Hi –Like many before, I have been reading and learning so much from all of you for the last year or so. Currently, I am scheduled for surgery in March ’17 with Dr. Lenke but debating if the timing is right. I am a 59 year old female diagnosed with scoliosis in the 8th grade. Wore a Milwaukee brace 23 hours a day for 14 months. I have some old x-ray films which indicate a curve of 30 degrees, progressing to 60 degrees by age 40. I have always lead an active life with various activities - jogging, swimming, skiing, tennis, biking, golf, volleyball.
Fast forward into my 50’s when I started experiencing more noticeable discomfort and pain doing housework, gardening, exercising, etc. The pain was enough to make me stop and lay down for a bit. I saw a physiatrist at a local neurospine center, had some x-rays taken and found out I was at about an 82 degree right thoracolumbar curve and had lost 2 inches in height. Wasn’t even considering surgery at the time since I was doing quite well but getting concerned. I continued on my way and did some PT for core strengthening, researched and hooked up with a Schroth specialist for a few years and continued to remain active. I walk as much as I can and do a quick paced 4 miles without too much discomfort. Walking is actually less painful than standing still for a period of time. I continue to swim, do some biking, kayaking, lots of stretching and am now working with a Stott Pilates instructor on core strengthening. Just started playing pickle ball, too.
I experience more bouts of pain these days but the magnitude is definitely related to how much I do. I feel lucky in that I don’t have constant daily debilitating pain. On a daily basis it’s more a constant feeling of being uncomfortable which gets worse as the day progresses.
But due to the continuing progression of my curve(s) - it seems surgery is in my future and I’ve been investigating my options. Fortunately, I have access to and have been seen by Dr. Glazer and Dr. Rand in Boston and last January by Dr. Lenke in NYC. I live in southern NH so Boston and NYC are quite accessible. They all agree I will need surgery someday as my curves, pain and quality of life will continue to worsen. Within 1-5 years I was told in Boston. In NYC, I was advised before age 60 is best, 60-65 is good, too. The timing is really up to me. Dr. Lenke said I would be 3-4 inches taller post-op.
As reported by Dr. Lenke, I now have a right thoracolumbar curve measured at around 90 degrees with a 65 degree thoracic curve above and 35 degree lumbosacral curve below. Coronal balance is off 25cm to the right. Sagittal plane shows 33 degrees of thoracic kyphosis, 67 degrees of lumbar lordosis with an incidence of 84, tilt of 30 degrees. Sagittal balance is positive by 1 cm. Rotatory subluxation developing in both L2-3 and L3-4. MRI scan shows no stenosis in the lumbosacral region. Definitely looks a little osteopenic in the spine (subsequently confirmed by a bone density scan).
The size of the curves frighten me and so does how compressed my torso looks on a standing x-ray. I’ve read here and elsewhere that adult spinal fusion surgery is about pain and not progression. I would be fused T-3 to sacrum. I am still functioning well and some days not sure the level of the discomfort or pain I experience justifies a surgery of this extent at this time. I am fearful of doing the surgery in March and giving up my current level of activity, loosing flexibility and all the many other things I could be left to deal with. But if I wait much longer and become less active there is a downside to that, too.
Has anyone had recent surgery with Dr Lenke at the Spine Hospital in NYC? I realize Dr Lenke is one of the best…I just wonder how the hospital experience is there.
How do you deal with the inflexibility of being fused T3-sacrum? Loss of flexibility is Dr Rand's biggest concern for me in regard to what my “level of function would be afterwards compared to her current level of functioning, which is quite good”. Is the lack of flexibility something you just get used to? Would I still be able to get down on the floor and play with my grandkids?
Anyway, thanks for taking the time to read this. I would love to hear your thoughts!!
Janice
Fast forward into my 50’s when I started experiencing more noticeable discomfort and pain doing housework, gardening, exercising, etc. The pain was enough to make me stop and lay down for a bit. I saw a physiatrist at a local neurospine center, had some x-rays taken and found out I was at about an 82 degree right thoracolumbar curve and had lost 2 inches in height. Wasn’t even considering surgery at the time since I was doing quite well but getting concerned. I continued on my way and did some PT for core strengthening, researched and hooked up with a Schroth specialist for a few years and continued to remain active. I walk as much as I can and do a quick paced 4 miles without too much discomfort. Walking is actually less painful than standing still for a period of time. I continue to swim, do some biking, kayaking, lots of stretching and am now working with a Stott Pilates instructor on core strengthening. Just started playing pickle ball, too.
I experience more bouts of pain these days but the magnitude is definitely related to how much I do. I feel lucky in that I don’t have constant daily debilitating pain. On a daily basis it’s more a constant feeling of being uncomfortable which gets worse as the day progresses.
But due to the continuing progression of my curve(s) - it seems surgery is in my future and I’ve been investigating my options. Fortunately, I have access to and have been seen by Dr. Glazer and Dr. Rand in Boston and last January by Dr. Lenke in NYC. I live in southern NH so Boston and NYC are quite accessible. They all agree I will need surgery someday as my curves, pain and quality of life will continue to worsen. Within 1-5 years I was told in Boston. In NYC, I was advised before age 60 is best, 60-65 is good, too. The timing is really up to me. Dr. Lenke said I would be 3-4 inches taller post-op.
As reported by Dr. Lenke, I now have a right thoracolumbar curve measured at around 90 degrees with a 65 degree thoracic curve above and 35 degree lumbosacral curve below. Coronal balance is off 25cm to the right. Sagittal plane shows 33 degrees of thoracic kyphosis, 67 degrees of lumbar lordosis with an incidence of 84, tilt of 30 degrees. Sagittal balance is positive by 1 cm. Rotatory subluxation developing in both L2-3 and L3-4. MRI scan shows no stenosis in the lumbosacral region. Definitely looks a little osteopenic in the spine (subsequently confirmed by a bone density scan).
The size of the curves frighten me and so does how compressed my torso looks on a standing x-ray. I’ve read here and elsewhere that adult spinal fusion surgery is about pain and not progression. I would be fused T-3 to sacrum. I am still functioning well and some days not sure the level of the discomfort or pain I experience justifies a surgery of this extent at this time. I am fearful of doing the surgery in March and giving up my current level of activity, loosing flexibility and all the many other things I could be left to deal with. But if I wait much longer and become less active there is a downside to that, too.
Has anyone had recent surgery with Dr Lenke at the Spine Hospital in NYC? I realize Dr Lenke is one of the best…I just wonder how the hospital experience is there.
How do you deal with the inflexibility of being fused T3-sacrum? Loss of flexibility is Dr Rand's biggest concern for me in regard to what my “level of function would be afterwards compared to her current level of functioning, which is quite good”. Is the lack of flexibility something you just get used to? Would I still be able to get down on the floor and play with my grandkids?
Anyway, thanks for taking the time to read this. I would love to hear your thoughts!!
Janice
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