ANA Discussion Forum
General Category => AN Issues => Topic started by: aj44 on October 16, 2009, 06:49:45 pm
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Hello.
A few months ago I was told that I had an AC. My operation is scheduled to be in a few months. They will have to operate from behind the ear as the tumor is too large for radiation treatment and to operate through the ear canal.
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aj44 .....
Welcome to the Forum! You will find here a group of caring, supportive people as you go through this process. If you have questions/concerns, be sure to post them and you will have many thoughts and opinions given.
Best wishes.
Clarice
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Hi, aj and welcome to the Forum ;D
You don't have an AC, you have an AN (acoustic neuroma). The surgery type you are referring to is retrosigmoid and I had it myself a little over 2 years ago.
As Clarice said, we are here to support you, answer your questions and concerns, share our experiences, etc. Please don't hesitate to ask us anything - don't hesitate to vent either, we can all relate to what you're going through.
Mind if I ask where you're having your surgery? and who your docs are?
Best,
Jan
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Hi.
Yes, my mistake. I meant to type AN not AC. :-[
I am Irish so I will have my operation in Dublin.
My acoustic neuroma is 4cm.
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Hello AJ - and welcome. Of course, the fact that you have an acoustic neuroma is certainly not welcome for anyone, but I'm pleased that you found the ANA website and decided to register and post.
At 4 cm, your AN is large, as mine was. I also underwent the 'retrosigmoid approach' removal surgery, plus follow-up irradiation to destroy the remaining tumor's DNA. It all went quite well, as I trust your surgery will. We're an eclectic group from all over the U.S. and Europe, including the U.K. and we stand ready to answer whatever questions we can (we're not doctors) and offer our suggestions when appropriate. There is a wealth of experience here (as AN patients) offered by caring, compassionate people with a positive attitude and a keen sense of humor. Please feel free to use the forums as a resource as you prepare for your upcoming surgery.
Jim
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Welcome! ;D
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Thank you all for your kind words.
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The neurosurgeon told me that I will lose all of my hearing in my right ear (as that is the side where the AN is located). He also said that there is a chance I might get Bell's palsy and that it could be permanent as there is no guarantee that the nerves will grow again.
I have tinnitus but the worst thing of all is the constant pain of neuralgia. It even pains me when I put my face onto a pillow and try to sleep.
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Welcome!
I'm new to the forums as well. I just had retrosigmoid surgery to remove a 5cm AN on Sept 22nd, 2009.
I don't know if it will help you or not, but I've been documenting my experience on my blog http://buginthebrain.blogspot.com (http://buginthebrain.blogspot.com) . One post in particular that might be helpful is from when I went to the neurosurgeon's for a pre-op visit - http://buginthebrain.blogspot.com/2009/09/answer-list.html (http://buginthebrain.blogspot.com/2009/09/answer-list.html).
Everyone here seems very nice and there is a ton of great info!
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AJ44 - I am glad you found this forum. It provides a wealth of information. Take time to read, but do take breaks from it as it does get overwhelming! Your tumor is slow growing, so try to relax and take deep breaths often!
I too, had a large tumor. Please ask questions...we are here to help you on this journey ;) Alicia
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Hi AJ,
It's great that you have found this forum and you will get all the support you need here. You will get through it like many others have. There is a great source of information here that you can read and the people here are great. Best of luck.
Vivian
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welcome to our family and rest assured you are not alone in this AN journey
JO
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The neurosurgeon told me that I will lose all of my hearing in my right ear (as that is the side where the AN is located).
aj -
I lost all the hearing in my left ear as a result of my surgery (my AN was on the left). Nine months post op I had a BAHA implant - BAHA stands for bone anchored hearing aid - and it has helped me tremendously. There is also a hearing aid called a TransEar that has gotten very good reviews. I don't know if they have either in Dublin, but you might want to ask your surgeon.
Jan
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The neurosurgeon told me that I will lose all of my hearing in my right ear (as that is the side where the AN is located).
aj -
I lost all the hearing in my left ear as a result of my surgery (my AN was on the left). Nine months post op I had a BAHA implant - BAHA stands for bone anchored hearing aid - and it has helped me tremendously. There is also a hearing aid called a TransEar that has gotten very good reviews. I don't know if they have either in Dublin, but you might want to ask your surgeon.
Jan
Hi. Thank you very much for the info. - AJ.
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Hi AJ,
Welcome to the forum, and I hope you can find what you are looking for here.
There is a wealth of info and whole heap of caring people willing to share and support you on your journey.
Regards from the South Pacific
Don