Hi again ! I had a letter from the hospital with the results of the scan today and I don't understand half of it ! I Googled it but I still don't understand! The T -Score is -2.5 and the Z-Score is 0-.8 These are for Scan Type AP Spine.
DualFemur :Neck Mean is T-Score is -3.0 Z-Score-1.4
There is another line which says that I am Osteoporotic and need medication. Another strange thing is that it says L1 fracture seen on lateral scan . No other obvious fracture's identified on LVA.When I had the Xray on my spine a few month's ago it showed 2 wedge fracture's and when I had the DEXA the Radiographer said that there were 2 fracture's and the next 2 vertebrae were showing white and were in danger of fracturing. I don't understand what is going on....as usual with our hospital ! Can anybody help me please ? One of the Dr.s rang me today but it was about new antidepressants! I did speak to her about my hernia so she is going to speak to the Surgical team at the hospital. I just hope that my usual Dr. doesn't overrule her which he has done before!
I hope that all of you lovely people manage to get some sleep. Sending you all love and gentle hugs. Danni xxx
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I can’t comment on it in detail but the T-scores are the bone density ones anything greater than -2.5 is osteoporosis ie the duelfemur at -3.0 is osteoporosis. The z score I think is your fracture risk but I am no expert just have osteoporosis and have had my fair share of dexa scans and unfortunately fractures. I am now on the Zoledronic acid infusions and in a year my spine has gone down to -2.3 so osteopenia but my hips are still -3.3 but I get two more infusions so I’m hopeful. I the osteoporosis website does explain some of the t and z scores I think I will try to find it for you. Hope you are ok try not to worry it will be ok knowing things doesn’t change anything it’s how you feel that matters just take it steady and any questions shout. I broke the neck of my femur and I’ve also broken all my ribs on both sides in multiple places and I’m 35 xx
Oh my goodness how unearth do you cope with the pain? I have five back fractures, wedge and compression, rib fractures and pelvic fracture and am struggling with the pain and movement. I've lost a lot of my balance, three inches in height and the worst pain is around my torso. Any suggestions on your pain management regime? Did you have many side effects from the infusions may I ask? Best wishes to you and i hope you are healing and have a good medical team onboard to help you. Take care.
I unfortunately do not tolerate pain medication well so I can only take paracetamol which doesn’t do much. I had an intercostal nerve block for the ribs but that was awful I ended up in a&e having full body convoltions it was awful. I’ve tried morphine codeine etc but they make me sick I’ve tried nerve pain meds but I react to anything serotonin based so unfortunately I’m not much help pain relief wise. Diazepam helps with the spasms and sleep I have 2mg in the mid morning and 2mg at bedtime.
The infusions do have side effects I was sick for two weeks like an awful flu and you get horrible bone pain even my tail bone hurt but that just means the medication is getting to the right areas and does wear off after a couple of weeks. I can’t take the tablet medication due to other bowel conditions so that’s why I have the infusion.
I have had osteoporosis since 2015 but refused medication due to fear of side effects but after all the fractures and pain I wish I had the infusions years ago. I had my first October 2021 next one is due November this year and I’m looking forward to it now I know how much it helped my spine!!!
Everyone says supplement calcium and vit D however I have mine tested regularly and are always well within the healthy range so I do not supplement.
I’ve built up my walking and try to always have two walks a day to help strengthen the bones and my back. However I also have endometriosis so I’ve been through a lot of surgeries for that recently and a total hysterectomy this year so I have to be extra careful but hoping the hrt helps my bones Also as I did have both ovaries removed too in April so at 35 it’s scary but happy the infusions help. I would recommend based on my experience xx good luck and you are lucky if you can have pain meds it’s been very hard surviving without anything xx
Hi! I can't believe what you have been through because i have had some of your illnesses. I had Endometriosis badly when i was 26 although the Gynaecologist I saw in Aberdeen thought that it started when I first started period's. He was wonderful but unfortunately the Endo was too widespread but he did the hysterectomy in stages because I was so young so, HRT and final Oopherectomy at 34 and then HRT for 16 year's till I had a Mammogram and they found that the vein's in my breasts had crystallised so I had to stop straightaway . Please make sure that you always go for your Mammogram's. Instant menopause! I was diagnosed with Osteoporosis in January although I had felt the big lump on my spine a year last January. I take Vitamin D and have just been given a Seratonin antidepressant called Duloxetine which i seem to be tolerating after 4 week's. The first 3 were pretty awful. I do have low Seratonin.
Not getting any help or advice from my Dr. or anybody here has been really demoralising but thank goodness for this Forum because people here have helped me so much. Take care. xx
it sounds like you have been through a lot yourself and I’m glad the duloxetine is helping you I did try that one but it gave me a really rapid heartbeat and crazy anxiety……so unfair how anxiety medication makes me anxious it makes zero sense! However I am more open to trying things as paracetamol is useless but it’s all I’ve been able by o tolerate through all my fractures and surgeries I am waiting to see a new specialist in London as they think I have sphincter of oddi dysfunction or some endo has been missed because of the pain I have is all in my diaphragm area and upper right quadrant. We never seem to have one chronic illness I seem to pick up more along the way but at 35 I hope this is coming to the end of my battles.
Do they do mammograms for younger people who have had hysterectomies as I’ve not been told anything about them. My mum has just found 3 lumps in her breast and they have said the very large one is 75% breast cancer but hoping the others are not then it hasn’t spread but it also means that’s now in my family so I will be at risk.
I do think the infusions have helped me though and as much as I’m dreading the initial side effects I do want the next one because my main fear is the bones. My rib fractures paralysed me I couldn’t leave the house for almost 8months it gives me nightmares now remembering it as it was all during lockdown so I was given very little help from doctors just passed off with morphine which I couldn’t take.
This forum has helped me a lot too because I know everyone’s experience is different however I do feel we can always learn something and even just the support means a lot to know we are not alone.
Thank you for your kindness I see my rheumatologist next week to discuss my next infusion and unfortunately my hrt has destroyed my leg circulation they now turn purple with white spots if I stand for long enough to make a sandwich. I’ve tried everything but I’m slightly worried about blood clots given the hrt.
My first zolendronic infusion caused the same side effects, a routine domicilliary care phlebotomist came 2 days after for routine and usual blood tests, (I could not leave the house) and it was nearly a week later it was discovered the infusion had stripped my calcium levels.
Fortunately within a few days more I felt a lot better but it was pretty frightening at the time. I write this not to put you off but to say I had my second zolendronic infusion a year later and apart from a slight headache and a bit achy for a couple of days I was absolutely fine.
I was able to get out of bed, shower and dress, (with my hubbies help of course) as is usual, but not really anything particularly out of the ordinary.
Everyone was against me having it, but it was that or Prolia, (no thanks) or teriparatide daily injections, (not ready for that yet) but I made sure this time I drank plenty of water before and after, optimised my calcium levels and asked the clinic to slow the infusion down, double from 15-20 mins to 30-40 mins. They were happy to oblige so no problem. I think this all helped and I am happy to have my next infusion when it is due.
I also have a very good dental surgery, (NHS!) and they look after my teeth every fourth months, a thorough inspection and clean, so no jaw problems.
There are side effects from all the osteoporosis medications, gastritis meant I could not take the oral ones, it is hard taking a medication that you know will affect you in the short time but give such good benefit to the long term. My spinal fractures have healed, allbeit in a crooked way and I do feel my back is much stronger.
thank you soooo much for that reply as my next one is due soon and I am worried about the initial impact however now you have said that it makes total sense. My infusion was done slowly over an hour and a quarter so I’m happy about that side of things. Did you supplement with calcium post infusion? If so what did you take just so many supplements have added ingredients that upset me.
Im the same ie the osteoporosis tablets I have crohns and my stomach is like a war zone with bile reflux from my gallbladder removal on top so tablets were always a no go. I haven’t had problems with my jaw but I have noticed my teeth are a lot weaker and now have receding gums but I will suck that up to save my bones as we all know how much fractures hurt.
Thank you again I wasn’t warned about the side effects post infusion except mild flu for a day or so but mine did go on for weeks plus with my bowel issues the infusion has mannitol in it which is a laxative so that didn’t help me either but it’s short term pain for the longterm gain of stronger bones xx
I am prescribed Adcal which does make my reflux worse, (I also have no gallbladder) and usually I do not take it because of that. However, after the first infusion side effects, I thought I had better take them, which I did for about six weeks before and about a month after the second infusion. I made sure I had some bland dry biscuits, (unless instructed otherwise, always have a little food). I also bought the D3 g soft gels 2000iu, taking them over the same couple of months, which helps the calcium, just to make sure. You know your own body better than anyone so it is a bit of trial and error.
Are you able to take Immodium short term to help the bowel issues?
I too had receeding gums and loose teeth but after thorough cleansing by the dentist over two years, he is amazed and pleased that they both have improved. (I do clean my teeth regularly but perhaps not for long enough time as bending over the sink gives me spasms). It is so important to have a good dentist and he understood my fears of jaw disease. Perhaps persevere and explain your concerns over your gums, it can be helped, I am a good example!
Good luck with your next infusion, you will be more prepared mentally and physically.
T-scores compare your bone density to an average 30 year old, so estimate how much bone density you've lost since that age. Anything worse than -2.5 is considered osteoporosis, so both your scores are in the osteoporosis range. Z-scores compare your bone density to average for your age, and the NHS website says Z-scores worse than -2.0 are considered lower than they should be for someone your age, so your bone density is within the normal range for age. I think you need to talk to your doctor or consultant about the different versions of how many fractures you've had, but the main concern is that you've had one or more fragility fractures, which means you're likely to be at high risk of future fracture. I personally think that's far more relevant than bone density, because some people with apparently awful bone density never fracture, while others with normal bone density fracture much too easily. What's really important going forward is to find and treat the underlying cause for your loss of bone density and fractures. Make sure you have a blood test for Vitamin D, calcium and parathyroid (all in the same blood draw), as well as coeliac, thyroid and a full blood count.
Hi . Thank you so much. You and other's on this site have given me more information than any medic's where I live . I get so angry with them because they just don't care and I'm not the only one who feels like that and we are all saying we feel as though we are , medically, on our own and we have to fight for everything. It's exhausting. The Radiographer who did the DEXA saw 2 fracture's and i had been told with the first Xray that there are 2 wedge fracture's and you can see and feel a big hard lump and the pain is now going up from the fracture's where the Radiographer said the next 2 bones were very thin . I know that Osteoporosis doesn't cause pain but there are flakes of bone coming off the fracture's and I was told that it is ' probably ' nerve damage ' but I haven't seen a Specialist at all . It says on the form that I definitely have Osteoporosis and need bone meds but the Dr. says that the Osteoporosis medication will affect my ' massive
hernia ' and he doesn't want me to take them !
I will write down what you have said so that I know what to ask the Dr. I get the feeling that he is fed up with me but I do try not to bother him. Our friend's and family can't believe how I have been neglected since before the lung cancer !
Have to go and sleep for a while but will write again later ! I'm exhausted today. Take care and I really hope that you are not feeling too bad today. xxx
We have a factsheet that explains all about the T scores and Z scores.
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I am waiting to see a new specialist in London as they think I have sphincter of oddi dysfunction or some endo has been missed because of the pain I have is all in my diaphragm area and upper right quadrant. We never seem to have one chronic illness I seem to pick up more along the way but at 35 I hope this is coming to the end of my battles.
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