ANA Discussion Forum
General Category => AN Issues => Topic started by: Vtech on May 31, 2010, 08:18:12 pm
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I was just told I have AN after go ing to the doctor complaining of dizzy and balance issues. I am 38yr. old female. Also I am very healthy and in good shape so i was shocked by what I was told. They put me on medication to help the dizzy spells, but i get tired from it at work. Is there anything that anyone can recommend I try?
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Hello Barnello,
Welcome to the board. So sorry you've been diagnosed with AN but pleased you found this site. You will find lots of useful information here, and likely some solace that you are not alone. If you don't mind, can you tell us a little more about you and your AN.
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I am currently waiting to meet with a specilist next month. My primary care Dr. really did not give much info to me. Just that I was to see this specilist and he is always booked up months in advance. I am waiting to find out when my appointment is. All I have to go on is what I was told by the Dr. which is little, and the MRI coupled with the fact that they found this AN. As I know more I will share more. But right now the Dizzy spells are driving me nuts.
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Barnello -
being diagnosed with an AN is shocking to most of us - and like you, most people are healthy and in good shape when diagnosed. You are not alone.
Please contact the ANA and ask them to send you their informational brochures. They explain, in terms ordinary people - like you and me, not medical personnel - can understand just about everything you'd want to know about ANs and their treatment. You'll find them very valuable and full of wonderful information.
Best,
Jan
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Hello - and welcome, Barnello ~
Your reaction to receiving a diagnosis of an acoustic neuroma is normal. It's a relatively rare condition so few people have ever heard of it. The good news is that these tumors are non-malignant and treatable with radiation and/or surgery or, in some cases, both. Unfortunately, they're in a sensitive location and require a doctor with experience in treating ANs. Ironically, overall good health seems to have no bearing on whether you develop an acoustic neuroma. Most of the folks that post their experiences on these forums were in good health when diagnosed. I was.
The first neurosurgeon I saw, recommend by my Primary Care doctor, was inexperienced with ANs and seemed disinterested in my case. I quickly moved on and found a neurosurgeon with decades of experience in AN removal. He was very confident that, using debulking surgery followed by FSR (Fractionated Stereotactic Radiation) he could successfully deal with my large tumor without doing damage to the hyper-sensitive cranial nerves surrounding it. His expectations were proven correct. The surgery went well with no complications and the radiation appears to have halted any possibility of growth of the remaining tumor. My numerous pre-surgery symptoms disappeared almost immediately following the surgery. Subsequent MRI sans have shown necrosis (cell death) and some minor shrinkage.
Jan's ('leapyrtwins') suggestion to send for the ANA information packet is worth following. I did that when I was first diagnosed and the information was very helpful. As you continue your research, you'll learn more - but sometimes you may need to step back and stop researching for a week or so because you can be affected with information overload, which is counter-productive. The most important point I wish to make to you is to be sure you contract with a doctor (neurosurgeon, radiation oncologist, etc) that has extensive experience with acoustic neuromas. That is crucial, whether you chose surgery or radiation. Other posters will reiterate that point, I'm sure.
We're here to answer your questions if we can, offer practical advice (we're not doctors) and most of all, encourage and support you in whatever way we can.
I wish you a good journey as you begin the road back to wellness and normalcy. :)
Jim
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Jim:
Thank you for your kind words of encouragement. I am glad I found this board so that I can gain insight from others that have been through it.
Laurie
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Laurie .....
Adding my welcome to this forum of caring, supportive new friends. As the others have stated, hearing the diagnosis of having an acoustic neuroma is shocking and scary, indeed.
My first symptoms were dizziness and imbalance. The Valium that was initially prescribed for "inflammation of the inner ear" (before the diagnosing MRI) did nothing for me but put me to sleep. The only thing that finally "cured" the dizziness for me was surgical removal of the AN. Others have had different experiences, as you can see from reading other posts.
I hope you have sent for the ANA materials ..... they are very reassuring and answer many questions. We, who are active on this board, are here to provide support to each other by sharing our experiences. Each one of us has had a unique journey and no question is considered unimportant or silly.
Did your PCP tell you how large your AN is or where it is located? You are entitled to a copy of the MRI report, if he/she did not tell you.
Best thoughts.
Clarice
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Thank you for your advice. I have sent for the information per everyone's suggestion here. I do hope it sheads some light on things. My doctor did tell me i believe 3cm is the size. Although the converstion is a little fuzzy since i was shocked by what i was being told. I will get a copy of my MRI when i see the specialist. Than you again. I will keep you all posted.
Laurie
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Laurie -
definitely get back to your doc and find out the size of your AN.
Size - and location - generally dictate the treatment options available to you and you want to know what your choices are; if you have them.
Best,
Jan
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Welcome to the forum and I'm also sorry you were diagnosed with an AN, but you've come to a good place we have and are a wealth of information. Ask away....
Take care and try to keep up the physical activity as much as you can prior to surgery as this will help with your recovery.
Liz
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Before my surgery, I was given Meclizine to control the dizziness. It didn't make me sleepy.
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I spoke to my Doctor today. I have an appointment with a specialist June 11th. Dr. Charles Woods out of University hospital in Syracuse NY. From the information i could get today the neroma is at the base of my skull on the left side and is 3.5cm. I am so confused how the location has anything to do with hearing or my face. I guess I will understand when i see the Dr.
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Oh dear. How distressing for you. To have part answers. Thankfully your appt with your surgeon isn't that far off and you can get some more answers. Please ensure that you take a paper and pen, actually a friend to write for you would be a good idea. There is a list of questions floating around here that can help answer your questions for you.
I understand that our tumours are called skull base tumours as because of the area in which they reside. Not everyone's tumour is a Vestibular Schwannoma. Some have meningioma that can mimic and look like VS/AN. And as you read on here, none of us has precisely the same tumour or symptoms. Like fingerprints or DNA, no two are the same.
Virtual hugs to you, and strength to endure until you get some answers.
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Laurie .....
Here is the direct link for questions to ask physicians: http://anausa.org/questions_for_physician.shtml
Good luck ...... thinking about you!
Clarice
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Lauri, for starters I say join & get the ANA info. as soon as you can. It has lots of info and may be able to answers some of your questions.
For instance that size tumor is siting in the area doctors refer to as the base of the skull. The tumor (sue to size) will be pushing on the nerves on that side and there are many of them. The one auditory affects hearing, vestibular affects balance, then there in the tiny little are of nerves is also the facial nerve. Now the facial nerve has all these little fibers that branch out.....into the tongue, saliva glands, nose, eyes/tear glands, facial muscles, etc. One of the booklets from ANA will show the picture of all that (and it helped me understand a LOT)
Hopefully this helped some. Sure you can google Acoustic Neuromas and come up with many picture things that help show how much those buggers can affect that many nerves.
Best Wishes with everything!
Denise
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thank you for the link to the questions i should ask the DR. That is a wonderful help. I was stressing on what to ask and worried about making sure I advicate for myself in regards to the best approch to deal with this. You have ALL been wonderful. I am thak ful I found this place.
Laurie