Should I go to my ENT appointment tom... - Acoustic Neuroma ...

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Should I go to my ENT appointment tomorrow (very high risk group for Coronavirus)

MrsMoppit
MrsMoppit

I have an appointment tomorrow about my AN (or not!). I was diagnosed last October, told it was a 7mm AN and what the options were for treatment. Had a 2nd MRI in January with contrast but apparently that showed no AN at all!

Thing is, I’ve been having symptoms for a couple of years (falling over, balance, tinnitus, hearing loss, headaches, numbness in face) hence the original referral. I’d never heard of AN, so I hadn’t made up the symptoms to match a hypochondriac imagined illness! Symptoms have been getting steadily worse. I fall a lot and hearing very bad so whatever is causing this is still there.

So I really want to speak to someone about it. But I’m also in a very high risk group for Coronavirus (asthma, high blood pressure, 2x immunosuppressive drugs for psoriatic arthritis) so I’m really worried about hanging around in a busy outpatient department.

Anyone any thoughts? I really can’t decide if I should go or not.

9 Replies
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would be a good idea to call in advance - maybe they can delay the appointment or send you letter instead?

Maybe you could have a discussion by telephone or Skype with your Consultant at that time instead? Ring in advance to see if possible .

Hi,

I am going for another MRI on the 5th April but I think it’s ok to go. The clinic you will be going to will be free of infection, it’s not like you are going to the A&E

I am going to go

Kind regards

Thank you all for the advice. I had made up my mind not to go but the ENT consultant phoned me directly on my mobile this morning and told me outpatients is closed for the present. He gave me a very useful phone consultation and booked me for a six month review to look at the hearing issues.

My advice to others in a similar situation is not to go, but to phone the hospital in advance of your appointment, which is what I should have done!

Quick reply, you should look up vestibular rehab/therapy exercises on Youtube to help improve your balance and decrease your falls. I am similar to you in that I have asthma, high blood pressure and I am on immunosuppressive meds. I am a nurse working in a hospital, all the typical signs of NA with gamma knife surgery on hold with Convid 19. Hang in there and best of luck, Margie

Hey MrsMoppit ,

Do you have any problems with your feet? ie weak feet/ankles not able to wear heels (I live in trainers. As you walk do your toes hit the ground B4 your heels. I have a AN diagnosed approx 20 years ago. The reason for my awful balance and falls was diagnosed a couple of year ago I have "Charcot Marie Tooth disease"

MrsMoppit
MrsMoppit
in reply to handmaid

I had to Google that condition, and interestingly, I do fit virtually all the symptoms. I sprained/broke both ankles numerous times when I was growing up, have hery high arches, hammer toes, toes hit the ground first, chronically cold feet and lack of sensation in feet and hands.

It'll be a very long time before I get to see a medical professional in the current crisis, but when I do, I will ask the question.

Thank you for replying, and I hope you are managing to keep well and getting the treatment you need.

Kerry x

Hi Kerry, CMT is said to be the most common disease that no one has ever heard of. Neither my GP or hospital doctors had never come across it. Each visit to A&E with broken bones the doc goes off to Google it. May be worth asking gp to refer you to a neurologist. Dr Gran at Queens medical centre Nottingham had blood tests done, I don't have the common form cmt so need more blood to determine which form I have. Also had electrical conduction tests to determine which nerves/muscles work or not. Hope this helps you. Please keep in touch let me know how you get on. Stay safe Shani

MrsMoppit
MrsMoppit
in reply to handmaid

Thank you, Shani. I will, but heavens knows when I'll get the opportunity! Our GP practice isn't very good -- I'm not a moaner; our last practice was brilliant, but this one has a terrible reputation in the area. Sadly, it's the only one we can register with as we live in the middle of nowhere. My rheumatology consultants, on the rare occasions I can get to see them, are brilliant at referring people for other specialisms, so that will probably be my best bet.

Luckily, I'm not a common visitor to the GP in general. I prefer to keep the NHS for dire emergencies where possible!

Stay safe.

Kerry x

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