Questing re:feeling of ear swelling and about hearing aids

[edthecat140]

My surgery was postponed for AN due to Convid virus. I lost hearing in my left ear over a 3 month time period. I have ringing in my ear, dizziness, some vision issues as well as a feeling of swelling in my ear. Does anybody else have the feeling of swelling in your ear and can anybody tell me about the hearing aids and what if anything that they do? Thanks, Margie

[whiteleye]

I have lost all hearing in my right ear. One of my symptoms is a feeling of fullness in the affected ear. It seems to come and go and not so much lately. I have not tried hearing aids as I understand it would take something the bone conduction hearing aid that I don't want to attempt right now. I am sorry about the delay in your treatment. Good luck!

[Tabbycat]

Hello edthecat

So sorry to hear your surgery has been postponed.

My tumour is on my right side so I have hearing loss on that side. I have a feeling of fullness in my right ear sometimes, apparently that's a common AN symptom. I wear a BTE (behind the ear) hearing aid in my right ear. It only improves my hearing slightly, but the main reason I've persevered with it is that it helps with my tinnitus - without it the tinnitus seems so much louder and intrusive!!

After your surgery ask your consultant which hearing aid (CROS or BiCROS, BAHA etc) will be of most benefit to you and to be referred to an audiologist. I go to the audiology department at my local hospital and they have been very supportive and helpful.

Tabbycat

[Tabbycat in reply to Tabbycat]

Hello edthecat

Thinking of you at this difficult time - how are you doing?

[edthecat140 in reply to Tabbycat]

Hi Tabbycat,

Nice of you to check in with me. In addition to by AN I am an immunocompromised nurse working in a hospital. While the pts with Convid are not on my floor they are close by and the thought that anybody could have the virus and not know scares me to death. I start having anxiety two days before I have to go in for a shift. I feel physically stable right now and perhaps the anxiety of what else is happening in the world has made my symptoms of my AN seem not nearly as urgent. I was hoping that someone else on this site would have had some kind of home remedy for the feeling of swelling/fullness in my ears. The only thing I could find was that after I sleep at night I don't wake up with the feeling of swelling. And, it seems to get worse with loud noise.

I am trying to keep busy while home. I started exercising (we use to go out dancing 3 times a week) and I ordered face masks from Etsy for myself and my co-workers which made me feel better.

How are you doing? What part of the country are you in? What are you doing to keep busy?

Margie (Phila PA)

[Tabbycat in reply to edthecat140]

Not sure what time it is in Philadelphia, but I'm going for - Good Morning - as you're on the east coast!

I'm in the north of England in the UK and I'm a retired primary school teacher - an elementary school in the US - and I taught Year 6 (5th Grade) in an inner-city school. I had to give up teaching as a result of my AN.

I was on 'watch and wait' for 4 years, but my tumour just kept on growing, so I opted for Gamma Knife Surgery - stereotactic radiosurgery (SRS) - which I had in 2018. Which kind of surgery were you going to have?

I can't imagine how frightening it must be to be a nurse at this particular time. And, you must be feeling so vulnerable dealing with your AN and your operation being cancelled all at the same time. When was your tumour diagnosed? Have you had any other treatment before now?

My husband and I are both considered 'vulnerable' - he has chronic heart failure and I also have a lung condition besides my AN, so we are trying to isolate ourselves as much as possible. We have been Spring cleaning - we've just finished clearing out all the kitchen cupboards and he is talking about decorating?!! I like reading, listening to the radio and in the evenings we are watching boxsets. We've just started series 3 of Westworld. The weather here is improving, so I'm trying to motivate myself to get outside to sort out the garden. We are allowed to go out for exercise for an hour a day, but I don't always have the energy to go very far.

Hope to hear from you soon,

Tabby

[edthecat140 in reply to Tabbycat]

Hi Tabby,

I was scheduled for Gamma Knife surgery and at this point I am glad it was postponed. I was on steroids and part of my hearing came back. I am guessing it has to do with some swelling around the AN but I am glad that my surgery was delayed.

I have a neurological illness so get yearly MRIs. An eye doctor (about 4 years ago) saw my MRI and said kind of matter of factly "you need to do something about that schwannoma" and I had no idea what she was talking about till I got home and looked it up (was that how I was first diagnosed??). Then just recently when I lost my hearing and was dizzy the thought that it was not my neurological illness but the AN that was causing the problem was evaluated.

I am still very concerned about working and my husband wants me to go out on Long Term Disability but I am unsure about doing that. I really don't think being immunocompromised and having asthma I would survive if I got the virus but at 58 years old I don't know that I am ready to leave my job permanently.

I was surprised you are only all allow out for 1 hour an day to exercise. We are allow out but are expected to wear masks and stay 6 feet away from others. Markets are only allowing 20% of capacity in the store at any one time and non essential business are closed. We are asked not to congregate however it is really not enforced and some of the churches are arguing that god with protect parishioners and are still holding services. We are hoping to level off with the virus here in Pennsylvania soon but our death toll keeps rising. New York and New Jersey are much worse.

What was the deciding factor in you leaving your job?

Margie

[Tabbycat in reply to edthecat140]

Hi edthecat

Thank you for replying, it's so good to speak to someone else who has an AN - I think we 're the only people who truly understand what it's like.

By the time my AN was diagnosed I was coming up to my 60th birthday. In England at that time teachers could retire and take their teacher's pension at 60 ( the age has been increased now). I had stopped full-time class teaching and went part-time when I was 56 and only worked in a school two days a week, but then they asked me to go back to teaching full-time, which I really didn't want to do, so I resigned and took a job at another school much closer to home.

There I was teaching a boy who had just been found to be profoundly deaf and had severe language delay. I worked one-to-one for 25 hours a week. After my diagnosis, I decided to keep working until he went up to high school. However, my symptons got gradually worse; my annual MRI scans showed that my tumour was getting bigger. I developed tinnitus, vertigo, dizziness, nausea and severe fatigue. The few months before the boy left to go to high school were so difficult, but I didn't want to let him down. The school wanted me to continue working with another child, a girl this time, but only for a few hours a week. I stupidly kept going for another term, but by then the skull base team were recommending that I should consider Gamma Knife Surgery and I had had enough. My husband had taken early retirement and both our children had left home by then. We could just about manage financially until our State Pensions arrived, so I decided to resign.

We are in lockdown here in England with lots of people staying at home. All the shops except food shops are closed. The supermarkets are all open, but you have to keep 2 meters apart, one adult per trolley and they only allow a few people in at a time. Schools, all places of worship, cinemas, theatres and restaurants are all closed. You are allowed out locally for one hours exercise a day; to shop for essential food and medicine; for medical reasons; or if you are a keyworker going to work. There are police patrols out, checking no-one is flouting the restrictions, but round here everyone seems to be following them. They say the number of hospital admissions are levelling off, but the death rate is still scarily high. I try to limit the amount of news reports I watch or read.

You are in my thoughts,

Tabby