Surgery vs radiation decision

[SheriG]

Hi All,

I was just diagnosed by my ENT yesterday with AN. The tumor is only 1.5cm but I’ve been having debilitating dizziness and fatigue. So watch and wait isn’t really an option. Although I have some hearing loss and loud tinnitus I can live with that. I can not even function right now with the fatigue and balance issues.

My question is what people’s experience has been with the balance issues after treatment. I don’t see how it will be resolved if radiation basically leaves the tumor there. If you are someone who had major balance issues before treatment could you please let me know what your treatment was and how your balance is now? I don’t have room spinning vertigo. More like I’m off kilter and always lurching to the right. And even one flight of stairs makes me light headed and I have to lie down. I feel like I now spend half my day lying down! Frustrating as I’m sure you can all relate. Thanks for any advice.

Sheri

[Matthew]

Hi Sheri,
It sounds like your dizziness is really taking a toll on you. You must be very frustrated at this point... it can sure be scary, especially at first. As you start doing research, you will likely learn that there are many different stories about these AN tumors and each person's experience is different. For starters, it's good that your ENT was diligent enough to check you for an AN. Based on what you've said it sounds like your balance is your main concern at this point, and of all the symptoms you are having it is the balance issues that are effecting your life the most. With that in mind, I would ask your ENT or primary care provider to order vestibular testing for you (often referred to as a caloric test or balance test). The results of this testing can provide information regarding the health of your balance (vestibular) nerves, and is helpful in predicting outcomes of different treatments.
As you move forward with your planning and research, please keep in mind that the vast majority of AN patients have good outcomes no matter which course of treatment is taken (surgery, watchful waiting, radiation). Use this ANA website as a starting point for your research, get several opinions from well qualified doctors, and ASK QUESTIONS. Somewhere on the ANA website is a list of questions you should ask your doctors, it is a good list and it also helps you to start prioritizing what is most important to you moving forward.
Keep us all up to date, ask us a lot of questions and stay optimistic.
-Matt

[notaclone13]

I found this article on the Mayo Clinic website and found it to be a very good and fact based summary of various treatment options for ANs. Perhaps it will help in the decision making process.

 https://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/acoustic-neuroma-treatment-and-quality-of-life

[KristenWS]

Sheri - Like you, it is the balance issues, clogged ear, fatigue and dizziness (and associated anxiety) that is bothering me the most.  I have just be diagnosed with AN, 1 cm and have my first otologist meeting on 7/19.  I feel like if I wasn't having the symptoms or was able to feel more like myself, I would be able to face this next stage better.  I am extremely depressed because of all of this and so very worried.  Feel like my life is going to change forever.  Watching this thread in hopes of some guidance.  Good luck to all.

[Blw]

Your balance issues will improve greatly as your brain adjusts. I had to walk by looking only 5 feet ahead, if I looked farther I would stumble. I couldn't walk in a dark room. In fact, balance was the symptom that made me go to the doctor. I thought I had a middle ear infection. It was terrible.

[KristenWS]

I know that everyone is different but on average how long does that take to regain?  That is really what is most disconcerting to me and builds my anxiety, which then spirals the symptoms even more.  Anything I can do, exercises and so on to have it progress more quickly?  Today was a tough day, first time I have had tinnitus around the clock but again, its the balance that makes me most uncomfortable.  Thank you for any guidance you can provide.  I was just diagnosed last week and I am a mess.

[Blw]

I think a couple months for me. A round of steroids may help. I was in Sedona on vacation when my symptoms came on suddenly.

[KristenWS]

Thank you for sharing your experience, I am sorry that happened while you were on vacation. 

 I have been on prednisone for 20 days and while I am much better (don't need a walker to walk) certainly not myself and don't go far. 

We are supposed to leave in a week for a long ago planned lake vacation where literally 98 percent of our time is on a boat or swimming.  Very anxious and even wondering if I should go.....this is so very debilitating. 

Continuing to follow the thread and thanks to all.

[Blw]

There is not really a bright side to look on, but you know what is causing it. Your tumor is small enough to allow multiple treatment options. While it could be hard moving around, anything is better than sitting around dwelling on it. It is not cancer and it can be treated with a very high cure rate. Surgery obviously is a big step, but radiation is no big deal--done in a half a day, outcomes are similar in both. You might want to check and see if there is any medication you can take to alleviate the dizziness, or if a couple of sessions with a therapist (vestibular?) could help.