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Frustrated by my arms/hands plus upcoming glaucoma appointment

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AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
Where do I start? As if the year hasn't been bad enough already.
Phoned GP surgery last Tuesday because of strange sensation in arms etc. After various questions they booked me in for a full assessment the next morning. Due to results of assessment and a neck MRI three years ago now being referred to spinal orthopaedics with suspected cervical myelopathy that would require neurogical surgery through my neck. Urgent MRI usually required but because I'm claustrophobic having to wait until January for a private upright open MRI. Writing this at the moment because I'm really struggling with my hands and it is making me so frustrated. If surgery is required it won't improve anything but will be to prevent my arms from not working. I'm so glad that Mark was with me at the appointment to hear them say this as it certainly wasn't something I was expecting.
In July I was told by the top glaucoma surgeon at Moorfields at NHS that I need a glaucoma operation which I wasn't prepared for. The next appointment for this is next Tuesday and I'm dreading what they will say but so hoping that they've changed their minds about it.
 
Sorrybto hear you are having more bad news thrown at you ! S3nding you cyber hugs.
 
That sounds rough especially as they’re not offering hope of improvement. I hope the MRI shows something more manageable.
 
You really are having everything thrown at you @AJLang
Thinking of you.
 
sorry for the delay in replying. Thank you everyone
 
So sorry to hear this Amanda. Really hope they have given you the worst possible news and it turns out that things are actually not so bad as they have painted them. Fingers crossed the MRI will show something that can be fixed and glaucoma surgery is a success too.
Do you have any dates for any of this yet? Waiting must be the worst part when you are in these situations. Hope you are at least getting some good days when you can do some of your crafting.
Also sending (((HUGS)))
 
Thank you Barbara @rebrascora
Apologies to you and everyone that I haven't updated about the glaucoma.
Although I was told in July by the Director of Glaucoma at Moorfields that I needed surgery, with "encouragement" to have it booked then, there was some better news at the appointment just over a week ago. I saw someone more junior and visual field test then showed little change since a year ago i.e. the last test I may have just been a bit slow at not spotting all of the lights on the visual field test.
The glaucoma sight loss is still on a worsening trajectory - it's not good seeing the picture with all the missing dots in my eyes - BUT the good news is that for the moment they're saying that I don't need the surgery urgently. Go back in 6-9 months for the next glaucoma review.
With regard to the MRIs. I have the neck and spine MRIs on January 16th and an appointment at the neck and spine clinic the following Tuesday. Then on the Thursday I've got the lumbar spine MRI. Obviously it would have been better if the lumbar MRI had been before the consultant appointment but at least I will get some answers in January. I'm also fortunate that the NHS neck and spine clinic is at a private hospital.
It's taking a while for the MRI's because I need "upright" scans due to my claustrophobia and they were the earliest bookings I could get.
If there's any issues on the brain MRI then I will contact the neurologist that I see on a yearly basis.
In the meantime hope the scans are ok results - but it would be nice not to be reliant on strong codeine to deal with the lumbar/leg pain.
Wow apologies this has turned into a long post.
In the meantime I'm going to focus on having as much fun as I can on the limited income we have now that Mark is caring for me full-time. Within the next few days Christmas will be starting here 🙂 🙂 plus we have Mark's 50th Birthday in November!
 
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