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Neuro spine surgeon appointment this afternoon

AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
I so hope it isn't more bad news. I've been told that after reviewing my MRI's the pain management consultant wants the spine consultant to review the lumbar and neck MRIs, so not sure what pain consultant has seen on them. Hopefully it will be ok because I can't mentally cope with any more bad health news.
 
Thinking of you and sending you best wish's
 
Fingers and toes crossed for you @AJLang
Really hope it's positive news this time.
 
Good luck. Keep us updated.
Sending you love and good vibes
 
Let us know how you get on Amanda
 
Thank you everyone. Apologies about the following not being very well written.
C5/c6 spinal stenosis with (spinal) cord flattening
Words cannot say how we feel after today’s neuro spine surgeon appointment. Much worse news than we expected. I said no to neuro surgery twice - the consultant has given me up to 12 months to contact him to consider changing my mind and discuss it. I don’t need to go back through the system if I want to see him in the next year about surgery. I can’t even cope at the moment with explaining how awful the surgery is and the risks. He also said that neuropathy results were severe and that my carpal tunnel that was operated on 25 years ago has come back. Both neuro spine damage at the cervical neck and the neuropathy both probably causing paralysis and other symptoms and progressive. Nothing can be improved from how it is. Surgery would involve going in through the neck to the spinal cord. Several severe risks of the surgery including paraplegia. I was in tears by the time he’d told us everything
 
Oh I’m so sorry you’ve had more bad news
 
So sorry to hear the devastating news,
 
My goodness I am sorry to hear your news. I worked in neurosurgery for many years before my retirement. I am sorry they have given you such bad news.
 
I’m so sorry to hear that @AJLang I don’t know what to say. I do understand why you refused the surgery though. It doesn’t matter what anyone else says. You must always do what’s right for you and what you want to do.

Totally inadequate advice in the circumstances, but all I’d say is to give yourself time to take on board everything you were told. Sometimes bad news can’t be looked at directly and taken in all at once. You need to ‘put it away’ and keep taking brief looks at it, short snapshots of one angle rather than contemplating the whole thing. I know that won’t make things better but it can help you assimilate the situation.

I don’t know what practical help you can get. Is there a possibility of talking with anyone who has a similar experience (when you’re ready)?

Anyway, for now just sending you love and my sympathy for the rubbish hand you’ve been dealt.
 
Oh Amanda, I am gutted for you! Life can be unbelievably unfair to some people but you really have more bad luck health wise than any one person should have to deal with.
I can totally understand your gut instinct being to refuse the surgery considering the risks and that may well be the right decision but as @Inka says, it might be wise to revisit it from time to time after the initial shock has eased a bit. No doubt this is why the consultant has left the door open for you, which I think is really helpful.
It seems so trivial but sending heartfelt (((HUGS)))
 
I am so sorry to hear about the diagnosis. Really not what you wanted to hear. I can't even begin to imagine how you feel but my heart goes out to you. Whatever the eventual outcome know that you have the support of people who care and respect your decisions for your future healthcare. :care:
 
I'm so incredibly sorry, Amanda. I can’t even imagine how overwhelming and heartbreaking this must be for you. It’s completely understandable that you’re struggling to process everything right now - this is difficult news, and no one could just take it in all at once.

Please be gentle with yourself. You don’t have to have all the answers or make any decisions right away. It makes sense that you said no for now, especially with the risks involved. And it’s good that the consultant has given you time so you don’t have to rush into anything while you’re still trying to come to terms with it all.

I wish I had something more useful to say, but for now, just know that you are not alone. There are people here who care, who will listen, and who will sit with you through this, however you need us to. Sending you love and strength. <3
 
Big hugs from me Amanda.
So sorry to read your news.
 
Sending (((hugs))), Amanda. So sorry to hear your news.
 
Very sorry to hear your news. :(
 
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