My journey with a T11 to L4 spinal fusion - 40 degree scoliosis curve

@rwdixon4 Hi I think I have SMS you before. Mine was open surgery T4-S1. I was the same I couldn't stay the way I was either. I was to nervous I didn't think about it. I just wanted it done so I could stand up straight again and walk. I also had very little support. I live with my 82 year old mother. She can get around on her own and drive. I don't think she could've helped me in and out of bed etc. Which might have been a good thing as I had to do it myself. What I feel helped me was inpatient Rehab. Ask about it. I stayed a week I could've stayed 2-3 weeks. Stay until you feel comfortable going home. There really good PT works with and Occupational Therapy they show you how to do daily things, take a shower, get dressed, get in and out of bed etc. Try not to think about it being Open surgery. Just focus on being able to do things again. I know easier said. Also I was 58 when I had surgery. Wish you fast recovery. Update how you are.

@sherrym25 you’re the best!!! Thanks so much! Remind me your fusion? I’m encouraged by you immensely! I like the weekly timeline. I set weekly goals and at the end of the week assess how I’ve done and add to them or keep chipping away at them.

Driving? When were you clear to drive? Do you work outside the home? When did you start back and what capacity?

Thank you again for your advice! You are a goldmine(mind!)🫶🏼

I’m a 73 year old woman who probably needs to have scoliosis surgery to relieve my chronic pain and be able to walk any distance and stand for more than a few minutes. I’m seeing Dr Sebastian at Mayo. What experiences have others had with this issue or doctor?

@lisamedanic I too have pain when walking any distance or standing for too long. I have never thought it could be because I have scoliosis (I was told by a doctor when I was 22 that I had it and surgery for it was never suggested) but I just chalked it up to aging. I would be interested in your progress. I am 79 so I guess I would not qualify for that surgery …?

rashida, age isn't the most complicating factor regarding scoliosis surgery. If you feel up to it, I'd encouraged you to have an evaluation with a doctor like Sebastian who has extensive experience.

@rashida You might if your symptoms were severe enough to warrant a very serious surgery. It depends upon how much it's limiting your life and keeping you from doing the things you want. Everyone's scoliosis is different and progresses differently.

@lisamedanic since age 22 no doctor or specialist has suggested surgery for my scoliosis - just commented that I have it - so I am assuming mine is not as serious as perhaps yours is. It didn’t affect me till in recent years. Also, I am afraid of any back surgery after seeing two friends who became even less mobile after their surgeries.

I had scoliosis surgery at 60 years old. They fused T-9 to S-1. The recovery was rough but nothing like the recovery I experienced from a revision surgery of C-2 to C-5. The revision fused C-2 to T-5. This was two years ago at age 72. The recovery from this surgery has been rough. I still have neck pain and numbness in my right hand. My pain before the surgery was very bad and my arm and hand were numb. I believe the surgery was necessary given my history. The only reason I would consider any back or neck surgery is for severe pain relief and to prevent nerve damage. If injections and medication and massage and meditation and support had managed my pain I would not have had the surgery two years ago. It has been a much harder recovery for me and I believe that is because of my age..

@annandkitty I’m sorry things are so hard for you right now. I do hope they improve. I’ve done all the conservative treatment options and they no longer help. Dr Sebastian would not even consider surgery if anything else could help. I’ve had scoliosis since I was ten with on and off back pain since high school but it was manageable with massage, PT, exercise, acupuncture and things I’m probably forgetting. Over the last two years it has gotten much worse and nothing has helped including steroid injection, nerve ablation and medication. I’m not in constant pain. If I’m sitting on a heating pad I’m fine but if I try to walk around a grocery store or, even worse, a farmer’s market or museum, I’m quickly in extreme pain and exhausted. I used to walk several miles a day and now I sit except for some strengthening/PT exercises I do several times a week. Dr Sebastian isn’t pushing me to do surgery. Quite the opposite. He wants me to think about it. It’s a big surgery with lots of pain. I’m feeling like I don’t have a lot of choices. He’s the second doctor who has said that if nothing else works this is my best option. I’m going to choose Mayo in the hope that going to such a good hospital and doctor will improve my odds of a good outcome but there are no guarantees. My age will make it harder as will the arthritis and other issues of aging but I’m not getting younger and the longer I’m so sedentary the faster all that will progress. I think the choice is between continuing to get worse, a 45 degree curve that is progressively getting worse and will keep limiting my life or a chance at at least a few, maybe many, more years of active life. I would love to hear from others who have faced similar situations and hear their stories.

If you have trouble standing and walking have you considered that stenosis could be the main culprit here? There is a procedure called M.I.L.D., aka Minimally Invasive Lumbar Decompression, that scoops out ligament, that treats problems with standing and walking.