Still looking for answers

[Betty-jane]

Hi everyone, new to posting but have been lurking for awhile...hoping to find answers.  MRI found AN Sept.07.  watch and wait for 1 year.  Second MRI Sept.08 and found AN had grown, recently saw Dr. for talk..surgery or radiation.  I don't really want to leave it in there, but scarry if you end up with more problems than before.  I also have a business to look after. In that respect radiation would be better. I didn't realize short term memory, fatigue and some speach problems were things that happened before surgery. I am finding more symptoms appearing week by week.  If you have radiation do your symptoms go away? I get stabbing pain in and around my ear...sometimes for a few hours or just a short time.  Does that dissapear?  How do you choose? 

[sgerrard]

If you have radiation do your symptoms go away?

I had radiation a year and a half ago. My main symptoms are hearing loss, tinnitus, and strange pressure sensations in my ears. I did feel some of that short term memory loss, fatigue, and losing words right after treatment, but that is all long gone. My hearing went down a bit more, and has been stable for a year now. The tinnitus has faded into the background, at least in my mind, which is the only place that counts. I do still get strange pressure sensations in my ears from time to time, especially when the weather changes, but not as often and not as intense.

In case you haven't worked it out yet, that is about as close to a yes as you get when it comes to acoustic neuromas. 

I don't think you can count on getting more relief of symptoms from surgery than from radiation, so that would not be a basis for deciding in my mind. I think radiation worked out well for me, but you do have to investigate it and see if you are comfortable with it before deciding for yourself.

Welcome to the forum, glad you joined in.

Steve

[Keeping Up]

Welcome Betty-jane

Wondering which crazy place might have a year wait for surgery - should have known it would be right here at home.  I am a Torontian - and also a wait & watcher with a small AN (asymptomatic most of the time, save minor hearing loss and tinnitus), a raft of little kiddos and an income!  (Radiation - gamma knife only in Canada seems to have a much shorter waiting time, at least in Toronto.)

No advice - other than keep posting.  I am finding none of the options are great so just wait for my first 6 mnth MRI.  I am hoping the AN hasn't grown ... and suspect that is what will happen, but we shall see.

You will find every assortment of decision making on these boards - you just need to ask lots of questions and figure out what the right solution is for you.

Please keep posting because I am learning from all the people ahead of me!

Ann

[carter]

i am 8 weeks post ck.  had my first follow up MRI Tuesday....  to get results today.  teh fatigue is greatly reduced.   i have had no swelling problems ....  i now wait to see if it worked and to see if any issues develop

i thought that i had asked all of the right questions when i talked to dr's.   i did make the right decision for me  - to have ck  .... but i would have asked a lot more questions about the staff, who to do what, when to see dr, side effects, and follow up care, etc.   this is one area that i did not see addressed early on.   

we all have the litle bas^*^&*(rds - soi have learned to relish life even more and the ones that i love..  i ended up using gut feelings.

[Jim Scott]

Hi, Betty-jane - and welcome.

I'm sorry you have an acoustic neuroma to deal with but I hope you've found the forums helpful.

As one who underwent both surgery and radiation I'll offer a few observations.  I had total loss of hearing in the AN-affected ear, severe fatigue as well as a drastic deficit in my ability to taste and regular, intermittent stabbing pains on the side of my skull where (as I learned) the AN was located.  I underwent retrosigmoid surgery to 'debulk' (reduce the mass of) the tumor on June 7th, 2006, and those symptoms disappeared.  I underwent follow-up radiation 3 months later, as planned, to destroy the remaining tumor's DNA.  Both surgery and radiation were successful.  The tumor is 'dying' and I've never experienced the symptoms again. 

Be aware that radiation, although non-invasive and less traumatic to the body than surgery, carries it's own risks, although it may be the best choice for you.  You'll have to decide that question.  We're here to help.  Feel free to ask and you'll very likely receive answers from those who can speak from experience and with understanding for your situation - because they've 'been there'. 

Jim

[suboo73]

Hi Betty-Jane,

I still am looking for answers, too - but this is THE place to be, lots of wonderful folks here with lots of knowledge and great resources.  So take a deep breath and keep researching.  I know the healthcare system is al ittle different in Canada, but you should learn all your options and choose the best available when you need to.

So sorry you had to join the AN club.  My sister and i are both here, too - most people on this forum understand, can say 'been there, done that.'

I will keep you in my thoughts and prayers during your AN journey.

Sincerely,
Sue

[Betty-jane]

Thanks everyone...  for the info and the support.

[Vivian B.]

Hi Betty Jane,

Replying a little late. I am too in the same position than you. I live in Toronto. Surgeons have discussed both surgery and radiation. Both have difrerent risk factors. From what I gather, surgery has a longer period of recovery. Regrowth seems to be somewhat common in some cased. I am watch and wait for now, but also would like to come to terms with treatment when I have to choose. Very hard to choose and the more I read on the forum, the more I realize it is an individual decision altogether that you need to be comfortable with. What to do? Don't worry, everyone on the forum has been there at some point. Let us know if you find out any new stats.

Vivian

[EJTampa]

Hi Vivian,
 
Actually I think regrowth is rare for both surgery and radiation.  We'll know more and more as years go on about regrowth rates years down the line with radiation, but I think both are in the single percentiles.
 
Recovery is all in how you look at it.  With surgery, in the majority of cases, most of your recovery is crammed into the first couple of months, and in fact other than balance, in the first 2 to 4 weeks.  Facial issues can be ongoing if that nerve becomes damaged.  With radiation, there can be swelling on and off for up to 2 years (the number I've heard most often here), but can usually be treated with steroids.  Not everyone that gets radiation has 2 years of symptoms, it's just one of the possibilities.  I would consider surgery to be the short term recovery and the radiation the longer term.  It is true, however, that you can go back to your "normal" life much more quickly with radiation, so in that sense I suppose it seems quicker.
 
Ernie

[stoneaxe]

I think the most difficult part of this whole ordeal is the "looking for answers" part. I just had my 5 year treatment anniversary. proton beam at Mass General Hospital. I'm still not sure I made the right decision. I'm a voracious reader...poured over all the research data available at the time, talked to many docs. Finally decided to go the way I did.

My hearing in the AN ear was 65% gone prior to treatment...completely gone now. I had mild tinnitus prior...loud post...but i've learned to ignore it for the most part. No headaches or pains before...6 months post treatment I started getting mind numbing headaches and shooting pains behind my ear. The headaches are mostly controlled with topomax now...mostly...I still often get a dull ache that I can just ignore but the shooting pains continue. They are infrequent usually but will sometimes cluster. My biggest problem was dizziness and vertigo. I had real problems there, afraid to drive often, bouncing off things, falls. Hard times sleeping...closing my eyes would bring on vertigo especially when lying down. I have that pretty well under control with heavy exercise therapy. No other issues. Despite all this I lead a pretty normal life. Just have to work around the rough spots.

My biggest concern at the moment is that i'm waiting to see if the growth that was seen in my last MRI has continued. I was at 6mm in one axis at treatment. Last September it was at 11mm. If its growing again I'll have to go through the whole decision making process once again.

I wish there was a definitive answer that could be given to you but there isn't. The brain is such a complex instrument and each of us responds differently to different treatments. The best you can do is do your homework and roll the dice. At least you have this forum to bounce questions off of...five years ago I didn't have that. Info was much more difficult to find. Unfortunately no perfect treatments have been developed in that time.

[Sheryl]

Stoneaxe - Cape Cod here (although now Florida in the winter).  Hubby had meningioma (another type of benign brain tumor) excised in May of 2004.  When regrowth was found in 2006, he researched and researched and waited and waited until finally deciding on Cyberknife at the Beth Israel Deaconess in Boston.  This was done October, 2007.  Now he is again dreadfully watching what may be tumor regrowth - all opinions seem to be different.  Three docs say probably; two docs say stable, no problem (one a well known neurosurgeon in Boston and, as we know, they like to "cut").  In fact it seems one dimension of tumor has gotten a tad smaller and the other a tad larger - it's all in the interpretation.  I should add, though, that meningiomas are more difficult to treat (according to doctor on Cyberknife board) than AN's.  Plus, there was varying opinion on the pathology after surgery as to grade 1 vs. grade 2 - both of which are still benign but grade 2 meningiomas can be more aggressive. 

Meanwhile I wait and watch for 7-1/2 years on a 9th cranial nerve schwannoma (much like an AN) - after almost 42 years of marriage, we still like to do things together!!!

When do you have your next MRI?  Hopefully the slight growth will stop - keep us posted.
Sheryl ("The Snowbird")
p.s.  Went to a few Red Sox spring training games as they are only 15 minutes from us - lots of fun.

[ppearl214]

Sheryl, you all better be en route back to MA from FL, you snowbirds! When are you coming home?   BTW, have tix for 2 games at Fenway! Can't wait! xoxooxoxoxox

Hi Betty-Jane and welcome.

I had CK 3 yrs ago (next week!).  Like Steve, I share many of the same pre and post-treatment symptoms, sometimes depending on my stress levels, seem to be more active at times than other times. 

As an AN'er, I've learned that regrowths are potentially all part of the AN journey.  If the hearing nerve is taken during microsurgery, then, since the nerve is gone, well, doubtful   As for new growths, that is part of the AN journey we are on.  I know lifetime head MRI's are in my future as we'll have to monitor things to make sure my current AN doesn't grow back on me and well as looking out for new AN's.  It's become my reality and I know to stay on top of things and not let things go by the wayside. 

Your gut will know how to direct you as you continue to research. Keep asking questions... obtain answers... your gut will help guide you to what will work best for you and your particular situation.

Again, welcome.
Phyl

[Nancy Drew]

Hi Betty-Jane,

My AN was found by accident in 2005, and I was in W&W mode until my MRI showed growth in May 2008.  I never really had any major problems.  Some slight hearing loss in one of the high frequencies.  Making a decision about what to do was horrible because I was told I could continue to W&W by some docs.  I decided to go with GK (Oct. 21, 2008), and so far I have been lucky.  I had a MRI at three months, and my AN is starting to shrink.  My hearing did not change (same as before GK), and my balance test was within normal limits.  I do think I have a bit of word discrimination problems....though only minor.  It is a waiting game now.  But, overall I feel like I'm gonna come out of this just fine.  Best wishes as you make your decision.  I was such a nut case when I was researching, doctor hopping and decision making.  Sometimes I think you just have to step back for a minute and take a big breath.....I could have used my own advice that I just gave here!!!  You will read here about finding your "gut" feeling.  It's true.  It will come, but it ain't easy getting to it sometimes.  Hang in there!

Nancy