I guess you CAN read too much....

[mac84]

Was just diagnosed last week and have been reading everything I can to help me at least know the questions to ask when I have my first consult.

I would suppose that most here have had the same experience:  Your thinking moves in certain directions as you read more about other's personal experiences with surgery and radiation, then you add to that the more technical discussions of the cyberknife, gamma knife and the various invasive surgeries....after a while you are either more at ease or start feeling like it's a toss up.

I guess I fall into the camp of wanting to know as much as I possibly can but sometimes too much detail will scare you death! Especially if you've not even been to the first consult yet!

Thanks again to all on the forum....it IS helpful!

[arizonajack]

In another post you mention that it's 1cm, you're 48, you still have your hearing, but you have tinnitus.

1cm is considered small. Mine was 1cm long (bean shaped) when I had Gamma Knife in January 2013. Unfortunately, by then I had lost all the hearing in the AN ear.

It's really a toss up whether you'll keep your hearing or not.

Anyway, you are right, there's a lot to learn, and a big decision to make.

My only words of caution is that time is not on your side. Oh, I'm not saying make a snap decision, just saying that waiting 6 months or a year can make things worse because these things grow and don't get better by themselves.

[mac84]

Arizonajack, thanks for the reply...

You are correct...1cm is what I've been told. I am hoping to get to Vanderbilt in the next 2 weeks and then another couple of opinions quickly thereafter. Then I'll make my decision and move forward...I'd rather be "doing" something on it.

[ANGuy]

Keep in mind that surgery or radiation can make things worse too.  The way I see it, all three paths have the same risks and potential benefits.  You could end up better off, the same, or worse with all three.  That is, unless your tumor is large and impinging on your brain stem etc, then your decision is easy.

My viewpoint now, being 47 with a 1cm AN diagnosed in 6/14 is that if I can put off the risks of surgery for ten years, that will be ten years less I will have to live with the damage that surgery can do.  It will mean ten years of research and development of improved techniques, maybe even a "cure".  Of course, I've only had the one MRI so far.  One Dr. says I'll never make it ten years and he sure knows what he is talking about.  His teammate says it is entirely possible that I may never need surgery and taking one MRI at a time is a reasonable approach and he sure knows what he is talking about as well.

I'm not advocating WW for you, or anyone else.  I may be on here in December after my next MRI talking about my upcoming surgery.  I am not any more knowledgeable about any of this than any other member here, and probably a little less so.  I just wanted to give my current viewpoint on this stuff, which is worth what you are paying for it

[Mickey]

Hi AN Guy, mac 84!  Sounds like a similiar situation.  It was 7+ 1/2 years ago. 1CM AN  around 58 years old.  I choose to W+W. Well anyhow I`m still at it "stable" going for mri`s every 2 years now.  I feel better than I did when first diognosed. What I can say is get on to the W+W Brigade posts which will give you a good idea of what is being done for a number of years by a bunch of us.  Best wishes, Mickey

[ewhitese]

Hi mac84,

I too found my AN through other ENT issues.  I was dealing with sinus issues and during prep for sinus surgery the AN showed up on an MRI.  I know I had symptoms for at least 10 years though.  I remember a day, 10 years ago, when I first realized I had a hearing issue.  I was cutting firewood with a chainsaw, I used hearing protection at all times doing so because the pitch of the saw engine and volume of noise is destructive.  In spite of the hearing protection, the next day I noticed a numbness and slight hearing loss in the AN ear.  It eventually went away on its own but the ringing remained.  Over the next few years the hearing loss and tinnitus remained fairly constant and I just contributed it to the inevitability of working with heavy machinery.  Fast forward 10 years to diagnosis.

I chose to go forward with Gamma Knife surgery after just two weeks of discovery and research.  I realized that I had entered a growth faze because as the sinus issues grew so did the hearing loss.  My AN was 10mm at time of surgery.  I am sure even though not officially diagnosed that I had lived with the AN for those ten years.  If the AN is stable and symptoms are mild, I would opt for watch and wait.  I lived with a hearing loss for ten years with out any ill effects.  No one noticed and I functioned perfectly that entire time I barely noticed a loss of hearing at all.  Granted not knowing may have helped make my symptoms go unnoticed, we have a tendency to be hyper-vigilant once we know.

Size of the tumor is only part of the equation, location of your tumor is going to determine the types of symptoms you will encounter.  Some patience here have gone through all the same procedures the rest of us have, and had no side effects and live blissfully unaware of all the fuss others complain about.  If you can; get your physician to show you the MRI and explain the location and details about which nerve is effected, where in the skull is it located, best approach to deal with it.  This information will lead you to questions you don't know you have and eventually lead you to an informed decision.

My experience with GK surgery leads me to say that if things are stable and you are functioning with out ill effects other than a slight hearing loss, watch and wait is a good option.  If on the other hand you are experiencing changes and the symptoms are becoming noticeable and in some cases extreme then I would look at surgery options.  I am sure that the attending physicians are the best people to help with this decision because they are privileged with information through MRI information and should be your most trusted advisors.

The surgery brings it's own set of issues, although some symptoms post op. will solve themselves as swelling or healing takes place, they are just as rough as the cause.  I am 14 months post GK and have gone through some issues but have been regaining my old self in the past 3 months; minus hearing in the AN ear.  I guess if you think of it as brain surgery I am doing well.  I am 55 years old and my opinion is that putting off the surgery as long as things are working ok is a good option.  I am no doctor and have no medical evidence to support my opinion so my thoughts should not be considered without weighing all the evidence and especially the guidance of your physicians who have dealt with more than just my case.

Good luck with your research, this site is a great place to find information, don't be shy about asking others for their research, many here have done a great deal of educating themselves and the rest of us on all the options and facilities out there.  Of all the things we could be afflicted with, this one is a relatively low impact problem. 

[mac84]

Thanks ewhitese, very helpful info!

I can appreciate the part about functioning normally but also being 'hypervigilant'.....I find myself connecting some symptoms on that side now that I just never thought much of earlier. I can function fine like I am now but just worry that the hearing will continue to deteriorate on that side.

[Kate62]

Mac84,  I sent you a PM - please check your messages.   Thank you, Kate

[MDemisay]

Dear Mac84,

   You have hit on a very important topic! THERE IS A POINT WHERE YOU PUT THE RESEARCH OR READING DOWN AND RELAX!!!

Get away from it and do some active meditation or go on a mini-vacation where you become distracted for a while ..........

Then fully refreshed, you can return to it later and research as much as is humanly comfortable for you.

Do not avoid this research for too long however, but do NOT procrastinate on your decision like I did....delaying my decision on surgery for 6 months! You have to realize that I didn't want surgery so much that I found every reason too avoid it so much so that I almost took a radical approach of Gamma Knifing a tumor that no one else would GK! What stopped me was the test he prescribed a CT scan with Contrast he had done the majority of his GK based on his MRI information, it turns out that he had done only 2 based CT with contrast (I had decided at that point that I was going to be his"lucky" third!

But unlike you and others here, I did not have the VAST resources of the ANA to fall back on, at the time I had only myself and my fear and procrastination characteristic at my disposal.

The major reason I went into "tailspin research mode" in the summer/fall season of 2004 was because I wanted to avoid at all costs another brain surgery ( like that of 1974).

Fortunately for you, you have all of us here that will tell you to do your due diligence with research but do NOT stress out use periods of time to de-stress.

Brain surgery or watch and waiting is stressful for sure but too much research after a while can be depressing. Too little research nets poor results, however!

Do just the right amount for you! The way out of this is to write all interviews down and then put it all out in front of you on the floor. Group all responses in categories. Get up and walk away for a while.

When you come back to it, realize that this is the most difficult step in the whole process------you must decide to act. The way I accomplished this is by a whole lot of prayer and meditation it was a transformative process without the ANA. Fortunately for you, you have ALL of us!  Blessings and prayers for you!

As you go forward in this process, remember that there are people who are going through this process too at various stages rely on us, surely, it is a very difficult process to go through but it is manageable!

Have you ever been in a tunnel? You are about to enter a long dark tunnel, that seemingly, never ends! I am at the other end of that tunnel in the light waving a flashlight! I am well aware that I sound nuts,but it does really get better!

You will soon discover a plethora of friends that are as far away as your computer or IPad or you may take comfort in a support group (as I did).

Welcome to your medical journey, I invite you to come back as often as you like and share as often as you like. It is very different for all of us, you may have certain insights that we have not considered.

YOU ARE NOT ALONE!

Mike

[mac84]

THANKS MIKE!!!

[Crazycat]

Watch and wait for up to ten years after being symptomatic and officially diagnosed? I went from being symptom-free to being a complete wreck with a golf ball-sized growth (and hydrocephalus as an added bonus) in less than four years. Good luck.

[ampeep]

mac84,

Suggest that you take your time with getting as much information as you can and don't rush into a decision.  I had planned to W&W, but 6 months later my AN had grown so I decided on GK.

Seems like about half of the folks here have opted for surgery.  This is very different from my neurosurgeon's experience; he does both and told me that he rarely performs surgery on small/medium ANs. 

[mac84]

Thanks Ampeep...good advice. I have read so much more since posting this originally.  I'm scheduled for my next MRI on April 14th.....that ought to give me some more direction!

[darkorchid12]

Hi mac84,

I am new to all this too. Just found out Feb. 4 that I have an acoustic.  Sounds like I am like you, about reading everything I can find.  One thing I have learned so far is that taking time away to "download" information is really sound advice.  I have two consults I am waiting to hear back from and one more that I am mailing out Monday.

My experience (not that much really) is that I have been really lucky finding this site. Even though I am still unsure just which way I will jump, I feel a little less unsure about possible outcomes.  The doctors I have sent consults to have all been mentioned here.  One I was going to request a consult, I am now not going to because of info found here.

Having worked at a school for 30+ years one thing I have learned is that in life you are always a student.  I look forward to discussing my case with knowledgeable physicians that I hope will lead to the right answer for me.  I sincerely hope that happens for you too.

best

[KeepSmiling]

 Wait a bit if you want to--But do read more- when you are ready... Sometimes you need a bit of time to process the whole enchilada.

At first I was a bit numb to my husband's diagnosis. It was 2 weeks before Christmas when we got the diagnosis.  I remember not wanting to even look it up on google. I remember wanting to deny it was there.  I'd say I didn't start intensely researching until 6 weeks after his d(x).

 Then I went at it -full throttle. Previously I was involved in my own job search. I dropped the job hunt and became an AN  researcher. Full time. From morning to night. For a few months, probably five months. (I did not sleep well either).

I sent his MRI to all the experts and ... oh no!-WTH? --- they all varied in their opinions. HUh? Docs would look at the MRI we sent (usually by overnight or certified mail) and then the doc would call us and utterly destroy our sense of peace, simply by telling us that they would recommend something that the previous doc had just warned us about.

And we would visit the docs.  (which required day trips and lost time from work- goodby vacation days for my husband!)  Neurosurgeons, Radiation Oncologists.. UGH.

The lack of consistency among doctor's opinions was unnerving.

The usual protocol of any doctor (specialist doctor)  was to give his or her opinion and then to review all the options for care that are available to the AN patient.  One of the neurosurgeons we talked to had mentioned the typical options : Gamma Knife, Cyber Knife, Radiation...and then he also included one sentence about a form of radiation called Proton Therapy, but said it was not used too often because it required a Proton Therapy Center. This got my husband's attention. Later, my husband reviewed his notes about that meeting. He started to research a little about it and he liked what he read. He asked me to look into it.

I started to understand clinical studies. After awhile I became fixated at reading medical studies.

I also read hundreds of  posts here at the forum. I did advanced searches on certain topics. Then I  scheduled phone conversations with Acoustic Neuroma Forum members. Sometimes there were 4-5 phone calls a week. My husband would come home from work and go straight to a telephone conversation I had set up, by simply sending an e-mail and arranging the call with one of these very kind and quite nice forum members. (MANY MANY THANKS!)

It was my husband who settled the matter and decided which route to take. He is an engineer and he liked the scientific data supporting Proton Beam Therapy.

Once he decided what he wanted Proton Therapy, things still weren't simple. It turned out that not all Proton Therapy Centers seemed like they were well versed in treating vestibular schwannomas. It was strange. We traveled to a few of them and discovered this. There was a Proton Therapy doctor in our state who told us that he should get Gamma Knife, and that he'd treat my husband, but that really felt my husband should get Gamma Knife. He then proceeded to talk how he was not in agreement with other proton treatment doctors who said that "X" number of beams should be used. His talk was was odd. He seemed very uncertain.  That same doctor is not listed on their website now.

We observed that many of the proton therapy treatment centers seemed to advertise how they helped prostate cancer patients and said very little about vestibular schwannomas.

There were other challenges and snags. In one case we traveled across country to California and discovered that the doctor had some logistical  issues (a specialist who was named as a co-author in a scientific study about this treatment!) She was not able to help us in the Appeal Process after our Insurance (Aetna) had repeatedly denied this treatment. After more questioning we discovered . that they had NEVER actually had a single case where commercial Insurance had authorized proton therapy treatment for his condition. (Side note: We sent correspondence to the leadership at that California Proton Treatment Center trying to escalate the issue -much later that year we were compensated for the travel and expenses... after they learned how to successfully gain insurance approval after they studied the approach that was taken at Mass General Hospital).

It was fortuitous that I had read on the Internet that there were many Proton Treatment Centers and I had sent his MRI to many Proton Therapy Treatment Centers ( and many other specialists- all who were willing to review his MRI no charge ) We still had many other options. Luckily we found another co-author of a scientific studies on Vestibular Schwannoma,  using Proton Beam: Dr. Jay Loeffler. Luckily we discovered that the Massachusetts General Hospital Proton Therapy Center also had a talented staff member who was adept at getting Insurance approval and confident she could help us. We read as much as we could about the subject and to us the Massachusetts General Hospital seemed to have the required expertise for treating acoustic neuromas.

Then there was another decision. With Proton Therapy some doctors were trying to treat it with only one treatment with the proton beam. We had read scientific studies about the merits of getting multiple treatments over the course of a few weeks. I believe that is is called fractionated radiation. We wanted the most effective treatment, and studies seemed to point to fractionated radiation as having the best outcome. We inquired if the Mass General Staff member  could attempt to get insurance approval for either a single treatment and/OR for fractionated (about 23-28 sessions) . The staff member assured us that she had much experience in getting approval for this (which indicated to us that they have experience in treating Acoustic Neuromas). Within 30 days she called to say we had been approved. Big sigh of relief.. Previously we had been rejected four times, which obviously had caused delays in getting the treatment. It was our belief that getting treatment was important. We believed, from what we read, that it was important to get treatment so as to avoid facial nerve and balance issues. We wanted to take action.

Once we gained Insurance approval, (for fractionated treatment) then we tackled the task of figuring out logistics, all within 2 months! We studied the Internet, made calls and finally found semi-affordable lodging...that was extremely time consuming... and then we tackled other tasks-for instance, how to make sure my husband could keep working during his treatments. We had to figure out some things for "the kid", who needed "some guidance" while we were gone..etc, etc.. lots of logistics! So glad we found all the answers. So glad.

Read about our good outcome so far. Please see my posts under my silly name "Keep Smiling"..I am very glad to report that all is well.

My husband's tumor was 1.5 cm. We regret we did not know about it until it was 1.5 cm. We will always feel regretful about how his MRI should have been done sooner so we might have acted sooner...Maybe if he got earlier treatment he might not be deaf in his left ear?

For us reading was a very good thing. We weren't' really ready at first to handle the medical language and the uncertainty of it all. We are glad we got to more energetic state of mind and that we could figure out a path, after careful methodical analysis. Now, looking back, it seems that all the reading and studying may have been or best asset.

In my humble opinion, reading is actually the best thing you can do. Be analytical. Read as much as you can. . We wish you the very best. If we can help you, please let us know.