just diagnosed and scared

[Glssliperr]

I was just diagnosed with a 2cm AN. Doc says it has to come out and I agree, but I am terrified of brain surgery. What should I expect? I haven't really had a whole lot of time for this to sink in and will probably be scheduled for surgery within the next 8 weeks.

[Echo]

You don't mention your age, but if you are not to young, then radiation may be a very viable option for you instead of surgery.  Your AN at 2 cm certainly is at a size where radiation would work.  I would recommend having more than one consult and if you do decide to have surgery, make sure your surgeon has plenty of experience with AN's.  These are complicated little growths and you want someone helping you with lots of experience specifically with AN's.

Cathie.

[john1455]

Don't automatically take your doctor's word about what treatment mode to take as gospel until you do the proper research online. The more you learn about ANs and the different treatment options available, the less frightening it will become. Don't forget, ANs are benign tumors and grow very slowly and unless it causes brain stem compression, they are seldom life threatening. 2 cm is considered a medium size tumor and that is well within the range for stereotactic radiosurgery (radiation). My AN was 1.9 cm when I was first diagnosed and it was about 2 cm when I had Cyberknife.

Read all the available information on anausa.org's website (homepage) to get a good understanding of ANs and the treatments available. Also check out You Tube. Type "acoustic neuroma" in the search box and you will get a bunch of good information from real people about their experiences and what they went through as a result of their choice of treatment. Here is a list of really good You Tube videos that I found:

http://www.youtube.com/watch?v=-IqAG_RnahE&list=PL685BC1C503CB2A81
http://www.youtube.com/watch?list=PL685BC1C503CB2A81&v=FjqD6dfl9j8
http://www.youtube.com/watch?v=M_dYo-rsQUA
http://www.youtube.com/watch?v=tZ2HSsU-bPM
http://www.youtube.com/watch?v=ZbS4K9ENMAg
http://www.youtube.com/watch?v=r9wDN6Oky3s
http://www.youtube.com/watch?v=GKSdcvg3bHI
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/

Surgery may sound great to some people because of the idea that it is removed from the body but you will find from your research that removal of an AN is not like having an appendix out. If you have appendicitis and it is surgically removed, then all the pain goes away and the offending structure is completely out of the body. Not so with acoustic neuromas. After surgical removal and even after radiation, any symptoms you had before treatment may remain (loss of hearing, tinnitus, and/or balance issues). With surgery, you have the peace of mind of knowing that there is no longer any tumor in your body. With radiation, you have the peace of mind in knowing that further growth has been stopped and hopefully the tumor will undergo necrosis and die. In both cases, tumors can recur so do not think for a minute that surgery will mean no more problems in the future. The best thing to do is to get opinions from neurourgeons who treat BOTH ways - surgery and radiosurgery for unbiased advice. If you are in the proper age range, then you owe it to yourself to consider all available options and not just surgery. As a result of my research, I totally eliminated surgery as an option for me because of all the bad side effects I had read about. I placed the quality of life at the top of my list and as a result, surgery was removed from my treatment options list.

The You Tube videos will tell you exactly what you can expect from the various treatment options and the hardest part will be to decide which one will be best for you. And remember anausa.org's advice - choose a physician and facility with a lot of experience, after all, it is brain surgery and it is your brain that will be worked on.

[Heresrose]

I agree with everyone here. Please don't jump into surgery without first doing your research and weighing your options. The doctors tend to downplay the risks when they suggest surgery. Especially facial paralysis.  Take your time and make a decision that you can live with.

Rose

[Ned]

My initial team of doctors tried to lead me to surgery, but I took a deep breath and really dug into my research and doctor interviews. I, initially, felt that I just wanted this thing out of my head, but learned that even surgery doesn't guarantee that there won't be some cells left that could regrow. Study, talk, read and then do more of the same. When peace comes you will know the right decision.

[Glssliperr]

I'm sorry I didn't mention before,  i'm 28. I have a 1 year old and I an supposed to be planning a wedding this year, not brain radiation/surgery. I apologize about sounding a little jaded,  but I an dealing with a lot of anger about this.  Through my research,  I honestly feel like the retrosig would be the best option for me.  My doctors said that my pregnancy was probably a reason for the quick growth.  Has anyone ever dealt with pregnancy after AN treatment?  I'm still young and I want one more, but do I put myself at risk for regrowth if I don't have it completely removed?  I also just found out that my grandfather had NF. Not sure if type 1 or 2. But is anyone familiar with AN relation to NF?

[Echo]

Your anger is certainly understandable and I doubt any one of us has not faced the same emotion at some point in this journey.  Allow yourself to feel the emotion so you can deal with it, and then hopefully you can move forward and put both the anger and your AN behind you! 

I'm certainly not qualified to tell you radiation cannot be done at your age, but I personally would think that you are on the younger side where surgery may be the better choice.   Your specialists are the ones to guide you through this.  Just make sure that you deal with Dr.s, who have lots of experience dealing with AN's.  You want the best possible outcome you can have and you will want the best possible surgeons to look after you.  There are lots of success stories here, so keep strong and stay positive.

Cathie.

[am2lady]

Hi, I'm experiencing some of the same emotions. I was diagnosed in May 2013 with a 1.9x1.9x0.9. NOthing was done at the time b/c I didn't have insurance. I'm 38 and married with 2 children. My symptoms are really bad: headache, eye is burning and tearing, balance issues and tinnitus. I have NO idea what to expect when I get my next MRI done, which I hope will be soon after my PCP appt. in May. I have a strong support network, which helps.