ANA Discussion Forum
General Category => AN Issues => Topic started by: Alicia678 on November 08, 2008, 11:11:51 pm
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Hi everyone
My name is Alicia, Im 24 and I was diagnosed with a large (3.8cm) AN a few weeks ago. Ironically enough I'm a nurse and had my MRI in the hospital I work at. I looked up the scan the next day at work (a sunday) and found a mass. Good thing I work on an oncology floor with lots of doctors who have seen lots of different tumors and they were able to help me find a neurosurgeon that day before having the "official" results. I have absolutely no hearing symptoms or hearing loss on my auditory test. The ENT that is doing part of my surgery said "with a tumor that large it is very unheard of to have no hearing loss" My question is has anyone else been in this situation? This is a great website and source of support!
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Hi my name is Karen. I am 53 yrs. old. I had a little hearing loss for a couple of years. Then about a year ago the hearing got worse so I went to an ENT doctor. Thank God I went there instead of my primary doctor. They found a 1.5 cm tumor. I had no other symptons. I had surgery 4-8-08. I had complications ever since. Had 2 lumbar drains and 4 surgeries for csf leaks. Hoping this last one works. I just found this site also. Love it knowing other people are in same situation. I have no hearing in that ear. Had BAHA implant last week. Hope everything works out for you.
Karen
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Hi Alicia and welcome. I'm sorry you have an AN, but not sorry you found us. This is a great place to be if you have an AN.
To answer your question, not everyone diagnosed with an AN has the same symptoms. There are definitely commonalities among us, but everyone has a somewhat different experience. You'll find the same thing goes post op.
There are lots of stories on this forum of patients with numerous symptoms and very small ANS, and conversely there are patients with large ANs and very few symptoms. Sounds like you fall into the latter category. Size of an AN doesn't seem to have as much to do with symptoms as location does.
You note you don't have any hearing issues, but do you have other issues that led to your diagnosis? What was it that made your doctor order an MRI? I'm curious because sometimes patients go for years without being diagnosed. Others realize they have a "problem" but are misdiagnosed for a long time.
Where and when are you having your surgery? We have an AN Calendar where we like to note these things.
Karen - hi to you also. I responded to another of your posts yesterday.
Jan
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Hi Alicia,
I hope you don't mind, I made a new topic out of your post, using the magic wand they give to moderators. That way more people will see it.
We certainly have some members with ANs in the 4 cm plus range. Many of them did not notice any symptoms until it was quite large. Once they do get symptoms, hearing loss is often one of them, but not always. The AN starts in the internal auditory canal, where it can impact the hearing nerve, but then grows out of that into the area at the base of the skull. The additional growth outside the canal generally doesn't impact the hearing nerve, so size is not really the factor for hearing loss.
Welcome to the forum, please feel free to make yourself at home. :)
Steve
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It just goes to show you we're all different, our schwannomas are different and how we react to them are different.
Sort of hard for doctors to put us in "boxes" when it comes to answering all our questions reagarding hearing loss, treatments, healing, and side effect.
Makes us "special"! Thankfully though the majority of these stinkers are benign!
Glad you made yourself known Alicia and hope you find peace being here among friends.
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Hi Alicia,
I had no hearing loss at all (and still have good hearing post-op). In fact, my symptoms were a short bout of trigeminal neuralgia. My tumor was pretty large as well. I am sending you all my good wishes.
Marci
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Welcome Alicia,
I too had no hearing loss. I had a full feeling in my ear, kind of like when you fly and need to swallow and it clears. Well my was like that always. I also could not explain what I later learned to be numbness but I felt like I could not breath through my left nostril. Pressure on the 5th CN. I went misdiagnosed for 10 yrs. Then just last year parts of my face and tongue went numb and I started to slightly lose my balance in situation it was never a problem before. I went to two different ENTs and was on a wait list to see a neurologist (10 months). I thought this is nuts and went to emerg and they started the ball rolling. A little frustating to say the least. Anyway here I am and here you are, ask tons of questions.
Take care and keep us posted.
Michelle
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Alicia, My tumor was 4 cm and I had very minimal hearing loss in fact I thought my cordless phone was going bad. The doctor was quite surprised at my great hearing test results. What symptoms led you to an MRI?
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Thank you so much everyone! My AN was picked up on my regular eye exam because they found some jerky eye movements (nystagmus). Im a naturally clumsy person but I had been off balance for awhile and having lots of headaches with vomiting. I always attributed the dizziness and headaches to my birth control. I have switched several times thinking that was making me sick. I also have a very slight sensation loss in my face. Things make sense now though. I would occasionally drool (gross!) and occasionally a hard time swallowing. The doctors assure me I will lose 100% of my hearing in my right ear with surgery. I have accepted this now but still I cant imagine not having all hearing in 11 days. My surgery is Nov 21. I cant thank you all enough for your support!
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It sure sounds like you have been having symptoms, just not hearing loss. I'm glad they found it when they did!
I put your date on the AN Calendar (see link below), so we can all wish you well when the day arrives. We also like to know where you are having it, who is your doctor, and what kind of surgery you are having. We can't help it, we just want to know everything. ;)
Best wishes!
Steve
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Hi Alicia,
Your medical background will be a blessing to you as you navigate through this. Most of my husband's buddies in college became drs., and I know for a fact that I have talked to them more in the last few months than he has! You sound like you have had a fair amount of symptoms to deal with. Everyone has stories to tell here on the forum, so if you need any answers, just speak up! Welcome to the club, but sorry about the price of admission.
Maggie
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Alicia~
Just wanted to join in on the welcome - sorry you are here, but this is a great place to be if you have an AN!!
K ;D
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Alicia -
being SSD (single-sided deaf) isn't as bad as it might seem.
Lots of AN patients adjust just fine and if you don't there are options like the TransEar or the BAHA.
Jan
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Alicia
Welcome and sorry you have to be here. As many have said, it's a great place to be if you have an AN. I think you'll find our group a good source of information and comfort and occasionally hilarilty -- that helps break the tension around here.
Best wishes,
Wendy
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Dr. David Semenoff is my neurosurgeon and Dr. Steven Parnes is my ENT. The surgery is at Albany Medical Center (Albany NY) Im not really sure which way they're going to do the surgery. Dr. Semenoff wants to go translab and Dr Parnes wants to go retrosigmoid. I know the pros and cons to both. I guess whichever way will least affect the trigeminal nerve would be the way I would want. The way I look at it is you cant see deafness, you can see a bells palsy. That sounds so vain doesnt it!
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Dr. David Semenoff is my neurosurgeon and Dr. Steven Parnes is my ENT. The surgery is at Albany Medical Center (Albany NY) Im not really sure which way they're going to do the surgery. Dr. Semenoff wants to go translab and Dr Parnes wants to go retrosigmoid. I know the pros and cons to both. I guess whichever way will least affect the trigeminal nerve would be the way I would want. The way I look at it is you cant see deafness, you can see a bells palsy. That sounds so vain doesnt it!
Don't feel like the lone ranger with the vanity thing. ;D If you look at my post under the "inquiries" board, you'll see how I promptly inserted foot directly into mouth in my very first post here. LOL And yet everyone was still very understanding of where I was coming from, even as they slapped my wrist...
I'm 34 and have 2 young kids, the baby is 3 months old now. With the exception of a round with Bell's Palsy 10 years ago, I've always taken my looks for granted. I told my mom the other day that I'm going to want to cry if I end up with gray hair from this experience. ;) She said that at least I'm blond and it's easy to cover. haha I too have a large tumor--4.5 cm at the time of the MRI. I know that there is a very good chance that I'll have at least *some* facial nerve problems, hopefully temporary. I told my husband just give me some sunglasses and duct tape and I'll be good to go. :D
My surgery is the 19th of this month and it's a strange feeling to look in the mirror and know that these could be the last days that I look and see ME. That didn't stop me from ordering some really expensive wrinkle cream the other day though!! I'm starting to get faint laugh crinkles around my eyes and I DON'T LIKE IT. :P
Vonda
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Hi Alicia,
Sorry to meet you this way, but glad you found this great site, with wonderful people to help you through this.
SSD is not so bad, although you will probably find you appreciate the "quieter" places in life a lot more if/when you lose your hearing on one side (at least if you have tinnitus, which i think is worse than the deafnesses).
And you are not vain at all to be more concerned with face and hearing. I don't think anyone here would fault you for being concerned about your face. Hopefully you can avoid this though, as many do. It is unsettling, and you are so young.
Hope most of all that you have peace in your decision, and that it comes and goes fast so you can get with your life and hopefully feel better...headaches and vomiting does not sound fun. At least you know what it is now, and hopefully all the nurses in the hospital will spoil you silly because you are a nurse.
Good luck and keep smiling.
Trish
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wow - that's pretty amazing you didn't have hearing issues. i just assumed everyone did. after reading the replies i see that's not the case. i saw susan tedeschi last friday in baltimore, and although, i've seen her twice before and thinks she's awesome, i think that was my last concert for quite some time. my an ear throbbed the whole time. even w/ear plugs and my hand over right ear, it was painful. personally, i think that's why i have an, b/c of close to 100 concerts. good memories though! afterthought ... i did see mindy smith in annapolis on holloween, and i think b/c it was just her on stage, no drums/bass, i didn't have any problems.
good luck w/your surgery next week alicia. pls post soon and let us know of your progress! and good for you for posting so quickly. i'm a late bloomer.
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The day before my surgery I had to get my driver's license renewed since I didn't know when I would be able to do that and it was expiring. I smiled so BIG that the technician thought I was nuts. I figured it might be the last time in a long time that I would have that smile. (It's still here, mostly)
Best,
Marci
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Hello Alicia,
A belated welcome to the forum! Best wishes to you on your up-coming surgery.
You've seen that variability is the constant with symptoms for acoustic neuroma tumors. I'll add to that a bit more. My tumor is over 4 cm, yet my hearing is quite good, and I've not had the nauseau and vertigo issues that many others have had (thank goodness) But I have had ringing in my ear for a number of years, and most lately facial pain and numbness. Throw in the odd drool issue and some occassional strange feelings in my skull (I have yet to describe them accurately, even to myself - sort of mini-vibrations in the rear & lower part of the head).
Post-op, that variability will also be the constant, as you'll have noticed as you skim through the various threads here on the forum.
Stay postive. Lean on your friends & family, both at home and here on the discussion forum. Stay positive.
Again, best wishes for your upcoming procedure and recovery!
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Alicia, Your story sounds like mine, lots of symptoms that can be blamed on something else but when put together it is an AN. OF course you don't put it together until you have a huge thing in your head that needs surgery. Stay strong....
and like Marci I had my drivers license pic taken a few days before surgery with a big smile unfortunately I had to get it renewed this year and that big smile has not completely returned....but it's me.
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Hi Alicia,
I hope you don't mind, I made a new topic out of your post, using the magic wand they give to moderators. That way more people will see it.
geesh! Remind me to power up my magic wand... so much use lately, it's running outta juice! :)
Hi Alicia,
well, I can see everyone is doing the usual.... open arms for you and your arrival here. As you can see, vast array of AN patients, locations, treatment options, etc. I just wanted to extend a "welcome" to you... take your time, pls feel free to use the "search option" (top left) for specific inquiries... but, most of all.... remember that we are here for you.
Again, welcome!
Phyl
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Hi Alicia-
And a belated welcome! You've definitley got a whopper of a booger. Not that winning the brain booger lottery is what any of us wants! ;D
I can't tell you that I don't miss my hearing sometimes, but it really isn't so bad. You DO learn to appreciate the quieter places in your life. And, in my case, I'm kind of glad I am past the age of "clubbing" so that I don't have to deal with that noise level. As for facial issues - well, all of us who have had them will tell you that there isn't much fun about that. But, it also isn't so bad either. I'm slightly past six months post op and I have regained a pretty decent smile, atlhough my eye, chin, forehead and lower lip don't work much. And, my smile doesn't look the same as before - but my husband thinks my crooked smile is quite sexy (am I allowed to say that?) and that sure helps!
I guess what I'd say to you is - learn as much as you can about what could happen, but then try not to obsess too much about it. Trust your doctors, and also trust that you, like all of us, have an amazing capacity to deal with whatever life dishes out. And, while the complications that some of us have had tend to stand out, there are SO MANY people who have surgery, recover and go on about their lives. Have faith.
Sending you prayers and good wishes,
Debbi