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I couldn’t move my legs for an hour

Unfortunately it’s not good news for me.
I’ve got my MRI results. Mark knows the results and my three closest friends but I don’t know how to tell my niece or Mark’s parents so will be keeping quiet for the moment. Neck/cervical MRI critical results section was marked as “significant” and they want me to see a neck surgeon promptly” re cervical myelopathy other scans also had problems eg mild cerebral volume loss but nothing critical.
Fortunately the appointment with the NHS neck consultant is today but the thought of him potentially suggesting neuro surgery on my spinal cord is beyond my comprehension. Anyhow the results of the three MRI scans plus the neuropathy confirmation last month explain virtually all of my weird symptoms that the neurologist had been trying to figure out.
I’m feeling tough today. Did lots of proper reading eg NHS sources etc in the early hours. If I’m considered fit enough almost certainly neuro surgery with risks of paralysis etc and long and painful recovery. Without surgery the outcome is almost certainly complete paralysis (or worse). Surgery won’t improve anything already wrong with me but surgery will hopefully slow progression. As things have been steadily progressing and worsening over the past 12-18 months would be surprising if the surgeon this afternoon doesn’t recommend surgery. At least I’m prepared for what he could say
 
Oh Amanda! That must be really scary! I am so sorry! At least there is (hopefully) the option of surgery though and they won't do that unless the benefits significantly outweigh the risks. I hope you get a consultant who inspires confidence in you and gives you the courage to go through with it if surgery is the recommended course of action. Sending gentle (((HUGS))). Please update us later if you feel able. Will be thinking of you. X
 
Oh gosh, I'm so sorry to hear what you’re going through. I can’t imagine how overwhelming this must feel for you, especially with such a serious decision potentially ahead. You've informed yourself on what you can expect, so you'll know what to ask, but I know that doesn’t make the reality of it any easier. I hope your appointment today goes as smoothly as possible and that the surgeon provides you with reassurance and a clear plan forward. Please don’t hesitate to lean on those around you—including folk here—whenever you need to. You’re not alone in this. Sending you lots of love, strength, and the biggest virtual hug. <3
 
Sorry to hear your news Amanda. Wishing you the best outcome possible after your surgery xx
 
Thank you everyone. The spinal consultant I saw today was a neurosurgeon. Yes there are problems but he isn’t recommending surgery as he doesn’t think they’ve progressed to the spinal cord. This is subject to him looking at the actual MRI scans which will be forwarded to him. He is also referring me for nerve conductions tests on my arms as he thinks some of my problems are probably neurological. I have another appointment with the neurosurgeon at the end of March so will hopefully have more concrete answers.
 
Thanks for the update Amanda. At least you have a bit of breathing space from having to make any immediate serious decisions although it seems slightly odd that a consultant would make a provisional assessment without having the scans in front of him. Hope they can find something that negates the need for drastic action but gives you some ease. I know that is probably a big ask, but optimism costs nothing. Sending more (((HUGS))). X
 
It's good to hear that they are keeping your options open pending more tests and reviews. I am glad you have family and friends to support you while you are going through such a difficult time. Keeping my fingers crossed for you and sending a virtual hug x
 
Good to hear that they are continuing to follow up Amanda, and thanks for the update.
 
I’m sorry you’ve had more bad health news to deal with, sending best wishes and hugs.
 
Thank you everyone. @rebrascora I agree about saying unlikely surgery without looking at scans but I'm happy that he's going to look at the scans in details and compare them with the ones from three years ago.
I feel nicely relaxed today. A sense of relief that I have both my NHS neurologist and a NHS neurosurgeon looking at the MRI's, plus plan to have arm nerve conduction tests, makes me feel like I've delegated it to them so there's no more I can do until I get their feedback. I'm fed with feeling ill making me feel down so I want to aim to focus on the positives of my life 🙂 x
 
Sending you lots of love and hugs keep us posted if you feel you can Thinking of you and sending good vibes
<3 <3 <3 <3
gail
 
gail2 said:
Sending you lots of love and hugs keep us posted if you feel you can Thinking of you and sending good vibes
<3 <3 <3 <3
gail
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Thank you Gail xx
 
AJLang said:
Unfortunately it’s not good news for me.
I’ve got my MRI results. Mark knows the results and my three closest friends but I don’t know how to tell my niece or Mark’s parents so will be keeping quiet for the moment. Neck/cervical MRI critical results section was marked as “significant” and they want me to see a neck surgeon promptly” re cervical myelopathy other scans also had problems eg mild cerebral volume loss but nothing critical.
Fortunately the appointment with the NHS neck consultant is today but the thought of him potentially suggesting neuro surgery on my spinal cord is beyond my comprehension. Anyhow the results of the three MRI scans plus the neuropathy confirmation last month explain virtually all of my weird symptoms that the neurologist had been trying to figure out.
I’m feeling tough today. Did lots of proper reading eg NHS sources etc in the early hours. If I’m considered fit enough almost certainly neuro surgery with risks of paralysis etc and long and painful recovery. Without surgery the outcome is almost certainly complete paralysis (or worse). Surgery won’t improve anything already wrong with me but surgery will hopefully slow progression. As things have been steadily progressing and worsening over the past 12-18 months would be surprising if the surgeon this afternoon doesn’t recommend surgery. At least I’m prepared for what he could say
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The good thing is that you now have an answer. At least now you can work towards a better prognosis. Well done for not ignoring it. I think most people are made to feel that it's nothing to worry about and they must get on with it.
Try and withhold worst scenario conclusions. The radiologist got my initial MRI wrong and it was neurologist MDT that got it right. Get prepared when you know what you dealing with for sure.
I know it is far from easy ....but try and be positive to give yourself optimal outcomes.
Let us know how you are doing when you can. I've only had head contrast MRI's but perhaps I should ask for more x
 
AJLang said:
makes me feel like I've delegated it to them so there's no more I can do until I get their feedback. I'm fed with feeling ill making me feel down so I want to aim to focus on the positives of my life 🙂 x
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That's the best approach and the "delegation" comment made me smile. Take care of yourself. You are ray of sunshine even in your hard moments, I don't know how you do it but you inspire me so often, we can't control it all but we can see the joy in what we have.
 
AJLang said:
I feel nicely relaxed today. A sense of relief that I have both my NHS neurologist and a NHS neurosurgeon looking at the MRI's, plus plan to have arm nerve conduction tests, makes me feel like I've delegated it to them so there's no more I can do until I get their feedback. I'm fed with feeling ill making me feel down so I want to aim to focus on the positives of my life 🙂x
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Absolutely @AJLang - keep focussing on the positives. <3

Hope the neurologist and neurosurgeon are able to formulate a viable plan from your scans and conduction tests.
 
Thinking of you Amanda. I am pleased that there is some joined up thinking going on.
 
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