[znabParticipant]

Hope everyone is in good spirits.
I was diagnosed in July 2022. I’m just coming to the end of my first cycle – started of well but after a week everyday has just been so different with some challenges.
When diagnosed I had an MRI that showed lesions on my sternum – it does cause me discomfort every now and then. I have received my spine brace, which goes up to my chin (my chin has to sit in the top of the one piece). Has anybody else had to wear one? How did you find it? I’m find it quite distressing and don’t want to wear it for 3 months. I’m sure it’ll get better, it’s just hard.
Thanks for reading.

[derbyshirelassParticipant]

Hello,
Hubby had to wear this type of brace for 3 months, as when diagnosed it was back in 2017 and his route was thro A & E, he had been going back and forward to gP with back and chest pain for several months, ( sadly this is the same old story for many ). One day his sternum just snapped and it was all systems go, 6 spinal fractures and a broken sternum later, 6 weeks in hospital trips back and forth to Stanmore ( we are in Wales ) to have this brace made and fitted.
He has lost 5 inches in height , but leads a near normal life, or as we say the new normal.
After about a week in the brace it became bearable, although very hot. The main thing it WORKED and stopped his head from going any further forward, he got around ok in it, and I was ok and doing up the straps etc.
Tips; are t shirts under it and loose fitting baggy shirts over it and body warmer type garments help in making it look a bit less noticable. Hope this helps and try to be positive it really do’s help. If you have any other queries please ask. All the very best.
Ann

[znabParticipant]

Dear Ann,

Thank you for your message – I hope that he is doing well 🙂
Today has been a bit better and the doctor did say that it would take a couple of weeks to get used to. Messages like yours give me hope so thank you.

Wishing you both all the best x

[znabParticipant]

A quick question Ann… how was he getting in and out of a car? My brother took me to Stanmore for the fitting. He drives a VW but I couldn’t get into his car with the brace on! It was quite traumatic for me 🙁
A nurse tried to help but I ended up removing the brace to go home.
Thanks

• This reply was modified 2 years, 3 months ago by  znab.

[derbyshirelassParticipant]

Hello, Glad to hear that you have had a better day,Hubby like you are finding could not get in a car with the brace on,and because of the sternum and spinal fractures coulnt bend anyway, so we where very lucky to have an amazing patient transport service here in west wales who arranged an ambulance from the equally amazing red cross to take us to Stanmore and other appointments in hospitals like Swansea and Cardiff. This meant that he could either go up on the ramp or climb a few steps and then travel on the “bed” with the back raised. When he had clinic appointments approx 20 miles away for chemo etc a normal mini bus type transport was arranged thro the hospital, perhaps it is something you could look into try your nurse for details. Hubby is doing very well thank you for asking had a SCT in 2018 and had a relapse at the back end of 2021 then started on DVD and is now on just the Daralex monthly jab and dex.
Everything crossed he is keeping well at the start of DVD light chains 500 now under 2. When diagnosed in 2017 lights chains at 2700 and again they got down to 0. He keeps active and apart from aches from how the fractures have left the shape of his neck enjoys life to the full and remains very positive. All the best and again anything we can help with just ask, we are all in this together. Best wishes Ann

[znabParticipant]

Thank you Ann.
I’m going for a refit as it’s very uncomfortable, I can’t sit in it and don’t want to spend my whole day standing 😀

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