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Lilykat49 02-23-2008 06:17 AM

Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
:dizzy:I have been told I have an acoustic neuroma, and I am on "watch and see"
right now, unless symptoms become unbearable. They are pretty bad now.
I would like to know if anybody else out there has this . I would like to compare symptoms!

Sheppies 02-25-2008 12:54 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
Hi There
I live in England but have also just been diagnosed with an acoustic neuroma, I have been told that at the moment it is 7mm x 4mm x 4mm and am waiting to be refered to a specialist hospital to find out what treatment they recomend. the symptoms I suffer are:
Low hearing in my left ear
A feeling of fullness/pressure in the left ear
Feeling of dizzyness (or like I had a good drink the previous night)
sometimes the left side of my face can feel a little numb
Hope you are doing ok
Janet

Lilykat49 02-25-2008 10:32 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
Thanks for the reply! I do have dizziness, sometimes my ear feels "stopped up", also my balance seems "off"
I also sometimes have a weird feeling in my head (I feel like something is just not right in there), I don't have any hearing loss as of now, but it seems very loud noises and certain tones bother me. I am to have another MRI in March to see if the tumor has grown. It is good to be in contact with someone else that has this. I am doing ok, hope you are, too. Do you have any vision problems with yours?

Lily

Sheppies 02-26-2008 01:27 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
Hi there,
No I don't have any vision problems, but the hearing in that ear is low, noises affect me too, sometimes they sound way too loud, or seems to echo around my head!!
The best way I can describe how I feel how you feel when you have had a really good drink the previous night, and you just don't feel quite 'with it'
My neuroma is 7mm x 4mm x 4mm at the moment, and I don't know what treatment they will recomend
You mentioned that you are going for another MRI scan, how long is it since you had your last one?
I was only diagnosed a week ago, so the reality is just setting in, I keep trying to look at all the treatment options out there, but they all seem to have good and bad side!!
Hope you are doing ok
Janet

Lilykat49 02-26-2008 07:57 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
Hi! I hope you are ok. It has been almost a year since I was diagnosed (April 2007)
The doctor wanted me to have another mri within six months of the first one to see if it has grown at all, but I have no insurance now, so I had to wait a year. I am on observation or "watch and wait" right now, unless symptoms become worse( I feel they are pretty bad now, sometimes!). There are different options, and like you said they all do have a good and bad side. Don't give up. When I was first diagnosed, i think It took about a week to sink in ,too.
I just have to keep thinking that it could be worse, it could have been cancer, and I'm so very thankful that it's not. You know I have good days and some bad days, the bad days can get to you sometime, because even my family does not really know what I'm
going through. But most of the time I try not to let it get me down. Sometimes I do wish that this tumor was just gone, or that they had better options out there! I hope something I've said will maybe help you. It is good to be in contact with someone who understands! Thank you so much for your replies!!!!!
Lily
P.S. I am doing pretty good today. Yester day was a little bad

Sheppies 02-26-2008 09:05 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
Yes, its good to talk to someone who is ging through the same thing. sorry to hear about your medical indurance, that is really tough,does that mean you have to pass for treatment yourself? I guess we are lucky having the National Health service over here, although that does not mean I might not have a lengthy wait in some areas it is on its knees, and since I don't have private cover I will be at their mercy.

Do you know how large your tumour was last April, and do you feel in yourself that it is getting worse, I would like to know at what size will they recomend treating you?

You don't say if you have children, I have two although they are just about adults now, they are 20 and 16, I find it musch easier to say I have a benign tumour on my acoustic nerve, that way I think they reckon it is just lurking somewhere in my ear!! I also have not told my Mum, she is seriously ill in hospital at the moment and I do not want to worry her with it

Thanks for the web address I will have a look at that

Speak soon
Janet

julriggs 08-08-2008 07:58 PM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
[QUOTE=Lilykat49;3459246]Hi! I hope you are ok. It has been almost a year since I was diagnosed (April 2007)
The doctor wanted me to have another mri within six months of the first one to see if it has grown at all, but I have no insurance now, so I had to wait a year. I am on observation or "watch and wait" right now, unless symptoms become worse( I feel they are pretty bad now, sometimes!). There are different options, and like you said they all do have a good and bad side. Don't give up. When I was first diagnosed, i think It took about a week to sink in ,too.
I just have to keep thinking that it could be worse, it could have been cancer, and I'm so very thankful that it's not. You know I have good days and some bad days, the bad days can get to you sometime, because even my family does not really know what I'm
going through. But most of the time I try not to let it get me down. Sometimes I do wish that this tumor was just gone, or that they had better options out there! I hope something I've said will maybe help you. It is good to be in contact with someone who understands! Thank you so much for your replies!!!!!
Lily
P.S. I am doing pretty good today. Yester day was a little bad[/QUOTE]

julriggs 08-08-2008 08:04 PM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
I also have the nerve tumor. Just found this out this week, been dealing with ear problems dizziness, hearing loss, balance, falling
But I would like to ask if others have experienced the same.
I describle it as turning on and off a light switch. It's like I'm on, then off, then back on. Everything goes dark, but it goes as quick as shutting off a light switch and turning it back on. Plus I feel in my brain at times, like it's tight, like the brain is swollen and later feels fine. Has anyone else experienced this.?

tlogic 08-27-2008 07:55 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
My mum found out yesterday that she to has an auditory nerve tumor, she is so worried like myself, this tumor showed up on the mri scan but not in a normal scan. The doctors told her that its good that they caught it early but there is no treatment avilable for this other then operate if it goes above a certain scale. She is on a 3, however if it goes to 4 then they will need to operate. They have told her that she will have to come in every 6 month to see if this tumor grows. what are the long term effect if you have this, is this curable after an operation? is this life threatning? I'm so worried I don't what to do.

woody2008 09-01-2008 06:54 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
HI there. Can I ask how it lead up to this. The reason I ask is because I have had headaches/ tingling/ numbness/ confusion went to the ER and had a CT Scan done. They said one of my auditory canals are showing bigger than the other and they need to do an MRI to see what is going on.

Does anyone know what this might be caused by???
Any help would be great - not much on the internet!!!
Angie

wayne790 09-01-2008 09:32 AM

Re: Acoustic neuroma-(auditory nerve tumor)does anyone else have this
 
I have a Acoustic Neuroma that was diagnosed about ten years ago. My symptoms were loss of hearing in ear, constant ringing in ear, loss of balance, etc. Anyway I want to a surgeon and he wanted to remove it immediately, so I talked with my ENT doctor and he said no just wait and see how fast it grows. As I said it has been over ten years and I still have it and it has not grown at all. Another way to treat besides surgery is gamma knife. Good luck to you.


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