osteoporosis, Uncategorized

Silence and finding a voice

It has been a very long time since I wrote on this blog.  Looking at this site I see I have several drafts waiting for completion.  Why the silence?

 

In November of 2015 my mother became very ill and, after a month in hospital and nursing home, she died.  While I was helping look after her with my brothers and sisters I decided to stop taking my bisphosphonate, alendronic acid, as it was just one more thing to take into consideration in this chaotic time.  As the effects are very long lasting I figured it wouldn’t do me any harm.

 

While everyone around me was feeling upset and miserable I was feeling more cheerful every day.  I realised that I had sunk slowly into quite a severe depression while taking the alendronic acid, but, being a gradual shift, I hadn’t realised what was happening.  There is a tale that if you put a frog into room temperature water and gradually increase the temperature it won’t jump out and will end up being boiled to death.  That’s what was happening to me.  I do recollect standing outside my lovely new studio on a sunny summer day wondering why I wasn’t happy, but didn’t take the thought any further.

 

It took a full year off the drug to feel that I had regained my biochemical balance.  I can’t say I am happy all the time, but my moods are related to things that are happening to me, and my baseline is my usual rather annoying Pollyanna seeing the good in things.

 

The data on depression and bisphosphonates is very sparse.  I found a report of five people who had reported depression, and the consultant I now see for treatment discussions said she found some too.  That is important to her, as she can say it is a little reported but known reaction.  I have chatted to several people about depression and osteoporosis drugs, such as the guy who plastered my staircase ceiling, and he said “oh yes! I noticed my Dad couldn’t be bothered to make a cup of tea so I told him to stop taking the drugs.”   I suspect that the large drop out of people taking these drugs includes a lot of unreported mood change.

 

I had intended to do a PhD in this area, but felt so demotivated I deferred the place at University, and then changed to doing a part time MA in Fine Art, which felt like a manageable introduction back into doing things.  I’m now working on interpreting issues around bones and health in my art, and am starting on an animation of bone remodelling.  I still maintain my interest in the personal and social effects of an osteoprosis diagnosis, but am looking at matters from another direction.  I am pleased to report I am enjoying the course, though finding it difficult as someone whose previous education and work has always been in the social sciences, to understand the vocabulary and rhetoric of this area.

 

My intention is to use this site to discuss the issues in this area that interest me, so that I maintain a word picture of my researches as well as sculptures and other visual media as outcomes.

 

 

 

 

 

 

 

 

 

 

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Uncategorized

Fear of the tiger

If you are walking in a forest where you know there is a tiger, it is likely that every crunch of a twig or breath of wind makes you think the tiger is about to leap out of the undergrowth at you.  The birds and bugs and even a friend approaching along a path could cause you to panic. There are also other things that could cause you harm, you might twist your ankle on a loose rock, be bitten by a snake or stung by an insect, or even be turned on by someone you thought was a friend and stabbed.  Whatever the hazards your focus will be hoping to avoid the tiger.

The drug recommended as the first line prescription by the NHS  for osteoporosis is a bisphosphonate called alendronic acid.  This has a list of side effects so long and so appalling that many people refuse to take the drug when it is prescribed after diagnosis.  Starting to take alendronic acid (which my phone autocorrected to ‘ale demonic’ the first time I wrote it) I’ve been waiting to see which of these side-effects I was going to fall prey to.  For those of you lucky enough not to have read the list, they include spontaneous fracture of your thigh bone while you aren’t doing anything, to death of the bone in your jaw.  It doesn’t help that these drugs are also not curative, but just reduce the incidence of fracture,  possibly increase bone density but not necessarily in any way which correlates with bone strength, and also that there is no easy way as a patient to know whether they are working.

I was quite surprised not to have the very common digestive issues associated with taking alendronic acid.  I have a chronic digestive issues, and the osteoporosis is probably due to the malabsorption I have struggled with all my life.  I did get a few muscle cramps, but not  very severe or long-lasting.

While taking these pills I had to have further surgery on my wrist as one of the screws had come loose in the metal pinning my wrist together.  Just after that I slipped while having a shower and broke my ribs and damaged my shoulder.  That was excruciating and awkward to live with, and as the ribs have recovered the damage to the shoulder is becoming more apparent.

I also have issues with sensitivity to metal – I no longer even wear a gold wedding ring as it makes my arm ache.  I only wear textile, plastic or glass jewellery.  So, I thought the dull nagging nausea in my forearm might be a reaction to the metal used to hold my wrist bones in place while they healed.  If it needed to be removed that would have to wait a year for the bone to be fully healed.

I put up with the forearm discomfort, the thumb ligament that still doesn’t work so I can’t grip, and the shoulder pain and lack of mobility which makes sleeping intermittent and means I cannot drive.  I also put up with a feeling of having quite severe jet lag and not being very sure where my feet were.  I felt disassociated all the time, as if I had to work harder to figure out what was happening.  I got car sick almost immediately when being driven anywhere. I also felt very tired, and kept wishing days only had twenty hours in, as by five in the evening I could hardly move. This general malaise didn’t seem to be vanishing, and I was considering what it would be like to feel like this the rest of my life.

I mentioned to the GP that I was considering giving up the alendronic acid.  I have modified my diet (more apple peel, more onion, more citrus peel, less coffee ) to improve bone health, I have bought an excellent weighted vest, I had a private Vitamin D blood test to ensure my levels were optimal.  I use a posture coach (Lumo Lift) which reminds me to keep my back straight and encourages me to walk more. I can’t use the weighted vest yet as my shoulder hurts too much, but the data does seem very clear that adding weight close to the torso increases the work and so bone density of the spine in a way that is safe.  I do carry one of the flexible weights is a runner’s waist- bag occasionally to add work to my general movements.

Unfortunately many exercises are divided into – if you don’t have spinal fractures do this, but don’t do them if you do have spinal fractures.  I couldn’t get anyone to do the necessary scans to tell my whether I already have wedge fractures, and the research shows that many people with spinal fractures don’t know they have them.  So, safety is a very important aspect in managing the exercise.  I also can’t get up and down to the floor to do the effective back extension exercise at the moment so all these planned programmes are waiting for my shoulder to improve.

The doctor had  a quick look at my T -scores and said I shouldn’t stop – she suggested I ask the National Osteoporosis Society for advice and check out alternative drugs.  My chiropractor said he thought the once weekly pill would be unlikely to lead to such a steady state of side effect, and could it be something else?  It hadn’t crossed my mind to check alternatives as the alendronic acid was the tiger that had been looming in my mind.

I had changed a number of things over the last few months.  I used a different face cleanser as I cannot wring out a washcloth and needed something easier to remove.  I’d taken more pain killers.  I’d started using a conditioner on my hair.  All minor things unlikely to make such a  difference in my health.  I had also started taking the prescribed Calcium and Vitamin D supplement, AdCal.  In the past I have sometimes had to stop taking a particular type do calcium as the pills gave me migraines, but I’d never had any other negative effects.  SInce I’ve taken a calcium supplement every day for over thirty years ( if I skipped a day I got muscle cramps), I had always been super careful when formulations changed.  However, I just took these pills without question, giving the remainder of my usual pills to my sister.

I stopped taking the calcium.  Within three days I felt a lot better.  By the end of the week my head felt clear and I had regained a sense of precision in where my feet were.  By day ten the nausea in my forearm had receded.

I bought a different  Calcium and Vitamin D supplement.  Four hours after taking one I started to feel fuzzy again.   I stopped.  I bought another variety I used to use…tried one of those this morning.  I don’t yet know if I’ll get the fuzzy feeling but I did get a mild allergic reaction to something in the pills as my ears went bright red and itchy half an hour after taking it. In an ideal world I’d have placebo calcium supplements and not know what I was taking…but for the moment I’m just hoping that a fortnight without supplements won’t be stripping my bones further.  The pill I took without even thinking about it turned out to be the problem – my friend, not the tiger.

I filled in a Yellow Card- the notification system for reporting side effects.  I couldn’t find any record of these side effects being noted before.  It would be interesting if some of the terror of bisphosphonates was due to an interaction with calcium supplements or the formulation of the supplement in itself.  GP appointment is tomorrow.

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Uncategorized

keeping your back straight

I’ve been working hard to learn to move with my back straight.  I knew that forward bending was something to avoid –  small fractures in the front of the spine lead to more fractures– a cumulative process that is hard to stop once started.  I had thought it was ok to bend backwards, and have been doing this everyday as part of a modified balance exercise on the Wii.

I just found this diagram on the National Osteoporosis Foundation website: back straight

Looking through the ‘Yoga for Osteoporosis’ book by Loren Fishman and Ellen Saltonstall I see they don’t include poses with back bending.  They do have something called ‘Upward Bow’ (Urdhva dhansurasana) (p122) but is for prevention only.  The other poses come with three variations for those preventing osteoporosis, for those with osteopenia (at risk bones) and those who already have fragile bones.

If anyone has ever watched an infant get frustrated at being trapped in a car seat – I can empathise.

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Uncategorized

Co-Enzyme Q 10 and bisphosponates

So what is Co-enzyme Q 10 and why does it matter?  Reading the abstract on the impact of the drugs for treating osteoporosis I came across this lovely phrase “It has escaped notice that the pathway N-BPs block is central for the endogenous synthesis of coenzyme Q10, an integral enzyme of the mitochondrial respiratory chain and an important lipid-soluble antioxidant.”

The authors were suggesting that some of the awful side effects of the osteoporosis drugs, such as ” osteonecrosis of the jaw, musculoskeletal pain, and atypical fractures of long bones” could be associated with this disruption of these pathways, and supplementation of Co-enzyme Q10 and Vit E might prevent or reverse this effect.

I had noticed coenzyme Q 10 on supplement packets, and, rather amazingly, the general ‘women over 50’s’ basic supplement I bought yesterday has the stuff in.  I haven’t taken any general multivitamin/mineral supplements before, but had started as I was feeling so unwell following my wrist surgery.

It looks as if low co-enzyme Q-10 is implicated in neuromuscular and neurodegenerative diseases like Parkinsons, so getting low on that really doesn’t seem like a good idea.  A quick look didn’t bring up any research showing any increase or not in these diseases in people on osteoporosis medications, but that would be worth following up.

I don’t usually link through to Wikipedia, but they do have  a lot of information on Co-enzyme Q-10- most of which suggests that it doesn’t do much or turns out not to be in supplements that claim to have it.  Another area for a bit more research.  As far as food sources go – well, heart (ideally not fried)  seems to be the food with the highest concentration, but for those of us that don’t want to start eating that …then broccoli and spinach and avocado and olive oil do pretty well too.

So, another post that shows that I know very little…

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Uncategorized

Posture, posture, posture

yoga with Wii

The osteoporosis guides are full of exhortations to manage your posture to reduce your risk of fracture.  The aim is to prevent your back from curling forward (imagine cuddling a kitten/slouching on a sofa) as this increases the risk of spine fractures.  The spine is a series of stacked bones, and they get little fractures without people noticing, they crumble a little, form a wedge shape…and the wedge encourages curling forward, which increases the pressure and increases the fractures, and before you know it you are walking along unable to look at anything but the ground.

I’ve been teaching myself to put on my shoes with a straight back (don’t forget the neck!), but haven’t been able to figure out any way to cut my toenails without curving.  Maybe I’ll have to put up with lacquered toenails the rest of my life.  I got my nails cut by a nail salon person when I first broke my wrist as I could not do them myself, and the technician was so distressed at the idea of my just having my nails cut and no polish that I let her put polish on. Even though it was a nothing colour it was still weird, and I couldn’t open the very ancient pack of nail polish remover I had in the studio so it just wore off gradually over the next month.

A useful guide is to get a broomstick, place it along your spine, and learn to bend while keeping your vertebrae aligned with the pole.  At least it is a useful imaginary guide…it is actually really hard to tell what your back is doing in detail, and holding the pole top and bottom is difficult, especially with a fractured wrist.  Need a mirrored gym and a video camera and a physical therapist of my own.

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Ouch!  still haven’t figured out how to catch a sneeze ahead of it happening.  I’m supposed to support the small of my back or brace a hand against a thigh to reduce risk of fracture when sneezing…but my sneezes are unhelpful and they explode without enough warning.  Plus, of course, one should be grovelling for a tissue at the same time and not dropping whatever else is being carried and clenching (sorry) the pelvic floor muscles..

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I looked into devices to help one to develop and maintain a good posture.  Most of them are things you strap on and wear a measuring and notifying device in the small of your back.  The straps look awkward to manage and rather obvious, and most of the devices make an audible sound, so not good for discretion.  One US version allowed a sound or a vibration.

While I was looking at these I came across a device called Lumo Lift.  With the wonders of modern technology and delivery systems I found out about it the 23rd of December, and on the 24th I was presented with it as my (slightly early) christmas present by Bestbeloved.  It is very easy to use, very discrete, can be told what posture you are aiming at.  Two little taps in a new position tells the device that is what you are aiming at.  I sit straight at my desk on my Swopper chair but my back angle is slightly different from walking, and you can tell it to ‘coach’ you, where the thing buzzes whenever you go out of the desired posture, or just to monitor.  In the monitoring mode the thing gives five short buzzes if you have been out of the target posture for a length of time you can set for yourself.

An extra benefit is that it also tells you how many steps you have done.  I got an email this morning congratulating me on having walked the equivalent distance to swimming the English Channel over the past nine days.  It synchronises with your smart phone, which records the data.

The whole thing is tiny, discrete, and just clips onto your shirt or bra strap with a little magnet.  So far I am impressed with it as a way to remind me all the time to think about the shape of my back.  It measures what it calls ‘slouchy’ posture, and it is based on the angle of the device, so if my back was very straight but at an angle to the floor – as in the straight back bend I’m supposed to be learning, it would give a warning buzz.  What would be very useful would be to have two, one on the lower back and one on the upper, and for it to give a warning if the distance between these two reduced, because that would mean that the spine was curling.  I’ll write to the company and see if there is any way to do this.

I’ve already written to the company to see if the sensitivity can be altered.  While I am sitting, actively, on my lovely red Swopper stool, I register steps when I bounce…ok, I don’t bounce that vigorously a lot, but it is fun to do now and then.  The stool has made a considerable difference to my neck pain as well as keeping me moving the whole time I am at my desk, so I am very pleased with it. Fortunately I can still use the foot control of my sewing machine while on the stool, so for those of you that are envisaging a very wobbly unstable thing, it isn’t like that.  Stable with movement, like those animals on springs in children’s playgrounds.

We also retrieved the ancient Nintendo Wii from the attic and set it up in the living room.  Reducing the risk of falls is a big thing with osteoporosis, as even a hardly noticeable fall (even turning over in bed!) can lead to fractured bones.  I’ve been having fun on the balance games.  It is difficult to be sure what activities are safe to do- I’d like to do the hula hooping as it gets me out of breath and makes me laugh, but, while my back in straight the hip rotation must alter the angles of the vertebrae…until I can get a definitive answer I’ve banned that from my activities.   I’m surprised, with the numbers of people with osteoporosis and the use of the Wii with the elderly to reduce falls that I couldn’t get a list of which activities to avoid and modifications on others.  I’ll keep hunting.  Plenty of research papers available on the impact on balance and whether these balance activities equate to the tests used in other research, but no basic guide.  I wrote to the National Osteoporosis Society about one of the exercises they recommend that everyone else says not to do, but just got a (Facebook) message back saying I should phone.  I like the use of Facebook for generalisable advice as lots of people can learn from queries.

Enough sitting…January is the time for group challenges on my fused glass Facebook groups, so I’m off to do a Sgraffito drawing a day and a painting a day.  Started these to get myself out of the frit frolics I’ve been doing the last few months when I couldn’t handle sheet glass.  Still tricky, but getting my dexterity and strength back…frayed thumb tendon not fully recovered so opening jars still difficult, but making progress.

 

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Water hardness and foolish instructions

I’ve been looking at a lot of issues around medication, posture, exercise and the psychological impact of a diagnosis of osteoporosis. One of the reasons given for poor compliance with medication (people stop taking their pills when the doctors think they should carry on) is the difficulty in coping with the specified way they have to be taken.

Note -alendronic acid or Alendronate is the generic name for this drug, Fosamax is a brand name.

“Taking alendronic acid
It is important that you take alendronic acid in the correct way, as otherwise it can cause irritation and damage as it is swallowed:

Take the tablet/medicine first thing after getting up in the morning. Take it before you eat any food or have anything to drink other than water.
You must drink a large glassful of plain water (not mineral water) as you take your dose. If you are taking tablets, swallow the tablet whole – you must not chew, break, or crush alendronic acid tablets.
It is important that you take your dose while you are standing or sitting in an upright position.
Continue to sit or stand upright for 30 minutes after taking your dose – you must not lie down during this time.
Do not have anything to eat or drink (other than plain water) during the 30 minutes after taking a dose .”  http://www.patient.co.uk/medicine/alendronic-acid-for-osteoporosis-fosamax

You’ll see it says you need to drink “a large glass of water”  – I’ll discuss what this means to the manufacturer and what it means to individuals reading it later.  I want to focus on the phrase not mineral water”.  Now, I grew up in India, where drinking water was boiled and carefully stored, so maybe I think more about water quality than many.  I also had my first job in London, where the water tasted so bad all I drank were tomato cup-a-soup as that was the only think I found that would disguise the flavour.  This predates the ready availability of water filter jugs and bottled water.

I’m also the kind of person that want to know “why not”  and “why do you think that” whenever I hear an instruction.

So why not mineral water?  It turns out that calcium in the water affects the absorption of the drug.

Calcium in water is good for your heart and bone health, and hard water is one of the major sources of calcium for many people.  Water hardness is a sufficiently big component of calcium availability that it has been recommended that GP’s should know the water hardness in their areas http://www.sld.cu/galerias/pdf/sitios/rehabilitacion-bal/how_much_calcium_is_in_your_drinking_water.pdf  .  This same report said that the manufacturers of the pills didn’t know what effect the calcium had on bioavailability of the drug so wouldn’t give a recommendation on the maximum level.

So, don’t take these pills with mineral water as it will reduce the availability and absorption of the drug.  BUT- tap water varies a lot.  Mineral water varies a lot.  I checked the calcium level of my tap water using my suppliers on-line ‘enter your postcode’ service.  I have medium hard water.  I checked the calcium level of the bottled water I keep for trips (very cheap stuff from the supermarket).  That had about one-tenth the amount of calcium in it.  I’d be better off using the mineral water rather than the tap water to take my pill.

I’m not the only one that thinks this is ridiculous.  R.Pelligrini of Bologna University wrote

 “the aforementioned formulation of the package insert is practically a nonsense, owing to the well-known huge differences among waters, both tap and mineral,”http://paperity.org/p/10789431/which-water-for-alendronate-administration

The amount of calcium in water to take the pill with should be specified, then people can make an informed choice.  I discovered that I could get calcium testing kits from the local aquarium/pet fish supply shop for a few pence a time.  I got sent a water hardness test strip with a dishwasher I bought a few years ago.  It is not difficult or expensive to test your water hardness.  Bottles of water specify their mineral content. Deciding which water to use would be easy if one knew the calcium level that didn’t compromise absorption.

Why does this matter?  People could be reducing the effectiveness of their medication by following this ruling.  If they dislike the flavour of their tap water this will make the whole process even less pleasant and possibly reduce compliance.  It also makes it feel arbitrary and controlling – instructions without clarity, a “must” without a reason.  Add to that, if you research the issue it turns out to be nonsense.  What else might one go on to mistrust?

There is also the issue of safety.  I read a query sent to an online help desk for arthritis sufferers.  The questioner said they were about to travel and how could they safely take their alendronate in places where they didn’t know if the tap water was safe to drink.  The reply was  to say tap water was safe in most European countries (the traveller didn’t say where in the world they were planning to go).  I didn’t keep a reference to that question and answer, but it has stuck in my head.  Go ahead, die of dysentery, but don’t take your pill for a long standing, possibly eventually disabling, ailment with bottled water.  Now that is a ridiculous piece of health advice.

 

 

Apologies for the references being such long links in the middle of the text.  I used Google Blogger for years and found shaping my links very easy but WordPress is defeating me for some unknown reason.  I’ll keep working on improving my knowledge and skill.

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BMD, fracture, Krege, Nature, prediction

numbers, numbers….and the mysteries of the invisibility of spinal fractures

The last post looked at the scores on the scans.  These show how my bones compare to other women’s bones, both young and fit, and the same age and fit.  If everyone had great bones and never got osteoporosis, someone would still be the worst.  They don’t tell you anything about what the risk of fracture is by themselves.  I’d like to know if my spine already has the small wedge fractures that lead to dowager’s hump, but I can’t tell that from anything in the current data.

The hip figures are used in an easy to use calculator called FRAX, which you can use at this link sitehttp://www.shef.ac.uk/FRAX/.  You do need to have your hip bone mineral density to work this out.  Based on my score I have a very low risk of fracture in the next ten years, even if I add in the chronic malabsorption caused by my problems with gluten (family history of coeliac disease, don’t know if I have it or one of the other gluten sensitivities).    Action for me would be some general lifestyle advice about eating well, reducing risk of falls by tidying the house, changing style of shoes etc.   With that as the sole bit of data I’d probably stop skiing (which I hardly do anymore) and try to be a bit less chaotic around the house. I already wear very sensible lace-up shoes and never wander around in my socks.

Malabsorption problems like coeliac disease are important in considering bone health.  If you don’t absorb nutrients properly, eating well and exercising properly in the bone building years to thirty will not be as effective in giving you long lasting strong bones.  I had a quick look at some current trials on osteoporosis drugs currently recruiting in the UK, and they all  excluded subjects with malabsorption issues.

So, if the spinal figures are so much worse for me, how likely am I to have a future spinal fracture?  Hard to say…the simple figure says high risk, and that is why I am taking the drugs and trying to learn to move in a way which protects my spine.  One thing that even a small amount of reading tells me is that these spinal fractures are strange and odd things.  I’ll write about what happens shortly, but for the moment a piece of research on the importance of spine imaging for identifying vertebral fracture and for identifying people at high risk for fracture makes an interesting point.

” Among 947 subjects with morphometric vertebral fracture, 66 reported a history of vertebral fracture by questionnaire and 881 did not. Thus, 93% of subjects with a morphometric vertebral fracture were unaware of the fracture. Additionally, among a total of 84 subjects with a history of clinical vertebral fracture by questionnaire, 66 (79%) were found to have a vertebral fracture by morphometric analysis of radiographs, whereas 18 (21%) were found not to have a vertebral fracture.”

http://www.nature.com/bonekeyreports/2013/130904/bonekey2013138/full/bonekey2013138.html

Fracture risk prediction: importance of age, BMD and spine fracture status

John H Krege, Xiaohai Wan, Brian C Lentle, Claudie Berger, Lisa Langsetmo, Jonathan D Adachi, Jerilynn C Prior, Alan Tenenhouse, Jacques P Brown, Nancy Kreiger, Wojciech P Olszynski, Robert G Josse, David Goltzman & on behalf of the CaMos Research Group)

What this shows is that people often don’t know if they have any spinal fractures.  That seems odd, but the individual bones in the spine are held in place by the other vertebrae, the ribs, other bits of tissue, and you can have a lot of fractures and still wander around getting on with life.  If you have ever seen those people, usually elderly women, who are out doing their shopping but walking along with a very bent back so they can only see the ground, they probably have spinal fractures that are visibly disabling but don’t prevent them from getting about.

I would like to know if I had spinal fractures already.  I’ve had years of back problems caused by my extremely pronating feet (flat feet) which I didn’t start correcting until my thirties, and I have used a programme of new prescription orthotics every year since then, combined with very controlling shoes (I found Ariat riding boots excellent, as the stiffness in place for the stirrups held my heel on the orthotics very well) and chiropractors and massage therapists helping to keep me aligned.  For the last six years or so it hasn’t mattered what podiatrist I have been to, I still can’t get rid of the neck pain, and the last two massage therapists I saw left me in pain for weeks.  Something has clearly changed.

It’s not a simple matter to know what state your spine is in.  You need access to complex imaging equipment, expert assessment of the images, and someone in the health system who decides you need to know.  It’s not like deciding to have a dental check up.  It is, of course, completely unnecessary to know if any of my spinal vertebrae are already showing compression fractures, but I’d like to see how the treatment and lifestyle choices I make now affect my spine over the next few decades.  A baseline measure would be good.

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