General Category > AN Issues

My MRI says acoustic neuroma 7mm

(1/1)

Andrewsworldrocks:
Hello all, I'm andrew and i was recently diagnosed with a AN. I have been feeling crappy for a long time. Dizzy confused, really bad ringing in my ears, my vision gets blurred and double vision, severe neck pain and headaches. I'm quite scared at this point. My regular doctor referred me to a neurologist. But, my appointment isn't for a couple more weeks. I guess my question to all is; can you please share your experience and what to expect. Any info will help. Hard to talk to family who don't understand. My doctor didn't share much other than refering me to a specialist and telling me what i have.

Thank you,
Andrew

Ned:
Sorry to hear the news. Your neurologist will describe what the tumor is and hopefully explain all 3 options. For that size tumor,.  more than likely your choices will be watch and wait or radiation. There are advantages and disadvantages to each option. Gathering information and interviewing doctors will be the next step. This forum will be of immense help with all your decisions, we all have been where you are. Most members of your family and your friends will have a difficult time understanding what you are going through, that certainly was the case with me. The more I learned, the better I felt about treatments. I was ill prepared for post treatment and surprised at times, now 11 years later.  Good luck

john1455:
When I found out I had an AN, I scoured the internet to find out everything I could about ANs and what treatments were available. I found this site (ana.org) and read just about every post. You Tube also has a lot of information, especially about people's experiences (how the AN affected them as well as the side effects of the treatments they chose). The more you learn about acoustic neuromas, the less frighten you will be because knowledge is power. Doing this type of research will also better prepare you for what will come when being treated as well as coming up with questions to ask your doctor(s). So use the two weeks prior to your appointment to learn all you can about ANs.

When I read about the treatment experiences of others and its effects on them, I made a mental note and asked if I would be willing to go through the same thing. Doing this will help guide you to learn what options will be best for you. One thing you should keep in mind is when you have consultations, avoid doctors  who only do one type of treatment because you will be given biased advice. That is not what you want. You want a treatment that you are comfortable with and what is best for you and not what the doctor is comfortable in doing.

Your primary care physician didn't share much info because ANs are supposed to be rare (so why do so many people have it, lol?). Your neurologist should answer all the questions you have but if you do your own research ahead of time, you probably will not have that many to ask. One thing I found out is there is no correlation between the size of the AN and the severity of the symptoms it causes. Your 7mm AN is classified as small so you have lots of options. Oh, and another thing, you want someone or someplace that has a lot of experience treating these things; after all, you don't want anyone working on your brain with little or no experience. You will find lots of help and support on this forum.

The problem I have about Watch and Wait or Observation is if you wait too long and start to lose your hearing, it will not likely return after treatment (based on my research). My AN was 21mm when I was treated and I had 70% hearing loss in my right ear and I do not expect to get any of that back. ANs are supposed to be very slow growing tumors but there are cases out there that showed very fast growth over a short period of time so monitoring your AN with MRIs will be very important.

LakeErie:
AN's are rare so not many primary care physicians are versed in their speciifics. Referring you to a neurologist is probably not going to get you the answers you need, unless you meant to say a neurosurgeon. You need to consult with a major neurosurgery center that has experienced skull base surgeons and experienced radiation specialists. You can then weigh the recommendations they give you. You have a relatively small tumor at 7 mm and the most important factor in determining a successful outcome from treatment is the tumor size, according to Harvard Medical School, so tumor size is in your favor. The second most important factor is the experience of the surgeon, and you control that factor in your selection process. Good luck.

Andrewsworldrocks:
Finally have my appointment scheduled for the neurosurgeon. Glad there is a place like this to type and vent. Thank for those who resonded to my post.

Navigation

[0] Message Index