Just found out I have AN

[ginger21]

I just saw my Dr. on Tue 11/17 and was told the reason I have been having decreased hearing in my right ear is that I have AN. I will be having a follow up MRI and hearing test in January. Then seeing the Dr. again to discuss my options. I have spent all day today on the internet look up what this is and found this forum. I have spent about 4 hours just reading everything that has been written. I must say it has been very helpful. I have already been told that sugery would be by best bet if it is growing, I am 37 years old and my Dr. thinks gammaknife is to risky. Al though after reading everything today, I may not think that. But that will be a bridge to cross when and if the time comes. I live in Sacramento Ca. and my Dr. is with the UC Davis health system. Has anyone out there had this sugery or treatment with the Dr.s in the UCD system? I would love to hear about your options.

[leapyrtwins]

Hi Ginger and welcome.

Radiation may be a very good option for you - depending on the location of your AN (the size certainly warrants it).  

Check out cyberknife with Dr. Chang @ Stanford.

Jan

[jaylogs]

Hello Ginger, and welcome to our exclusive club!! You didn't mention how big your AN is...sometimes that has a bearing on what your options are.  Please feel free to ask as many questions as possible on here, as there is a wealth of experiences out there to help you.  You mentioned that you're getting a follow up MRI? That's kind of confusing for me, unless you are in a "watch and wait" kind of deal as many people are and do. But as far as getting another MRI done 2 months after the first one is kind of strange (and expensive!)  Just not something I usually hear of, unless others have?? Anyways Ginger, good luck in all your research here and let us know if you need anymore kind of info!
Jay

[jaylogs]

Woops, my bad...as soon as I posted my first replay, I reread yours I just saw that you had a 4mm AN...sorry! I guess that's why they wanna do a follow up MRI, being it is so small. 
Jay

[Adrienne]

Welcome Ginger.

Sorry about your diagnosis.  I'm sure it was good to finally find out what was going on with your hearing, but I'm guessing you never imagined something like this.  I certainly didn't!  Take your time, continue to do lots of research.  Ask lots of questions of people here on the forum, and if you know anyone in real life (you may have never heard of this before, but I swear once I started telling people-they knew others with this and they started coming out of the woodwork).  I'm 37 too.  Was 36 when diagnosed in February of this year.  Mine was much larger than yours though, so I had less options for treatment (radiation wasn't one).

Take this time to find out all of your options, and meet as many specialists as you can.  Not sure what kind of shape you're in, but start working on balance exercises as soon as possible too-it'll help down the road.

Take a deep breath.  It'll be OK.  Lots of us have come out of this really well.  I hope you are one of them too!

(hugs)
Adrienne

[sgerrard]

Hi Ginger,

Since you have a small AN, you can take your time doing some research first. I recommend not spending four hours every day reading up on it.

I am glad to hear you are finding the forum useful. Besides being a good place to find information, it is a good place to find friendship and support.

Welcome.

Steve

[wendysig]

Hi Ginger and welcome to our group,

I'm sorry that you have an AN but you've come to the right place for information, understanding or just to vent.  I'm glad you've found the forum helpful already.  There are a lot of wonderful, well informed people here who will be happy to answer any questions or just lend an ear.  Since your AN is so small I'm glad you intend to research everything.  Unless the location of your AN indicates otherwise, or you just want to have treatment as soon as possible,  all options (watch and wait, radiation or surgery) are open to you. 

Wendy

[lawmama]

Hi ginger,

I'm sorry about your diagnosis.  I was just diagnosed on 10/15/09, so I understand what a shocker it can be.  Like others have mentioned, the good thing about this is that you have time to really explore your options.  Eventually, the right decision will come to you.  It isn't easy because all options have their pros and cons, but once you learn a lot more about all of the options it is an easier decision to make.

I have found this board to be a tremendous resource for information and support.  There are so many people here who have been where you are before and can tell you about their experiences.  Sometimes it is nice to just be be heard by people who understand. 

Anyway, nice to meet you and try not to get overwhelmed by the information on the internet.  It really will be ok!  Some of the people on this board told me that right from the start and I've hung my hat on it.  This is just a bump in the road of our lives.  I think it will just make me stronger, and I hope the same is true for you.

Lyn

[ginger21]

Thank you all for your kind and helpful words. I will give you a little back ground. I have had decreaced hearing for a few years now, mostly in my right ear. Both of my grandmothers and my dad all have very bad hearing and have to relay on hearing aids. My great grand father on my mothers side allso had bad hearing. So I have a heretary thing for bad hearing. I had just thought I was loosing my hearing like those before me and would need hearing aids, no big deal. I had said this to my Drs. in the past and they agreed with but never had me do any testing. Then this spring I got a really bad case of the flu witch turned into a double ear infection and sinus infection. The Dr. I was seeing for this flu, was new to me and I had not seen her before. After my recovery I had explained to her about my ears and the feeling of the right ear always beeing pluged and not hearing well. She thought this was due to my ear infection and sent me for a hearing test. (the first one I have ever had). The test showed signifcant hearing loss in my left and more in the right. I was then sent to an ENT and scheuled for an MRI. This was in May 2009. Well due to the loss of my insurance (my husband had our insurance and he is out of work now), and tring to work with getting new insurance and finacal problems, I was not able to get to the Dr. for a follow up untill this last Week on 11/17/09. At this point I will not know if I will be watch and wait or be recommed treatment untill I have my next MRI. What I do want to do is research as much as possible so if or when I am told I need treatment I will be able to make the best choice for me.
Right now I do not have much hearing in my right ear, I hear sound but it is very hard to tell what that sound is. I only feel dizzy if I lay down flat on my back and only sometimes, and I do not have any facial issues. Since I do not have much hearing left, I dont know if preserving it will help me. I also do not have any balance issues. What I know I do need to do is get some hearing aids. I do have decresed hearing in my good ear and do struggle at times, to hear what people are saying. In  large groups and puplic places I almost cant tell what is being said.

thank you again for everything, I am so glad I found all of you.

[Jim Scott]

Hi, Ginger - and please accept yet another message of welcome.  

As you probably already know (from your research) with a tiny AN, such as yours, you have some options, including simply 'observing' the tumor via semi-annual MRI scans to see if it is growing or dormant.  Some ANs lie dormant ('stable') for years.   Radiation, which is non-invasive, is likely a viable option for you.  Unfortunately, some (not all) doctors are wary of recommending radiation treatment for anyone much under 60 on the basis that the long-term effects aren't fully known.  Actually, they are - and with today's very precise and lower-dose radiation procedures, the risks of something bad happening as a result of radiation treatment is not a serious concern.  The days of 'shotgun', high-dose radiation that could destroy healthy brain tissue and cause problems, as well as the long-term risk of exposure to high doses of radiation, are basically concerns of the past.  It's regrettable that some doctors that deal with AN patients do not have this information - or chose to ignore it.      

You seem to have a good support system and I trust your membership here will make that even better.  Please continue your research and feel free to ask any question, here.  We're eager to help when we can.

Jim

[Kiwi Don]

Hi Ginder21,

Welcome to forum, and the exclusive family of AN'ers, I am glad you have found us.
You will find a lot info stored in the various threads here and  a group of people only too willing to help through your "AN" journey.
Take the time you have to make informed decisions, it's on your side, no need to rush things and don't be afraid to ask questions.
Also remember to take a break from your research every now and then as information overload will just confuse the issues.
Take a deep breath, keep the chin up, and look to the future.

Don

[CHD63]

Ginger .....

Just adding my welcome to this great group.  We are here to listen, share, and support in any way we can.  You have plenty of time to take your time while doing your research since your AN is small.  Location of your AN has much to do with the type of symptoms you are having so it is important to monitor them, as well.

Like others have said, do not frighten yourself reading too much too quickly.  Take breaks and time off in between your search for answers regarding treatment at some point.  Actually some ANs grow so extremely slowly that you can safely watch and wait for quite a long time.

Keep posting to let us know how you are doing. ..... and feel free to ask any questions you may have.

Clarice

[Tricia (horsekayak)]

Hi and welcome to the forum,

This is one of the best places I ever found after my diagnosis (which was in August of this year).  I have spent a good bit of time here and on the web in general, researching, reading, emailing. A few months ago I could not have imagined feeling so comfortable with how I feel about all this--yep, comfortable about ALL of it, even the sorrow, the physical "blips', dizziness,  the "why me", and  the dark  humor in some of this.  This discussion forum is one of the main reasons I've been able to reach at least some form of sanity after learning about my AN...

One of the most important things I've learned is that you need support-- from friends, family, and from people like the ones here, who have been through (and are going through) many of the things happening to you.  The follks here will understand and listen to every one of your questions, rants, and observations.  Find (and keep in close contact with) people who will let you be you--whether you are angry, confused, sad, happy, dejected or triumphant.  Keep a journal, start a blog, talk daily with at least one good listener/supporter, keep busy, exercise, eat well , and keep comiing back here--every day, just like brushing your teeth! 

This forum is like a great big vitamin for my soul, and my wish for you is that you come to feel that way, too.

Again, welcome, and you are in my thoughts.

[suboo73]

Hi Ginger 21,

Welcome! So glad you have found this Forum - there are FANTASTIC folks here who will support you in any way they can!
Please take your time in your research - i am in W & W and still researching after a being diagnosed over one year ago.
My sister is here, too - we also had some family history of hearing loss, so the first docs i visited just told me i was getting 'older.' - Not true!
I have elected W & W and pay attention to any changes in symptoms.

Please continue asking questions and doing your research.
There is a lot of information here in many different categories and it takes awhile to read it - so take a break when you need it!

Take care and keep posting.

Sincerely,
Sue

[DR]

I'm sorry to hear about your AN, but very glad you found this forum.  As others have mentioned in earlier posts, time is on your side (so says the Rolling Stones) so don't feel pressured into making a snap decision.  Research all the options, look at the pros and cons of each.