Whatdayaknow!

[highlife]

I never imagined myself needing to join an online support group, but here I am.  Glad you're here too. 

Recently diagnosed.  Had my consult at Mayo (the day before the Saudi king and 5 princes and their 200 folks) and have mixed feelings about my visit.  My plan was to go there, have surgery ASAP and be done with it.  Instead, I've decided to watch and wait for 6 months.  Since my tumor is small and I'm 62, I was given the three options we can all recite by heart, but was not given any recommendation. 

My major symptoms are related to dizziness, balance and pressure/fullness in my ear.  In a sound booth, my hearing is pretty good.  Unfortunately, I don't live in a sound booth.  I'm curious about what kind of evals you all had.  Except for the MRI, mine have been very low tech, pretty subjective, ie, can I walk by placing one foot in front of the other without falling down.

Basically, I was told that surgery would not improve anything and could make some things worse (hearing).  Everybody's results are so different that it's really hard to know what course to take.

[Tisha]

Wow, that's a tough one.  Do you have any other symptoms?  If not, it might not be a terrible thing to watch and wait.  I've read that 60% of these don't grow, but usually it's in more mature aged people, when the tumor itself is just done growing.   Of course, there is NO guarantee with any of this.  You can still lose your hearing with the tumor just sitting there NOT growing (A doc told me this), but there is a 20% chance of losing it with radiation and almost 100% with surgery.  STatistic stinks, don't they. 

You will find that many people W&W for a few years, then decide to do something.  Some people never do anything if it's stable.  Good luck with the decision and I"m sorry this had to be your first support board....but you couldn't fine a more supportive, wonderful group of people!

Tisha

[highlife]

Whoa.  This is magic.  You are out there.  Thanks for replying Trish. 
I don't like to think that this is the best I'm going to feel for the rest of my life.  I feel like I have a tennis ball, or sometimes a basketball in my head.  My hearing is fuzzy enough, especially in a room full of people, that it makes social events pretty uncomfortable.  It's the same story I hear from a lot of people on line.  And of course, as you know, the only thing that will improve my dizziness and loss of balance is doing stuff that makes me dizzy!  The surgeon said that surgery wouldn't improve any of that.

It has really affected aspects of my life.  I had the chance of a lifetime last March and April to bring my two Spanish mares to a dressage trainer for lessons.  We worked really hard, riding with the trainer about 4 days a week.  But in May, I started feeling really lousy and by June was dizzy enough that I didn't feel safe riding.  One day in the arena, my poor Caprichosa, trying to keep herself under my unbalanced seat, wandered around the arena like a scene out of Blazing Saddles!  I'm moving them to a heated arena for the winter so that they can be my physical therapy.  Hope I don't make them nuts.

[Tisha]

Unfortunately, the likelihood of the dizziness is more likely to stay than not.  With cyberknife radiation, 2/3 stay the same, 1/3 get better and 5% get worse.  My doc told me that my hearing now (stuffiness) will never go back to normal.   Since it sounds like you have symptoms already, I'm not sure watching and waiting is the best thing.  However, that can only be an individual's call.  All I can tell you is that my AN is 1.7 cm, I have slight dizziness, and not all the time.  It's not debilitating.  My ear feels stuffy and noisy environments are not enjoyable.  Restaurants,etc. have this loud, dull hum.  Sometimes my hearing becomes distorted, even with 96% hearing.  With steroids or OTC, it seems to come our of it.  Even with the symptoms I have, I just can't watch and wait.  I have to do something, but I'm 49 and I bet this tumor is still growing.

Have you met with a doc yet, or sent you MRI's anywhere?  Also, please visit www.cyberknife.com.  There is a forum there that doctors will answer your questions, they seem very honest and straight-shooters.  No beating around the bush kind of answers.

Good luck.  Tisha

[Syl]

Welcome, Highlife,

It really is hard making a decision, especially since everyone is so different.

I was a candidate for all three options. Chose surgery because I wanted the 1.5 x 1.2cm AN out, and am not comfortable with radiation. I was told that the symptoms, such as dizziness and hearing loss, can be brought on by inflamation alone--the darn thing didn't need to grow any more to do more damage. I was well aware that the surgery could cause even more damage. So I decided to get the AN out ASAP with retrosig surgery before it could do more damage and before it could grow and make surgery more difficult.

I'm just over 5 months post-surgery. At this time my balance is comparable to my pre-op balance and continues to improve. My dizziness has reached a plateau and is worse than it was pre-surgery, but I am optimistic that it will improve, though Dr. said 2 week ago that the dizziness may not get better. My facial nerve was left intact and is not an issue. I had some hearing loss pre-surgery, but it is now severe hearing loss, though my hearing nerve was preserved.  I'm currently shopping for a hearing aid. As for the headaches, I rarely suffered from headaches pre-surgery. But now, I wake up with a soar neck every day and if not addressed immediately with a heating pad and otc Tylenol, they do develope into something debilitating. However, they don't stop me from getting on with my daily activities and are manageable so long as I don't ignore them.

I don't second guess my decision to have surgery. In fact, I consider myself very lucky and and am relieved that my pre-op dizziness wasn't due to diabetes, which runs in my family. Life is good and getting better. The road to recovery is a long one and doesn't end at 5 months post-op.

I strongly recommend that you get as many opinions as you need to make you compfortable with making a dicision. I wish you luck in your journey and in maiking a decision.

Syl

[Jim Scott]

Highlife:

Let me add my welcome to those already offered.  Sorry you have a reason to visit this site (an acoustic neuroma diagnosis) but we're glad you discovered us.

My AN was found after I had slowly but surely lost the hearing in my left ear, lost my sense of taste (and 35 pounds due to a lack of appetite), had become uncharacteristically lethargic, developed serious and noticeable equilibrium problems and suffered with intermittent stabbing pains on one side of my head.  While the hearing loss was very gradual, the other symptoms developed over a six-month period and grew worse within the last few weeks before my wife, having more sense than I with the added advantage of not harboring a vague dislike for doctor's offices, made an appointment with our PCP to examine me and find out what was causing my symptoms.  She was (rightfully) concerned.  At that point, I agreed to the doctor visit because I had finally realized that there might actually be something wrong with me! 

To not think me a fool, you have to understand the context.  Please, bear with me.  At (then) age 63, I had not suffered the all-too usual medical problems many men of my age have to deal with.  My heart was sound, my BP and cholesterol very near normal and my circulation was excellent.  I did not have diabetes or back problems.  I did not take or need to take any medications, prescription or OTC, except the very occasional ibuprofen or aspirin for mild temporary pain, usually from over-exertion.  On the other hand, my wife had suffered with serious spinal and neck problems and a host of other maladies over the years.  Although she never let these stop her from living a fairly active life, despite some pain, I was ostensibly her caregiver and the person who carried on and visited her when she was hospitalized for her surgeries.  In her words: I was "the healthy one in the family"....and so I was.  I hadn't been hospitalized since I was eight years old.  I had a routine physical checkup about every 3 or 4 years, and only if my wife nagged me to do so.  On my own, I would have never seen a doctor.  It just seemed abnormal for me.  I wasn't sick, so why let a doctor examine me?  Not to mention the co-pays.

Obviously, that all changed when my PCP ordered an MRI (suspecting my loss of taste to be sinus-related) and it came back showing a very large (4.5 cm) acoustic neuroma that was pressing hard on my brainstem.  This had to be addressed promptly.  We serendipitously located a very experienced neurosurgeon with decades of successful AN removal experience who recommended a 2-step approach.  First surgery to 'de-bulk' (cut down) the tumor and cut off it's blood supply without disturbing any critical nerves, then after a 3 month 'rest period', radiation via FSR to kill the remaining tumor's DNA.  I agreed to this based on my own internet research and my total trust of this mature, compassionate and experienced neurosurgeon who listened to my concerns about facial paralysis and other post-operative complications and vowed to do the very best he could to spare me those problems.  He succeeded brilliantly.  I had negligible post-op issues and was discharged after 4½ days in the hospital following my 9-hour surgery.  I recuperated rapidly, had few balance issues and was driving again within 2 weeks, with my doctor's permission, of course.  I underwent the fractionated radiation in 26 separate treatments that lasted 5 weeks (no week-ends) and suffered absolutely no ill effects except for the third eye that grew out of my forehead (just kidding!)   Today, over two years later, I'm fine and pretty much back to my old life.  I'm retired, so work issues were not in play but I formerly held an office position so I doubt going back to work would have been an obstacle. 

That's my story and I offer it because you asked about prior evaluations before the AN diagnosis and I thought that because we're in the same age bracket my account would offer you some insight.  As others have suggested, I recommend educating yourself as much as possible regarding surgery and radiation (neither is risk-free) and consulting more than one doctor for advice, as well as getting whatever the folks here can offer you.  Observation ('watch-and-wait') is probably a viable course for you but will require semi-annual MRI scans.  You may still opt to have the tumor excised or radiated at some point if observation becomes tedious and/or symptoms increase.  We'll support you in whatever choice you make. 

Jim

[highlife]

Thanks, everybody.  I am collecting as much info as possible.  I was evaluated at Mayo after I asked my local doc for an MRI because I was not satisfied with the answers I was getting from the local ENT.  Maybe the neurosurgeon I saw at Mayo was having a bad day, but I didn't feel any urge to put my head in his hands.  I'm really looking at the "minimally invasive skull based surgery" or endoscopic surgery, which the Mayo doc described as a "gimmick".  It really makes good sense to me, though, because it reduces several problems.  There was someone in the chat room not too long ago that had that kind of surgery with good results.  Any body remember who that was?
Steph

[leapyrtwins]

Steph -

there are a few forumites who have had surgery at SBI - Chopper is the one I specifically recall.

Here's a link to one of his posts http://anausa.org/forum/index.php?topic=1988.0

Hope you find it helpful,

Jan

[highlife]

Thanks, Jan.  That's the post I was looking for.  I'll get in touch with SBI.  It's hard for me to give up the hearing in my right ear, so will wait and see about making a decision about surgery (even endoscopic) until after my March MRI, I think.
Steph

[leapyrtwins]

Good luck, Steph.

Keep us posted.

Jan

[highlife]

Jim:
Thanks for your story - it's a good one.  My hope at our age is that young surgeons think we still have a life!  Quality of life issues are extremely important to me - this is my favorite time in my life ever.  60+ is really great and I have a lot of things I want to do left in my life. I think finding a surgeon I have faith in is essential.

 Music is so important to me, and while I have never sung in the Mormon Tabernacle Choir, I now can't even sing in my little church choir because it makes me so dizzy I can't stand up.  Isn't that crazy?  I also hate the thought of losing stereo sound.  Driving the car for more than an hour makes me sick.

My husband is an acupuncturist and we tried my first treatment for vertigo yesterday.  Wouldn't it be great if that helped?

I so appreciate you online friends.
Steph

[lacey7]

Hi Steph,
Welcome to our group!  I am also 62 years old, so we have something in common.
I had some loss of balance before I had surgery, but my main problem that got me to see an ENT was tinnitis and loss of earing in one ear.  He did the MRI with contrast, and that's how they found it. 
I searched people from the state I live in (Mich) on this site, and most of them said the same place.  Also, my ENT doctor wanted me to go there.
I saw one surgeon the next day........but after I got home, and thought about it, he was soooo young, and hadn't done that many Translabs before.
I called the next day, and they let me change surgeons, and I found the most caring doctor I ever met.  He was in his late 50's, and had done alot of these.
I felt so comfortable with him.  That's what you need to find.  Feel free to mention to people here where you live, and they might be able to suggest surgeons, also.
It depends on the size of your tumor, I think, on what way to go.  I let my surgeon tell me what he thought was best....and it was the same thing that the first surgeon I saw said.  My tumor was medium size, so watch and wait wasn't really an option.  I felt that if I waited 5 years or more....it would be alittle harder to have surgery....but that's just my thoughts. I didn't have all the dizzyness you are experiencing.
Surgery is done when people want the "booger out".  That's how I felt.  But, as you know there are more options for you.
I just re-read that you went to Mayo.  That seems like it would be a great place to go.  It has excellent recommendations.  Now, it's finding the surgeon you are comfortable with.  Don't feel bad about changing, if you don't care for the first one.....b/c I did, and had no problems with it.  It's your life and your brain.  You want the best.
I didn't have any other tests done before hand except for the MRI, and hearing tests.  They are probably giving you those other tests b/c you are so dizzy.
I wish I didn't have to meet you here......but I am glad to meet you!  The next time you see your doctor at Mayo, just for the heck of it, ask him his opinion on what you should do, and why?  We do make our own decisions.....but since I trusted my doctor so much, I left it up to him.
Please keep us informed here of what is going on.
We do care for you....and ask away on questions!!
Lacey