I was diagnosed with Essential Thrombocythaemia ('ET') 2 years ago and am managing well with the Hydroxycarbamide, count has come right down to where they want it. I have just been diagnosed with Spondylitis and lumber fracture also Stenosis, I am waiting for a spinal operation to remove part of my spine to stop the nerves being pinched, I am in a lot of back pain and my legs are numb and I have lost sensations, i.e. don’t know when I need the loo etc. Just feeling a wee bit down at the moment. Lynn
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Hello again @LynnB, it’s great to read how you’re managing well with hydroxycarbamide. Especially good to learn that your blood counts are in the right place, I do hope you’ve celebrated this! It took mine ages to stabilise with Polycythaemia vera ('PV') and I began to wonder if they ever would, so it’s good your blood cells are behaving!
That back pain and numbness and its after-effects sounds so horrible though, I’m really sorry you’re going through that. No wonder you’re feeling down, I would too. Poor you with all that going on at once, I really feel for you.
I wonder if your specialists have recommended anything beyond painkillers for the back pain? Would anything like floating about in a swimming pool or float tank be helpful? And please feel no shame about any accidents from the numbness, but perhaps you’d like to talk with the Blood Cancer UK nurses about ways to manage that until after your operation? Their free number is 0808 2080 888.
I’d definitely also ask the doctors who are doing the spinal operation what they’d suggest about the pain and numbness side effects, as they could prescribe what you need.
Keep us posted please @LynnB, and I’ll look forward to other suggestions shared with you.
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The specialist has said the numbness should go when they remove the base of the spine and short out the vertebrae but he doesn’t think the pain will go 
I also had a complete shoulder replacement in April, from which I am recovering very well. I’ll keep you updated. Thanks
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Hello @LynnB, thank you for the update. No wonder you’re feeling a wee bit down; anyone would be. I’m glad the Hydroxycarbamide has your counts where they need to be, that’s one less thing to worry about at least.
The numbness and not knowing when you need the loo can, in some cases, need prompt medical attention - especially if either has come on recently or is changing. I’m going to reach out to our Blood Cancer UK nurses so they can advise further if need be, but if things feel like they’re getting worse before your operation, please don’t wait - contact your team or go to A&E straight away.
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you for your concern. I do know about going to A&E, my consultant discussed it with me, things haven’t changed since I saw him, it’s just a nuisance. My legs feel as if I have severe sunburn on them, can’t bear anything touching them, which is a pain as well
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