worried about progression

[vec776]

Hi everyone! I'm new here; got diagnosed with an acoustic neuroma last June following the loss of hearing in my right side and a referral to ENT. I apparently got missed off the 'to action' list and so didn't have a follow on appointment or repeat MRI until March 2020. My AN has grown 9mm in 9 months which I understand is a relatively large amount and now needs active treatment. In terms of symptoms I have lost my hearing on my right hand side, get tinnitus, frequent headaches and also have terrible balance. These have all been manageable, but I'm a bit concerned because in the last few weeks I've noticed the pupil in my right eye (AN side) is always bigger than the pupil in my left eye, and I've started getting really bad migraines having never had them before, though I'm not sure if that's related or not! I can't decide on treatment - if I get gamma knife surgery will those symptoms go or will the surgery just stop them escalating further. For context, I'm a 28 year old female and I'm just a bit concerned that my quality of life is beginning to get impacted by it all! Apologies for all the questions/ranting, just needed to get it off my chest I think

[Bullpenn]

Hello vec776, I’m in the same boat as you and awaiting surgery being diagnosed in feb 20. I’m 33 and the consultant said to me as I’m young she would advise surgery and not the wait and watch as it will only get bigger so I’m on the waiting list with a pre op next week.

All your symptoms are the same as mine so I would get you name on the list while you wrestle with the options as you can always change your mind regarding surgery.

With Covid everything is so much slower and all telephone appointments.

Take care xxxx

[Kristyll]

You have to weigh up the treatment

options but if by any chance a small piece is sometimes left to preserve whatever it is nearest to. It then often dies off, however if it started to grow again radiosurgery may help stop the growth. Think carefully where e you are seen to ensure you are in one of the best hospital for excellence on this condition. All the best x

[Tabbycat]

Hello vec776

I had a right side acoustic neuroma diagnosed in 2014 and was on wait and watch for 4 years with annual MRI scans. I was told that these type of tumours were very slow growing, but each year the tumour grew, so I had Gamma Knife Surgery in 2018. in Leeds, England.

I had an MRI last year (the first after the surgery) which showed that the tumour had not increased in size and may have slightly reduced in volume. This year my annual MRI in April was cancelled due to the COVID-19 pandemic and I eventually got called to go to have a scan on 10th June - now I just have to wait for the results.

Some symptons have stayed pretty much the same - hearing loss and tinnitus in the right ear; poor balance and overwhelming fatigue some days ( my husband thinks these have been less frequent lately, but that may be because we've been in lockdown for the past 13 weeks). However, the nausea and vertigo seem to be improving - but again we're not going out and about as much as usual. I've never really had that many headaches.

Hope all goes well with you,

Tabby

[edthecat140 in reply to Tabbycat]

Tabbycat, Did you get the results of you MRI yet? Did you have complete hearing loss in your right side before the surgery? I am scheduled for Gamma Knife surgery on 6/30. I still have some hearing left in my affected ear and I am wondering if I will lose all hearing in that ear after the Gamma Knife. I am going to a hearing aid specialist tomorrow but not really thinking they can help me.

How are you doing controlling the Covid there?

Margie

[Tabbycat in reply to edthecat140]

Hello Margie

No, I haven't had the results of my MRI yet - it usually takes about a month for the letter to arrive with the results and an appointment to see the skull base team, if necessary. I don't know if the whole COVID-19 thing will make that process slower.

No, I didn't have complete hearing loss in my right ear before Gamma Knife. I had a hearing test just before and about six months afterwards and the results were about the same. I wear a hearing aid on that side - it does improve my hearing a bit, but mainly it makes my tinnitus less intrusive. It did take a while to get used to it and several visits back to the audiology department for adjustments - but worth perservering!

Do you have tinnitus? It's worth telling the audiologist who's doing your hearing test if you do as they can change the type of sounds they play to you. Let me know how you get on.

The lockdown in England is in week 14, but they have started to ease the restrictions gradually. I'm still worried about a second wave of infection like there seems to be in other countries. Where in the world are you?

Stay safe

Tabby

[edthecat140 in reply to Tabbycat]

Tabby,

Wow! It takes a month for you to get the results of an MRI? They post the result online on my hospital portal website so I can see my results in a few days (or if the results are bad I get a call back the same day as the MRI!)

I am in the US, just outside of Philadelphia Pennsylvania. They are easing up the restrictions in some parts of the country (allowing outdoor dining here that is spaced out and shopping with 50% store capacity with masks) and in other parts are becoming more restrictive as the Covid virus has exploded. We do not have a national response to the virus so it is left up to the individual state's governors. I too am worried about a second wave.

I know the hospitals are still limiting visitors for outpatient appts and I am wondering if my husband will be able to accompany me for my Gamma Knife procedure on Tue or will he have to wait in the car for several hours. My AN has grown significantly from my MRI in Feb to my MRI in May so it is not slow growing. I do have some titintis but it does not bother me during my normal day. I am very dizzy and I hope that will resolves itself when the tumor shrinks. I can't walk a straight line and it is esp difficult for me to walk on an unlevel surface.

The first ENT I saw said that a hearing aid would not help my hearing at all but I went to a hearing aid store and my hearing was better with the hearing aid. I really can't explain it but some days my hearing is better than other days. This hearing aid was $3400 so I am going to check out several other brands before deciding which one to pick. I was hoping to just get one hearing aid for my bad ear however these hearing aids work together and just one is not helpful.

Let me know when you hear about your MRI and wish me luck on Tue.!

Margie