Decisions, decisions..

[KJ]

Hi Everyone,
I'm a newbie and like everyone else I was stunned when my doctor told me I had an AN on my left side. Well, actually I had no idea how serious this was or even what it was until i started reading up on it.  Luckily, mine is small; 10mm x 6mm.  They say they caught it early. I've been told that I probably have had this for 12 to 14 years.  I have a lifelong history of ear problems and have had three mastoid eardrum replacements (two on the right side and one on the left) before I was ten years old. I already have a 60% hearing loss in my right ear and now I have a 70% loss in my left, the AN side. I do have occasional "listing" or dizziness, well not really dizziness. More like unsteadiness. I am an independent contract mail carrier and I drive to deliver.  I'm hoping not to have to give up my job.

I am researching options.  I am 58 years old and I am somewhat intimidated by surgery, fearing total hearing loss on my affected side, leaving me with almost no hearing at all.  I am considering radiotheraphy but am concerned about damaging brain (or other) tissues and also the risk of cancer.  I know nothing about any of this and would appreciate some feedback from any and all who have had either treatment. I realize that all of this is a vast "no man's land" and that nothing is certain. I'm just trying to gather facts and opinions.  I've spoken with the surgeon and neurosurgeon and am planning a visit to a radiotherapy oncologist.

Thanks for any input,
KJ

[opp2]

Welcome to the forum KJ. You couldn't ask for a better group to help you along the way. Supportive. friendly, and I hear they knit great hats!

[loose screws (tightened)]

Welcome to the party. I'm newly diagnosed too. It shouldn't take long for you to see to see the way. There are a lot of people on this forum who have done a lot of footwork for you. Some have traveled to all corners of this country and spoke to many doctors, and most have posted their findings. It took me all of a week to decide what I am going to do thanks to this forum.

I don't expect most to make up their minds as fast as I did. My location had a lot to do with my decision. Break it down to the types of surgery your a candidate for, then pursue the best doctors for the type of surgery you choose.

my 2 cents, or nonsense you decide.
Mike

[sgerrard]

Supportive, friendly, and I hear they knit great hats!

Sometimes I wish it was they, not just me. 

KJ, I think the small tumor size, past surgeries, and existing hearing loss on both sides are all good reasons to consider radiation treatment. Modern stereotactic radiation is much more focused on the tumor, with less effect on other tissue, unlike the whole head radiation they used to do (and sometimes still do on spreading cancer). The risk of cancer from this kind of radiation treatment is vanishingly small, and should not concern you.

 I had my Cyberknife treatment at Stanford in Sep 2007. The side effect for me was a couple of weeks of swelling at about 3 months, with uncomfortable symptoms requiring lots of Ibuprofen and Alleve. Six months later the tumor was dead and had shrunk a little bit, and it has been quiet ever since. I preserved existing hearing on the AN side, which is down about 50-60%. With a hearing aid in it, I do pretty well.

A great place for more information and a chance to post questions to radiation oncologists is the Cyberknife patient forum:
http://www.cyberknife.com/forumlanding.aspx

Welcome to our forum.

Steve

[Vivian B.]

Hi KJ,

I am glad you found this forum. Your AN is rather small and therefore you have options. I just came back from seeing my neurosurgeon who has recommended gammaknife when the time comes and I asked him about malignancy risks after treatment. He said that it is 1 in 1000 if it occurs and it if does, it would not show up until 15-20 years from now. He was very optimistic about the radiation treatment. I asked him about cyberknife as we don't have here in Canada and he said that it offers the same results as the gammaknife. He did not mention hearing preservation with cyberknife but there are many posts here that indicate that cyberknife offers better hearing preservation. Good luck with your decision. It can definitely get confusing.

Vivian

[KJ]

Hello Everyone,
Thank you all for responding. I'll be leaving for vacation on Sunday and when I return I plan on setting up a consultation with a radiologist. I am beginning to lean in that direction more than surgery. Thank you especially, sgerrard, for your encouraging advice. I will keep you all informed as to my decision and treatment progress.

KJ

[Mickey]

Hi KJ! I found out about my AN around the same age as you (.12mmx.06mm). I`m now 61 with yearly MRI`s and so far have not needed intervention (stable). I maintain a healthy lifestyle lot of it posted on W+W and hope to not do anything unless I have to (all symptoms very minimal). In any case there`s time to do your homework and technology today gives us a very good chance of a positive outcome. Best wishes to you and on your decisions, Mickey

[CHD63]

KJ ......

Want to add my welcome to this Forum of caring, supportive friends.  Keep in mind most of us are not medical people but many have done extensive research on the specific area of acoustic neuromas.

In my opinion, given your history of eardrum surgeries and hearing loss on both sides, I would carefully explore all of my options, including waiting and watching.  Just curious, what sent you for an MRI and the AN diagnosis?  It is always wise to pay careful attention to any change in your symptoms during this exploration/decision-making phase.  Although ANs typically grow very slowly, they can sometimes take a growth spurt.

Let us know how you are doing.

Clarice

[KJ]

Mickey, gosh your AN is very small. Wonder how you noticed that you had it?  Glad that your W+W is working out for you.

Clarice, I went to my local ENT this spring because I had noticed significant hearing loss in my left (good) ear.  I thought I had fluid trapped in there and I couldn't clear it out.  I mentioned to my doctor that I heard ringing in that ear and that I was off-balance a lot.  He gave me a hearing test and said my hearing was much diminished since the last test four years ago.  He recommended the MRI.

Today I got a referral from the surgical physician that I saw two weeks ago to have a consultation with a radiologist.  I am leaving for a week's vacation on Sunday, but hope to get an appointment to discuss possible radiation when I return.

KJ

[Jim Scott]

Hi, KJ - and welcome!

I just wanted to chime in with the rest of the chorus that is suggesting looking into radiation treatment to deal with your newly-diagnosed AN.  A consult with a radiation oncologist should help 'fill in the blanks' and assist you in making a treatment decision. 

As my fellow moderator, Steve, noted, modern irradiation techniques are much more focused on pinpointing the tumor and avoiding nearby nerves and brain structures.  My FSR (Fractionated Stereotactic Radiosurgery) was carefully 'mapped' by both my neurosurgeon and a gifted radiation oncologist he worked with to 'hit' the remaining AN (I had a partial tumor resection, first, to render the tumor small enough to radiate) and avoid surrounding nerves and tissue.  That particular procedure requires the patient to wear a very tight-fitting plastic 'mask' that the radiation operator uses to direct the radiation beams precisely where they are needed.  In addition, the patient is strapped to a steel table that is lifted and rotated to, again, hep the radiation technician aim the radiation beam exactly at the correct spot, avoiding surrounding tissues.  Other radiation techniques are equally precise. While radiation treatments come in a variety of forms, they are all highly effective, although no doctor can guarantee outcomes.  I suffered no adverse effects from my FSR and it appears, 3 years out, to have done what it was intended to do - kill the remaining tumor's DNA.  However, my hearing nerve was unalterably compromised prior to my surgery and subsequent radiation, so retaining hearing - as you're (naturally) hoping for -  was not an issue for me.  I trust that future research and doctor consultations will give you more confidence in radiation techniques and that the folks on these forums can give you all the support you'll need as you prepare to deal with your AN. 

Jim

[KJ]

Thanks Jim,
Your shared experience has been very helpful.  I really feel uncertain about surgery.  The business of cutting a hole in my head and fishing around in my brain to find a pea-sized tumor just doesn't sit well with me.  Not to mention the fact that I can't spare four to five weeks off work for recovery. Ideally, I would like to eliminate the imbalance problem but since mine is not too severe, I think I can live with it.  I am hopeful that this will be my way to go.

KJ

[Mickey]

Hi kj! Yes I noticed mine after I came back from vacation and had a slight ear infection and clog. My local ENT gave me antibiotics and told me to go have an MRI, Suprise!  My hearing is still pretty good on both sides. I have no balance problems. I used to get migranes for around 15 years but they have subsided a great deal over the past year. I do have tinnitus which was made more bareable by neuromonics treatment I did. I also really started a very healthy lifestyle over the past year with my wife which I have talked about on this W+W post board under my latest MRI. Best wishes, Mickey

[CHD63]

KJ .....

Thanks for answering my question.  Enjoy your vacation next week ...... relax, have fun.  This thing will wait.   

Keep us posted on what develops with the radiologist.

Clarice

[Keeping Up]

HI KJ

And welcome.  You have certainly had your bout with ear issues - this makes the decision, I am sure, very much harder.  I am a watch & waiter with a similar size tumor (and almost 20 years your junior so no age bias for the somewhat younger crowd here).  I am hoping to wait it out for 10+ years.  If you are interested, I have research done my doctors (Canadian study) that suggest almost 70% of these tumor never materially grow over their 10 year study period ... implying potentially no treatment at all.  If you are interested, send me a private message and I will send it on.  I have forwarded it on to many here.  The risk is hearing loss without treatment - but other research shows it mightn't make a difference between watch n'wait and radiation vs. hearing loss.  It is all give and take, and probably a huge gamble either way you chose.

For the record, while I am at peace with my watch n'wait status, I know my hearing is failing.  It was very strong 12 months ago, but don't feel it is as good now (and had a noticeable word recognition drop 4 months ago).  So, if you do chose to discuss waiting with your physicians, get the low down on continued hearing loss (vs hearing loss and radiation/surgery).

Happy vacation, good luck and stick around - I don't visit here as often as I once did (somewhat busy working & four small children, and well, simply living), but really appreciate the support and commitment the gang has to the board.

Ann 

[KJ]

Hi Ann,
I thank you for your input; all angles are appreciated.  I am thinking that I ought to do something as my doctor tells me that I have probably had this thing for around 12 - 14 years already!  I think I've already done the W & W thing!  I fear any further hearing loss but really fear surgery.  I remember how miserable those early surgeries were and the long recouperation.  I'm glad that modern medicine has given us new options.  I will resume fretting about all this in about a week. 
Good luck with your watching and waiting.

Kate