My story, Kyphoplasty advice

Posted by maggie25 @maggie25, Jun 10 12:00pm

In 2020 I broke my L1 vertebrae falling off the bed while having a leg cramp and that's when I learned I have osteoporosis. In the following two years I managed to increase my lumbar T-score from -4.6 to -4.0 by doing osteoporosis specific exercises from the Bone Clinic in Australia, and taking supplements. Three weeks ago I had a Dexa scan and my lumbar T-score dropped back to -4.4 and it showed three new, stable compression fractures in the lumbar region which were from shoveling snow early this year. Then, two weeks ago I restarted my osteoporosis exercises after not doing them for 8 months. As a result, I injured my back again with a compression fracture at T7, possibly from jumping jacks.
This morning I visited the surgeon who does kyphoplasty and he recommended the surgery to prevent the compression fracture from worsening into more of a wedge. He also said it would alleviate any pain in the area. I have barely any pain and often no pain, but I don't want another wedge shaped vertebrae. I understand the wedges compound and can damage the entire spine. Additionally, the surgeon mentioned there are 4 studies which disprove the idea that the hardness of cement in one vertebrae can cause other vertebrae to fracture around it. He gave me this article. https://pubmed.ncbi.nlm.nih.gov/38811388/ I am trying to decide if I should do this. If I do the surgery, it needs to be done soon. I appreciate any advice on kyphoplasty.
In addition to having to make the decision on surgery, I now I feel my bones are too fragile to do many of the activities I love, especially bicycling, at least until I can get my bones back on track.
I'm just beginning to read more on osteoporosis and follow discussions here. I very much want to do things naturally but realize perhaps that isn't enough at this stage. I appreciate reading discussions on Osteostrong, Keith McCormick, Dr. Doug Lucas and others.
If anyone has a provider who is an osteoporosis expert they like, and especially one who uses both natural and traditional cures, I would very much appreciate it if you could share that.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@maggie25 with five fractures and a score in the -4's, I am pretty sure Keith McCormick will tell you to go on Tymlos, Forteo or Evenity asap. He does in person and phone consults for $350 for the initial consultation and $85 thereafter for 15 minute check ins. But a traditional endocrinologist with expertise in osteoporosis could be a place to start and then you could add on the supportive holistic approaches.

I have 6 spinal fractures, 3 from a traumatic fall in 2006, 3 from an unwise movement in 2021. I hate to say this, but bicycling, shoveling and jumping jacks are probably dangerous for you and will be forever. My spine was at -3.7 when I had those 3 lumbar fractures and Tymlos got it back to -2.5 but that doesn't mean bone quality has been restored. And my femur neck is still -3.6. Hip went from -3.3 to -2.9. I did Tymlos, 4 months Evenity, and will do a partial dose of Reclast this week.

If you have more fractures or they worsen, you will have trouble lifting anything, opening windows etc., possible effects on GI and lung function, even heart (I get afib if I eat a normal amount at one time). I do not feel I have maintained my independence in many ways.

I hope you will consider meds. It sounds, frankly, like you are in danger. I know I am, even with improved bone density.

I did not have kyphoplasty. Every doctor has a different opinion on this. My orthopedist said it helped with pain initially (I was in severe pain) but the outcome would be the same. Not only did he think that the glassy composition of the kyphoplasty might encourage fractures (I am reading the article you posted) but I was still concerned about leakage of cement into lungs or other areas.

I accept a certain disability level and that it won't get better. I am able to walk 20 miles in a weekend (not entirely pain free) but have trouble opening a window, lifting a pot to cook, or lifting groceries (one liter seltzer bottle is about my limit). I do tai chi- that is relatively safe.

I know you aren't where I am but your could be. I hope you consider meds. They work. You can supplement and also follow up the meds with holistic approaches. McCormick and Lani Simpson, both proponents of "whole body" approaches, have done meds. McCormick did Forteo and Fosamax before other meds were available.

Pick up his book "Great Bones" and maybe watch Dr. ben Leder's video on YouTube "Conbinations and Sequencing Approaches to Osteroporosis." Tymlos is great because the dose is adjustable and you can ramp up. Great for spine. Evenity turbocharges density and you may have that suggested. Read up on sclersostin. I have a feeling you will prefer Tymlos!

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I don't think you should be doing jumping jacks.
I have managed to improve dexa scores from -4.00 for spine to -3.6 so far, over 3 yrs. I introduced heel drops some time ago they are certainly safer than any kind of jumping.
The important thing is to stay safe, easier said than done when we must exercise.
I am so sorry to hear of your problems and I hope you can get some helpful advice and find an optimistic way forward

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Thank you, @windyshores and @sharon31 for the excellent advice. It is much appreciated and I've already started taking much of it. I agree that jumping jacks are out. I do wonder if there is any scientific way to test bone strength. I have, unfortunately, used the break-a-toe method - I broke two toes and a metatarsal in three years. I guess I was in denial about the bones.

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maggie,
consider kyphoplasty. They may be able to restore some of the lost height, which protects from damage to the facet joints as well. Be sure the kyphoplasty provider will protect you from the risk of overfill. Would your doctor send you to interventional radiology ?
I would want to be on Forteo or Tymlos as soon as possible.
Something has made you dauntless. "Break-a-toe method," in deed.

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I'm sharing a Margaret Martin link that arrived in my inbox this morning. It is loaded with information.
Best of luck!
https://melioguide.com/compression-fracture/vertebral-compression-fracture-guide/

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Thank you very much @sonodeka. I have now watched these videos (and read the text) and they are hard to watch, but full of good information. I appreciate that you shared them with me. The responses from everyone have been so kind and helpful and I appreciate all of them very much.

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@gently

maggie,
consider kyphoplasty. They may be able to restore some of the lost height, which protects from damage to the facet joints as well. Be sure the kyphoplasty provider will protect you from the risk of overfill. Would your doctor send you to interventional radiology ?
I would want to be on Forteo or Tymlos as soon as possible.
Something has made you dauntless. "Break-a-toe method," in deed.

Jump to this post

Thank you for your advice, @gently. Yes, Tymlos sounds like a good bet for me. And I'm certainly considering kyphoplasty. There is so much to take in at once.

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@maggie25 I did not do kyphoplasty and just read an article today that repeated what my doctors said: it can provide pain relief in the short term but doesn't change the long term outcome. The glassy material that results may encourage adjacent fractures. I have seen arguments against this and also arguments in support of that. Intuitively it makes sense. But the altered structure of the spine from fractures also might encourage fractures.

My pain improved over 3-4 months. I haven't had any more fractures since 2021. Just one person's story!

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