Cyberknife at Kaiser Redwood City anyone?

[jacobson69]

Hello all,

My residual AN that was operated on May 2008 has shown some definite signs of growth.  My question is: has anyone had CK for their AN at Kaiser Redwood City?  If yes, what was your experience?  I talked to Dr. Tse just last Thursday and he seems experienced and all but I just want some input from you guys before I go with it. 
Thanks for any info you can provide! 

Hui

[Jesse]

Hi Hui,

I'm so sorry to hear of your regrowth. I just learned of my 2.3 cm AN this past Friday, and I can imagine how learning about the regrowth can bring back bad memories of the initial diagnosis experience. My provider is also Kaiser, but my appointment with a neurosurgeon in Redwood City is still three weeks out. I'll be meeting with Allen Efron, not Dr. Tse, which I find curious.

If you're hesitant with proceeding forward, have you considered getting a second opinion anywhere else, such as Stanford? I do plan to try and get a second opinion other than Kaiser. There is a Stanford support group on April 7th where you may be able to meet Dr. Chang and ask questions:
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/acoustic_neuroma.html

Also, I'd appreciate to hear your experience with Kaiser so I can know what I can expect. When I do finally meet with them, I'd be happy to compare notes with you.

Thanks!
-Jesse

[jacobson69]

Hi Jesse,

I am sorry to hear about your recent diagnosis but I am glad you found this ANA site.  You can find good information and great support here.  In terms with my experience at Kaiser Redwood City, I can only speak from a standpoint of surgery because that was my only option at a time (my AN was 3.5 x 2.5 X 2.7cm). That was the scariest experience I've ever had in my life.  However, the staff at Kaiser Redwood City were fantastic and made me feel reassured because they've done so many of these AN surgeries and they are so experienced that I felt comfortable with them.  My neurosurgeon was Dr. Nutik and at the time I met him, he had done about 680 AN surgeries (both retrosigmoid and translab).  He did a great job on mine.  I did not have any complications and my recovery time was fast.  The nurses at Kaiser Redwood were just wonderful and very caring.  Dr. Nutik and I had a plan:  that was to sacrifice the hearing nerve, take out as much of the AN as possible, and don't tinker too much with the facial nerve even if that meant leaving residual AN on it.  We would monitor this residual AN and at the sign of regrowth, we would treat it with radiosurgery. 

Fast forward 3 years later.  Dr. Nutik reported some signs of regrowth and he recommended me to Dr. Tse for radiosurgery.  Kaiser has the newest Cyberknife equipment.  At this time, there are only 2 other places with this generation of equipment: one in China and one coming to Taiwan.  Over the last year they have done 45 Acoustic Neuroma treatments with this machine.  The Stanford and Kaiser teams have worked closely for years.  It used to be that Kaiser would send patients to Stanford for radiosurgery until they got their own equipment.  My sense is that there is a lot of collaboration of both information and staff between Kaiser and Stanford.  Dr. Tse worked for years at Starford before coming to Kaiser.  He has been involved in over 400 AN radiosurgery treatments over the last 10 years.  I am actually going back for a second meeting to go over the procedure. 

I know this is a very scary experience you are going through and the waiting period is just not helping.  I am really glad you found this site because there is a lot of scary crap on the internet that does not help.  I don't know the specifics of your situation and I am assuming that during this consultation with Dr. Efron you will be discussing the treatment options for your specific case (size, location, is it compressing surrounding tissue, etc).  I suggest that before meeting with Dr. Efron and/or Dr. Chang, make sure you have ALL the questions you want to ask written down because you will need that kind of clarity in order to feel comfortable and confident.  ALSO, have somebody with you to take notes and for support.  I don't remember some bits and pieces of those meetings because I was nervous, but your note taker will catch whatever you missed.  I am going for this radiosurgery and having asked all the questions that I needed to ask my doctor I am confident that my doctor, his team, and I can kick its ass.  I wish you the best.  It is normal to feel edgy during this waiting period, but this too shall pass.  Let me know if there is anything else I can support you with.

Take care,
Hui

[Jesse]

Hui - You don't know how much reassurance you just gave me with your response. I'm so glad to hear the team at Kaiser is experienced in treating this disease, that they have been working so closely with Stanford, and the fact that they have top of the line Cyberknife equipment. This news is very encouraging to me and really helps put my mind at ease. Thank you so much!

[jacobson69]

Hi Jesse,

I am glad that sharing my experience has helped you.  Yes, there seems to be collaboration going on between the 2 facilities.  While I was meeting with Dr. Tse, he mentioned that Dr. Adler was actually in the building.  Dr. Adler, Dr. Chang, Dr. Tse, along with other staff at Stanford have collaborated a paper titled:

Multi-Session Stereotactic Radiosurgery for Vestibular Schwannomas: Is There an Advantage to Fractionation?

If you google this, you will be able to find this article.

Many blessings,
Hui

[DavidF]

Thanks to all who have shared their experiences.  It has been very helpful and I just wanted to share my experience and journey so far.  I had CyberKnife (CK) radiosurgery at Kaiser in South San Francisco couple of weeks ago.

I had a sudden loss of hearing one day to my right ear in March 2011.  I was put on steroids for a few weeks before being diagnosed with AN after an MRI was performed.  I have a 1.1cm x 0.7cm AN, which is considered small, so I had different treatment options, but radiosurgery sounded the best.  It's a sight the first time you see the AN "lit up" on the MRI.

At first, I was glad that it was a benign tumor but my main concern was trying to figure out options on how to recover my hearing.  It was a little disheartening to learn that trying to just maintain your hearing was the best outcome as the hearing nerve is quite sensitive and that the loss is permanent.  After reading through the treatment options and other side effects people had, I have come to accept the severe hearing loss and fortunate not to have many of the other symptoms of this condition (except minor fullness of ear and mild tinnitus).  Still trying to adapt, and hoping the hearing doesn't deteriorate even further although it has during the past couple of months prior to CK.

It was great to find the ANA and this forum to hear people's stories and a support group with people with a similar condition.  The other good source was Myacoustic.org, which had interviews with Dr. Steven Chang.  http://www.myacoustic.org/steven-chang-interview-acoustic-neuroma-treatment.html  Also medical journal articles at:  http://www.ncbi.nlm.nih.gov/pubmed

Kaiser referred me to consult with 3 neurosurgeons:  Dr Tse (CyberKnife: machine arm moves) and Dr Efron (open surgery) in Redwood City and Dr Sahrakar in Sacramento (Gamma Knife: table moves).   I was considering "wait and watch", but my hearing seemed to be deteriorating.  All 3 neurosurgeons pretty much came to conclusion (including Dr Efron) that radiosurgery was probably the best option for me, but was great to have the multiple consultations and each seemed quite experienced in dealing with AN's.  Dr. Tse was able to provide statistics as far as surgical outcomes for hearing preservation, tumor control, etc.

My treatment decision making process:  My AN was relatively small; a non-invasive option seemed better than opening up my skull with a long recovery period, avoiding risk of facial weakness, and I'm trying to retain what hearing that I have.  The statistics of the different outcomes seemed somewhat comparable with slight only differences between different radiology methods.  My health insurance plan is with Kaiser and Redwood City/S. San Francisco are closer to where I live.  Knowing the strong connection between Stanford and Kaiser was also reassuring.

A week before my CyberKnife surgery, I had both another MRI in Redwood City, a CT scan and fitted for a plastic mask in South San Francisco that holds the face in position during the procedure.  I believe that the Kaiser - South San Francisco is the only Kaiser in N. CA with CyberKnife and I heard that they perform about ~2-3 AN's per week.  Dr. Mellender was my radiation oncologist and also reviewed my case and consulted on what I should expect.

I had 3 doses of radiation (6Gy each) for ~40 minutes each over 3 days.  The procedure is painless and feel almost nothing as you just lay there wearing the plastic mask as the Cyberknife moves around and you try to stay still.  The machine notices any movements that you make and makes corrections.  The machine's buzzing noise, knowing that radiation was going through you, made me a little nervous though.  I just kept my eyes closed throughout.  They suggest bringing music.  Amazing that this is outpatient surgery and I felt no real difference immediately afterwards.   Only immediate after effects have been slightly higher tinnitus and fullness of ear, but are deemed normal immediately after and subsided to prior levels.  I could pretty much do anything immediately afterwards.

My experience with Kaiser has been pretty good.  Although there are many specialists along the way, I've felt the care has been good, people have been friendly, and I've been informed along the way. 

We'll see how the hearing progresses and will have another MRI done in a few months to see what has happened to the AN.

[molmos000]

In 2005 I had a (AN) vestibular schwannoma removed by way of surgery, and Dr. Nutik performed the operation at Kaiser Redwood City.  Initially, he told me he would removed most of the tumor and 'shave' around the facial nerve in order to preserve its vital function.  Unfortunately, at the time there wasn't as much information out there as there is now, and I opted for surgery at Dr. Nutik's behest.  Long story short, he cut the facial nerve which left total paralysis on the right side, and he also decided to use a new post surgical bite block for my tongue.  This bite didn't hold during the recover stage and I bit off a quarter of my tongue, and it resulted in me being in ICU for about a week.  It's been 10 years since my surgery and my quality of life has definitely taken a major slide, but I can only hope others do their research and read as much information as there is before making a decision.   

[mcrue]

In 2005 I had a (AN) vestibular schwannoma removed by way of surgery, and Dr. Nutik performed the operation at Kaiser Redwood City.  Initially, he told me he would removed most of the tumor and 'shave' around the facial nerve in order to preserve its vital function.  Unfortunately, at the time there wasn't as much information out there as there is now, and I opted for surgery at Dr. Nutik's behest.  Long story short, he cut the facial nerve which left total paralysis on the right side, and he also decided to use a new post surgical bite block for my tongue.  This bite didn't hold during the recover stage and I bit off a quarter of my tongue, and it resulted in me being in ICU for about a week.  It's been 10 years since my surgery and my quality of life has definitely taken a major slide, but I can only hope others do their research and read as much information as there is before making a decision.

molmos000,

I'm very sorry to hear about your experience with microsurgery. Thank you for sharing your story. I agree with you that others should do as much research as possible.

Best wishes.