General Category > AN Issues

I guess you CAN read too much....

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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.

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