ANA Discussion Forum
General Category => AN Issues => Topic started by: wendysig on May 19, 2008, 12:27:47 am
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I always have a feeling of pressure or "fullness" in my afectted ear, often accompanied by numbness of the inside of my ear, my entire ear and also sometiimes my cheek and cheekbone. I also think when these sensations are really strong, the hearing in my ear is also different. Does anyone else have this problem? Any idea of what causes this?
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Wendy -
fullness or "pressure" in your ear is often one of the symptoms of having an AN. I had it, as well as, diminished hearing in my AN ear prior to diagnosis.
In my case my AN was pressing on my 7th and 8th cranial nerves - maybe your AN is pressing on those same nerves (?).
I never had numbness, but I'm sure someone else has. As we always say, everyone is different.
Jan
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Wendy~
I never really remember having a numb ear, but my face would sometimes have this. I remember when my sweet hubby & I started dating, I told him that I sometimes got food on my chin & didn't know (feel) it. I found out later that was when the tumor was pressing more on that 7th nerve.
K
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Thanks for yoru replies. I e-mailed my doctor and am going to see him tomorrow. He thinks there is a good chance my AN is growing is compressing my acoustic nerve and possiblly the blood vessel supplying my cochlea. He said there is probably facial nerve involvement too. Thiis not what I was hoping to hear although I'm not terribly surprised. He put me on a tapering dose of prenisone in the meantime for the next two weeks in the hop that this will help return some of my hearing. He is also scheduling a new audiogram to see if I have additional hearing loss. I hope it's nothing permanent as I was hoping he could save the hearing in my affected ear. I'm having an ENG tomorrow so that might tell part of the story. Wish me luck.
Wendy
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Good luck, Wendy.
I'm hoping for the best!
Jan
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Me again. I meant to say I'm having an ENG tomorrow and CT scan on Wednesday so that might tell the story. Sometimes my mind works faster than my hands and I don't always reach what I write.
Anyway, wish me luck.
Wendy
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Me again. I meant to say I'm having an ENG tomorrow and CT scan on Wednesday so that might tell the story. Sometimes my mind works faster than my hands and I don't always reach what I write.
I know the feeling, it happens to me all the time! ;D
Jan
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Wendy -
I had the numbness inside my ear and half of my face too prior to surgery. I told the doctor that when I cleaned my ear out with a q-tip, I couldn't feel it (then quickly realized that you're not supposed to tell the doctor you actually do that because they yell at you! I recall another thread on that issue a few months back..).
It's possible your AN just happens to be leaning right on the nerve to cause the numbness, and it certainly wouldn't have had to grow a lot to do that. I hope you get some relief from the prednisone. Good luck with the ENG and the CT.
And we must be opposites because my hands can definitely work faster than my brain most days! :(
Lori
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Wendy-
I am sending lots of good thoughts your way - hopefully the tests tomorow and Weds will give you more information. Meanwhile, try not to stress too much.
What time is your appt tomorrow?
Debbi
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Wendy,
I wish much luck with the prednisone. I was on it a month ago and what a ride. Be ready for the the manic mania. It made my NUTS!!!
All the best,
Anne Marie
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Hi and thanks to all of you for your good wishes and information.
Thanks Lori, my doctor also told me it doesn't even have to grow enough to show up on an MRI to take out my hearing and that's why he put me back on prednisone. I' m crossing my fingers on one hand for me, if that's okay with Debbi She can have the luck from my other fingers and toes.
Debbi - My appointment is at 1:30, I probably won't get home until at least 5:00 or 5:30 since I'm using public transportation. I won't drive in Manhattan. The traffic is too crazy for me. I also have an appointment fpr a CT scan on Wednesday. Hopefullly, I won't have to wait too long to get the results from that too. I'm kind of anxious to know what's going on.
Thanks to you too Ann Marie - This is my second go-around with prednisone, so I know what you mean. It really was not fun for me, but apparrently, my kids got a kick out of the way it made me act. Sometimes they tease me unmercifully. Thank goodness for them. They make me laugh when I'm getting too crazy over all of this. Anyway, it didn't change anything the first time around. Maybe round two will be the charm.
Wendy
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Wendy~
Good Luck with all of your tests today and tomorrow - AND navigating Manhatttan! ;)
K
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Hi all-
Went into Manhattan today to see what my doctor had to say about my AN. I had a new ENG and audiogram today. The ENG really didn't show anything new, but the audiogram was very upsettiing. It showed a 30 decible hearing loss. I also told the doctor I am much more off balance when I walk and he agreed that from what he remembered, I am walking much more like a drunken sailor. He also told me he is certain my AN has grown, although he feels another MRI is not necessary because the amount of growth that's taken place would probably not be measureable on the MRI. . The CT scan I'm having tomorrow is not for this. It is part of the pre-op stuff so they can see the bony structure of my head where the surgery will take place. He also said unless the prednisone brings back my hearing,it is not recoverable , so I should probably have a translab instead of the middle fossa he had been planning, but that discussion is two weeks down the road when I am finished with the prednisone taper. Well, at least there is still the chance the prednisone might dor its job. If not, I'll join the ranks of those of you with SSD. Not something I look forward to, but not the end of the world. I just keep reminding myself to be thankful. No matter how bad it seems right now, the bright side is that it's not cancer; I have a great doctor I know will do everything he can to help me and I have my family and all of you wonderful people to complain to. Plus, I'm sure my daughters will continue to make me laugh by constantly making fun of me (only in a good and innocent way). Laughter is good for the body, mind and soul.
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No matter how bad it seems right now, the bright side is that it's not cancer;
Great point, Wendy.
I've been thinking about Ted Kennedy all afternoon and evening since I heard the news about his brain tumor.
Definitely puts my AN into perspective. His diagnosis could have been my diagnosis - or the diagnosis of any one of us for that matter.
We are all truly blessed,
Jan
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Hi Wendy,
Is the 30 db loss the total amount of loss? I have lost about 45-50 db in my left ear, I think. While treatment didn't restore any (I had CK radiation), I did not lose more, and am now using a hearing aid. It isn't perfect by any means, but with the aid, it is a pretty good working ear now, especially for conversation.
I don't know if middle fossa surgery would have the same chance of preserving what you have left, but if you could come out of it with only a 30-50 db drop, I think it would be worth trying to preserve it. Partial hearing is still pretty valuable.
If you do end up SSD, though, you still have the option of a BAHA, which I think are cool because they are high tech and they snap onto your head. 8)
Steve
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Wendy -
I'm glad to hear your daughters can keep you laughing. I guess they know how important it is to keep a sense of humor through all this too. And I'm sure it makes them feel better to see Mom laughing.
I am in a family of real comedians too, so it helps to be able to laugh along with them!
And just wait til they see that "bonnet" on your head - that should be good for a hearty laugh out of them!
Lori
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Hi Wendy
I also have numbness in my cheek bones, Jaw line and the left side of my tongue. My doctor thinks the tumor may be touching the nerve.
It feels like you just got home from the dentist. I find that it gets worse at night when i'm asleep. or stressed.
Sam
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Sam,
I too suffer from the same symptoms. I've been on several different med's because on top of that I get wicked headaches on the same side as my neuroma. I'm on neurontin. I must say it has helped me a lot. Let your Dr know what's going on. The squeaky wheel gets the grease. It took me four Drs to finally get someone who understood what I was going thru.
Hang in there my friend, I know what you are saying about being stressed. I too know about the sleeping issue. I have a neuroma on my scar. I received a nerve block May 1st. It has helped. I can now sleep on my left side but I do have roll when it starts to bother me. Get your Dr to check out your scar carefully. I will have to have the neuroma removed. He will open me up along the scar, remove the neuroma and scrape the bone, and he will remove all the old scar tissue. I hope it will be the answer. The nerve block was three injections along the scar, the third one was the worst. Today I'm coping much better, mind you I cannot touch the neuroma.
Good luck Sam,
Anne Marie
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Thanks all for your replies and good wishes.
Sannicit - Is the numbness you feel constant or does it come and go? Mine seems to come and go depending on how much pressure I am feeling in my ear. The more pressure in my ear, the more numbness. I did forget to mention this to my doctor yesterday because the news I heard about my hearing drop knocked all other quextions except what could be done about that out of my hear. I plan to e-mail him and see what he has to say.
Ann Marie - I haven't had microsurgery yet so although your advice sounds like it would be good if I had, that's not my problem. Sorry to hear about the neuroma on your scar. That sounds pretty awful but hopefullly it will be okay soon. I know what you mean about some doctors not understanding what you've been going through. I know that some the doctors I've seen give me strange looks sometimes. I would go as far as saying at least one of them didn't believe me about my balance problem until he saw me walk and became convinced by a couple of (what seemed like) short-hand tests he did. Why would anyone make these things up/
Wendy