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??!!
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)