ANA Discussion Forum
General Category => AN Issues => Topic started by: tmason on October 10, 2012, 12:52:07 pm
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Hey all. I am new here and am finding comfort reading this forum but at the same it feels like a dream. I think I am in denial that I am using my name and brain tumor in the same sentence. I don't expect any diagnosis, just looking for some comfort and support. I don't even know if I have an AN yet, its just one of the possibilites, just don't feel like my friends understand why I am scared...saying things like its all going to be okay, Gods in control, and no news is good news. All the while I want to shake them and say I could have a brain tumor! Thats enough to knock anyone of their feet.
I don't even know for sure when my symptoms started. About 8 months ago my friends some had a hearing frequency test on his ipod and I couldn't hear anything past 8,000. Since then I have noticed I can't hear crickets, talking on the phone with my left ear...I hear the noise but can't figure out what they are saying. Just thought I was getting old due to recently turning 40. ;) A few weeks ago I saw my friend who is an audiologist and went to her for a hearing test. I had 50% hearing loss at the higher frequencies in the left ear only. Everything else was fine. Because I have constant tinnitus esp in that ear she referred me to an ENT and told me that I could have the beginnings of Meineres or possible the neuroma.
After searching the internet, I realized that I have alot of the symptoms for a neuroma....which I know can be signs of other things as well. THe hearing loss, the tinnitus. I have had some eye twitchig that would last days at a time but my eye doctor said it was lack of sleep. I am also off balance several times a day...not many dizzy spells. BUt I could be standing still and start to fall over or be walking and and loss my balance etc. I have also noticed that my left ear kind of hurts--sometimes dull sometime a sharp pain...but thought maybe I was imaginging it.
I did see the ENT yesterday and he was more concerned about the balance and I don't feel like he is looking at all the symptoms as a whole. Anyway..he will be doing a balance/manuever testing for BPPV next wednesday. I also insisted on an MRI and he didn't seem to hesitate...so that is scheduled for MOnday.
I know you all have been where I am with the worry of the not knowing and the fear of brain surgery. Just needed to be around people who understand what I am feeling. I love my friends dearly...they just don't understand even though I know they are trying.
Thanks for listening...
Tina
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Hi, Tina ~
Welcome to the ANA discussion forums. Without presuming to offer anything like a 'diagnosis' I have to comment that your symptoms do seem comparable to what AN patients experience. However, your observation that those symptoms could indicate something else, such as Ménière's disease, is astute. The MRI scan will answer the question of whether or not what is causing your symptoms is, indeed, an acoustic neuroma. If that turns out to be the case, it is not the end of the world, by any means. Daunting and scary, yes. However, thousands of people have received the AN diagnosis, underwent surgery and/or radiation to address it and today are doing fine. I'm happy to report that I'm one of them.
As you noted, Tina, we've been in 'your shoes' (as it were) and do understand what you're going through. We're here to support you in whatever way we can.
A´propos of nothing, I have to mention that my lovely and gracious wife shares the same name as yours. :)
Jim
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Tina,
I know where you're coming from. I have a possible AN in the left ear, but won't know until I have my MRI Friday.....well, I should find out Monday afternoon or Tuesday morning the results. I know I have an AN on the right side, just not sure on how much it has grown since 2005. ( I have virtually no symptoms on the right side other than a little tinnitus and I do have Trigeminal Neuralgia on that side) I was told then not to worry about it, so I went home and forgot about it.......maybe not the smartest thing to do, I just thought since the Dr (neurotologist) wasn't worried about it, I wouldn't either. So the MRI will help me out 2 ways. Hopefully the one on the right hasn't changed much and the left side is non existant! I've not mentioned it to really anyone else around here, trying not to dwell on it really unless it comes to the point where I need to...then I'll deal with it.
When I first found out, I was a basket case, but after finding this group and reading, reading, and reading the posts I'm not as afraid as I was.
I hope you find out good news with your MRI!
Penny
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Hi, Tina and welcome to the Forum ;D
While I hope you don't have an AN, there are many more things in life that are worse.
I was 45 1/2 at the time of my diagnosis and my AN was on the left.
I wasn't fortunate enough to discover the ANA - or the ANA Forum - when I was diagnosed (I found it after my surgery). You've come to the right place if you do have an AN.
Best,
Jan
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Hi Tina .....
Adding my welcome to this forum of caring, supportive friends. While I hope you do not have an AN, if you do, this is the place to come for support from many who have "walked in your shoes" and fully understand your anxiety.
I was blindsided by my first diagnosis and did not know until two weeks after the diagnosing MRI, when the doctor walked in and said, "It looks like you have a tumor." I mentally and emotionally froze, asked some questions, but I have no idea what nor what were the answers. Walked out to my car and fell apart. Not a fun time.
As Jim and Jan have said, it truly is not the end of the world because it is treatable ..... but definitely a very, very scary time!!
Many thoughts and prayers.
Clarice
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Thanks everyone for the warm welcome! Reading stories and information on this website has really helped me calm down and not be so anxious, although I am sure I will be come MOnday waiting for the MRI results. I was really nervous about the initial ENT appt because I thought he would give me more answers and say if he did or didn't think I had an AN...but of course that didn't happen because I need more tests. :0(
As scary as the possibility of having an AN, I feel as if I have a sense of control after reading so much on this site about shaking the medical tree and I am so glad I did requesting the MRI when my ENT didn't mention it. Plus I feel like I have some control over treatment options and that is okay to chose a surgeon with experience and not just one locally...even if I have to drive 5 hours.
I am also learning its okay to be scared because it is scary and its okay to let people come around and help me and go with me to doctors appts...usually I want to be left alone but its nice to actually have that extra support and know that I am not doing that alone even though it seems my mom and sister have abandoned me...no phones to check on me...nothing.
Anyway. I am so glad I found this website early on, and while I hope I do not have an AN, I know if I do...there is a great place for me to go and be surrounded by people who understand, have been there, and survived.
Tina
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Hi Tina and welcome! It sounds like you listened to your wisdom and asked for an MRI. What a great way of obtaining information that will help you in deciding what treatment is appropriate for the symptoms you are experiencing. Please let us know the results regardless of the outcome.
karen
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G'day Tina
We have a sense of self at these times and I'm glad your intuition told you to ask for the MRI. I hope like heck that it isn't an AN but you sure have come to the right place for help and support.
I'll be looking closely on Monday for your post about the results. Hopefully they can give you the results on the same day as they do here in Aus.
Our arms are wrapped around you in a warm hug.
Suu xxoo