Author Topic: Brand new, scared, and looking for a doctor in Seattle  (Read 15981 times)

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #30 on: April 11, 2008, 06:01:05 am »
Ppearl214 --- well said (re: hijacking the thread)...

Just doing my job... thanks! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

BT

  • New Member
  • *
  • Posts: 7
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #31 on: April 11, 2008, 03:34:42 pm »
Daisy Head Mazy,

Thanks for all the information.  I will be ordering some information packets very soon from that website. 

I saw you wrote something about how many doctors my insurance will let me see.  Is there a rule about the amound of consultation/interviews you can do?

I will also look into the support groups up here.  I hope there will be one meeting soon.  I would love to be able to talk to people going through the same experience in person.

Thanks again,

BT

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #32 on: April 13, 2008, 09:14:27 am »
Hi BT,

The ANA does provide a "Willing To Talk" list of those of us that volunteer time to speak on the phone about knowledge and personal experiences.  You can find further info here in this thread:

http://anausa.org/forum/index.php?topic=3252.0

Your notation of attending local support group meetings is also a fab idea. I have attended a few locally and will be attending the next one is our area.  The support group leaders truly listen to the needs of the group and often bring in guest speakers of interest for the groups.  The ANA can also provide you will the info for your local support group... also can be found from the ANA home page:

http://www.anausa.org/local_groups.html

Some upcoming activies, to give you an idea of how they accommodate the needs of fellow AN'ers:

http://www.anausa.org/group_meetings.html

Hope this helps.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #33 on: April 13, 2008, 09:22:42 am »
BT,

Answering your question:
RE
“Is there a rule about the amount of consultation/interviews you can do?�

This will depend on the insurance company a patient has. It is best to call and find out of they have a limit. I did not have a limit- but other AN posties have mentioned that they did. It will all depend on your own personal medical insurance policy.

Daisy Head Mazy
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

er

  • Guest
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #34 on: May 16, 2008, 05:46:39 pm »
Hello BT,

Welcome. It so understandable in being frighten. Lucky that they found it in time. I spoke to a lady last week that mention because they caught it small and in time  she lost very little hearing and no facial  paralyzation then the  week she lost facial paralyzation but later it all came back.
I tried for a few year for some one to listen to me that something was going on inside my head and ear.
Good luck.
eve

NW Musician

  • New Member
  • *
  • Posts: 3
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #35 on: June 25, 2008, 01:32:42 pm »
In terms of AN Docs in the pacific northwest, are there any who are especially familiar with how treatments, particularly radiation, affect musicians? I had radiation a few years ago but still get frequent headaches, sometimes severe, when I play music (a brass instrument) or am in the midst of loud, sustained music.

I guess anywhere in the Bellingham down to Eugene area and east to Spokane would be fine for me to have a consultation with someone.

NWM

Omaschwannoma

  • Hero Member
  • *****
  • Posts: 777
  • Life is a journey, not a destination
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #36 on: June 26, 2008, 07:07:07 am »
In terms of AN Docs in the pacific northwest, are there any who are especially familiar with how treatments, particularly radiation, affect musicians? I had radiation a few years ago but still get frequent headaches, sometimes severe, when I play music (a brass instrument) or am in the midst of loud, sustained music.

I guess anywhere in the Bellingham down to Eugene area and east to Spokane would be fine for me to have a consultation with someone.

NWM

Hyperacusis (sensitivity to sound) is what I suspect going on here, but I'm not a doctor.  Same thing happened to me and this is what they suspected.  Too much stimulation can bring on headache.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

NW Musician

  • New Member
  • *
  • Posts: 3
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #37 on: June 26, 2008, 11:29:22 am »
Arushi,

I read a little about hyperacusis and there are many similarities to my situation, especially cochlear hyperacusis. Thank you!

I can still use a referral to a pacific northwest Doc to confirm this and set me on a course of action if anyone has a recommendation.

NWM

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #38 on: June 26, 2008, 08:15:15 pm »
Here is a link
http://en.wikipedia.org/wiki/Hyperacusis

I know I have this -ever since the surgery. I wear an earplug in loud circumstances and carry a plug with me at all times. I am finding it difficult to participate in  :-\ and listen  :-\ to music now.

Have you thought of getting a musician’s ear?

Samples

http://www.westone.com/content/21.html

http://www.ultimateears.com/resource-guide/musician-ear-plugs.html

http://www.hearyourself.com/mplugs.htm

Daisy Head Mayzie
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

NW Musician

  • New Member
  • *
  • Posts: 3
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #39 on: June 26, 2008, 10:52:16 pm »
Thanks for your note and all the links.

Ironically, the place that I play music paid for musicians' earplugs many years ago (worrying about hearing loss) and I had them made. I didn't really use them because of the difficulty inserting them and getting them out.

Now, with AN hearing loss, it didn't really occur to me to try them for this current pain, but once the obvious is made obvious, it is obvious!! Duh!!

Thanks for the suggestion. I feel sort of stupid, but I will give this a try since I still have the plugs. Maybe just leave the one in all the time and see what happens.

Thanks

NW M

Raydean

  • Hero Member
  • *****
  • Posts: 510
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #40 on: June 27, 2008, 05:21:00 pm »
If it hasn't been mentioned earlier in this thread, I'd consider seeing Dr. Sandra S Vermeulen of Seattle.
If she didn't have the answer i am confident that she would know who would.

Best to you
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

mom of AN pt.

  • New Member
  • *
  • Posts: 43
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #41 on: July 02, 2008, 04:50:49 pm »
My daughter is only 19 and had AN surgery 3 years ago, at the University of WA Medical Center.
Her tumor was LARGE...and she lost hearing in the one ear...but other than that did well.
Now she is a student at the University of WA! 

Dr. Rostomily Neurosurgeon, Dr Duckert ENT.  Really thought this team was great.
They  have done hundreds and hundreds of these surgeries.
We also consulted with Mayberg...he is very good I hear, but we really liked the University of WA facility better than Swedish. 
Talk to several doctors before you decide on one (and ask about Gammaknife if your tumor is small).



(sorry MomofAN pt., had to remove the private email address entry, as site rules note no private info is to be publically noted, but... as a recommendation, you can PM/email behind the scenes here to share private info...... thanks for understanding. Phyl)
« Last Edit: July 02, 2008, 05:14:20 pm by ppearl214 »

mindyandy

  • Hero Member
  • *****
  • Posts: 676
  • Loving Life
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #42 on: July 15, 2008, 05:00:43 pm »
I have to agree with Raydean....go see Sandra Vermuelen. She is my CK doctor and is wonderful...very knowledgeable.
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

Dana

  • Full Member
  • ***
  • Posts: 141
  • Hi!
Re: Brand new, scared, and looking for a doctor in Seattle
« Reply #43 on: July 15, 2008, 05:52:55 pm »
I agree with what the AN "locals" have said, collectively: there are several very experienced and expert doctors and teams in the Seattle area - the one Raydean mentioned (sorry, can't remember name), Swedish, UW Med. Ctr. Otolaryngology. 

NW Musician:  My instinct tells me that the UW Med Ctr team headed by Duckert might be very helpful in your situation, or at least be able to head you in the right direction.  Within their whole department, they cover lots of bases - hearing, balance, GK, microsurgery, wait and watch.  I just have this hunch (maybe I read something in one of the doctor's profiles that showed a particular interest in music?).  In any event, I KNOW they'd take your concerns seriously.  You might want to set up an appt with them, or perhaps even write Duckert, head of the department, a long letter first explaining your situation.  The nurse that arranges all their team appointments is Kirsten; she's extremely responsible.  Ask for her.

Should we start planning for a get-together this fall?  We met in Olympia last time, but had several of our fellow ANers from Portland come up and thought that next time maybe we should meet a little closer to Portland - Chehalis maybe?

Hi, Raydean!  I've been sulking in bad winter weather, not very communicative with anyone. Hope all goes as well as possible.

Hugs,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

 


anything