A proposed conservative revision surgery, would like input

[curlygirl]

I am 65 years old and had fusion in 1976 with Harrington rod, was corrected from 49 degree lumbar curve to 23, but it later went to 37, where it stabilized for many years. It’s been gradually getting worse, and rod has been broken for a long time. I went for x-ray last week and it got 6 degrees worse in past year and is now back at 49. It’s very deforming looking but I don’t have any pain or functional problems. However, I’m concerned about future progression. My x-ray last week was with Dr. Dennis Crandall’s practice here in Phoenix, but unfortunately there is a very young NP who is a gatekeeper, and you can’t see a doctor unless she thinks you are a surgical candidate. Wanting to see an actual doctor, I went to see the other good scoliosis specialist here, Bill Stevens. He thought I would be a good case for a medical ethics class – do you operate on someone like me? But ultimately, he looked at my bone density, and it is at about the lowest he would accept and that my time frame for any intervention is this year before bone density gets any worse. I’ve been on Forteo and am currently on Prolia and have used other osteoporosis meds in the past, and do everything I can to help bone density. He suggested that because of age/bone density, he could do a fusion that would keep me from getting worse – in other words, not remove old hardware or do osteomoties, just stabilize me. It would be anterior/posterior a couple of days apart and fuse to S1 or S2.I’m not sure which. Curve level would stay the same but he said he could better “balance” me – I didn’t quite get what that means and if that would result in a visual improvement. Does this sound like a good approach? Should I seek another opinion, and if so, where? I’m in Phoenix but willing to travel for the best outcome. I kind of like this conservative approach but any surgery does worry me at my age. Dr. Stevens said I’d be walking a mile a day a month post-op. Sorry so long, would greatly appreciate your thoughts. Bonus points if anyone has had personal experience with Dr. Stevens!

[LindaRacine]

I am 65 years old and had fusion in 1976 with Harrington rod, was corrected from 49 degree lumbar curve to 23, but it later went to 37, where it stabilized for many years. It’s been gradually getting worse, and rod has been broken for a long time. I went for x-ray last week and it got 6 degrees worse in past year and is now back at 49. It’s very deforming looking but I don’t have any pain or functional problems. However, I’m concerned about future progression. My x-ray last week was with Dr. Dennis Crandall’s practice here in Phoenix, but unfortunately there is a very young NP who is a gatekeeper, and you can’t see a doctor unless she thinks you are a surgical candidate. Wanting to see an actual doctor, I went to see the other good scoliosis specialist here, Bill Stevens. He thought I would be a good case for a medical ethics class – do you operate on someone like me? But ultimately, he looked at my bone density, and it is at about the lowest he would accept and that my time frame for any intervention is this year before bone density gets any worse. I’ve been on Forteo and am currently on Prolia and have used other osteoporosis meds in the past, and do everything I can to help bone density. He suggested that because of age/bone density, he could do a fusion that would keep me from getting worse – in other words, not remove old hardware or do osteomoties, just stabilize me. It would be anterior/posterior a couple of days apart and fuse to S1 or S2.I’m not sure which. Curve level would stay the same but he said he could better “balance” me – I didn’t quite get what that means and if that would result in a visual improvement. Does this sound like a good approach? Should I seek another opinion, and if so, where? I’m in Phoenix but willing to travel for the best outcome. I kind of like this conservative approach but any surgery does worry me at my age. Dr. Stevens said I’d be walking a mile a day a month post-op. Sorry so long, would greatly appreciate your thoughts. Bonus points if anyone has had personal experience with Dr. Stevens!

Hi...

I've never seen Dr. Stevens professionally, but know him from the time he was a fellow at UCSF. I think he's giving you good info. It sounds like he's saying he can keep your curve from progressing, but that it won't change how you look.

If I were in your situation, I would not have surgery. I think I would watch for a couple of years, to see if your curve continues to progress. Even if it does progress, there's not necessarily a reason to have surgery. Here are the reasons why I would choose to avoid surgery in the short term:

*You currently have no pain. There's a very realistic possibility that the surgery will cause long-term pain, and even if you progress, you may never have pain if you don't have surgery.
*You have poor bone quality.
*Curve progression might be completely benign. Even if your curve increases, it's unlikely to cause any issues with things like heart, lungs, or abdominal organs.
*Fusion to the sacrum may severely limit your flexibility. This doesn't happen to everyone, but in my own case, it's the thing I hate the most about having had my fusion extended to the sacrum.
*Surgery at 75 isn't much more risky than it is at 65.


I'd be happy to talk with you more in depth if you feel the need. Best of luck with your decision.

Regards,
Linda

[curlygirl]

Hi Linda,

Thanks so much for your thoughtful reply. Yes, this is complicated. The issue is that my bone quality now is just "ok" but if it decreases any more, I would not be an acceptable surgical candidate, so the window of "opportunity, " such as it is, is basically now as he would refuse me if density decreases. So this is the year I'd have to decide. Otherwise I would definitely wait it out more. So if curve increases more next year I'd be stuck with an even larger curve with no opportunity to stabilize. He doesn't think I'd have any less flexibility than I currently do - all of my bending is from the hips at present. He does think I could have some pain, but he guarantees me that I'll eventually have pain if I do nothing. I don't think he was trying to "sell" me a procedure, I think he was being very measured. Does any of this affect your thoughts? I feel like I'm dammed if I do and dammed if I don't!

[LindaRacine]

Hi Linda,

Thanks so much for your thoughtful reply. Yes, this is complicated. The issue is that my bone quality now is just "ok" but if it decreases any more, I would not be an acceptable surgical candidate, so the window of "opportunity, " such as it is, is basically now as he would refuse me if density decreases. So this is the year I'd have to decide. Otherwise I would definitely wait it out more. So if curve increases more next year I'd be stuck with an even larger curve with no opportunity to stabilize. He doesn't think I'd have any less flexibility than I currently do - all of my bending is from the hips at present. He does think I could have some pain, but he guarantees me that I'll eventually have pain if I do nothing. I don't think he was trying to "sell" me a procedure, I think he was being very measured. Does any of this affect your thoughts? I feel like I'm dammed if I do and dammed if I don't!

You're definitely between a rock and a hard place. It doesn't really change my opinion. If you expect your bone quality to worsen, having implants attached to your spine could absolutely be problematic. Over the 25+ years I've been involved in scoliosis support, I've known several people who have had to have many surgeries to deal with implant pullout. It's possible that implants have improved and the risk lessened, but I haven't heard that. If it was me, I would elect not to have surgery, and would continue trying to improve bone quality.

Good luck with whatever you decide.

--Linda

[titaniumed]

Curlygirl,

Hanging around here following the forum for around 15 years I have seen a few pullouts....(in non osteoporitic bone also, and at a young age)

Just about every single article and study on driving screws into osteoporotic bone will state that it presents challenges. They have tried all sorts of screws, hollow where they inject cements down into the trabecular bone, some screws expand like wallboard screws, and they do have the "cortical" method which helps some,(30% increase in pullout loads) they drive them in from a different start point, and at different angles. Sort of like when a carpenter drives nails or screws in on angles to help with holding strength.

When one think's about bone, I would say that most people think about teeth. They seem pretty hard. There are 2 different types of bone, the outside being cortical bone (hard) (like teeth) and the inside is trabecular bone (porous and spongy) The majority of the holding strength of pedicle screws is in the outside hard cortical bone, which is just around a turn and a half of thread engagement, and the rest of the screw, or the majority of the screw is buried in the trabecular bone which is not really a great anchoring base material. (Think of styrofoam) This is why I keep telling everyone to take it easy during recovery. It basically takes a year to fuse, and some people have a lot of problems fusing, and they don't know why. Its a biochemical mystery. I can post peer reviewed studies on this subject matter if need be.
https://en.wikipedia.org/wiki/Bone

For Diameter Length ratio on machine screws in steel, we use the 2X dia rule but I prefer a minimum 3X on thread depth. And that's in steel....not bone. I have worked in the metals industry for 50 years. I naturally get jumpy about pullout forces. (smiley face)

Adult scoliosis surgery decision making is all about pain. Some have no pain, and some of us suffer quite a bit. I waited in pain for 34 years as I was a surgical candidate in 1975. The pain at age 49 was mind blowing. No osteoporisis, but multiple CT and MRI verified herniation's and all the rest that scoliosis has to offer. Impingement of nerves and spinal cord stenosis (narrowing) can create incredible nerve and cord related pains. For those without pain, its hard for us in pain to imagine this. To have a Harrington rod installed a half century ago and do so good is just amazing.

Here is another way to think about it. Lets say you have a 30% chance of pain after your surgery, and a 30% chance of pain 10 years down the road. It doesn't make sense to chance that pain "NOW" since you are not in pain now. I know this sounds difficult, but I agree with Linda Racine on her call.

I would wait. Besides, they are constantly working on new cements and technology every day. I waited for technology and remember the pedicle screw. (1983) I was a Luque wire candidate when you had your original surgery, not a Harrington candidate since my lumbar was in bad shape when I was 16. Harrington Rods don't fuse to the pelvis. Surgeons will just about never ever fuse kids to the pelvis. I found that out a long long time ago...

Even though many of us scoliosis surgical candidate "lifers" have to be proactive and think about timing of our surgeries, (timing being so important) there are times when doing nothing makes sense.

Also, there is something about worrying about what happen's in the future that is just wrong for our sanity, I did my worrying. I am not going to assume I will have a heart attack, when its going to be cancer. Please don't worry about the future, its just not worth it. I wouldn't assume anything. Its one day at a time.

Hope this helped, You have done well!!!

Ed

[curlygirl]

Thank you both very much for your well-reasoned and educational comments, I much appreciate it. If doing nothing is the right course I may just have to live with that. However, since I have seen only ONE actual doctor and I'm between a rock and a hard place, it would settle my mind quite a bit if I could be evaluated in person by another actual doctor or two.

LA is an easy trip from Phoenix. I did a little research and here are two doctors I'm thinking of visiting. Any opinion on either of these:

Anand
Pashman

Thanks!

[mabeckoff]

Thank you both very much for your well-reasoned and educational comments, I much appreciate it. If doing nothing is the right course I may just have to live with that. However, since I have seen only ONE actual doctor and I'm between a rock and a hard place, it would settle my mind quite a bit if I could be evaluated in person by another actual doctor or two.

LA is an easy trip from Phoenix. I did a little research and here are two doctors I'm thinking of visiting. Any opinion on either of these:

Anand
Pashman

Thanks!

If you are going to California, you should see Dr Bederman in Orange