New in Bay Area, CA

[Jesse]

Hi all,

I'm 29 years old, male, in the Bay Area, CA. Just over two months ago, I experienced a sudden, decreased amount of hearing in my right ear. It happened basically overnight -- one day I was snowboarding in Tahoe, the next, I woke up and everything was slightly quieter in one ear. At first I attributed it to ear wax, or a plugged ear due to the elevation. But when it did not improve after 1.5 months, I visited my doctor who had me take an audiogram. The audiogram confirmed I had lost about 5-10% hearing in the higher registers of my hearing. I then met with an ENT specialist last week who ordered an MRI. On Friday, he called and informed me with the bad news. The MRI had revealed a 2.3cm growth in my inner ear close to my brain and that I have an Acoustic Neuroma. My ENT doctor is now referring me to a neurosurgeon for treatment options.

Currently, I'm waiting for my consultation with a Kaiser neurosurgeon (Allen D. Efron, MD) in Redwood City, CA in three weeks, which feels like an eternity from now. Until then, I'm in a state of limbo and uncertainty. The resources of this website and forum have been invaluable for keeping my wife and I sane. I find comfort in the fact that this disease is not life threatening, but I'm very concerned on what impact this will have on the quality of life, as I'm still very young.

I hoping some of you more experienced with this could help with some questions:

1) As I mentioned, my insurance plan is with Kaiser. But after doing a lot of research, Stanford University seems to be a huge center of excellence in treating this specific condition, and I would prefer to have treatment done there. Will Kaiser allow me to work with Stanford for treatment? Also, seeing as my consultation at Kaiser Redwood City is still three weeks out, will I be able to schedule a consult with Stanford in the meantime? Three weeks just seems so long to wait without an expert consultation, allowing plenty of time for my mind to play out all the worst case scenarios.

2) Although I have yet to speak with a neurosurgeon, I already seem to be leaning towards a radiotherapy treatment based on my symptoms/preferences:
* age: 29
* size of tumor: 2.3cm
* want the best chance at preserving my hearing as much as possible
* other than hearing loss and tinnitus, I don't seem to have any of the other symptoms such as dizziness, vertigo, facial pain/numbness, headache
* relatively active lifestyle - want to avoid the post-surgery down time, time off work, etc...

I realize that each tumor/patient is different, but based on the above, does radiotherapy seem like the best option for me? My current feeling is: if radiotherapy can completely halt the growth/effects of the tumor, and I can preserve my current symptoms (hearing) as is, then I will be completely happy with the outcome of treatment. However, my understanding of open surgery, is that has a chance of destroying my hearing, has risk of complications post-surgery, and will impact my current lifestyle due to the post-op recovery. I simply do not see any upsides to surgery vs. radiotherapy. Is this fair to say?

Thanks all. I'm so glad that a site like this exists as I would be completely panicked and lost without such great information.

-Jesse

[Jim Scott]

Hi, Jesse - and welcome to the ANA discussion forums, even though I'm sure you would rather not have a reason to join us.

To answer your questions: At age 29, some doctors will attempt to steer you away from radiosurgery because they believe that the amount of radiation you would receive could be problematic if you needed to receive large amounts of radiation later in life, i.e. to treat a malignant tumor.  This is basically an outmoded conception but still somewhat prevalent in the medical community.   The best thing to do is try to consult with neurosurgeons as well as radiation oncologists and, if possible, doctors that perform both procedures.  As you might have guessed, surgeons tend to recommend surgery and radiation oncologists to recommend radiation.  Once you've decided on the best method of treatment, the crucial point is to select a doctor that (a) has lots of experience treating acoustic neuromas and, (b) that you are totally confident of and feel comfortable with.  Unfortunately, I live on the east coast (Connecticut) and cannot offer any information on the question about Kaiser Medical protocols or Stanford, except that, as you noted, Stanford has an excellent reputation for radiation physicians.  I won't be so presumptuous as to recommend what procedure you should select to treat your AN (I had both - very successfully) but I will caution you that, while radiation treatment is definitely less traumatic than surgery, it is not a panacea.  Radiation carries it's own risks and potential complications, which any doctor that recommends it will very likely explain, in detail.  I recommend that, if you haven't already, go to the ANA home page http://www.anausa.org/ and review all the great information regarding ANs and your treatment options.  I'm sure some of our California-based members and radiation 'veterans' will soon be adding to this thread with support and information.  I'm certain that they'll fill in the blanks and help you move forward on this journey with confidence.

Jim

[TJ]

Jesse

I live in the Bay Area also, although I don't have Kaiser, my insurance had a heart attack when I asked if I could go to Stanford.  You will have to persue that option through Kaiser.  I had CyberKife treatment at another hospital.  You need to be aware that radiation can cause hearing loss also.  I have lost some but so far not to much.  To answer your question about radiation, you need to talk to the doctor.   My doctor told me the largest that they do radiation on with confidence is 2.5cm.   It really depends exactly where your AN is located.  Be sure to ask lots of questions.   If you go to a surgeon they will recommend surgery, if you go to a radiologist, they will recommend radiation.

As for three weeks till you appointment, please remember that AN's are very slow growing. 


Take Care

TJ

[chrisransom]

Jesse,

I'm glad you found us.  I, too, was recently diagnosed and quite "edgy" waiting for the first consultation.  But take your time and learn as much as you can.  These things are very slow growing and it gives you time to learn and make the best choice for your situation.  My first consultation was a blur - I hadn't heard of AN or this group until after that visit - and I was overwhelmed.  I didn't know what to ask or say or anything.  They gave me a brochure for the ANA and I joined later that same day.  I got a second consultation about 3 weeks later which I was much better prepared for, calmer, and I understood what they were saying to me.  Each treatment option has its benefits and each has downsides - you'll figure out what works best for you and your lifestyle.  Find a support group - ask lots of questions.  I wish you all the best

I can't comment on the Kaiser issue as I have not experience with them.

Chris

[Suu]

G'day Jesse

You've had great answers so far and I don't have much to add except to stay calm.  Deep breathing is an old and trusted method, is drug-free, and you can do it anywhere.
This time will pass in a blink!
Your assessement is spot on with knowing that each case is different so arm yourself with as many questions as you need answers to and put them to your surgeon.
I have everything crossed for you.

Hugs,
Suu

[sunfish]

Welcome!  Sounds to me like you've really done your research.  If I lived in CA (we lived in Bay Area for 8 years), I'd definitely want CK at Stanford.  However, we had Kaiser when we lived there.  Don't think we ever had to go "out of network" for anything, and we lived there a million years ago, so don't know what they can do for you.  We really really liked Kaiser, and I'm sure they've got someone to do radiosurgery somewhere.  I chose to have CK at a center with very little experience treating ANs.  Not so much of a problem getting the treatment, but plenty of problems with followup care.

Based on your initial post and comments, you're on the right track.  Keep us posted!

[CHD63]

Hi Jesse .....

You already have excellent replies to your post.  I just wanted to welcome you to this forum of caring, supportive friends.

If you have not already done so, at least send for the free ANA information materials.  They contain a wealth of information and much reassurance.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

Stay with us and let us know what you find out ..... and especially how you are doing!

Many thoughts and prayers as you go through this decision-making phase.

Clarice

[HeadCase2]

Hello Jesse,
  Welcome to the ANA forum.   There have been many people on this forum that have been treated by CK by Dr. Chang at Stanford.  Some of them have Kaiser insurance.   Check with Dr. Chang's office, they probably know the best way to work with Kaiser.   If you search the forum for Chang and Kaiser you may be able to identify who has gone this route, and if you contact them I'm sure they would be gald to tell you about their experience.   There is also a CK forum they may also have info for you.

Regards,
  Rob

[Jesse]

Thank you all for the warm welcome!

I just RSVP'ed for the upcoming Stanford AN support group on April 7th:
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/acoustic_neuroma.html

Dr. Chang's assistant, Aysha, who I talked with over the phone when RSVP'ing for the support group, had mentioned to me that Kaiser now has their own CyberKnife machine, so I would likely be getting treatment from them in South San Francisco. I do have the option of getting a second opinion at Stanford, with approval from Kaiser. Although it's looking like getting treatment at Stanford is not an option for me, I'm hoping the team at Kaiser can come close to the excellent level of service and support for AN that Stanford is known for.

-Jesse

[heyct]

Welcome to the club Jesse!

I live in the Bay Area & my AN was found at UCSF (awesome experience), but I chose to have surgery w/Dr. Jackler at Stanford. I also did a consult w/Dr. Chang, UCSF-for both surgery & radiation. All my followup has been through UCSF & it is so good I almost wish my ENT there had done the surgery.

I have a friend w/Kaiser who is very ill & it is my understanding that if they cannot offer you the treatment you need, then you can go out of network with their approval. (not 100%)

I know it is a very confusing, overwhelming time, but try to get a few consults before you decide which treatment to proceed with. I think it will help clarify your decision.

I know there is also an SF support group. Not sure when the next meeting is, I'm sure you can find it online. If you'd like to chat offline, feel free to PM me.
Take care,
Carolyn

[vsfunkhouser]

Jesse,

I had some time to research acoustic neuromas prior to my first visit with the Neurotoligist and although I am 55 rather than 29... I had decided for a surgical option before I went to my first appointment. Mostly because I just want this out of my head,  MY doctor recommended the trans-lab surgery because of the size and placement of my tumor.  I know that I will lose my hearing in the AN ear and it will require some adjustment but the upside to that is that the tumor will be gone!!!

However, from everything that I have learned on this forum... each of us is a little different and your doctor will make a recommendation to you.  I see many have had multiple doctor consults before making any decision as to their treatment.  They say these tumors are slow growing which gives us the luxury of taking our time to be confident in our decisions.  It is such an emotional time when you receive your diagnosis... I would advise you to gather as much information as possible and I trust by now you have realized you have come to the best place for information and support... these people on this forum are wonderful because they have all been where we are today!  Good Luck!   

Victoria

[andreal]

Hi Jesse.  It's been 4 years since your post and I'm wondering how you fared at Kaiser and what your current status is with your AN.  I too am a Kaiser patient, recently diagnosed, and have just had my three consults with the three surgeons on the Kaiser team -- Efron, Tse, and Kung.  I'm waiting for their collective recommendation and am in that terribly uncomfortable initial period when the world feels upside down and I'm not sure which approach to go with.  My tumor is 20 mm, essentially round, and with no margin between it and my brain stem.  Experiencing mild facial numbness, hearing loss, and minimal balance issues.  Would love to know how things turned out for you.