Newly Diagnosed in CA

[kdoinCA]

Hello AN Posters,
My name is Kathy and I was diagnosed with a 12x7x8 Acoustic Neuroma on 11/19/10.   On 12/8/10, I met separately with two doctors at Kaiser Permanente in Redwood City, CA. Because of the small size of my tumor, I was informed that I have all 3 treatment options available to me. Dr. Karol, a Head & Neck Surgeon mentioned Cyberknife, but also thought waiting with a follow-up MRI in 6 months might be a good plan. A concussion on 7/17/10 is what led me to having an MRI and he hinted at waiting so we could distinguish the symptoms related to the AN.  Dr. Tse, Neurosurgeon and Kaiser’s Cyberknife specialist in Redwood City stated his preference as microsurgery.  I walked away from Kaiser feeling very confused.
I’ve done quite a bit of on-line research including the AN Assn website, and I’m still left feeling confused and not yet prepared to commit to either radiosurgery or microsurgery. I guess without consciously making the decision, I’m just waiting.  This is not making some of my family members very happy. So now that the holidays are behind us, I’ve decided to post my case and get feedback from all of you that have been through the decision making process of having and dealing with an AN. 
I’m particularly interested in getting answers and feedback to the following:
Have any of you been treated at Kaiser Permanente, and specifically the Redwood City, or South San Francisco locations?
Have any of you been treated by the above referenced doctors?
Have any of you experienced taste disturbances and tingling and numbness around your mouth while/after eating?
What is the definition of “wonky head”?
I’d like to thank you in advance for taking the time to respond to my inquiry.
~Kathy   

[CHD63]

Hi Kathy and welcome to this forum of caring, supportive friends!

Not happy that it took an AN for you to find us, but glad you did!  First of all, if you have not already done so, send for the free informational booklets from the ANA ..... they are very informative and reassuring:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

I do not live in your part of the country, but others do, and will answer your questions about Kaiser and Dr. Karol.

Wonkyhead is a term coined by Deb (on this forum) to describe that disoriented, swooning feeling we get when our vestibular systems misfire.  It isn't true vertigo or dizziness because it is not swirling.  Hope that helps.

I did not have the taste disturbance but many others have.  Much depends on exactly where your AN starts growing ..... closer to the cochlea or to the brainstem, and whether it is touching the facial nerve or not.  ANs are technically vestibular schwannomas, which mean they are an outgrowth of the Schwann cells that cover the vestibular (balance) nerve ..... but which direction they grow causes different symptoms.

Ask away with more questions and stay with us on your journey.  The decision-making process is one of the worst parts of the whole thing.  We are here to support and help in any way we can!

Clarice

[leapyrtwins]

kd -

there are several threads on the Forum about Kaiser in Redwood City.  I was going to post links here for you, but they are too numerous.

If you type "Kaiser" in the search box - located right under your profile information when you log in - and then click on "advanced search" you'll find them.

I noticed a thread that mentioned Dr. Tse and another that mentioned Dr. Nutik.

Good luck, and welcome to the Forum.

Jan

[Syl]

Welcome, Kathy

I was treated by Dr. Kato & her team at Kaiser in Fremont. I did go to Redwood City for a 2nd opinion & met w/ Dr. Nutik.

I was very pleased with Kaiser & don't have any regrets. What specifically about Kaiser were you wondering?

Syl

[TJ]

Kathy

Each of us have had to make that very hard decision as to which way to deal with the AN.  Six months in "watch and wait" is not a long time.  It may seem like it but you want to make sure that the residuals of the concussion have gone away.  It is typical for a surgeon to recommend surgery, but you are still a good candidate for CyberKife if you choose.  I don't know those doctors but there are some people in the San Jose support group that have had it done at Kaiser.

You are doing the right thing, get all the facts and make the right choice for you.

TJ

[sgerrard]

Hi Kathy,

This is a link to a post by Francesco, who did a long interview with Dr. Chang at Stanford, about Treatment Choices. If you have an hour, it is worth listening to. The interview is on Francesco's website, and there is a link for that at the very bottom of his post.

http://www.anausa.org/smf/index.php?topic=14261.0

It is confusing to hear different opinions from different doctors. Most of us found that after a while, one plan of action emerged that seemed like the right one for us. If you stick with it, you will get to that point too.

Welcome to the club.

Steve

[Jim Scott]

Hi, Kathy ~

I'm sorry you have to deal with an acoustic neuroma diagnosis but I wanted to add my welcome to the ANA website discussion forums.

I live in New England and cannot offer answers to your questions regarding Kaiser Permanente facilities or their doctors, but others have, can and will. so I trust you'll receive useful information on those questions.  Clarice offered you a cogent definition of the phrase 'wonky head'.  I did not experience the tingling sensations around the mouth that you've described but I believe they are quite common with acoustic neuromas which, although the same (benign) tumor, grow and affect each AN patient just a bit differently. 

Jim

[Mickey]

Hi Kathy, Welcome! I`m going into my 4th year of being diognosed now with almost the same exact size as your AN (small). When diognosed I was almost 58 now 62 which had alot to do with making my decision to W+W. Your symptoms seem normal enough minus tinnitus which is pretty common among AN patients.  Every case although similar is a bit different. This is a great website to gather plenty of information without rushing into doing anything until you feel comfortable with what you have learned to make some good decisions. AN`s are usually very slow growing (if at all) but in the interim must be monitored just in case. It`s also good to note that with todays technology and good Dr`s a good outcome is not to far away whatever your decision. Best wishes, Mickey

[bell]

Hi Kathy,
welcome to the site. Sorry to hear of your AN. This is a great site to do research then do other research. I think you have time to W&W and make the right decision.
Everyones experience is different. House and Ear in CA will give free consultation, check it out. Surgery is major with side effects that are not welcomed.  Take into cosideration your age, health, and life style. Best of luck in your decision.
Bell   

[kdoinCA]

Dear AN Posters,
Thank s so much for all of the welcoming responses to my inquiry.  I feel more at ease just having made the connection with others that have experienced this bump in the road in life’s journey.  And after reading numerous posts, I realize that mine is a very small bump as compared to many.
 
I would like in turn to respond to some of your comments and questions:

Clarice – Yes, I did send for the informational booklets and I agree they are informative regarding the AN basics.  Thanks for the definition of “wonkyhead”, and “swooning” so perfectly describes the daily sensations I’ve been feeling.  The tingling and numbness around my mouth started in September and has increasingly gotten worse.  I’m going to do more research on what it means in relationship to the facial nerve.

Jan – Your suggestion was great!  I did a search on Kaiser, Redwood City and found many posts.  And, I’m happy to say that most reported positive experiences.
 
Syl – How did you go about requesting a 2nd opinion from another Kaiser facility?  I am looking for feedback from others on their experience with having CK or microsurgery at Kaiser.  Our insurance coverage either through my employer or my husband’s is limited to Kaiser.  Can you expand on your issues with “chronic post-surgical headaches?  Do you know if they are a typical post-surgery symptom with Retrosig surgery?  I’ve had migraines since I was 12, are they of this pain level?

TJ – I believe the affects of the concussion are gone since it’s been 6 months.  Can you expand on the reasoning for “watch and wait” if you’re already experiencing most of the symptoms related to ANs?  I can understand this option if the tumor is very small and you don’t have any symptoms, but Dr. Tse from Kaiser and Dr. Chang from Stanford, as well as other AN info I’ve read, states that in most cases whatever symptoms you have going into surgery you will have after surgery (to some degree).  Does it make sense to wait until your symptoms worsen if surgery isn’t going to improve them?  Also, I understand that it’s typical for a surgeon to recommend surgery, and that’s what’s confusing in my case.  The head and neck surgeon is suggesting CK, and Dr. Tse, the CK doctor said his preference in my case is open surgery.
 
Steve – Thanks for the link, and actually I listened to this interview when it first came out, but need to listen again.  I found out about it from Dr. Chang when my husband and I attended a Support Group meeting on 12/2/10 at Stanford.
 
Mickey – I would like to ask you the same question as stated above to TJ regarding your understanding of the reasoning for “watch and wait” when you are presenting with symptoms.  I guess I didn’t mention it in my initial post, but I do have tinnitus.  My left ear has continuous buzzing. I relate it to the sounds of radio frequency.  Although, sometimes it sounds like an ocean is roaring through my head.  Also, loud and high pitched voices cause discomfort to that ear. The results of a hearing exam on 10/28/10, found a significant asymmetrical hearing loss.
 
Bell – Thanks for your suggestion for a free consult with HEI.  Even though I can’t use them as an option because of insurance purposes, I would like to get their opinion.

I apologize for this post being so long, is there a length standard I should follow?
~Kathy

[Mickey]

Hi Kathy! We share pretty much the same size + symptoms. One thing about age with AN, their is research that somewhere along the the line is that they can pretty much reach their limit. At 62 now and "stable" for goin into 4 years since diognosis and god only knows how long, I`m willing to monitor with the hope of not intervening. Whatever symptoms I`ve had for so long you can say I`m used to with them not really being a big problem in my life other than annoyance which I can`t fully attribute to AN, maybe I`m aging a little also. W+W is a viable treatment along with surgery and radiation.
It` all individual and all can work out well. As for me I`m staying healthy as I can feeling pretty good keeping the faith. Best wishes, Mickey P.S. if they told me treatment could also get rid of tinnitus I may consider it, but then again after having tinnitus for 30 years I might not know how to feel without it! Ha Ha. In any case take your time and accumulate the knowledge you need to make you own decision.

[Syl]

Syl – How did you go about requesting a 2nd opinion from another Kaiser facility?  I am looking for feedback from others on their experience with having CK or microsurgery at Kaiser.  Our insurance coverage either through my employer or my husband’s is limited to Kaiser.  Can you expand on your issues with “chronic post-surgical headaches?  Do you know if they are a typical post-surgery symptom with Retrosig surgery?  I’ve had migraines since I was 12, are they of this pain level?

When I went to see Dr. Kato, the neurotologist in Fremont who would explain my MRI & treatment options, I asked her about getting another opinion. She arranged for me to see Dr. Nutik in Redwood City.

I think I've only had one migraine in my entire life before AN surgery. So I don't know first hand what a typical migraine is like. I began getting headaches about 2 weeks after surgery. I began to take Tylenol on a regular basis because it kept the pain under control. The pain usually came on suddenly. My head throbbed, sometimes even breathing made it hurt more. Light & noise made the pain worse. Sometimes, I got nauseous & even vomitted. I always had to stop what I was doing. It was pretty debilitating. Then I found that a heating pad applied to the neck often relieved the pain within 30 mins or so.

I eventually got around to seeing a neurologist about my headaches. He let me know that Tylenol, the way I was using it, lead to rebound headaches. I was taking 1000mgs of Tylenol 3 times a day, which is alot. So he put me on Pamelor (Nortriptylene), which helped get me off my Tylenol habit. After almost a full year of taking Pamelor, my headaches had diminished in frequency and intensity so I stopped taking Pamelor.
Instead of getting debilitating headaches almost daily, I now get them about 3 times/week & they are not migraines anymore. I still take Tylenol, but only about 1 to 2 times per week.

Headaches are more common with retrosig, but I'll never know that choosing another surgical approach or radiosurgery would've had a different outcome.

With Kaiser, you are in good hands. They work with the best. My neurotologist's team included Drs. outside of Kaiser. The other neurotologist, Dr. Steven Cheung is with UCSF in the Head & Neck Dept. They're some of the best out there for dealing with brain tumors.

I hope this helps.

Syl

[CHD63]

Kathy .....

There is no requirement (that I know of) for length limit on posts.  I guess it makes sense that we should not write a book ( ), but your post was certainly not long!  It really helps the rest of us to get to know you better.

Glad you are getting some answers to questions.  As we say many times, the research phase of this whole thing can be very overwhelming.  Sometimes you just have to put it aside and think about fun things or do something entirely different for awhile.

Many thoughts and prayers as you walk through the maze of information.

Clarice

[Jim Scott]

Kathy ~

Please don't feel a need to apologize for the length of your message.  If there were a word/length limit on posts, I'd be in big trouble!  On some issues, I can get very effusive.  However, on these forums, the only limitation is how far one wishes to test readers patience (and attention spans).  If you feel you need more space to ask or explain something, feel free to take as much as you believe is necessary.  My philosophy is that those who don't wish to read a long post will avoid it but those who are interested - your intended 'audience' - will take the time.  Of course we all try to be concise but that is not always easy to do in some instances where the situation is complicated and requires a more detailed explanation.  We don't 'text' here, we communicate - and you're welcome to use whatever space you need to do so effectively.

Jim

[suboo73]

Hi Kathy!

Another welcome to the Forum - the folks here are FANTASTIC!

My AN was misdiagnosed for over 12 years, so I suppose by default, I have been in Watch & Wait a long time!  And I continue to W & W at this point.
When discussing my case with my sister-in-law who is a nurse and a nurse administrator for a home health care agency, she wanted to make sure I was clear with the fact that W & W is a viable choice for me - in other words, I don't 'have to' choose surgery or radiation.

I see that you are gathering all the facts and doing what you need to do to educate yourself about your AN.
The AN journey is not always easy, but as others have said, we are here and will listen.

Take care and my prayers are with you.

Sincerely,
Sue