My husband has a cervical spinal injury and was hospitalised about 3 months ago for a couple of weeks while they investigated a huge amount of extra spasticity which stopped his legs working. The only thing they found was a stress fracture at L2 which they attributed to Paget's Disease. They were very reluctant to age the fracture and wouldn't commit to whether it was new or not. Fast forward to last week and he had another MRI of his lower spine (different issue) and mentioned that his L2 vertebra has collapsed further.
What I am struggling to find out (as the A&E docs couldn't tell me) is why this has happened. Is this how vertebral fractures progress? Do they keep on collapsing? They assured us that the Paget's was limited to this vertabra and was not active. Do any of you clever people know anything about this - or am I asking in the wrong part of the forum? I have posted on here previously as I have mild osteoporosis so I know you are a knowledgeable lot about spinal fractures. Thanks in advance for reading.
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Mo51
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Hmm. I don't know anything, especially not about Paget's disease and how you could have it in just one vertebrae. What I think I AM learning, through experience mostly--that doctors are "unwilling to commit" to anything (related to bones/fractures?) is evident to me, too--is that vertebral fractures, at least related to osteoporosis, don't heal like...other bones. They heal enough to not hurt so much, but not enough to be "stronger in the broken places". One doctor, a physiatrist, suggested (I think) that what I might be doing to myself when I repeatedly provoke pain responses in the same spots is tweaking or irritating an old injury. Which makes sense. My bones are apparently like balsa wood (maybe not THAT bad...😜) and once something is cracked, it doesn't take much to jostle those frayed ends together.
I recently, so incredibly stupidly, went for a short, easy run--just to see. I felt nothing "bone-wise" during the run but two days later I was pretty sure I had a new fracture (and oh, do I wish I hadn't found THAT spot.) I have not had the pleasure of more effective diagnostic tools; so far, what I've been able to get is an x-ray that I ask for from urgent care. They said they saw nothing at T8 (which is about where the new one is,) but L1, which had previously been detected, was...wider. Or something. I figured--if that's accurate at all--I just jostled it.
Does that make sense? I definitely haven't figured it all out--this is still a newish diagnosis for me (and in my opinion, care providers are lamentably uninterested in my condition/status...might be my insurance? Might be they just really don't know?) But it kind of makes sense to me.
Thank you for taking the time to reply Josephinius1. O agree re docs being reluctant to commit to bone related matters. I hope you get something figured out soon and the right treatment for you. I think here in the UK because of the NHS, it's not a money related non interest - just quite a specialist thing and the A&E docs aren't specialist. Hopefully when we get to see the orthopedics specialists we might get more answers
Thanks Emersee. That's a good article. It's not Paget's though that is the puzzle for me. I had a very long chat about Paget's with a helpful rheumatologist a few months ago when my husband was hospitalised and diagnosed with a crush fracture. What I am trying to find out, is how long before we can be sure that any collapse on the vertabra is complete and what causes further collapse. Sorry - probably didn't explain well
Hi! If your Husbad has weak bones he will get fractures. Has he been diagnosed with Osteoporosis. If he has he should be on some sort of treatment. There is many that can help stop bones breaking.
Thanks for your reply. As far as we are aware he doesn't have osteoporosis. It's Paget's which generally only affects a single bone. But he is having a dexa scan just to confirm their opinion. They have said that the treatment for Pagets (if it should affect more than just the one bone) is AA or similar. But at this point they are pretty sure it's just the one bone. They did blood tests and Paget's isn't active at the moment. I am trying to understand more about why after the original fracture there has been a further collapse and how long before we can be sure it has collapsed as much as it is going to. They have confirmed it is "stable" and doesn't need surgery
I don’t know anything about Paget but I’m pretty sure he would need something to strengthen his bones. AA will do it or there is other things. It would be good if they can clarify it.
I don't know how long your husband has had a spinal injury, but particularly if it is long term, he is likely to have osteoporosis below the level of injury. Bone density seems to reduce quite quickly after injury. I have been T6 paraplegic for 44 years, and my bone density is terrible in my bottom half. I believe it is something to do with the system not taking nutrients round the body properly, particularly to places where there is not much surrounding muscle. I don’ know anything about Paget’s disease or whether he may or may not actually have it, but I know it is common for SCI people to break legs even doing something apparently non-traumatic like turning in bed. We also often don’t initially know we have done so because of impaired sensation. I guess the same vulnerability is true of vertebrae although the latter may be stronger in low level or incomplete paraplegics than complete tetraplegics. The fact that your husband is getting extra spasm suggests something new has happened, but a fracture is far from the only reason that might trigger it.
So far, because of another medical condition which affects my options, I have resisted treatment. I do make sure my calcium and 1.25 vitamin D levels are adequate though. Who knows whether this is wise and I am being pressured to reconsider!
Thanks Jubox. That's helpful and makes sense. He had a laminectomy op 12 years ago to decompress at C4-C7 and instead of helping it made him very much worse with huge weakness on his right side. For around 9 years he improved little by little with the help of neuro physios though never anywhere near what he was before the op. Then about 3 years ago things started to go the other way and he has deteriorated. Aging (he is 74) and a deteriorating spinal cord (Myelopathy, plus new stenosis is probably responsible. He now has an appt with an orthopedic consultant at the end of November and a dexa scan early November . Hopefully they can help us to understand what is going on. Hopefully it's Pagets as that mostly affects only one bone (or vertabra) rather than osteoporosis which affects the whole body. I am hoping treatment with AA not necessary for my husband as I have mild osteoporosis and the AA gave me digestive issues and migraines. So I stopped it after 2 months and have gone the exercise, supplement and diet route instead. I wish you lots of luck with your treatment choices. Sounds complex.
Well, I don't know about Paget's, but I'm pretty versed in fractures with 10 of them now in the last 13 months. They start weakening, then collapse/compress at stages, if there's no accident or such. Mine are usually causing major pain at 50% compression, then go down from there, I am insane with pain at 80 or greater compression. I had a parathyroid tumor for years, doctor's failure to address, listen, get testing done, more important they thought I needed stress relief, work less, and get more exercise. I diagnosed it with my own labs, found a surgeon, self referred, and went half way across the USA to get it removed. Stand up for your husband with the docs.
Thank you. Sounds pretty grim for you. My husband's pain has been bad with just the one! 13 sounds like hell on earth. Good advice - and yes, I will keep at the docs and try to understand what's going on and get whatever help I can for him. Meanwhile I sincerely hope you get some appropriate treatment or at the very least some pain relief. Wishing you well Southerngirl
Labs. The available radiology are not consistent, or valid 50% of the time. I could not get my doctors to pay attention. So I gathered all my labs and DEXA for the past 20 years, concentrating on PTH, Blood Calcium, Vit D3, but I kept up with a few others, put them on a spreadsheet. I also reduced my supplements, so I knew I wasn't running up the values by taking too much Vit D or calcium. Then I saw the trends with PTH going up, and Calcium bouncing all over the place, but going above 10.0 many times. The lab ranges are wrong, the error is having children included in the range, adults over 30 should never be over 10.0 period. So I ordered labs online, every two weeks for three months. The trending kept going up. Then I read, everything I could find, the best information is at Parathyroid.com, Dr Norman's Tampa Parathyroid Center, where I eventually consulted with them, validated that radiology wasn't needed, used their APP with symptoms and DEXA results, lab values, and it said "likely". My calcium never got over 10.4, so not horrible, but the doctor I had a two hour consult via phone said the team studied my records and said, it's a tumor. They do a sestamibi parathyroid scan (nuclear medicine which is performed to localize parathyroid adenoma, but is not definitive. They do it the morning of the surgery to remove. Mine was bright as present; then removed.
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