I was just diagnosed with an AN found on a MRI looking for something else. Every day since the horror story gets worse. At first I was relived that it was benign. I still am however some of the things I have been told by the ENT have given me the wake up call that I am in deep poo-poo. My visit to the neuro is 10-25 so I wanted to be better prepared than I have been so far. I have been reading the posts and I am now terrified. I already suffer since 19 with depression. This seems to be inevidable. My hearing is not affected yet. The size is .04 of the .08 width of the acoustic canal. It is a medium tumor. I am 51 year old wife, mom, and grandma. I work and babysit my grandchildren. How is my life going to change? Will I be able to work? Drive? What is SSD mentioned in some posts? Thanks for any help. My mind is racing and anxiety is taking over.
I'd say "Welcome", but you don't want to be here! I am a newcomer to this forum, too. I have my MRI on Monday, suspected of AN, but not sure until the MRI results come in. I've had some time to read up on acoustic neuroma and find out what's ahead, if it is an AN (AN=Acoustic Neuroma). You, however, have just had this sprung on you, and being told that you have a brain tumor is not good news to be sprung on you.
However, it is the best type of brain tumor to have. Since it is benign, you don't have to worry about chemotherapy, it spreading to other organs, and dying from it. That's the first good news, and it's good to remember that!
I'm not sure about the sizes - how many cm are they? However, a medium tumor is treatable! If it is 3 cm or less, then you can consider various forms of radiation therapy to destroy the tumor and shrink it. It has the benefit of not opening up your skull and is much less invasive. If it's over 3cm then you're not able to take advantage of radiation therapy. After being radiated, the tumor swells before shrinking. At that size, the swelling can cause pressure on your brain stem. You would need surgery to remove it. There are various types of surgery as well, some make it easier to remove a large tumor but sacrifice hearing, others will attempt to save your hearing but make it harder to remove a large tumor. Your neurologist will be able to discuss options with you. You're very wise, however, to read up on this before hand, so that you aren't overwhelmed with the information and can retain more of what he or she says.
I'll mention something that was mentioned to me when I started reading here. There are many people who have radiation therapy and surgery and do exceptionally well. Unfortunately, these are the people you don't read much about. They have the diagnoses, all of the appointments, treatment, recovery just like everyone else. However, once they are through it, all they want to do (and quite understandably) is put it behind them. They don't want to talk about it, they just want to get on with life and forget about it. As a result, you'll read far more from people who have continued symptoms and need support than you will read about those who don't. That's just the natural way that people work. There is a site that has some good stories from people (
http://www.michiganear.com/library/A/acousticneuromastories.html) and it's interesting to read through what happened. The best thing to remember is that AN surgery has been taking place for years. Radiation therapy is newer, especially with some treatments like Gamma Knife. However, these are having very good results. Whether you opt for surgery or radiation is up to you and your neurologist (and your AN, too), but with either treatment there are good sides and bad sides, but successes! Incidentally, if your tumor is 1cm or less, they may want to wait and watch it without treatment.
I can understand your thoughts right now. It's scary to hear tumor, it's even scarier to hear it used with the word brain, and you don't have enough information to know what is going to happen to you. Just remember, you will read 100x more "horror" stories than the good ones, but in fact it's the other way around - there are 100x more good stories!
You asked about SSD. That stands for Single Sided Deafness. In some cases, in order to remove the tumor they must remove the nerve. A bit of information for you:
AN is a benign tumor, which grows around the 8th cranial nerve. This nerve runs from the ear to the brain stem and is responsible for hearing and balance on each side of your head. Once inside the ear it spilts into two sections, one going responsible for hearing and one responsible for balance. Running inside the ear as well is the 7th cranial nerve, which controls the facial control on the same side of the face. These 2 nerve bundles go through a very small opening in the bone into the ear. The tumor is more appropriately called a Vestibular Schwannoma, becuase it starts in the vestibule of the ear and is a neuroma made up of schwann cells. What are schwann cells? Think of an electrical wire. There is a layer of plastic insulation around it. This makes sure that the electricty doesn't escape as well as other electricity can't get in. These scwann cells are like an onion skin wrapping and insulating the nerve. Without them, where the 7th and 8th nerves for balance/hearing and facial control meet, they would short out. Every time you heard a noise your face would twitch, and every time you blinked you would hear some strange sound. In the case of an AN, these scwann cells grow out of control. Fortunately, they grow very slolwy in almost all cases. It takes years to develop a tumor that is identifiable. It's not like cancer where the cells can grow rapidly and spread. These cells stay put but grow. In rare cases they can grow quickly, but very rarely. As the cells grow, the coating on your nerve gets larger. They take over the blood supply from the nerve and start to constrict it. When this happens, your hearing decreases and you can have balance problems. As it continues to grow it leaves the ear and grows along the nerve to the brain stem. As it leaves the ear it pushes on the facial nerve. Fortunately, this nerve is very resilient to slow strethcing and pushing. As it gets squeezed more and more, however, it can become thin and you can start to notice facial problems like pains, tingling, droopy eyebrow, vision problems, etc. As the tumor grows towards the brain stem, it can push it out of the way. This can cause headaches, etc. However, even a very LARGE tumor that is impacting the brain stem can be removed and the person goes on to live a happy life. Yours is a medium one, so I don't know how far it has grown.
As I've read, the size of the tumor doesn't relate to the symptoms. A small one can cause a total loss of hearing and a large one might now impact the hearing very much. However, now that you have identified that you have an AN, you can get treatment. You also have time to do research and find out what treatment is the best for you. It is going to change your life, but maybe not in the extreme extent you are worried about. Just remember that for every person who has ongoing problems with their eyes, facial nerves, headaches, etc., there are many people who don't.
The best thing to do right now is to research, read, and talk to people. There are a lot of people here who have a lot more knowledge and experience than I do. I hope that my description is accurate. It's how I understand it, but I, too, am just starting out here.
Most importantly, there's a great support group here! Don't be afraid to ask questions. The feelings that you're going through are shared by many!
Keep us informed, and all the best to you!
John
