Newly diagnosed : Hi there . Not actually fully... - Bone Health

Bone Health

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Newly diagnosed

Looby60 profile image

Hi there .

Not actually fully diagnosed yet as waited 5 months for a dexa scan . Having said that I had MRI in hospital in March that showed 3 fractured vertebrae. Plus bulging discs . I haven’t had a fall at all . I bent to get something out of the oven back in November and got extreme shooting pains like electric shocks . A few months later I collapsed just walking and couldn’t move .

Have been unable to walk unaided without a Walker and cannot walk far .

2nd MRI scan in July revealed another vertebral fracture plus nodes plus bulging discs further up my spine .

Finally had dexa scan 12 august as my Dr pushed for it . Still not seen osteoporosis team or any consultants other than when I was hospitalised .

The Dexa Scan was awful by the fact that I was refused any assistance . Can anyone tell

Me is this normal please as I was shocked and upset by this . Not to mention the extra pain it caused me . Sorry this is so long winded .

11 Replies

Oh I’m so sorry to hear about all of your fractures, you must be in such pain. I imagine now you have had your scan you will hear from someone soon.I received my results along with the treatment plan via my hospitals MyChart. I also had blood tests to test for vitamin D levels, parathyroid levels, calcium levels and coeliac disease to rule out any other causes of osteoporosis. In my case it is a family history and my age - I’m 72. I rolled off the bed one night while I was thinking in going to the loo. The room was in total darkness so I didn’t even feel myself fall or know what happened other than as soon as I felt the pain I knew at once what I’d done. The most annoying thing was I didn’t even need to go to the loo and in fact I didn’t go until after I’d been to hospital, had my wrist straightened up and plastered.

So my MRI appointment came fairly quickly, this was just before the first lockdown, everything else happened quickly too, blood tests etc and then I got an appointment to meet with a fracture liaison nurse who was the person who started me on alendronic acid. The treatment plan was already been decided by some consultant I’ve had no contact with. I’m sure it was their regular treatment plan. I was booked to see the fracture liaison physiotherapist for a group class but then we went into lockdown so that didn’t happen - I had a phone consultation though which for me turned out to be really useful.

It would be worth pushing to see a physiotherapist who will advise on how to move etc and maybe even with an occupational therapist to help you with daily living.

I didn’t get much (any?) help at the DEXA, someone called me into the room, I went in, I lay down, the operator did the first part then out a big block under my legs, she did the second scan and then said goodbye! I didn’t have any spinal fractures though which probably made my experience totally different to yours.

As well as looking through this website you should have a look at the Royal Osteoporosis Society website, you will find a lot of useful information about all sorts of matters on there. Good luck, it is pretty horrible when you first get your diagnosis or I found that but I’ve got used to it now and hopefully you will too. It’s a horrible and as you are finding out often painful condition.

Good morning to you ( love the nickname by the way ) . Seems like we are all in this together in varying degrees . Can I ask how you get on with alendronic acid ? As yet I’m not taking it . I have a stomach issue and often difficulty swallowing pills . So this has put me off so far . I guess when I get results of Dexa I may have to rethink this .

walk21 profile image
walk21 in reply to Looby60

I believe that if you push for it you can get a soluble form to drink?

Looby60 profile image
Looby60 in reply to walk21

I’ve not heard of this . Must do a bit of research but as their reason for swallowing with glass water and sit up from what I have read is because of risk of oesophageal problems as well as stomach issue . I’m wondering how this works . Thank you I will see if I can find any information.

I didn’t get on with it. I found it very easy to take and didn’t have the gut issues that I thought were going to be the most likely side effects. I used to take it on a Sunday morning, set my phone timer for however long it was I must stand upright and we used to go for a walk then come home and cook breakfast.

Unfortunately I felt very ill the whole time I was taking it and stopped after a few months. I started off from being very low though, I had been quite ill before I broke my wrist - we think it was probably covid before it became widely known about. I had all the symptoms including altered taste and I don’t feel I had really recovered from that, then I broke my wrist, then got a horrid condition called CRPS when the cast came off so I think I started the AA when I was in a bad place.

So although I didn’t continue taking it I wouldn’t let my experiences put you off because I think a lot people seem to get on well with it.

You can have an annual infusion if you have difficulty swallowing or if you have pre-existing stomach issues. Or possibly I imagine if you can’t stand up straight. My friend has annual infusions because of gut problems and swallowing and she is fine with them.

You will obviously be able to speak to someone before you start it about the best form of it for you to take.

My goodness, you have been through the mill.

I had a lot of vertabral fractures last year and whilst I was recovering in my local cottage hospital, (needed care but not on an acute ward) I was taken by patient hospital transport for my Dexa scan in the large general hospital. The ambulance man pushed my wheelchair into the room, close to the very hard bed and after introducing me to the two radiographers, left.

These two women expected me to stand up without help and place my self on the bed. I asked if I could have something to hold and try to steady myself and was told to use the handles of the wheelchair!

When it became obvious there was no way I could manage to get my legs up and lie down myself, one reluctantly came over and roughly positioned me, I had to ask for a wedge to help ease some of the pain. I had to half turn for one of the scans and was holding on to the bed for dear life as the pain was so bad I thought I would fall off, again I was told to move myself into position with no help. I had scans on my lower arms as well, so the whole lot took some time.

Just when this was being finished the lovely ambulance man came back in and seeing my grey face and stiff limbs gently swung my legs around whilst helping me to sit up. He waited until my head stopped spinning before bringing the wheelchair close and carefully pushed/pulled me into it. By this time I was in tears from the pain, all the radiographers said was the doctor will get the report in 10 days.!

I have had Dexa scans before but never with such an uncaring attitude. Normally they are quick and efficient and generally painless. I was obviously taking up too much of their time.

The Oramorph came out as soon as I was back to the cottage hospital!!

Looby60 profile image
Looby60 in reply to bluebell99

Oh my goodness that sounds horrendous . Well I have just emailed off my complaint as I don’t want anyone else to go through this . Do you mind me asking how many fractures you had and how are you now ?

bluebell99 profile image
bluebell99 in reply to Looby60

Hi Looby60 I don't know the exact count of fractures as they are in my neck, thoracic and lumber regions and happened over the course of about 4 or 5 months. The first lot was lumber and was diagnosed by e-consult at first as pulled muscles! This was in the first lockdown of last year when nobody medical wanted to see or help anyone who didn't have covid.

In August after a referral from my GP, (who I had still yet to see), I was given an MRI but just for the lumber region, even though I was getting acute pain in other places.

My final vertabral collapse occurred as I tried to get out of an armchair early October. That was definitely thoracic with a bit of sacral as well. I was in an acute ward in the spinal unit for three weeks whilst docs decided what to do with me. My bones are too thin for rods and pins, and the wedges are too complete for kyphoplasty, although I do wonder if this would have been done if I was paying for it. Too late now anyway.

I had a full MRI and multiple fractures from top to bottom were confirmed, although I was never told how many.

The nursing was chaotic, packs of wipes, like baby wipes were heated up and given to me to wash myself! Of course sweat rashes and thrush abounded and I never felt really clean. How can you wipe below when the thoracic fractures prevent you moving your arms? Sometimes the nights and days were split up into 2 hours where they turned me over to prevent pressure sores, other nursing shifts did not bother.

Splinters from the fractures made me incontinent by pressing on the spinal cord and I had a catheter for over three months, now thankfully removed and systems working !!

I love the NHS and they often do a wonderful job, but for some nursing staff it is just that, a job, not a vocation.

The DEXA scan radiographers lack of interest and concern is a case in point.

Once I was transferred to the cottage hospital I was taught to stand and could walk three steps, although in acute pain. I will always be grateful for their care in treating my pain, thrush, rashes and gentle movement.

I think at 67 I was too old to bother with at the general hospital and indeed was told by the spinal unit they would not be continuing with my care.

Of course I realise that the pandemic was detrimental for a lot of people, including those who sadly died, but the care I should have had and didn't does not excuse poor nursing.

I am wheelchair bound most of the time, with the odd foray into the kitchen or bathroom using a zimmer frame. I cannot bend to get into or out of a car so we have bought a van with a lift so the wheelchair can go straight in.

Just to add, I still have not seen my GP!

Sorry for the ramble.

Good luck with your letter. X

Looby60 profile image
Looby60 in reply to bluebell99

That is absolutely appalling I am so sorry you have gone through this . There really is no excuse whatsoever regardless of pandemic/covid it’s just not acceptable. There but for the grace of god go I . My Gp who initially was hard to to see face to face as our medical centre was designated purely for covid vaccines at the time , had been very supportive since my first MRI and pushed for this second one ( which I had within 2 weeks of his request .when I went to him for my results and told him I hadn’t received dexa or spinal team appointments he kicked ass lol . Well I got back that day and phone call for me to have my scan 2 days later . Then i had a letter today to attend spinal team sept 2nd . I spoke to the patient experience team today re my complaint . It is going to a formal complaint. A case manager will call me over next couple of days . 30 days to investigate and then CEO will respond . I have to say I was impressed ( I only sent the email last night ) having saved it a bit in case I wanted to add more ( which I did ) .

Mine sounds quite trivial now in comparison and I am so so sorry you have been treated like this . ❤️

Looby60 profile image
Looby60 in reply to bluebell99

To refer to Zimmer frame . I found the one supplied was acceptable but decided I wanted something easier to manage . I got a brilliant one from Argos 4 wheels with handles and brakes on . Well

It’s a walker I guess as opposed to a Zimmer. Much more stable too .

The one good thing about your posting is that I find I am not alone - if you get an uncaring medic they can be XXXXXXs! That is why I started a website to help others in same situation aftercancers.com

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