Historical fractures

[Nanaedake]

Did anyone discover that they'd had a spinal fracture in retrospect after they were diagnosed with osteoporosis quite a few years later? How did you find out you'd had a fracture and where it was? Also, did you get problems from it later on?

[Barnclown]

Yes: me! My osteoporosis was early onset, probably mainly due to my collection of early onset autoimmune illnesses. I refused the NHS giving me bisphosphonate osteo treatment for 10 years while I concentrated on self-help/lifestyle techniques which only managed to slow my rate of density loss slightly. But 4 years ago I gave in and began IV zoledronate annually

Now I’m 66 and have been responding positively to IV zol in that my DEXA scan stats have improved, but meanwhile I’ve had severe impact injuries resulting in big toe fracture + hand metacarpal fracture, and also non-impact grade 2 lumbar vertebral fractures (L1,2 & 5...the L5 fracture caused nerve root entrapment due to my hEDS scoliosis worsening as a result of the damage, so last summer NHS neurosurgery gave me instrumented L4/5 fusion which am still recovering from)

Hope something in there is useful. Am looking forward to following your discussion ❤️🍀 Coco

[Nanaedake in reply to Barnclown]

Thank you for replying. I hope you don't mind me asking another question. When you got the spinal fractures were you aware that you'd had a fracture or did you just have undiagnosed pain?

I hope you recover really well from your surgery.

[Barnclown in reply to Nanaedake]

🤷🏼‍♀️ Good question:

my hEDS + a fall from height onto head at 7 years old + similar onto coccyx mean I’ve been managing all grades of severity of chronic pain all my life...& rheumatology says pain severity is always increased in immune dysfunction + connective tissue disorder patients...so my feeling is that I simply misinterpreted the sudden severe onset persistent pain triggered by these 3 fractures as typical of all my other spine pain flares over the decades.

I did see my GP & specialist osteopath & specialist physio at the onset of all 3 though, cause am v cautious re self-diagnosis. Our interpretation was that these 3 episodes were ‘just’ related to more hEDS subluxations - my spine is severely hypermobile: I’ve been managing chronic facet joint syndrome-related pain all my life + chronic sacroiliac/pelvic girdle pain etc etc. And I also chose to imagine the mega intense character of the pain was just cause am older & more frail, ie my infant onset lupus alone has presaged me greatly. And my early onset ‘boy in the bubble’ immunodeficiency bone marrow disease has too...but, as with so many patients these days, the benefits of self help techniques + modern meds mean I mostly ‘don’t look sick’ 😉

Now we think first 2 critical pain episodes were probably related to the L1,2 Fractures, because the pain did v slowly over many months respond pos to management (Bearing in mind: my visceral hypersensitivity & Intestinal Failure mean I cannot tolerate any type of pain meds other than paracetamol & steroids, but I make sensible use of orthotic appliances & alternative therapies/lifestyle techniques)

It was the L5 fracture that alerted us to the possibility there was more to these critical pain episodes because it resisted all my reliable management tricks...for the first time I had to resort to a wearing big rigid lumbo/sacral brave longterm. ....and then, the response wasn’t as positive as it had been when I needed a rigid cervical brace for many years.

At about that time this shift into more extreme intensity of lumbo/sacral pain had been going long enough (approx 6 months) for NHS neurosurgery MRI & CT guided L4/5 steroid block to confirm scoliosis-related L4/5 nerve root entrapment & book me for the instrumented fusion. Meanwhile, at the same univ hosp, my rheumy’s 3 yearly bone density scan review had been ordered, and THIS TIME she made it a VFA by DEXA (radiology had just acquired a cutting edge vertebral fracture assessment whizzo version of a DEXA machine) and this imaging review diagnosed the 3 grade 2 lumbar fractures just before my spine op was performed. So we all realised those critical pain incidents of the last few years had not just been my usual hEDS subluxations.

Put simply: all this took several years to diagnose

Thanks...am recovering v slowly, but at least the nerve root pain is less! Turns out instrumented fusions are the protocol for osteoporosis-related grade 2 vertebral fractures like mine...

Sorry for the long reply. Hope something in there helps 🤞

[Nanaedake in reply to Barnclown]

Wow, you've had so much pain. Thanks for detailed reply. It sounds like some things take time to unravel.

[Barnclown in reply to Nanaedake]

💐👍❤️🍀

[Walkingdogs]

Hi, I have 2 old fractures that I didn’t know about. I found out when I got 2 new ones and had an mri scan. I don’t know how long I had the old ones. I’ve had a few falls over the years and some quite sore backs.

[nuigini]

I haven't reached the osteoporosis stage as yet, but do have osteopenia.

An MRI of my back last fall revealed an fracture of indeterminate age at T12. The radiologist may not know how old it is but I certainly do.

About 2 years prior to the MRI I had a major trauma to my back while boating in a small boat on rough seas. The resulting pain was excruciating. The emergency treatment I received included an X-Ray of my lumbar spine, but did not capture any of the thoracic area.

It took weeks for the pain to settle, but I don't have any on-going problems in that area of my back. All my issues relate to lumbar compression and normal wear and tear in that region.

[Nanaedake]

Thank you for responding. It's good to hear you have no problems in thoracic region now.

[KidneyCoach]

I was diagnosed with osteopenia. Then about 2 years later referred to ortho doc due to pain in hip. They did plain x-ray of back then asked me when my "accident" occurred and what type. Happened to have had a spinal compression fracture. Looking back we can pinpoint the occasion but doctors dismissed severity of my pain complaints. In fact I'm positive they knew as they ordered an MRI when in hospital with sepsis and c-Diff and pneumonia and then put me on pain pills til I went home.

Since then I've developed compression fractures in varying degrees from T5 through L4-5 with scoliosis due to bone loss and severe spondylosis (sp) and cauda equina syndrome. I've also been on dialysis 18 years, diabetes 20 years, neuropathy and more. Blessings

[Nanaedake in reply to KidneyCoach]

So, people can get sent home from A&E after a spinal fracture without being informed, treated or followed up in any way?

[KidneyCoach in reply to Nanaedake]

Not sure what A&E is but I was in the hospital with many other issues including being in isolation due to several infection risks. Blessings

[Nanaedake in reply to KidneyCoach]

A&E is Accident and Emergency, where you go for urgent care or the ambulance takes you.

[Sunseaandsand in reply to Nanaedake]

Yes, I was sent home from A&E last January with a new fracture in T9, I was in excrtiating pain and could barely speak let alone move.

The radiologist said there were no new fractures it was wear and tear!!!

When the x ray was looked at again by a different radiologist they cofirmed I had a new fracture.

In fact all 4 of my fractures were initially mis diagnosed.

If you would like to hear about them also thenI would be happy to tell you.

[Nanaedake in reply to Sunseaandsand]

That's terrible, what did they tell you the pain was then? Also, did it affect your breathing? What did you do when they sent you home in pain? Did you visit your doctor after and what did your doctor say? Also, what was the explanation that the radiologist could not interpret the X-ray?

[Sunseaandsand in reply to Nanaedake]

I was seen in A &E by a doctor who had an x ray done of my spine.

He could see my previous fractures and compared my xray to previous ones he said that T9 did not look right so had the Radiologist look at it because in his own words they are the experts!!

The radiologist said it was not a new fracture just degenerative change.

I myself having had 3 previous fractures knew that this was not right.

The doctor felt the same but because he was not a radiologist he could not argue the fact.

He could see the pain I was in for himself.

His hands were tied, he advised me to contact the pain managment clinic the next morning as it was a Sunday at the time.

He was not happy sending me away but said there was nothing he could do.

The next day my husband contacted the doctor who pescribed opiod pain medication.

The medication had been put in place with my gp previously by the pain clinic in case I had further fractures and was in need of it

This had been put in place owing to the fact I had been misdiagnosed in the past and was also suffering with chronic pain.

I knew from the pain that it was another fracture and requested an opinion of the bone specialist who confirmed it was another fracture. Also the x-ray I had done was reported on by a different radiologist and they confirmed there was a new fracture!!

I did not get an explanation as to why the expert radiologist got it wrong.

When I let it be known that I no longer had faith in the radiologists reports I was told if I have xrays done in the future to ask for a particular person who they gave me a name for to look at the X-rays.

Previous to this I had a fracture 9 years ago and visited the surgery for 3 months being told it was muscle related pain I was not sent for an xray and when I had my Dexa scan which was after 3 and a half months in pain without medication it showed a fracture in T11.

In 2017 I was on holiday woke up and knew I had another fracture.

We travelled home and got appointment immediately with a lady GP she said it was muscle related pain and because I could not take ibuprofen there was not anything for my pain.

I could not walk and could barely move I was in agony.

My husband asked her to send me for an x ray and she initially refused I was in tears and asked how she was so sure I did not have another fracture , the only answer she gave me was she just knew.

I became angry and told her that I knew what it felt like to have fractures and I was not leaving until I had a form to go and have my spine x rayed, and that the bone clinic had told me if I suspect a fracture at any time then its important to have an x-ray.

She actually slapped the form onto the desk.

So I was Xrayed and was told no new fractures, yet again the Specialist at the bone clinic requested the x ray and confirmed yes there was not one but 2 new fractures L2 and L4 another Dexa scan was also done to check my bone density.

The wrong diagnosis of the fractures were all at the same hospital done with years in between each x-ray.

This has really affected me and find it extremely difficult to deal with.

Fifteen years ago when I had my first Dexa, I was told that I possibly had an old fracture in L5 and had I had a fall in the past which I had not.

I did have an episode of severe pain and had to be chair lifted from the home to hospital, was not xrayed and given medication for pain and sent home.

The pain lasted to some degree for about 2 month, and looking back this was probably my first fracture.

Hope this answers your questions.

I've found that for me it's made already very distressing times harder to bear.

[Nanaedake in reply to Sunseaandsand]

Yes, that really confirms my worst fears that staff in hospitals don't always read and interpret x rays correctly. And that a person cannot get adequate pain relief as a result.

[Fruitandnutcase in reply to Nanaedake]

Exactly, some years ago I went over on my ankle whilst carrying a heavy flower pot. Got last X-ray as the night shift was finishing - was told there was nothing wrong to go home!

Then about fifteen years ago I fell and sat on my wrist. Total agony, couldn’t even stand and was sick with the pain.

Young doctor was looking at my X-ray when his boss arrived and said ‘you’re peering, you shouldn’t be peering’ and to me ‘nothing is wrong with you, you can go home’. I whimpered ‘can I have a splint?’ Fortunately I was given one.

Turned out that months later when I was at my GP I was looking at my record on screen and low and behold there was a report - presumably from whoever looked over the x rays next day - saying that I had fractured my wrist. At first I thought I was looking at someone else’s record but nope, it was mine and the date of the report was when I sat on my wrist!

Your experiences are beyond belief Sunseaandsand - what a nightmare for you.

[KidneyCoach]

Here is how incompetent Radiologists can become I had both my kidneys taken out 13 years ago so I have no kidneys at all yet in a radiologist report done two years ago he talks about my kidneys in the report how wrong is that?

[Nanaedake in reply to KidneyCoach]

Oh dear. How did you query it.?

[KidneyCoach in reply to Nanaedake]

I was reviewing the report. I called radiology and told them about it. They dismissed me as a butter. What can you do? I moved on.

[Nanaedake in reply to KidneyCoach]

Butter might be better than nutter but either way not good being dismissed. Nice to have a bit of butter humour in a very gloomy depressing topic.