as to why my screws have come loose twice now? Any tests I can do to get this figured out? As far as pregnancy- my doc says to fuse to L5 first, then try to have a baby because of the extreme pain I'm in. (He first said baby first- but not until I told him about my pain). But after reading people can't sit more than minutes at a time, how realistic is it I will be able to carry a baby then? or even now for that matter? I would really appreciate any insight you all could give me.
Scoliosis is so great, isn't it??!!
-Lauren
I attached Xray pics of the before/after of 2nd surgery- I will try to upload the revision surgery pic soon. (Xray doesn't show the cage though, so everything looks the same)
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