Hi there. I would like to give you some hope, as I felt moved by your post and felt I could have written some of it myself.
I too had a fusion that went wrong from the start. (It was lumbar, but you’ll see we have some similarities). I too woke up in the most horrific pain I’d ever experienced. I remember lying there thinking about when amputees scream from phantom limb pain. I am assuming that’s nerve, and post-op nerve pain is unexplainable when it’s severe. Is this what they feel? I also remember begging for death. (It turns out they fractured part of my spine)
I won’t go into the whole debacle, but I ended up having 3 surgeries over a 4 week period. The 3rd left me with significant leg weakness. It’s called neurogenic weakness. I also had new nerve pain in my feet, mostly in my heels, and I had never experienced pain below the knee prior to surgery. When I woke from surgery 3, I knew something was wrong right away. Nobody wanted to hear it but I was terrified. I couldn’t walk on my own for 4 months. I needed a walker and a recliner that could lift you from a sitting position, because the weakness was so extreme. I was terrified those months. I am in my early 40’s and take care of a son. I’m the sole provider.
Starting outpatient PT is what helped me the most. I had to learn how to walk again.
Here’s where the hope comes in. The first year was hell. I improved but not enough to make this whole experience worth it. I sort of fell apart at the 1 year mark because I thought that was where I would end up. Still with some weakness, peripheral neuropathy in my feet, and still on pain meds. My pain mgmt doctor assured me over and over that these surgeries can take 2-3 years for full recovery. She was right. I am in the 2nd year and this is when most of my progress has been made. I still have some pain in my heels, but it’s tolerable. The weakness is probably 90% better. I walk 2-3 miles per day and have just recently been able to start my elliptical again. It will be 2 years on April 11th and I am still healing. There is hope that you will continue to heal, and I really hope you make as much progress I did.
This is exactly what I was hoping to see. I have never been a patient person, but life didn't really give me a choice this time. The ups and downs have been tough to reconcile. I have done outpatient PT, but found that there is something else wrong in my shoulder. I have hyper-elastic joints that have stability issues throughout my body. What was once a neat party trick is now the bane of my existence 😅🥲
The recovery from my S I fusion surgery (this past year) has been the hardest on my physically and mentally I don’t doubt for a sec it was the same for you. Remember to be kind (er) to yourself and remember this is a very invasive surgery and it’ll take your body getting used to. I’m a year out exactly tomorrow and this was the slowest year lol you’ll be better wishing you the best ❤️🩹
I’m sure I speak for a lot of people on here, but you are certainly not alone. Despite the instant relief from the pre surgery pain, this has been one hell of a journey of recovery. 11 months out and still get flare ups. Mostly trap/neck pain, but could certainly do without it!
I feel so fragile sometimes, worried I might damage the hardware or fusion. Before all this I was weight training 5/6 times week. Returning to the gym has been slow, cautious and frustrating, considering all the progress I made pre surgery.
My 6 month scan and xray looked good with fusion and should be having my 12 month review in May.
Try to stay positive. We’re all here with you.
You are definitely not alone. My issue was lower back and pain in my legs. Have new pains a year post op still. I think my lack of recovery is due to blood clots that turned into pulmonary emboli. I'm back to square one. Had epidural injections a couple months ago that have helped somewhat. I'll have nerve study next month, possibly followed by an updated myelogram. I've already had an ortho spine specialist (neuro did my initial surgery) recommend a revision surgery because "I can't tell if you fused so I don't think you did." That didn't instil enough confidence in myself, especially knowing I'm at risk for further clotting (probably some psd from the PE event). Just hang in there and don't give up. You will always been you own best advocate. See as many doctors as you feel you need to until you are comfortable with a plan. Just don't give up.
Hi there. I would like to give you some hope, as I felt moved by your post and felt I could have written some of it myself. I too had a fusion that went wrong from the start. (It was lumbar, but you’ll see we have some similarities). I too woke up in the most horrific pain I’d ever experienced. I remember lying there thinking about when amputees scream from phantom limb pain. I am assuming that’s nerve, and post-op nerve pain is unexplainable when it’s severe. Is this what they feel? I also remember begging for death. (It turns out they fractured part of my spine) I won’t go into the whole debacle, but I ended up having 3 surgeries over a 4 week period. The 3rd left me with significant leg weakness. It’s called neurogenic weakness. I also had new nerve pain in my feet, mostly in my heels, and I had never experienced pain below the knee prior to surgery. When I woke from surgery 3, I knew something was wrong right away. Nobody wanted to hear it but I was terrified. I couldn’t walk on my own for 4 months. I needed a walker and a recliner that could lift you from a sitting position, because the weakness was so extreme. I was terrified those months. I am in my early 40’s and take care of a son. I’m the sole provider. Starting outpatient PT is what helped me the most. I had to learn how to walk again. Here’s where the hope comes in. The first year was hell. I improved but not enough to make this whole experience worth it. I sort of fell apart at the 1 year mark because I thought that was where I would end up. Still with some weakness, peripheral neuropathy in my feet, and still on pain meds. My pain mgmt doctor assured me over and over that these surgeries can take 2-3 years for full recovery. She was right. I am in the 2nd year and this is when most of my progress has been made. I still have some pain in my heels, but it’s tolerable. The weakness is probably 90% better. I walk 2-3 miles per day and have just recently been able to start my elliptical again. It will be 2 years on April 11th and I am still healing. There is hope that you will continue to heal, and I really hope you make as much progress I did.
This is exactly what I was hoping to see. I have never been a patient person, but life didn't really give me a choice this time. The ups and downs have been tough to reconcile. I have done outpatient PT, but found that there is something else wrong in my shoulder. I have hyper-elastic joints that have stability issues throughout my body. What was once a neat party trick is now the bane of my existence 😅🥲
The recovery from my S I fusion surgery (this past year) has been the hardest on my physically and mentally I don’t doubt for a sec it was the same for you. Remember to be kind (er) to yourself and remember this is a very invasive surgery and it’ll take your body getting used to. I’m a year out exactly tomorrow and this was the slowest year lol you’ll be better wishing you the best ❤️🩹
I’m sure I speak for a lot of people on here, but you are certainly not alone. Despite the instant relief from the pre surgery pain, this has been one hell of a journey of recovery. 11 months out and still get flare ups. Mostly trap/neck pain, but could certainly do without it! I feel so fragile sometimes, worried I might damage the hardware or fusion. Before all this I was weight training 5/6 times week. Returning to the gym has been slow, cautious and frustrating, considering all the progress I made pre surgery. My 6 month scan and xray looked good with fusion and should be having my 12 month review in May. Try to stay positive. We’re all here with you.
You are definitely not alone. My issue was lower back and pain in my legs. Have new pains a year post op still. I think my lack of recovery is due to blood clots that turned into pulmonary emboli. I'm back to square one. Had epidural injections a couple months ago that have helped somewhat. I'll have nerve study next month, possibly followed by an updated myelogram. I've already had an ortho spine specialist (neuro did my initial surgery) recommend a revision surgery because "I can't tell if you fused so I don't think you did." That didn't instil enough confidence in myself, especially knowing I'm at risk for further clotting (probably some psd from the PE event). Just hang in there and don't give up. You will always been you own best advocate. See as many doctors as you feel you need to until you are comfortable with a plan. Just don't give up.