Newly diagnosed AN 1.4cm

[Jim Scott]

Donna:

Hi, and welcome to the discussion forum. 

I can't add much to the good advice you've already received - the only kind we give here   but I trust you'll do the research, not panic and eventually make an informed decision on how to address your AN tumor in a way that is most practical and comfortable for you.

Some folks freak out at the thought of microsurgery, which is understandable.  Some just want 'that thing out of my head' and are almost eager to have surgery.  If size permits, some AN patients opt for non-invasive radiation surgery (which isn't really surgery) as a way to kill the tumor and, hopefully, avoid some of the normal risks of microsurgery. 

My AN was so large (see my signature) that surgery, quickly, was my only option.  As I was deeply concerned with possible facial paralysis post-op as I had no facial or eye movement problems going in.  My surgeon decided to remove only the parts of the tumor that weren't involved with facial nerves.  He called it: 'de-bulking'.  The surgery went fine.  I was home in 4 days.  Three months later I began a series of 26, short-term (20 minutes), low-dose radiation treatments specifically aimed at the remaining tumor and intended to kill it's DNA and prevent regrowth.  They were tedious but otherwise uneventful.  A follow-up MRI in December showed the beginnings of tumor necrosis.  I'm hoping an MRI I have scheduled for late April will show further necrosis.

I mentioned all this to reassure you that you will have options in how you address this medical challenge.  Surgery, radiation, 'watch-and-wait, whatever, it will be your choice.  We stand ready to advise and certainly sympathize as well as to simply be good listeners for you.

Jim

[harrylewis01]

Nancy,
My wife is 50 and just diagnosed with AN.
She is seeing a surgeon on Tuesday.
Can you tell us about your experience and why you chose the treatment you did?
Her symptons were tinnitus and some dimeshed hearing in 1 ear.
She had a MRI for a hemangioma in her mouth and the AN was a incidental finding in the MRI results.

Thank Yoo

harrylewis01@yahoo.com

[Captain Deb]

Hi Donna and welcome to our very exclusive club.

I researched my options and chose surgery for my 1 x .6 x .7 cm tumor for a number of reasons. A. I just wanted the darn thing gone--I'm an instant gratification sort of person. B. I had a cousin in the LA area who could take care of me post-op. which meant having surgery at House Ear Institute--one of the best places in the world to have the surgery.  C. I had pretty serviceable hearing and I wanted to try to save as much of it as possible.

I ended up losing all the hearing on the AN side and began having debilitating headaches 10 days post-op, which escalated during the next 6 months to unbearable daily migraines--with my surgeon 3000 miles away.  I live in a very small town with limited health resources. My life was a nightmare for the next 3 years. I was unable to work and spent most of the time in bed. At about year 3 1/2 they started to taper off somewhat and I finally found a doc at a headache clinic 4 hours away who was able to give me some relief. I'm currently on 2 headache meds, sleep meds and 2 anti depressants. I'm able to work about 1/4 time and am currently fighting for my disability rights with social security.

I realize that I am an anomaly surgical case, but I made the best choice I could at the time. I most definitely do NOT fault my excellent surgical team, who managed to leave my facial nerve unfazed. They were as stumped as I was about the headaches.

Definitely research GK or CK as an option while your tumor is still small--I would have that second MRI at 4 months and again at 8 months.

Good luck with your decision and keep us posted!

Be well,

Capt Deb

[nancyann]

Hi Harry:  Don't know if you meant me Nancy, or one of the other Nancys,  but I e-mailed you a response.

Best wishes, Nancy

[Evan]

Donna:

Recently, I was diagnosed, or so I thought with an AN of about your same size.  I went to to separate highly regarded surgeons with my MRI's without telling the other that I had gone.  Both of them said that they did not think I had an AN, but more importantly, especailly with your situation, they both said that even if they thought that it was an AN, based upon my lack of symptoms, very minimal hearing loss, they would do nothing, and simply repeat the MRI in a couple of months.  And, both of them also said that if treatment was necessary at that point, they would recommend radiation. 

Both of these physicians were in NY, and only one of them does radiation (GK), which made me feel a lot better about my prospects, even if I had an AN. 

Where are you located?  You should certainly have a consult with a neurosurgeon, but make sure he has experience in AN's and do some research.  There is plenty of information easily accessible on the web and the more knowledge you have, the better questions you can ask.

Good luck.

Evan

[littlejep]

Hi Donna!

   As others have said, weigh all your options. I live in the Harrisburg, PA. area, and had my AN removed at John Hopkins in Baltimore. Another of the finest hospitals in the nation! I would suggest you look at their website and review their information on Acoustic Neuromas and the different ways to treat it. I found it excellent and quite helpful in giving me a handle on the subject to go and ask questions of my doctors about specifics on the surgeries and the possible side-effects, etc. Also, the website will give you excellent background on their staff of specialists who perform the treatment of such tumors. I'd be glad to share with you my experiences if so desired. In the meantime, i thought it would be best to suggest what to do first. I would not want to influence you in any way on making a choice. That is up to each individual who has an AN.

Good luck!
Frank

[Omaschwannoma]

Hi Donna,

I am a post surgery ANer (1/2005) and for over one year now I have been teaching yoga at our local fitness club and privately.  I am deaf in my AN side, my headaches are minimal, recently have been diagnosed with nystagmus (consistent with AN) and all in all doing well.  I can drive at night, but I have not done long distance only in-town.  I have balance issues when it's dark, "fishbowl head" at times seems to be related to being over tired, but don't think there's any difference (balance I mean) with those that have chosen radiotherapy as once the nerve is compromised there is not much chance at recovery.  Hope my story helps and I do think researching ALL options is a good idea as ultimately the decisiion is yours.  There is no RIGHT decision here. 

[donna lee]

I have actually decided to wait and observe, at least for now. I have another MRI scheduled in August which will be 6 months after my initial diagnosis, I didn't want to wait a year for another one.  My head and neck surgeon agreed with my decision, said if it were him he would choose to wait considering the size.  I am content with the choice I have made and most of the time don't even think about it.