Just Diagnosed

[lizzieb]

I just found out today that I have a 1cm AN.  I am being referred to Dr. Bartel(s)? in Tampa. My ENT is recommending surgery but it seems a number of people on the site are in wait and see mode.  My physician indicated that he would recommend that only if I was at an advanced age.  I was just wondering if those of you who are waiting could tell me why.  I do have a high frequency hearing loss and constant ringing and a feeling of fullness in my left ear.  Tests indicated that my balance has been affected although I haven't noticed that.  I am feeling overwhelmed with all of this.

[Larry]

Lizzie,

I agree with Bruce 100%. he's spot on the money with everything.

At the end of the day, it's your body and you have to be comfortable with any watch and wait or surgery or radiation. Most people are at ease once they have made their decision. You have time so use it to research and get other opinions. I think House will give you a free report if you send them your scans.

Laz

[Sue]

H Lizzieb,

I am sorry you have an AN, but I'm happy for you that it has been found before it grew to be a large tumor.  I have most of the same symptoms, but mine was 2cm before the drs figured out what I had. The fullness in the ear thing has subsided, for some reason. That makes me happy. At least something went away!  Anyway, this is a great place for information and support and perhaps even making new friends.  And when you get mad, or sick and tired of the whole thing and need a place to vent - then this is the place for that too.  We've all been there, believe me.  I still feel like I've stepped into some alternate Universe situation, and that one of these days I'll step out of this one and be back to my other "normal" life. So we all have pretty much shared that overwhelming feeling of "What The Heck Is Going On Here?", moments.  I wish you the best of luck in your treatment (whatever and whenever that might be) and recovery. 

Sue in Vancouver USA

[BusyBonnie]

My situation is similar to yours. I'm not sure how old you are but I'm 35 and my tumor is 1.1 cm. I have just decided after a LOT of research to go with Gamma knife. My reason for not waiting is because it has just started to cause some minor vertigo and if it gets larger and I have radiosurgery it could cause worse symptoms with the temporary swelling that happens after plus my doctor told me if I had severe vertigo he would recommend invasive surgery so that the balance nerve could be cut. I do not want invasive surgery because of the recovery time and my life just does not permit that at this time.

Research a lot and this site is an excellent place to start. I started at thinking I wanted wait and watch, then wanted surgery and have now decided definately on radiosurgery. I personally needed a decision and I needed it fast. I have other things in my life that are a priority and I wanted this out of the way so I could move on. I will have to watch it to make sure it dies and never grows back but I'm ok with that. It's overwhelming at first but the people here will help you and the more research you do the better you will feel with whatever decision you make. Good luck to you and we are here for you.

Lana

[Derek]

Hi Lizzie...

Just throwing in my 'two pennyworth' (2 cents in USA speak!) and totally agree with the advice already given by the other members. You only have one opportunity to make the right decision first time and in your case you have plenty of time to undertake a lot of research before making your ultimate choice. In my case my AN is 2cm and I have been subject of 'wait and watch' for almost 5 years during which, fortunately, my quality of life has been excellent. When and IF the time arrives for me to have ultimate treatment then GK will be my choice re being non-invasive, it carries a substantially reduced risk of permanent post-surgery problems.

Best of luck and be assured that we are all here to help and advise you at every step of your 'journey'.

Best Regards

Derek

[nancyann]

hi there -   the only concern i have about waiting is the damage the tumor can be doing to the facial nerve.  my tumor was 2 cm (not real large), i had tinnitus and hearing  loss for years & never thought anything of it, till the hearing loss and tinnitus got alot worse.    I probably had the tumor for years and years; unfortunately it left my facial nerve extremely damaged, i now have facial paralysis.   
not everyone ends up with so much damage to the nerve.   you definitely have time, but i would probably make a decision in about 6 months if i were you.  wish i hadn't kept my head in the ground for so long.   best wishes, nancy

[Derek]

Hi Nancy...

'Wait and watch' is a perfectly safe and recommended alternative for a diagnosed AN condition as long as it is under the supervision of an ENT or Neuro consultant and most importantly, is monitored via  MRI scanning at 6 months or 12 months intervals depending upon the advice and recommendation of the relevant consultant.

Regards

Derek

[Obita]

Hi Lizzieb:

Sorry you need to be here....but glad you came on.

Try not to stress too much until you see Dr. Bartels.  He is the one that actually treats ANs.  ENT's don't.  The ENT that diagnosed me (after the MRI with contrast) referred me to an Otologist/Neurotologist to talk about the three treatments for ANs...surgery, radiation and wait and watch.  He made sure I understood that he does not treat or even give an opinion on treatment (except mine was too large for wait and watch). You will get Dr. Bartels opinion about all three options. 

Best of luck to you,  Kathy

[lizzieb]

Thank you all so much for generously sharing your knowledge and experience with me.  I am grateful to have found such a great resource and know I will have a million questions before I come to a conclusion about a course of action.  For those of you who are watching and waiting, how much acceleration do you see in your symptoms over the course of six months between MRI's?  I am concerned about losing more of my hearing by waiting.  I also have some time constraints about when I can be treated.  I am a CPA and if I don't get treated and recover before January, I will likely wait until after April.  I know these are supposed to be slow growing.  I just wonder how much growth takes place in six months.

Thanks again for taking the time to respond.

Lizzie

[Larry]

Lizzie,

I have been watching and waiting for close to a year now and have not noticed anything different. I'm scheduled to have my MRI before Xmas but am confident the AN hasn't grown.

Laz

[Derek]

Hi again Lizzie...

Albeit we all experience differing symptoms irrespective of the size of the AN, from my personal perspective having been 'wait and watch' for almost 5 years, there has been a very minimal size increase of about 2mm and fortunately I have not experienced any additional symptoms. Indeed my balance is back to normal and my tinnitus appears to have decreased of late....I would like to think it's down to my strict diet / exercise regime? Next MRI scan is in April and certainly hoping for a 'pass' to another year as a 'wait and watcher'.

Best Regards

Derek

[pearchica]

Hey Lizzie: the first week is by far the worst! You are recently diagnosed- but if you aren't having major life issues, ie; loss of balance, facial paralysis and or numbing- you really are in a good position to do lots of research.  My husband calls me the research queen, but after three separate opinions all recommending surgery of some type, my fourth opinion was with a neurosurgeon who specializes in treating AN's with cyberknife radiation.  And because I am a chicken little about surgery, this is the option I am going to choose.  Please read as much as you can on this website.  This group is really supportive of your final decision- but as this is a rare condition that allows you the luxury of research, you owe it to yourself to take the time.  And trust me, research is very draining so take it in small doses. Good luck- keep us updated on your progress.  Annie