[gettingfatterParticipant]

Hi all

I was diagnosed with stage 3 MM 18 months ago, had a PET CT scan at the beginning which showed a horror story including fractures, so it didn’t look good but I’ve been on a Mac 9 b trials which includes lenolinomide, Dex, Dara etc, which I’m going to be on for another 15 months. I went to through a transplant in March/April this year which took me into remission (if there is such a thing with Myeloma) so not so bad BUT my big issue is my back which after a recent MRI seems to show more fractures, I was offered a cement based operation which I’m told will not staighten me up but may take care of some pain. Does anybody have experience of this kind of op ?

Also- Myeloma back brace: has anybody had this fitted and did it work ?
Thanks Allan

[paulpixParticipant]

Hi Allan

I have no experience of the operation but I did have a back brace, I had to wear it for a year but since then I’ve been fine (luckily)

It will depend on where the problem is with your spine as to how it is fitted, but for me I had to lay on my back whilst my wife slid it under me and it was secured at the front with velcro and straps that clipped either over the shoulders or under the armpits, again depending on how it needs to sit on the body. Once it was secured I could sit up and move around with no problems at all.

Hope that makes sense but by all means let me know if you need more info

Best of luck with everything

Paul

[gettingfatterParticipant]

Hi Paul

That’s very helpful, I’ve got a feeling the operation isn’t for me as it doesn’t seem to have an effect on posture, which is my issue.
I’m seeing the docs at the clinic in a couple of weeks, I will push for the brace option.
Thanks Allan

[MikejanulewiczParticipant]

Hi Paul,

I think you are absolutely correct. The cement is to relieve acute episodes of pain and has no effect on posture. I was also told that putting cement in to strengthen one vertebra will put more strain on the vertebra above and below- it makes sense!
I had my first vertebral collapse at diagnosis 7 years ago and now have 10.
My wife says my posture is much better- just with time. But I’m getting shorter! On average 1cm each vertebral collapse.

Hope this gives you some information.

Kind regards and keep as well as possible.

Mike

[gettingfatterParticipant]

Hi Mike
Appreciate the info, I’m now convinced the cement operation is a no go – I am going to ask for a back board and I’m staying physio soon. Hopefully this will do something for the posture.

Thanks Allan

[raptorParticipant]

Hi, this maybe too late but just in case. My wife was diagnosed with Myeloma at 46 and had some 6 fractures in her back ( this was after going to the doctor / hospital 6 times over 8 months complaining of severe back ache) You underwent 2 ‘cement’ back operations as only 2 fractures can be done at a time this was a day surgery in St Thomas Tooting. These proved very beneficial but as stated I cannot state re the posture as this was not an issue.

[val72Participant]

I had 3 fractured vertebrae and was in a lot of pain on first diagnosis. I had an allergic reaction to the sedative when they tried to do a vertebroplasty without an anaesthetic, so had to wait for a general anaesthetic. 2 of the fractures had compressed too much to inject the cement, but the third one was ok. All three give me very little pain now, though I do still need local anaesthetic patches (from the GP) on my shoulder blades. For me, the op was worth it, but everyone is different. I haven’t had a brace and the GP suggested very gentle physio for posture, which I haven’t actually needed.
Like one of the other posts, I have lost height, but that is a small price to pay for less pain.
Hope it works out for you.

[Author]

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