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Author Topic: Who is the best team in California?  (Read 4700 times)

stephSF

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Who is the best team in California?
« on: November 20, 2011, 10:45:35 pm »
I need surgery, just diagnosed last friday after my MRI.
Can anyone really narrow down the very best place in CA?  I am 47, I have 6 children I need to care for still. 
I am glad this forum is here.
Stephanie
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1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!

leapyrtwins

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Re: Who is the best team in California?
« Reply #1 on: November 20, 2011, 10:49:57 pm »
If you are 100% sure you want surgery and you're already in California, go to House Ear Institute (HEI) in Los Angeles.

However, if you aren't 100% sure you want surgery and want to know more about radiation go to Dr. Chang @ Stanford.

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Larry

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Re: Who is the best team in California?
« Reply #2 on: November 20, 2011, 10:51:22 pm »
Stephanie,

Slow down a little.

Depending on some key criteria, you may not need surgery.

Please share with us the size of the growth and whether you are having any issues such as balance or headaches or dizziness.

The size is important as you may be ok for radiation treatment rather than surgery. Surgery is very invasive and at best, you will have about a 6 week downtime vefore you could get back to work. Most certainly, you will need looking after for the first 2 weeks at least.

Radiation treatment - and there are different options. I had mine spread out over 5 days - each session was 30 minutes and i went back to work straight after.

Please share some of your details with us and we will be able to offer advice.

Laz
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

stephSF

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Re: Who is the best team in California?
« Reply #3 on: November 20, 2011, 11:21:39 pm »
"1.6 cm homogenously enhancing left cerebelloponatine angle mass extending into the left internal auditory canal.  Differtial diagnosis include meningioma or righ nerve VII schwannoma."  I have severe hearing loss and distorted speech sounds and tinnitus that is like people tap dancing in the rain, ringing, and feedback with swooshing.  It feels full.  My balance and facial nerves seem fine.  This started 2 months ago.  I went to urg care 2 times with misdiagnosis of course.  Then took matters into my own hands and had a full audiology exam, referral to ENT oto...MRI...diagnosis last friday night over the phone.  Just want to be done.  I really don't want to chance it coming back and that is why I am thinking about surgery.
Stephanie
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1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!

Larry

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Re: Who is the best team in California?
« Reply #4 on: November 22, 2011, 08:05:49 pm »
Stephanie,

Understand how annoyed and angry you feel towards this affliction. Please take a bit of time out to research.

Having surgery doesn't guarantee that it won't grow back (mine grew back after surgery). Research the surgical options (3). Research the radiation treatments available.

You also need to research the medicos that you choose to do the procedure. You should find out what their personal % success rates and fail rates rae. Like facial paralysis, regrowth etc.

Re your hearing, regardless of the type of treatment you choose. You will not regain any hearing. If you choose Translab surgery, you will lose all your hearing in that ear. The tinnitus is usually correlated to the hearing loss. The worse the hearing loss, the worse the tinnitus - usually. You do get used to that though. Also, you need to research the post treatment side effects. For example, I have daily headaches (since 2002) - 2-3 days of the week its unbearable. i take a bucket load of drugs and have had lotsa pain management treatments which haven't really helped and of course the AN grew back so my surgery was a waste of space except for inflicting pain.

Don't get me wrong, there are a lot of people who had surgery with no side or long term effects. Everyone is different.

Depending on your kids ages, you will need someone to look after them for you for a number of weeks if you choose surgery. In fact, they can look after you (lol).

Sorry to wham you with this but please make sure you explore all the options before rushing into a decision that you regret

laz
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

leapyrtwins

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Re: Who is the best team in California?
« Reply #5 on: November 23, 2011, 07:02:22 pm »
Laz is right.

Surgery does not mean your AN is never coming back.  Chances of regrowth are generally 1-2% (extremely good), but even one cell left behind in surgery has the potential to regrow.  There are many folks on the Forum who had regrowth.

You sound like your mind is set on surgery - and obviously it's your choice - but in my opinion you owe it to yourself to cover all your bases and at least look into radiation.

Just my two cents worth,

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

JAndrews

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Re: Who is the best team in California?
« Reply #6 on: November 23, 2011, 07:38:14 pm »
I would go to House. I had Dr. Brackmann and Schwartz. I had a meningioma which was originally diagnosed as an AN. I am fine, its all out, and my life goes on! MRI is clear. I traveled from Florida. Best decision I have ever made
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2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.
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