Watch and Wait

[sals]

I have a 4.5 acoustic neuroma which was discovered last year when I went to the ENT doctor. He was sure it was an A.N. and had a MRI which showed i did indeed have one. He then sent me to a neurosurgeon who said I was to have an MRI every 6 months to see if it was growing. As I am 75 he wants me on Wait and See as he said surgery will make me worse as far as balance and tinntintus goes. I am now totally deaf in my right ear. Has anyone else been given the same advise? I am rather apprehensive as I keep reading if you have a large tumour which is not removed it will kill you. At the same time at this age and stage I am not looking forward to the post surgery if I had it.

[CHD63]

Hi sals and welcome to this forum .....

If you have a 4.5 cm acoustic neuroma, it is indeed in the large category.  I am not a medical professional (nor are the users of this forum), but it does seem a bit unusual to wait and watch that large of an AN.

As for surgical removal at age 75, much depends upon your overall general health and potential anesthesia risks.  I am not sure why the neurosurgeon feels the balance and tinnitus would be worse after surgery.  Granted, it may not be any better than it is now, but that is very difficult to predict.

If your tumor is not pressing on the brainstem currently, you could feasibly live out your natural life if it does not grow any further.

You do not say where you are located, nor which doctors you have consulted.  If I were you, I would send my MRI to a well-known doctor, who successfully treats acoustic neuroma patients frequently, for another opinion.

Many thoughts and prayers.

Clarice

[sals]

Thank you so much for answering me Clarice. I think I will try to find a doctor in Toronto for a second opinion. I live in Ottawa, Canada.

[CHD63]

For what it is worth, in addition to several excellent physicians in the US, I have heard good reports on Dr. Ryojo Akagami in Vancouver if you need to stay in Canada.  See:  http://neurosurgery.med.ubc.ca/faculty/faculty-spotlight/ryojo-akagami-bsc-md-msc-frcsc/  Let us know if you would like contact information for additional US doctors.

Clarice

[sals]

Has anyone over 75 had surgery? My acoustic neuroma is 4.5 cm but my surgeon does not want to operate due to my age.

[PaulW]

I think it's important to double check the size.
If it's 4.5mm I would look at watch and wait.
At 4.5cm you would probably have a lot of other problems, but you haven't told us about any other symptoms. So I am hoping your tumour is in fact 4.5mm
At 4.5mm I would absolutely agree with the doctor that watch and wait is the best option.
Many tumours don't grow.

[sals]

I am wondering if anyone who has a large acoustic neuroma and total deafness in one ear has a hard time being in a restaurant, or with a group of people I cannot explain what it does but it makes me very tense and I do not enjoy myself.

[lryan42]

Hey sals,

Just chiming in on the restaurant thing.  As it turns out, I have an AN which is about 1/10th the size of yours.  However, I've lost most of my hearing in that ear and rely on a hearing aide that helps a bit.

Noisy restaurants are the worst!  It's like a muddled jumble of noise.  Trying to understand what someone I'm with is saying is very tough.  My wife commented on how it's clear that I'm struggling to understand, and tend to get withdrawn from these situations.

In my opinion, the social isolation that comes from hearing loss is one of the worst parts of this whole thing.  Sorry you're going through it. 

Maybe someone here can chime in on other strategies they've had luck with for improving that situation.

[sals]

Thank you for your prompt reply. It made me feel better to know I am no the only one. How do you find it in a room of about 12 people all talking at once

[Enri]

My AN was also smaller than Sals and I can still hear in the affected ear but I only have about 50% word recognition.  I am not sure I can describe the feeling I sometimes  get when in a crowded place.  Perhaps I get tired more easily or at some point feel a bit off.  Helps to relax and remind myself that it could have been worst.  It also helps to focus on the one or two people that I want to talk to and not feel that I have to follow every conversation in the room or at the table. 

[lryan42]

Thank you for your prompt reply. It made me feel better to know I am no the only one. How do you find it in a room of about 12 people all talking at once

Yeah.  To the contrary: I think your example of a noisy restaurant or 12 people talking at once are both prime examples of the challenges hard-of-hearing people like us have.

For me, the best / only real work-around has been to identity and avoid scenarios like that and make sure friends and family know what's going on with my hearing loss so we all have appropriately set expectations.

Hang in there.