I am 58 years old, have a left thoroclumbar curve that is 60 degrees and starts at T12 with a compensating curve below at 30 degrees. I have been suffering with sciatica and neuropathy for six years and with walking distances and standing for one year.
I saw Lonner, Errico and Clements this week (questions below).
Both Lonner and Errico think I will need surgery—now or in the next year or two.
Clements suggested I try epidurals for three months first and then make up my mind. I am resistant to the epidurals as the one epidural I had initially made me feel worse and then did nothing and there isn’t agreement about where to do the epidural (seems like it’s a guessing game).
I gravitate towards Lonner, though I know Errico would also be a good choice. I clicked better with Lonner; my wait in the office wasn’t long; his office runs more smoothly and will handle all insurance issues; he spent more time with me; was more upbeat about the outcome and his office was more technologically up to date.
What I liked about Errico is that he does all adult scoliosis surgeries with Frank Schwab, making for an impressive team.
Now my questions or novella (LOL):
Approach: Lonner said he would fuse me T10 to sacrum and NO bone grafts. Errico said T4 to sacrum and bone grafts. He said studies show that T4 to sacrum is best fusion for those who need fusion in thoracic area. Which do you think is better?
Hospitals: Both surgeons operate out of NYU Hospital for Joint Disease, and NYU Hospital. Is one better than the other?
Making the Decision: Everyone says you know when it is time to make the decision. I feel like I may never be that way. Did everyone feel they knew when the time was right?
Confusing Factor (Not a question but looking for insights): Just as I was getting ready to firm up my decision at the end of August I found out that I have B6 toxicity, which can also cause neuropathy including problems with walking.
My B6 levels are not crazy high, but are twice normal. I began taking vitamin B five years ago after suffering for 8 months with sciatica and some neuropathy (binding in feet). I took 100 mg of B6 (FDA tolerable level), but also took a multivitamin (which included 2 mg of B6—all that is needed) for a total of 102 mg.
I stopped taking vitamin B at the end of August and am told that it will take 2 to 3 months to clear from my system. I will be tested at the end of this month. I am not sure how long it will take for the effects of B6 to cease. I have not found a doctor who is really knowledgeable about this except for my neurologist who says nerve damage may be permanent, but I think that view is extreme.
Since I stopped taking B6 I have gotten a little better, but I am doubtful B6 is the answer to my problems. In addition to wanting to wait a little bit to schedule surgery just to see if B6 is a bigger factor than I think, I do have some concern about the surgery since my leg symptoms don’t see classic.
To explain my leg symptoms—I can walk and stand, but first feel soreness at the bottom of my right foot (opposite my curve) foot that later translates into tightness in my calf and the back of my leg and pulsing on my calf, and tightness in my butt (sometimes right above my butt) the more I walk/stand often the worse I feel and though rest can provide some relief, the leg/foot/butt problems become pronounced with the more I do. I can physically walk distances, but pay a big price if I do. The problem is cumulative and is worst at night after a day’s activity.
It’s as if my feet don’t like the weight of my body. And my problems are mostly on the right opposite my curve where I am told the nerve endings are.
My MRI said I had stenosis; but according to a CT myelogram (more reliable) I don’t—just arthritic changes, some listhesis and bulging discs at each level—nothing really bad.
Lonner explains my symptoms as the effects of loading on my scoliotic spine and he doesn’t even think I need to wait for surgery. He does not think my problem is B6.
Errico says my symptoms probably come from stretching of the nerves. When pressed he said some of my symptoms may be B6. But it is hard for me to separate B6 from other symptoms.
Clements thinks my problem comes from arthritic changes right below my curve that trap nerves at multiple levels.
Probably no one on the forum knows anything about B6, but I throw this issue out there. I also wonder how much people’s symptoms vary—if there is a large difference in the way symptoms can be individualized.
I have a gut feeling I will need the surgery and because of my age and the limitations imposed by my symptoms don’t want to wait too long. I know the surgery will offer new limitations, but if I could walk without limits and stand as long as I want it would be huge.
Thanks in advance and thanks to all who have spoken to me or emailed me individually and offered their support and guidance.
Lisa
I saw Lonner, Errico and Clements this week (questions below).
Both Lonner and Errico think I will need surgery—now or in the next year or two.
Clements suggested I try epidurals for three months first and then make up my mind. I am resistant to the epidurals as the one epidural I had initially made me feel worse and then did nothing and there isn’t agreement about where to do the epidural (seems like it’s a guessing game).
I gravitate towards Lonner, though I know Errico would also be a good choice. I clicked better with Lonner; my wait in the office wasn’t long; his office runs more smoothly and will handle all insurance issues; he spent more time with me; was more upbeat about the outcome and his office was more technologically up to date.
What I liked about Errico is that he does all adult scoliosis surgeries with Frank Schwab, making for an impressive team.
Now my questions or novella (LOL):
Approach: Lonner said he would fuse me T10 to sacrum and NO bone grafts. Errico said T4 to sacrum and bone grafts. He said studies show that T4 to sacrum is best fusion for those who need fusion in thoracic area. Which do you think is better?
Hospitals: Both surgeons operate out of NYU Hospital for Joint Disease, and NYU Hospital. Is one better than the other?
Making the Decision: Everyone says you know when it is time to make the decision. I feel like I may never be that way. Did everyone feel they knew when the time was right?
Confusing Factor (Not a question but looking for insights): Just as I was getting ready to firm up my decision at the end of August I found out that I have B6 toxicity, which can also cause neuropathy including problems with walking.
My B6 levels are not crazy high, but are twice normal. I began taking vitamin B five years ago after suffering for 8 months with sciatica and some neuropathy (binding in feet). I took 100 mg of B6 (FDA tolerable level), but also took a multivitamin (which included 2 mg of B6—all that is needed) for a total of 102 mg.
I stopped taking vitamin B at the end of August and am told that it will take 2 to 3 months to clear from my system. I will be tested at the end of this month. I am not sure how long it will take for the effects of B6 to cease. I have not found a doctor who is really knowledgeable about this except for my neurologist who says nerve damage may be permanent, but I think that view is extreme.
Since I stopped taking B6 I have gotten a little better, but I am doubtful B6 is the answer to my problems. In addition to wanting to wait a little bit to schedule surgery just to see if B6 is a bigger factor than I think, I do have some concern about the surgery since my leg symptoms don’t see classic.
To explain my leg symptoms—I can walk and stand, but first feel soreness at the bottom of my right foot (opposite my curve) foot that later translates into tightness in my calf and the back of my leg and pulsing on my calf, and tightness in my butt (sometimes right above my butt) the more I walk/stand often the worse I feel and though rest can provide some relief, the leg/foot/butt problems become pronounced with the more I do. I can physically walk distances, but pay a big price if I do. The problem is cumulative and is worst at night after a day’s activity.
It’s as if my feet don’t like the weight of my body. And my problems are mostly on the right opposite my curve where I am told the nerve endings are.
My MRI said I had stenosis; but according to a CT myelogram (more reliable) I don’t—just arthritic changes, some listhesis and bulging discs at each level—nothing really bad.
Lonner explains my symptoms as the effects of loading on my scoliotic spine and he doesn’t even think I need to wait for surgery. He does not think my problem is B6.
Errico says my symptoms probably come from stretching of the nerves. When pressed he said some of my symptoms may be B6. But it is hard for me to separate B6 from other symptoms.
Clements thinks my problem comes from arthritic changes right below my curve that trap nerves at multiple levels.
Probably no one on the forum knows anything about B6, but I throw this issue out there. I also wonder how much people’s symptoms vary—if there is a large difference in the way symptoms can be individualized.
I have a gut feeling I will need the surgery and because of my age and the limitations imposed by my symptoms don’t want to wait too long. I know the surgery will offer new limitations, but if I could walk without limits and stand as long as I want it would be huge.
Thanks in advance and thanks to all who have spoken to me or emailed me individually and offered their support and guidance.
Lisa
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