ANA Discussion Forum
General Category => Inquiries => Topic started by: KellyOakland on May 01, 2008, 11:06:21 pm
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I was diagnosed with a Vestibular Schwannoma today through an MRI. The information I've researched on the internet tells me this is another name for Acoustic Neuroma. I am currently awaiting a consultation from either Neurosurgery or Ears, Nose, Throat specialists.
I would appreciate any recommendations about doctors in Northern California or anyone's experience dealing with Kaiser.
Thank you,
Kelly :)
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Kelly,
Knowing the group on this forum, you will get a lot of "welcome to the club" posts but I'll try to be the first :)
Obviously, as everyone here understands, this has not been a great "news" day for you and we all appreciate the various emotions that are surely going through your mind.
You did not mention the size of your AN ( aka Vestibular Schwannoma) and that will be an important in understanding your treatment options going forward. I think the most important thing everyone here will tell you is to take a deep breath and relax. AN's are very slow growing and you will have a lot of time to research , understand and get comfortable with a treatment and physician.
My situation is very similar to you in that I live in Northern CA ( Danville) and was diagnosed in Kaiser. Kaiser only does surgery for AN's in Redwood City and the primary Dr. is Steven Nutick. They have an agreement to do Radiosurgery with Stanford, principally Cyberknife , but like any HMO you have to push the system for it. If your AN is less than 3 cm you have both options plus "watching and waiting" open to you.
Given the similarities in our situations, my story might be of help to you and it is on the Cyberknife Patient support board at this link
http://www.cyberknifesupport.org/mark.html
If I can be of help, please let me know
Mark
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Kelly,
Let me be the next to welcome to the forum. Yes, a diagnosis is a shock.You are doing the right thing by going out and trying to find information before making a commitment to a treatment. That period of waiting to see the doctor for a consult can be unnerving. Know that because it is a benign condition, that you have the time to do your fact finding.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information. I learned that there is no one *best* way to treat it. It ends up being an individual decision. (see my thread that guides you through the decision making process)
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases.
Internet sites and reading about outcomes provides great info,
but it can also raise anxiety. Each tumor is individual and that makes the treatment outcomes "partly cloudy". They all can have unanticipated consequences--even waiting and watching.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise was. I looked for patterns in member posts related to
treatments and doctors.
Then it dawned on me that I didn't know how member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments? Could I generalize
from the qualitative data?
That caused me to put together a chart. I wanted to know
the data related to
hearing preservation, facial nerve preservation, in relationship to the
size of the tumor etc... It is another way to look at treatments.
This chart compared some of the various treatments using citations from
medical professionals, websites, or physician's e-mails. It is a laypersons
attempt to condense medical citations and information and that makes this
chart different from most. However, I am *not* a medical professional and no
decision should be made based on the chart. It was meant
to be a starting point for a conversation with your doctor. Please e-mail me if you'd like a copy.
The chart also includes some of the most common websites.. I also put myself
through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" at the http://anworld.com/
Here is another link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/
Kindest Regards,
Kate
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One more thing,
House Ear Clinic is one of the most renown places in the world for Acoustic Neuromas and diseases of the ear and they are located in LA. The best part is that you get their expertise for "free" just by sending your MRI and report to them. The House Ear Clinic website has statistics relative to facial nerve preservation on it.
http://www.houseearclinic.com/acousticneuroma.htm
Here is the mailing info:
Send the MRI scans by express delivery (be sure that you are able to track the package) to:
House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057
You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:
Telephone: (213) 483-9930
FAX: (213) 484-5900
This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)
Kate
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Pls note that other AN treating Physicians, such as Dr. Clinton Medbery in OKC and Dr. Jerome Spunberg in FL also read films for free. Just FYI notation.
Phyl
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Hi Kelly and welcome. I hope you find answers here that you seek.
Stanford is top notch in N. CA for the treatment of AN's, regardless if radio-treatment or microsurgical. There are many patients of Stanford that participate on this site (ie: matti/cheryl who had microsurgery at Stanford, as well as Mark and sgerrard/Steve that had radio-treatment, just to name a few) that I am sure are happy to share with you their overall experiences at Stanford. Patient referrals to prospective treatment facilities are important during your decision making process and I know many here that would be willing to share this info with you.
Again, welcome.
Phyl
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Thank you all for replying to my post and the information you provided. It is helping me arm myself for my initial consultation.
Some people have requested my tumor information which I received today. They are:
A 1.3 x 0.8 cm mass is identified within the left internal auditory canal. This mass expands the internal auditory canal and extends to the left porus acusticus into the left cerebellopontine-angle cistern. This mass does not contact the brainstem or cerebellar peduncle. The cochlea and vestibular aparatuses appear normal bilaterally.
Thank you again,
Kelly :)
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Hi Kelly,
Good on the size, that is still in the small category, just peeking out the end of the canal a wee bit for a look-see at the brainstem, but with no contact. You can watch and wait, do surgery, or do radiation.
The next question is: what about symptoms? Ear pressure or fullness? Any hearing loss so far? Any balance issues? Any eye twitches or facial numbness? You might also have some form of tinnitus, a phantom noise in your ear - hissing, wind, crickets, whistles, buzzing, it comes in all sorts of flavors. For smaller tumors, the presence or increase of symptoms is often an important factor in deciding whether to watch and wait, or to pursue treatment.
I myself am partial to Stanford, and Cyberknife treatment at Stanford in particular. It has worked out well for me so far, and I really like that institution.
Welcome to the club!
Steve
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Thanks for responding and the positive information. My other symptoms are partial hearing loss in my left ear (I can hear sound, but not speech), sometimes I have hissing or that really high pitched sound in my ear but I've had that off and on since I was a kid, and I've been treated for vertigo for the past 2 months.
Strangely, I got the MRI for something completely unrelated. I didn't have symptoms of what they were looking for, but they happened to be able to explain the loss of hearing I've been experiencing for the past year!
I'll let you guys know how my first neurosurgeon consultation goes once I get it scheduled and have it. ;)
Kelly
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Hi Kelly,
Welcome to the forum and our family! I grew up in Oakland (parents still there) and live not too far away in San Ramon (near Mark :))
I had microsurgery in 1998 at the California Ear Institute at Stanford with Dr. Joseph Roberson. Other doctors at Stanford are Jackler and Chang (I know I am forgetting one). All amazing!! Being in the Bay Area you have a wealth of top notch doctors who are highly skilled in both surgery and cyberknife and fortunately for you, you have a small tumor so you have time to research your options. We are here to help you with that.
Please feel free to contact me if you have any questions. I know this journey can be scary and confusing, so also here if you just need to chat.
Cheryl
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Hi Kelly,
Your tumor and location will most likely be conducive to any of the treatments. When I found that out, I felt literally confused because every doctor was telling me that their protocal would work. That is when I put together a series of questions that helped me decide. Here is the link:
http://anausa.org/forum/index.php?topic=5786.msg53229#msg53229
Kate
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I now have my initial consultation scheduled for Monday, May 12 with Dr. Stephen Nutik in Redwood City through Kaiser. Wish me luck! :)
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Good luck, Kelly :)
Let us know how your consultation goes.
Jan
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I now have my initial consultation scheduled for Monday, May 12 with Dr. Stephen Nutik in Redwood City through Kaiser. Wish me luck! :)
Hey, Kelly,
May 12th has come and gone. How did your appt with Dr. Nutik go?
Syl
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Hi Kelly,
My name is also Kelli and I live in Pleasant Hill, CA. I also have Kaiser and Dr. Nutik removed 90% of my tumor in December for 3.1cm AN. In April I had follow up cyberknife at Stanford through Kaiser with Dr. Adler. How did your appointment go with Dr. Nutik? You are fortunate to have a smaller tumor and have the choice to have cyberknife or surgery. Dr. Nutik did an excellent job with my surgery, I am very grateful to him. Please let us know what you decide to do. If you would like to contact me, I will share my experience with both treatments. We are neighbors.
Best wishes,
Kelli
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Welcome Kelly Oakland,
Exactly this very day this time last year I got “the call� from my ENT that I had an acoustic neuroma (Vestibular schwannoma is the same thing -just harder to pronounce)… I was overwhelmed… read way too much out on this forum and started to freak. Somehow (after hoards of research & decision making) I was transported from Oregon to California, walked into the Stanford ENT department with the tumor …and out without it…. Here I am, now 9 months later, doing well… however it was quite the journey in between – Nevertheless I came through it and still continue to recover and move forward with life.
Know that you have a small tumor (mine was huge), these do not typically grow fast, and in the majority of cases these are benign. You have lots of time to do research, talk to people on this forum and read up on this thing- that, last month, you had never even heard of. Just try not to get bombarded with all the information at once.
I think STEVE is a great person for you to connect with. Personally if my tumor had been discovered at that small stage, and I was living in Northern California, I would head straight to Dr. Chang at Stanford.
http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/default
&
http://www.stanfordhospital.com/search/PhysicianDetail?doc=2077
He has amazing success stories on our forum
http://anausa.org/forum/index.php?topic=894.0
http://anausa.org/forum/index.php?topic=5469.0
http://anausa.org/forum/index.php?topic=5105.0
http://anausa.org/forum/index.php?topic=5903.msg54753#msg54753
http://anausa.org/forum/index.php?topic=6063.msg58464#msg58464
http://anausa.org/forum/index.php?topic=5530.msg50571#msg50571
Their ENT dept is good too. My AN tumor was discovered way too late for me to qualify for Gamma Knife… however if I could turn back the clock and choose which route I would have gone IF my AN was discovered sooner- Dr. Chang’s office, there in California, would be the door I would walk through.
Daisy Head Mazy