Author Topic: Just Diagnosed Looking for Doctors in WA and West Coast  (Read 3255 times)

Little_Bear

  • New Member
  • *
  • Posts: 19
  • Be extraordinary
Just Diagnosed Looking for Doctors in WA and West Coast
« on: July 16, 2013, 06:24:17 pm »
Hello,

I'm out in WA state and was diagnosed with an AN several weeks ago (4x5 mm, right ear/auditory canal) about a month ago. I am 24 years old and have never had any health/medical issues before in my life, so being diagnosed with an AN was incredibly shocking to my family and I.

The ENT ran hearing tests on me and the test results showed that I still have perfect hearing in both of my ears.

My ENT strongly recommended that while the tumor is slow growing, that I don't take too long to figure out how I would like to treat it since my hearing itself hasn't been damaged (I have a fullness and ringing in my right ear which is what led to the diagnosis).

I am leaning towards microsurgery because I would just like to have the tumor removed and from everything I've read, it seems that smaller tumors tend to have higher success rates (with facial and hearing preservation).

Being in WA state, can anybody recommend a highly skilled specialist in the Seattle/WA state area?  (I am open to any suggestions to highly regarded specialists outside the state too though).

mandy721

  • Full Member
  • ***
  • Posts: 226
Re: Just Diagnosed Looking for Doctors in WA and West Coast
« Reply #1 on: July 26, 2013, 04:10:24 pm »
Hi,

I'm not familiar with doctors who specialize in AN surgery in Seattle.  A good place to start would be to contact the Seattle/Tacoma support group leader, Barbara Shinn.  Here is a link to the Support Group list.  Scroll down and you will find her contact information.  [url]http://anausa.org/index.php/support-groups/support-groups-by-state/url]

With a small tumor, you have the full range of treatment options and it is smart to explore them now. 

Stanford Hospital in Palo Alto and the House Clinic in Los Angeles do a lot of AN surgeries, and Stanford also offers CyberKnife. They are both good resources on the West Coast. 

I wish I had more information about doctors, but please come back if you have questions or want some information.

Miranda


Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

robinb

  • Sr. Member
  • ****
  • Posts: 257
Re: Just Diagnosed Looking for Doctors in WA and West Coast
« Reply #2 on: July 27, 2013, 08:06:28 am »
Hi-

When I was doing my research I spoke with someone in Washington. Do you have the WTT list; he should be on it. If not, send me a PM and I will ask him to contact you. Heres what he had to say:


Quote
Here’s contact info for Swedish if you want to check them out as well.  They offer both Gamma and CyberKnife.

Swedish NeuroScience Specialists
James Tower
550 17th Ave. Suite 500
Seattle, WA 98122
Tel: 206-320-2800
Fax: 206-320-2827
www.swedish.org

You may also want to Google Sandra Vermeulen, Swedish.  She is the one who did my treatment.  A truly amazing woman
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

mindyandy

  • Hero Member
  • *****
  • Posts: 676
  • Loving Life
Re: Just Diagnosed Looking for Doctors in WA and West Coast
« Reply #3 on: July 28, 2013, 01:38:06 pm »
Dr. Backous who I believe is at Swedish now & Sandra Vermullen who does GK & CK. She did my CK years ago. Great people. 
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 834
  • It's NOT a too-mah! (Anymore!)
Re: Just Diagnosed Looking for Doctors in WA and West Coast
« Reply #4 on: July 28, 2013, 03:07:07 pm »
Hiya Little Bear!!  Sorry you had to find us but you'll be glad you did, there's a lot of caring people here who can help. Mandy posted some great advice about looking at the physicians link here on the ANA website.  In my humble opinion, what you said about your ENT doc saying that you should hurry up and do something about your AN is a bit untrue.  Your tumor is considered small, so you do have time (unless the AN is pressing into your brain, which usually doesn't happen until it gets more than 4x bigger than what you have now.  And there are very very VERY few cases I have seen over the years based on other AN patient's experiences here on this forum that anyone who has had anything done will keep their full hearing.  So yes, you should be concerned about your hearing but just know that unfortunately it may be compromised in some way.  You do have lots of options to you (watch and wait, surgery or radiosurgery) so don't rush into this until you get all the information you can so you can make a decision. You said you were leaning towards surgery, just know that of the three that are usually done (translab, retrosigmoid and middle fossa), translab will guarantee deafness.  So find someone who has done a lot of retro or middle fossa surgeries to have a good chance at preserving hearing.  And don't worry, the hardest part of this whole process IS actually making the decision on what to do. Once you do that then everything will in someone else's hands!  I am not a doctor, just someone who, like everyone else on here, has been through what you are going through now.  Just knkow that my opinions that I stated above are only MY opinions so don't take them carved in stone.  Good luck in finding someone and let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

It is what it is

  • Hero Member
  • *****
  • Posts: 569
Re: Just Diagnosed Looking for Doctors in WA and West Coast
« Reply #5 on: August 08, 2013, 01:26:41 pm »
Hi, I am from Oregon and had middle fossa surgery one year ago with  the House Ear Institute doctors in L.A.  If you have any questions, I would be happy to share.  Caring thoughts being sent your way,  Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Little_Bear

  • New Member
  • *
  • Posts: 19
  • Be extraordinary
Re: Just Diagnosed Looking for Doctors in WA and West Coast
« Reply #6 on: August 22, 2013, 04:40:32 am »
Hello everybody,

Thank you all for replying! I am sorry for such a delay, this summer has been a hard one for me.

Over the last few weeks I have done so much research and have actually contacted Dr. Friedman at House down in LA. He was exceptionally friendly and full of knowledge. I was told that I was a prime candidate for a Middle Fossa since the tumor is small, I run a low chance of any facial problems and that I should  retain "normal" hearing (somewhere around 80% or more) after surgery.  My heart is set on going down to HEC/HEI. I have full confidence in Dr. Friedman after all the amazing things he has done for so many others. Now it's just a matter of getting my health insurance company to work with me to be referred down there.

 
Hi, I am from Oregon and had middle fossa surgery one year ago with  the House Ear Institute doctors in L.A.  If you have any questions, I would be happy to share.  Caring thoughts being sent your way,  Karen
 

Karen thank you,

I do have a few questions, I will message you!

 


anything