Hi, all! I was unable to follow through on surgery five years ago, because family members bailed on promised help. In-between, a youngish son (now 26) has expressed willingness to help during and after surgery, though naturally with hired females for hands-on help, at least, at first. I dropped out of the site because the whole issue became too depressing, since I was unable to act on the considerable research I did. I hope some of you will be willing to plow through this lengthy updating, and help with current decision making.
In the intervening years, my spine has suffered more degeneration especially in the lumbar area, with increased neurological problems from the spinal stenosis. Two vertebrae have fused on their own, and I am more pitched forward when I walk (with support only, > 100 yards) . The curves have not changed much (~60, 30, 60 S-shaped), but I have lost almost an inch more in height (in all, now 5+"), while finding myself nearly ten lbs heavier (struggling to get that off before any surgery). It seems this is mostly from loss of disk space, however (Don’t know why that wasn’t clarified before; I now understand I can gain back at most 1 - 1 1/2 ‘ from any correction). I'm on Medicare now, but though I‘ve lost my excellent secondary policy (an indemnity plan that would have reimbursed me $40K directly!), I find my worst fears haven’t materialized; all the surgeons I'm revisiting, accept Medicare. They are: Drs Errico and Schwab in NYC, NYU Langone (they would be operating together), Dr. Michael Neuwirth (now at Mt. Sinai), and hopefully, I’ll soon be invited back to see Dr. Christopher Shaffrey at UVA. Only Dr. Schwab is new and even then, Dr. Errico said before, he only wanted to operate with him. (Guess my spine is a challenge).
It sounds like their surgical plans have changed in at least two major regards. 1) While they (all three) are still thinking of beginning my fusion at T3, T4 to the pelvis, these three NY surgeons would no longer be thinking of an A + P procedure (Dr. Neuwirth had been planning to leave a week to ten days in-between!). Instead, they'd perform one posterior operation with various “LIFs” to reinforce their work. Secondly, they would use only limited BMP, instead mixing it with my own harvested iliac bone. On the one hand, I much regret losing my iliac crest (I remember hearing many pts found these graft sites the most painful thing, long-term. What’s more, as a figure artist, this is my favorite part of human anatomy! It's OK to laugh!). OTOH I recall when the NYTimes published the first findings associating BMP with bone cancer (and possible spinal cord impingement), so perhaps reducing its use, reduces this risk – already, small, so I am told.
No one, I should add, was keen on fine-tuning their intentions since I came with one leg in a cast – a gift of a recent ice-storm! That made the evaluation necessarily incomplete (supposed to return, sans cast). I hope to see Dr. Shaffrey, in under two months. He wants my new MRI and a referral, which I hope will be enough.
Wondering what if anything, he will have to say about how he might want to approach my spine now, if different. Five years ago, he was the only one of six surgeons I saw, who planned to do an all-posterior approach – and wrap me up in under seven hours (compared to far longer “under” elsewhere and mostly, staged). This put me off at the time; now, I think perhaps he was in the vanguard! Is using less BMP standard - and is the field returning to hip grafts? I recall reading that Dr. Lenke refused to operate without BMP five years ago, despite the warnings coming out. But maybe even he has changed by now for both economic and ethical reasons. (Heads up - he’s moving to New York City in July! Perhaps this is already old news to you all. I sure I'm still below his deformity cut-off, so it’s not as exciting for me as otherwise). New York City is a five hour drive – the same as UVA, but with much worse traffic and potholes! A major reason to prefer Dr.. Shaffrey, all by itself. It was bad enough hitting the bumps with a broken leg!
Greetings to old friends! I’m pretty nervous about the surgery still, but more resigned. It hurts! I’m still beset with worries, but don’t want to age out of the option. So much remains up in the air, though: how can I get fit enough for the surgery (in time), should I have my knee joint replaced first, what if I have to delay the spine op til late summer - or even next year (undesirable). I've become understandably shy of ice here in the NE (people have this surgery in the Winter? How?). I also worry about how to plan without trashing my son’s internship needs, already late. It's scary to contemplate the possibility/probability of future surgery. I realize complications are frequent, and I don't know how I would proceed. Meanwhile, though, I'm trying to hope for the best, even though I can't plan for the worst.
Any and all comments welcome. I need to decide between surgeons, locations (part of choosing surgeons) and scheduling times, with many contingencies out of my hands. Which factors should I prioritize? (Trying to into a pre-surgical frame of mind, too)
In the intervening years, my spine has suffered more degeneration especially in the lumbar area, with increased neurological problems from the spinal stenosis. Two vertebrae have fused on their own, and I am more pitched forward when I walk (with support only, > 100 yards) . The curves have not changed much (~60, 30, 60 S-shaped), but I have lost almost an inch more in height (in all, now 5+"), while finding myself nearly ten lbs heavier (struggling to get that off before any surgery). It seems this is mostly from loss of disk space, however (Don’t know why that wasn’t clarified before; I now understand I can gain back at most 1 - 1 1/2 ‘ from any correction). I'm on Medicare now, but though I‘ve lost my excellent secondary policy (an indemnity plan that would have reimbursed me $40K directly!), I find my worst fears haven’t materialized; all the surgeons I'm revisiting, accept Medicare. They are: Drs Errico and Schwab in NYC, NYU Langone (they would be operating together), Dr. Michael Neuwirth (now at Mt. Sinai), and hopefully, I’ll soon be invited back to see Dr. Christopher Shaffrey at UVA. Only Dr. Schwab is new and even then, Dr. Errico said before, he only wanted to operate with him. (Guess my spine is a challenge).
It sounds like their surgical plans have changed in at least two major regards. 1) While they (all three) are still thinking of beginning my fusion at T3, T4 to the pelvis, these three NY surgeons would no longer be thinking of an A + P procedure (Dr. Neuwirth had been planning to leave a week to ten days in-between!). Instead, they'd perform one posterior operation with various “LIFs” to reinforce their work. Secondly, they would use only limited BMP, instead mixing it with my own harvested iliac bone. On the one hand, I much regret losing my iliac crest (I remember hearing many pts found these graft sites the most painful thing, long-term. What’s more, as a figure artist, this is my favorite part of human anatomy! It's OK to laugh!). OTOH I recall when the NYTimes published the first findings associating BMP with bone cancer (and possible spinal cord impingement), so perhaps reducing its use, reduces this risk – already, small, so I am told.
No one, I should add, was keen on fine-tuning their intentions since I came with one leg in a cast – a gift of a recent ice-storm! That made the evaluation necessarily incomplete (supposed to return, sans cast). I hope to see Dr. Shaffrey, in under two months. He wants my new MRI and a referral, which I hope will be enough.
Wondering what if anything, he will have to say about how he might want to approach my spine now, if different. Five years ago, he was the only one of six surgeons I saw, who planned to do an all-posterior approach – and wrap me up in under seven hours (compared to far longer “under” elsewhere and mostly, staged). This put me off at the time; now, I think perhaps he was in the vanguard! Is using less BMP standard - and is the field returning to hip grafts? I recall reading that Dr. Lenke refused to operate without BMP five years ago, despite the warnings coming out. But maybe even he has changed by now for both economic and ethical reasons. (Heads up - he’s moving to New York City in July! Perhaps this is already old news to you all. I sure I'm still below his deformity cut-off, so it’s not as exciting for me as otherwise). New York City is a five hour drive – the same as UVA, but with much worse traffic and potholes! A major reason to prefer Dr.. Shaffrey, all by itself. It was bad enough hitting the bumps with a broken leg!
Greetings to old friends! I’m pretty nervous about the surgery still, but more resigned. It hurts! I’m still beset with worries, but don’t want to age out of the option. So much remains up in the air, though: how can I get fit enough for the surgery (in time), should I have my knee joint replaced first, what if I have to delay the spine op til late summer - or even next year (undesirable). I've become understandably shy of ice here in the NE (people have this surgery in the Winter? How?). I also worry about how to plan without trashing my son’s internship needs, already late. It's scary to contemplate the possibility/probability of future surgery. I realize complications are frequent, and I don't know how I would proceed. Meanwhile, though, I'm trying to hope for the best, even though I can't plan for the worst.
Any and all comments welcome. I need to decide between surgeons, locations (part of choosing surgeons) and scheduling times, with many contingencies out of my hands. Which factors should I prioritize? (Trying to into a pre-surgical frame of mind, too)
Comment