Just Found Out I Have An Acoustic Neuroma

Hi, I am 29 years old and I have an acoustic neuroma in my right ear. I have had a very small amount of hearing loss in that ear, in fact my doctors are surprised that I could notice the hearing loss as it is still good enough to pass a hearing test. My right side of my face is a little tingely/numb and my right side of my tongue is starting to go numb also. My dr said it is large and is pressing on my brain stem. He told me the best surgery for me would be translab, which means losing all my hearing. I am sad about this because I mostly hear fine now. I am very scared, I go in on January 14 for surgery.
canyongirl canyongirl
31-35, F
5 Responses Dec 10, 2012

Hi, I am sorry you have to go through this. I am doing great! I am completely back to my old activities. I've been rock climbing, canyoneering, I've gone to loud concerts. I'm looking forward to skiing this winter and I have no doubt that I will be able to do as well as before the surgery. My only complaints are the loss off hearing is still difficult to get used to, and I am still a bit unbalanced but I feel like I'm doing really well. I have a blog

Stephaniesacousticneuroma.blogspot.Com

I would love to answer any other questions you have.

I\'m so glad to hear you are doing so well! I will be going to your blog too. Thank you!

Hello,
I was wondering how you are doing after your surgery. I recently was diagnosed with an acoustic neuroma. I am weighing all my options at this time. Hope you are better.

Hello!

I am 30 years old and am 9 weeks out from having my 3.5 cm acoustic neuroma removed. Because of the size, I too had to have my hearing as well as my balance nerve severed. I was really sad about the hearing loss. I live in Boston and had to wait 3 weeks for the top surgeon to do my surgery. I didn't have any obvious symptoms until one afternoon it felt like someone was splitting my head open with a hatchet, I lost my vision, I had horrible facial pain, and was vomiting. The facial pain was the worst because it was nerve pain that was unbareable. I also had trouble swallowing and balance issues that appeared at the same time as my diagnosis. My surgery lasted 12 hours and I had 2 surgical teams. The reason they had to sever my balance and hearing nerves was because they wanted to preserve my facial nerve. The doctors wanted to ensure that they did everything to cause as little damage as possible to my face. They explained to me that the nerves are plump like a shoe lace. The acoustic neuroma presses against them causing them to flatten like a ribbon, thus making them very fragile. This fragility makes for an extremely painstakingly long process of removing the AN millimeter by millmeter with a microscope. I am very lucky to have had no facial paralysis, even in the immediate days following my surgery. I was however left with a few complications, as we all have been. For me I have the obvious complete hearing loss in my right ear, the right side of my tongue is numb, they had to leave a thin layer of the AN behind in order to not damage the facial nerve, and the last complication is that I had to have a shunt put in two days after my surgery. This resulted in a fully shaved head. For me this has been the most difficult thing mentally for me to deal with. My hair is growing back now, so in a couple years, I know I will look back on this time and be glad it's over. The shunt saved my life, so for that I am thankful, but it doesn't make it any easier. It is strange being thrown into this new world where I have to have something medically maintained for the rest of my life, but I thank my lucky stars everyday that I'm here for my 3 and 4 year olds. I feel extremely lucky and thankful to have such great surgeons close as well as an amazing support system. Really it has been a crazy two months, but I have a lot of love around me, and that makes the bad days not seem so bad. Good luck to you, and if I can be of any help here let me know. XO

I ALSO AM IN BOSTON AND HAD DONE AT BMC.....

Please visit www.anausa.org. This is the website for the Acoustic Neuroma Association and you will find a wealth of information there including a list of doctors and medical facilities experienced in treating acoustic neuroma - it would be a great place to start if you are looking for second opinions. You'll also find information on symptoms, treatment options and support. We have support groups that meet at varying times throughout the US as well as a "Willing-to-Talk" list. If you sign up on the website, you will receive an information packet that will have even more information and provide access to these support options. There is also a discussion forum, which is like an online support group. If you have questions specific to your case - ask them there! Or you can search for terms that have been used in your case and be directed to existing conversations being held on that subject. I hope all of this helps!

Get several opinions, it may be possible depending on your case to combine it with radiosurgery as well to try to preserve hearing especially since you still have it. Look up the acoustic neroma groups on the net.