Looking for success stories from T3-Pelvis fusions

@richstein52
Yes I had T 4-S1 fused 3years ago. And had a great outcome. It was painful. But the meds help. I was in the hospital a week then moved to inpatient rehab for a week before going home. Rehab was great. If you can get it go. I think it help me recover so good. I was walking with a walker in rehab and when I went home for a few weeks. I am walking good now. There are still things that are challenging like tieing shoes. You'll never be able do to do a sit up. Your back will not bend. Before surgery I wasn't able to walk but about 40 feet. Now I can walk 2miles I probably could do more if I work on it. I had very bad leg pain nerve pain down both legs it's gone. I was 58 when I had surgery. Start rehab ASAP inpatient or outpatient right away. Good luck if you have any questions ask me.

@memuno1stborn Hi. Would you mind sharing who your surgeon was and which hospital?

@memuno1stborn I cannot thank you enough for the information you provided. I do not think anyone can give TMI on this format regarding spinal fusion. I am 71, female, live alone, I too have scoliosis all my life, and of course, other spinal issues now. My current neurosurgeon has recommended fusion from T10 to my pelvis. I have seen 2 other neurosurgeons and they suggested that I not have fusion unless my current pain is so severe that I would rather die. I would not say I am having pain, per se, so much as, I can no longer walk very far without a grocery cart or some support. So, I have delayed the surgery. I hear recoverin is at least a year and since I live alone, finding someone to come in and help in a rural area is almost impossible. So, I thank you for the details you have provided, and on driving afterwards. Anything at all. Where did you have your surgery?

@bassetmom if you are without pain and can walk and function in everyday life, even if you need a walker, it may be better to just wait. Severe pain or disruption of daily body functions are the typical reasons to undergo such a huge surgery.

@memuno1stborn I guess Im hoping to hear that their quality of life improved enough to warrant such a long fusion. Thanks for all the replies!

t10-s4, 9 months ago. I turned 60 in the midst of this. Suffering is a big piece of all our of stories here. But also, as you read these entries, there is also great strength, resilience, and hope. We all are looking for the happy ending, and with Christ that will come. For those of us that are walking through the pain that drives us to surgery, or the recovery that is life altering, clear and open answers of what we can expect might be illusive. If we could post a timeline of how we all experience recovery, it might provide great information. We could see where the average turning point might be, and we could motivate ourselves to reach the goals others have been able to reach. Having others on this forum share their journey of recovery helped me to put goals in place, and that helped me with expectations that were practical. I honestly do not know how I would have navigated my recovery without my husband. He took off 6 weeks from work, and I might have been able to manage at the 4 week mark, but I was so glad I did not have to!

By the 4 week mark I was able to begin making simple meals for myself, but all the decisions and ingredients needed to be accessible to me. So as you consider surgery, plan to put all the things you use within arms length so you do not have to bend. This includes in your bathroom and bedroom. Think linens, pots/pans, toiletries, books, remotes, etc.

Bathroom: We installed a bidet from Amazon ($30ish) and I started "practicing" wiping without bending/twisting. This is a learned skill. Not easy. I determined I was not going to ask for help. I watched videos that used tools to assist and couldn't wrap my mind around that, so practice makes perfect! A shower chair! This is still in my shower because there are days when I've exhausted myself and standing up to wash my hair or shave my legs - I need some assistance. I also purchased an extendable wand for my razor so that I could shave my legs. I have a shower sponge that the hospital gave me to wash my legs and feet, and I am still using one similar still. I kept the kidney bowl from the hospital to brush by teeth because I was unable to bend low enough to spit and used this for probably the first 3 months.

Bedroom: Learn to logroll into and out of the bed prior to surgery. Watch YouTube videos to learn how. I still have to do this. I can still feel the hardware when I lie down at night, so we have a feather duvet insert doubled under me to provide just enough cushion. I have a bedside table that held the things I might need: tissue, chargers, emesis bag for nausea ( which I battled the first 5 months). Reacher to help me get dressed ( I used this until probably 7 months); long shoe horn (still using this!). Clothes are all in drawers I can reach and pull out easily, or hanging up.

Car: I had a silk pillowcase to help me sit down and spin without twisting. I used this for probably about 7 months. My abs and thighs needed to get strong enough to do this. My doctor ordered a temp. handicap parking pass that lasted 6 months. I did get good use out of this when I went back to work at the 4 month mark, but was able to start parking further away by the 6 month mark - and even taking the stairs! I did not start driving more than 15 minutes away from home until the 6 month mark when I felt confident to get on the highway.

I went on my first trip on a plane at the 6 month mark and it was interesting to note where the challenges might be and try to prepare for those. We ordered a wheelchair and for that first trip it was a great idea, even though I resisted it at the time. I pre-boarded which helped me not feel the rush of others while I tried to settle. That also helped me catch my connecting flight which I likely would have missed had I tried to walk the distance. The hard thing was asking others for help, but I found that people were always more than willing to help.

What continues to challenge me at 9 months post? I still have incredible sensitivity around the top of my waste to the top of my thighs. Certain fabrics are simply intolerable! It worsens as the day progresses, so showers can actually be painful for the water to hit that area. I'm still learning how much I can bend, but my squats have gotten pretty good! I do not have the stamina that I did prior to surgery. I do have to pace myself. If I work a full day, my at home pt has to be light, and I might not get a walk in. I have to be ok with that. I've had to learn to be ok with a lot more things now. I have to be ok that I can't get in my yard and work all day like I used to. But with certain tools, and patience, I can work at it. I can't run around and do things without a little forethought. If I go shopping I have to prepare for the challenges that come with it. Trying on clothes might not happen and might need to make sure how returns work. Grocery shopping is most difficult as the weight of things, or where they are located on a shelf present challenges.

All that to say: I'm really grateful to not have the kind of pain that led me to surgery. I've dealt with pain from scoliosis since I was a young child. I had not slept through the night in several years due to the pain. I don't have that anymore. I don't know the last time I even took a tylenol! I know this is lengthy, but I was trying to think through some of the things I wish I had known, and hopefully this helps. Please feel free to ask questions, as I'm more than glad to help!

t10-s4, 9 months ago. I turned 60 in the midst of this. Suffering is a big piece of all our of stories here. But also, as you read these entries, there is also great strength, resilience, and hope. We all are looking for the happy ending, and with Christ that will come. For those of us that are walking through the pain that drives us to surgery, or the recovery that is life altering, clear and open answers of what we can expect might be illusive. If we could post a timeline of how we all experience recovery, it might provide great information. We could see where the average turning point might be, and we could motivate ourselves to reach the goals others have been able to reach. Having others on this forum share their journey of recovery helped me to put goals in place, and that helped me with expectations that were practical. I honestly do not know how I would have navigated my recovery without my husband. He took off 6 weeks from work, and I might have been able to manage at the 4 week mark, but I was so glad I did not have to!

By the 4 week mark I was able to begin making simple meals for myself, but all the decisions and ingredients needed to be accessible to me. So as you consider surgery, plan to put all the things you use within arms length so you do not have to bend. This includes in your bathroom and bedroom. Think linens, pots/pans, toiletries, books, remotes, etc.

Bathroom: We installed a bidet from Amazon ($30ish) and I started "practicing" wiping without bending/twisting. This is a learned skill. Not easy. I determined I was not going to ask for help. I watched videos that used tools to assist and couldn't wrap my mind around that, so practice makes perfect! A shower chair! This is still in my shower because there are days when I've exhausted myself and standing up to wash my hair or shave my legs - I need some assistance. I also purchased an extendable wand for my razor so that I could shave my legs. I have a shower sponge that the hospital gave me to wash my legs and feet, and I am still using one similar still. I kept the kidney bowl from the hospital to brush by teeth because I was unable to bend low enough to spit and used this for probably the first 3 months.

Bedroom: Learn to logroll into and out of the bed prior to surgery. Watch YouTube videos to learn how. I still have to do this. I can still feel the hardware when I lie down at night, so we have a feather duvet insert doubled under me to provide just enough cushion. I have a bedside table that held the things I might need: tissue, chargers, emesis bag for nausea ( which I battled the first 5 months). Reacher to help me get dressed ( I used this until probably 7 months); long shoe horn (still using this!). Clothes are all in drawers I can reach and pull out easily, or hanging up.

Car: I had a silk pillowcase to help me sit down and spin without twisting. I used this for probably about 7 months. My abs and thighs needed to get strong enough to do this. My doctor ordered a temp. handicap parking pass that lasted 6 months. I did get good use out of this when I went back to work at the 4 month mark, but was able to start parking further away by the 6 month mark - and even taking the stairs! I did not start driving more than 15 minutes away from home until the 6 month mark when I felt confident to get on the highway.

I went on my first trip on a plane at the 6 month mark and it was interesting to note where the challenges might be and try to prepare for those. We ordered a wheelchair and for that first trip it was a great idea, even though I resisted it at the time. I pre-boarded which helped me not feel the rush of others while I tried to settle. That also helped me catch my connecting flight which I likely would have missed had I tried to walk the distance. The hard thing was asking others for help, but I found that people were always more than willing to help.

What continues to challenge me at 9 months post? I still have incredible sensitivity around the top of my waste to the top of my thighs. Certain fabrics are simply intolerable! It worsens as the day progresses, so showers can actually be painful for the water to hit that area. I'm still learning how much I can bend, but my squats have gotten pretty good! I do not have the stamina that I did prior to surgery. I do have to pace myself. If I work a full day, my at home pt has to be light, and I might not get a walk in. I have to be ok with that. I've had to learn to be ok with a lot more things now. I have to be ok that I can't get in my yard and work all day like I used to. But with certain tools, and patience, I can work at it. I can't run around and do things without a little forethought. If I go shopping I have to prepare for the challenges that come with it. Trying on clothes might not happen and might need to make sure how returns work. Grocery shopping is most difficult as the weight of things, or where they are located on a shelf present challenges.

All that to say: I'm really grateful to not have the kind of pain that led me to surgery. I've dealt with pain from scoliosis since I was a young child. I had not slept through the night in several years due to the pain. I don't have that anymore. I don't know the last time I even took a tylenol! I know this is lengthy, but I was trying to think through some of the things I wish I had known, and hopefully this helps. Please feel free to ask questions, as I'm more than glad to help!

@karenoharmon: Hi,Karen, I read your profile after seeing your comment about what I posted. I’m very interested in your post-surgery journey since I had a spinal fusion 3 months later than you. The fatigue you noted is relatable. Fixing a meal, taking a shower, doing laundry—all were exhausting and I had to take a short nap after these tasks. This exhaustion has improved. My energy level is much better. You’re absolutely right about major surgery impacting mind, body, and spirit. The medical profession needs to improve upon advising patients about the possibility of these post-surgery aspects of healing.
Do you still feel the hardware at this point post-surgery? I feel the hardware when walking—it’s like a weight in my lower back that kinda freaks me out. It’s probably where the spine is fused to the pelvic bone. Getting into bed is awkward and still tender during movement to get comfortable. I had numbness in my left leg after sitting for ½ hr or more. The only way to relieve it was to lie flat on my back. This worked for a while until I started experiencing pain in left leg. Pain continued until it became unbearable and I went to ER. I was put on Fentanyl, Toradol, and valium. Numbness and pain now gone, (so are the drugs) but driving for more than ½ hr. is uncomfortable and a strain on my sciatic nerve. I wear a brace when driving to help absorb impact from bumps on the road and to keep me from slumping because slumping bends the rods along my spine. I can no longer prop in bed with pillows and have to sit in chairs with straight backs. No need for walker or cane anymore, but the brace in worn when out for a daily walk. The brace helps relieve the uncomfortable feeling of heaviness in the lower back with every step that's taken on pavement.
Until stumbling upon this Mayo forum, I had a lingering sense of loneliness because there was no one to communicate with who understood the surgery, it’s life-altering impact, physical limitations, and post-surgery experience. I’m so grateful to know I’m not alone in this journey. No wonder the Mayo clinic is world-famous!