Trouble swallowing : Due to covid I... - Acoustic Neuroma ...

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Trouble swallowing

Angelrise profile image

Due to covid I haven't seen a doctor anout my AN since December 2019. I did mention then about my problem swallowing saliva when I was lying down.

My GP arranged for me to be tested for sleep apnea as I had fatigue, and I was given a CPAP machine. I was found not to have sleep apnea after 3 months but found machine has helped the choking.

I have had 1 mri in last 2years ( result by letter), and found lying on my back very difficult with the feeling of choking. I'm not sure given I think this problem has got worse that I could get an MRI.

I'm not sure how to proceed.

Should I try and get a swallow test done privately?

9 Replies

Hi Angelrise, perhaps you could phone your ENT surgeon's clinic and mention that your symptoms changed and ask to speak to them? And then they will decide on the MRI?

Angelrise profile image
Angelrise in reply to EwaW

Many thanks for your reply.I had to write to get the MRI I had 8 months ago, the phone doesnt get answered.I will write again.

I do know they are under great pressure here so don't like to be a nuisance.

Hiya. When your AN was first diagnosed did they give you any indication how big it was and explain what the treatment plan was going to be? I know you said result by letter. Even if small AN and put on watch and wait no further MRI in 2 years nor another even in sight doesn't sound right? I still had MRIs every 6 months even when my AN was small at the start. Could you do as Ewa suggested and additionally ask your GP to follow up with your ENT consultant and get him to confirm that your symptoms have changed requiring you to access GP surgery? Yes they are busy but I think waiting for nearly 2 years already is patience enough and this is your health so please push, you are not a nuisance. Good luck

Angelrise profile image
Angelrise in reply to Smiffy65

Thank you for reply. (Hope this explanation is not to long)

My AN was 18mm when 1st diagnosed 3 years ago.

I have had 3 MRI s.

2nd had grown just on 2 cm now, but 3rd 8 months ago had not changed. (There was no dye in this MRI as previously done).

I was on watch and wait with check ups every 6 months!!!(before Covid)

I am managing all symptoms very well, I have been proactive.

I have done my best to look after my all around health, lowering blood pressure made a huge difference to headaches and facial numbness.

I have done balance execises and have tools that help manage this.

I have blue lens in glasses to help going into bright shops.

I can also spot if I have overdone things, my tinnitus usually gets a 'morse code'in it.

I have learned to recognise changes in symptoms to stop what Im doing so tiredness headaches etc don't get really bad.

My swallowing is the only area that I feel is slowly getting weaker, I can't seem to find information as most is on post op swallowing.

I will send another letter hospital to explain that Im not sure I could good to an mri and lie on my back for even a few minutes.

Many thanks again for you reply

Smiffy65 profile image
Smiffy65 in reply to Angelrise

Thanks for the update. Avhorton1 shared a useful link on this site about 20 days ago and trouble swallowing was listed on there as a rare side affect of an AN. I can't work out how to share but she listed it under 'a useful link'. Maybe you could share with GP / ENT consultant as evidence that potentially linked to your AN and therefore requiring additional investigation?

Will chase it upThank you for your help

Aww sorry to hear that… I would chase them up and ask them as they do say if symptoms worsen or change then get in touch… the fact you have been to the sleep clinic and it’s not that then they should refer you to the appropriate people for further tests… or just keep ringing gp and get them to refer you for the test you need… I sleep with cpap… godsend for me but I do have sleep apnea and have for 6 yrs now and worsened after pneumonia! For me it’s feeling like I can’t breathe if I lay on my back but that’s why as my throat collapses hence the cpap air splint… good luck and push for what you feel you need… xx

Thank you for your support, I have sent a letter off to hospital so hoping for a response.

Awww well keep everything crossed and keep us updated hun xx

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