How often do you have a Dexascan done?

[SWGASickleCell16]

I'm having a dexascan done this week and the last one I had was 4 years ago. I've been taking my calcium with Vitamin D and looking forward to seeing improvements.

[Sheeniejay]

I was told every 3 years. I've been having them every three years. Last week, because I've been on treatment for osteopenia and osteoporosis for about 15 months, I asked my endocrinologist if I could have a DEXA scan, to reassure myself that Tibolone is effective (a metadata study showed that, in the first 12 months, bone density increases/improves by 7-12%, in the following 2 years, it levels out to about 4-6%). He said that, because bone development is so slow, we wouldn't really be able to see anything useful. I have heard this reason, for the length of time between scans, from other doctors so I'm not surprised. Good luck with the DEXA scan.

[SWGASickleCell16 in reply to Sheeniejay]

Thank you for the information!

[Sunseaandsand]

Scans are usually every 3 years.

Because of very low bone density and fractures I have them every 12 or 18 months.

I really do not want to burst your bubble and of course I do not know what your T scores were 4 years ago, but just takng vitamin D and Calcium will not be enough to increase bone density.

I really hope that your personal cicumstances are that your bone density has not decreased and at the very least stayed at what it was.

Let us know what your scores are when you have had your scan.

Wishing you all the best.

[SWGASickleCell16 in reply to Sunseaandsand]

I will definitely give an update. They didn't tell me my T Scores, but I'm going to ask this time. They just told me I have the bones of a 77 year old and I was 42 then. I have a blood disorder and massive bone loss is common with this health issue.

[Posy-White]

I thought it depended on treatment and need level?

I have had them every 5 years until I started to have problems. The last three three where closer June 17, March 19 & Aug 20.

Good Luck with the scan, if possible check that it is the same machine as last time. If you are still at the same hospital you should be offered the same machine, the machines differ very slightly so consultants request this to get the best picture of your bone changes.

Posy White

[Sunseaandsand in reply to Posy-White]

Hello Posy- White,

Wanted to ask a quick question about the pump up brace you use.

Is it for the lumbar spine?

I can not see anything that come's higher up the thoracic spine.

I am afraid owing to Covid-19 any help is short coming.

We are in a very high risk area, with too many cases and deaths in both local hospitals and also the teaching hospital I am under for my osteoporosis.

Going to hospital is now out of the question owing to having COPD and over inflated lungs.

I am now 2 weeks into the new fracture and can not find any relief.

Take care.

[Posy-White in reply to Sunseaandsand]

I would say it was aimed to give the maximum support to the lumbar area. The plate at the front ends under my breasts the back section rises about 4" higher. Unlike other braces there are no over arm straps. I'm not sure I could have managed this whilst the fratures where healing, if you know what I'm trying to say. It's only now that this is helping me supporting the damage in the lumbar area so that I can just focus on keeping myself more upright, holding my head up etc.

It is a Carboflex Airback LOS Back Support - I understand you can not buy them without medical sign off.

talarmade.com/products/cate...

I'm sorry you are not able to get any relief. I'll re look at any notes I made at the time in case there are other things that helped. In the mean time I can only send a gentle hug, not much help but peer good wish thoughts I 've found supportive!

Posy White

[Sunseaandsand in reply to Posy-White]

Thank you for replying, yes I know exactly what you mean by arm straps.

The braces are not the most comfortable of things to have to wear at the best of times.

You I am sure will understand, I just would like the feeling of being held up and held together by something soft yet supportive.

The consultant from the teaching hospital called me earlier as I had requested, he gave me the option of buying something to try myself or contacting my local hospital's orthotics dept he felt I was their responsibility!!!

The only thing they can suggest I try is a extra piece that can be attached to my lumbar brace, this would have to be moulded to the shape of my back which would mean a trip to the hospital, it was left that they will order one and I can go in a few months to have it fitted. ( They were against buying anything in case it did more damage than it did good.)

Honestly I give up.

There is so little help and so much ignorance around osteoporosis it is unbelievable.

It is now a matter of sink or swim with a cocktail of pain killers that have to knock me out to work.

I shall swim as I have done in the past but I do have to say with each added fracture I seem to be swimming against the current.

Thank you for the gentle hug your right the support from our peers is a great help.

On a last note my husband who is very handy at DIY has disapeared into the garage and been there a while now.

Perhaps he is making a suitable brace for me himself.

I have pleaded with him!!!

[Posy-White in reply to Sunseaandsand]

Hello again Sun sea and sand

Has your husband come out of the garage with a wonder brace??

All my braces have come from the hospital's orthotics team. The first two helped a bit but it was only because the physio sent me back for a review that I had this Carboflex Airback to try. Each brace has been an improvement on the support and therefore what I can do. This in terms of measurement may not be great i.e. I didn't throw away my crutches but I can all but for 5 seconds stand unaided with my hands away from my sides....... which is a big improvement when small steps are major goals of achievements.

Before I managed a brace I had some off the shelf neoprene fabric 2.5m x 28 cm I used it like a bandage from just below my waist to under arms, this helped a little. My husband wrapped me up and safety pined it in place, I 'm on the thin side so it was fairly easy to get round me! From the first night of first having this problem I described it as having 'lost my middle' I felt as if I had ribs and hips but the rest felt it had just disappeared! The neoprene just helped to "hold me together"

I hope you're able to find something that helps just to ease things.

Posy White x

[Sunseaandsand in reply to Posy-White]

Hello Posy- white,

It sounds like you are making good progress.

Baby steps, that is what it is about, and any progress is good progress.

As for myself it is a matter now of waiting for the fracture to heal to get past the acute pain.

How I will be then is another waiting game.

One fracture after another has and is taking it's toll, but getting past the acute pain is a bonus.

Afraid my husband was not able to make any type of brace for me.

Although a smile did appear when after asking him what he had been doing his reply was sorting through all his nuts and bolts.!!!

I was on crutches for almost 2 years before more fractures came along and the crutches were replaced with a wheelchair.

I now also have a power chair.

When I was given the crutches I was also given a walker but I found it impossible to use.

In between the crutches and the wheelchair I had 2 sticks with the hand rests on.

I have to say I found in some ways they were better than the crutches.

The crutches tend to put more strain on other areas than using the 2 sticks did.

I do not know if they would be suitable but you may want to give them a try.

One stick of course does help when getting up from seated positions, crutches I found to be difficult and of not much use with rising from a chair.

Forgive me if I have already told you and am repeating myself but I was told by the teaching hospital that the inflatable brace is too expensive nd not available on the NHS.

Orthotics at my local hospital had never heard of them.

We have not heard of shelf neoprene fabric before, I have just asked my husband and he says he thinks neoprene is a type of rubber so we are going to look into it.

I have to tell you I made an attempt to eat a bowl of rice yesterday evening!!

What a fiasco that was, bowl under chin, plastic spoon in hand, horrific pain but you know what, 1 hour later with cold rice everywhere I had done it.

Thing was had to have pain meds again straight after it.

Thanks for all your help, hopefully you will now be free of future fractures, my heart goes out to you when I think your position has been brought about by a drug that you had accepted in good faith as one to help you.

It can be hard at times but we have to stay strong, it is the only thing that really get's me through to keep on fighting. X

[Posy-White in reply to Sunseaandsand]

Hello Sun Sea and Sand

Sorry it took a little while to get back , a few off days. I'm sure by now you've found neoprene it's used for all sorts of things wetsuits, hand/wrist supports and you can get bands with velcro fastenings for backs. I had some fabric left from days of wetsuits repairs.

If/ when you get back to the dizzy heights of walking I found smart crutches by far the best for me especially outside on wet/damp surfaces (smartcrutch.com) But they are heavier than some crutche. I also using wheelchair super suspension shock absorbent cushions in all chairs –and sorbothane insoles. If your husband like science type things he'll have fun looking up the properties of sorbothane, invented in the UK but not available in sheet form over here but can be obtained in USA , I'd sit on a sheet of this in my wheelchair if I could get it ! - I couldn't walk on rough garden/pavement surfaces without feeling distress until I used the sorbothane insoles, then I could manage the pain it caused and with the Smart crutches I started to make progress.

I was very sorry to read your hospital would fund the inflatable brace as it is too expensive, mine is through the NHS. I'm not sure but I sometime get the feeling that I get a very good service because of how I got the fractures!! I have made according to the physio a recovery beyond expectations given the condition of my spine, mind you that is a clever way to encourage anyone to work harder at their excerises! But the Orthotics team also still cannot get over what I now can do so very happy to 'try things out' with me. I guess in many ways I'm very lucky to have such support.

I also, now please forgive, me but laughed at the rice eating, not at you but the memories that brought back ........ the been there and the hell of it all but the amazing feeling of "Yes, I did it" even if it did half kill you. It's not that long ago when laughing, hiccups and sneezing ended in tears. As you say 'we have to stay strong' small steps and time.

Best Wishes

Posy White

[Sunseaandsand in reply to Posy-White]

Hello once again,

I hope that you are feeling well today and not too low in mood.

I too have not been good which I tell myself is only to be expected taking everything into consideration.

We have had work planned from August on our rear garden which should have begun over 3 weeks ago.It is one of those projects that started off with just the paths and patio areas needing replacing owing to uneveness and then it turned into a complete relandscaping.

I love being outside always have done, it is where I am happiest. Because of the oseoporosis and what it has brought with it I got my husband on my side and we have planned the perfect garden.

We have now been let down badly as the landcape company have not been returning our emails or phone calls, now we have to find someone else to do the work much of which will not be able to be done in the winter months.

On top of this we have deposits on a garden room and workshop ( to be made yet) which we hope can be put on hold for a few months.

It had really dampened my spirits, my husband has lifted up and removed so many things that could have remained down.

Why do some tradesmen operate in this way?

Well enough of that!!, it will all be sorted by late spring next year and then I will be hoping for lovely weather to enjoy it.

It raised my interest when you mentioned wetsuit repairs as to whether you actually repaired them for others or used them for diving yourself?

Your use of diferent material to help you through such difficult times is amazing!!

We had not heard of sorbothane before bu after reading about hem I can uderstand the way in which they help. The smart crutches are also something we did not know about, it is such a pity things like this had not been recommended to me by the bone clinic.

Yes I thought it would make you laugh to read of my antics when eating the bowl of rice.

We have not disovered a way around this yet apart from either my husband feeding me (which I draw the line at) living on soup, or continuing to sweat and curse with the pain whilst covering myself with food.

Yes you guessed, I always did like to make a mess as a young child so I have gone for covering myself with food, whilst continuing to think of away around it.!!

I feel the support you have is fantastic regardless of what may be behind it.

Physio at my local hospital told me in 2018 after my T 9 fracture that they can not help in anyway. I have not seen them since.

It must be so encouraging for you, can I ask did your fractures happen all at the same time and where are they?

Were you hospitalised at all?

Well I shall leave this here for the time being, take care and continue to keep safe in these uncertain times.

[Posy-White in reply to Sunseaandsand]

Hello again Sun Sea and Sand,

I am sorry to read about your buliding /garden works going on hold, it is so distressing when such things happen. Have to tell your self it could be worse they could have started and leave you with a mud patch and no paths etc. etc. I hope you are able to make some progress with you plans, I too get great pleasure just being outside. I used to be very active hence the wetsuits living by the sea wetsuits extend the years access to the water, I have always been on the thin side and felt the cold.

Not sure if I've remembered correctly but do you have difficulties with food absorption? I do but I can eat bananas which mashed with rice was one of my easy eat dishes when I first had fractures.

I am pretty sure all the fractures happened at once. I felt very slightly under the weatherwhen I came home from work so instead of going back out to Yoga class had an early night. I woke at three in the morning in extreme pain, my husband was working away from home. It was a sorry boring story that took three months to sort out that I had spinal fracture; this included seeing private physio, calls to 111, endless GP calls and appointments and a visit to a private spinal consultant. Trying to get suitable pain management was hell, I passed out on three occassions. The local hospital would not except the connection between stopping Prolia and the fractures. It took a further 7 months to see a spinal surgeon, on the mainland I was given the impression that it was possible to make a good recovery get back to work etc. However I didn't and don't have enough spine left even using bone from both legs, the chances of a good outcome where put at less than 10%, told it was a life changing event and suggested physio my help to maximize what I have to stay mobile etc.

Long slow journey for both me and my husband, house adapted moved onto benefits from work and a good salary, Blue Badge wheelchair, etc. etc. Took about two years to start to come to terms, heeled party shoes and hiking boots to the Charity shop etc. Easy dress clothes, excepting helped to be dressed and bathed need I say more?

I try to be focused on what I have not what I've lost.

For anyone reading this new to OS I did have over 9 years with OS and prior to that 15 years with OP plus the medication Prolia did suit me I went in 5 years from mid OS range to mainly mid OP range just local hospital didn't realise the risk of just stopping Prolia with only a plan for 6 monthly blood test. However for peers like Sun Sea and Sand and I you'll also find lots of people on this site who do really well on great diets and bone building exercises. I am someone who inspite of being a member of ROS couldn't read their newsletter for 3-4 years because I felt it was full of stories about older people and fractures! (Don't think that is quite true just how I saw it!)

Posy White

[Sunseaandsand in reply to Posy-White]

Hi Posy- White,

I am also very thin and soon to feel the cold, this of course is made worse by not being very mobile.

I have not been told I have a problem with absorbing food yet I struggle to maintain my body weight even though I usually eat 3 good meals a day with one snack durng the morning.

I was diagnosed with motility dysfunction years ago and was told it would gradually become worse, I have a hiatus hernia.

My other biggest health problem next to osteoporosis is with my lungs.

I have never been a smoker or drank any form of alchohol but I have emphsmatic lungs, basically emphysema without the serious symptoms.

My symtoms are kept under control with inhalers. In the past I have had many chest infections and 2 bouts of pneumonia. Hence the importance to shield right now.

With my lungs being hyperinflated it leaves less room for the diaphram.and squashes the heart, the later I have always been told is nothing to worry about.

Iam sure now I have lost height with the fractures this is causing a big problem as now there is even less room.

Despite the Lung problems I made sure in between chest infections I lived my life how I wanted to, my wight would plummet but then I would rgain it when the infections cleared up.

I strongly believe my immunity was affected by some of the bone treaments I was receiving thus making me more susceptible to infections.

It must have been a terrible frightening experience for you when your fractures happened, and to be on your own as well.

At least when mine happen I know what is going on (even if incompetent radiologists do not)

I dofind ithard to believe that in these days we can be allowed to be left with fractures undiagnosed for 3 months, until reading of your experience I thought it only happened to me.

It is very sad to hear that you were given false hope regarding your recovery.

Yes the BHF charity have done very well out of my redundant clothing and footwear.

Even coats that are too heavy,have had to go too.

Although I draw the line at my handbags, they can hang from or sit next to me in my wheelchair.

They are not having them!!!

And what about the bonus of wearing pretty flat crocs when sat in my chair which will never wear out!!

One more thing you were wrong about the mud patches in the garden, my husband had decided to take up 2 stone circles and some of the paths , dismantle most of a pergola which was relatively new, and I could go on.

He has now had to move granite chippings from other areas to fill other areas in.

Bit depressing to look at actually.

The search is on for another garden lanscape company who can take on all we need doing.

At least my friendly squirell and falcon have not been put off.

This saga to cont:

Take care.

[dog45678 in reply to Sunseaandsand]

I see this is an old post. I hope things are looking better for you. You can find a lot of info on osteoporosis and drug free options website mybones.health/ They have a great private Facebook page too facebook.com/groups/mybones...

[SWGASickleCell16 in reply to Posy-White]

Thanks for the information! The first scan was done at a Women's Clinic and this time it will be done at the local hospital. I will know what to expect this time.

[HeronNS in reply to SWGASickleCell16]

One thing to note is there *may* be a discrepancy between the two results which is not related to any change in your bone density. Although they try to calibrate the machines so they are accurate, it seems every machine is different and so the most accurate comparison will be between DXA scans done on the same machine. I've even heard one should have the same technician but that seems a bit OTT!

[SWGASickleCell16 in reply to HeronNS]

Thanks for your insight.

[Met00]

In the UK it seems to depend where you live. Repeat scans can be anywhere between 2 and 5 years apart.

[SWGASickleCell16 in reply to Met00]

=) wish I lived in the UK. I'm a patient and patient advocate so I have been requesting the test I need for my health. I'm still learning alot.

[Met00 in reply to SWGASickleCell16]

There are pros and cons to the NHS, but on balance I think I'd rather have our system than one that depends on insurance/your ability to pay.

[milkwoman]

I’m in the US and based upon my insurance coverage, I get scanned every 2 years.

[SWGASickleCell16 in reply to milkwoman]

=) I have better insurance. I had great insurance when I worked for a private company working in Accounting then my health became debilitating so I resigned.

[SWGASickleCell16 in reply to milkwoman]

This will be my second one after the one done in 2016

[Hidden]

Good luck with result. I'm still waiting for mine from the 5 Nov....told me I could be waiting at least another month. When the rheumy knows I'm taking the tablets that protect they probably don't think it's urgent....little does he know I haven't taken anything only Vit D3, K2 and Adcal and Magnesium until I receive my result....why would I take a drug if everything is fine.