Author Topic: Undiagnosed-but-concerned in Michigan  (Read 3909 times)

shoegirl04

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Undiagnosed-but-concerned in Michigan
« on: April 03, 2010, 01:45:54 am »
 ??? Hello everyone! I am not diagnosed but I have a few questions. My father had AN and went through multiple surgeries with regrowth, and I have now been diagnosed with pulsatile tinnitus one month ago. The loud pulsating started 2 months ago and gets so loud I can't even think!! I also get stabbing pains in the back of my ear that come and go very quickly. I went to my PA and he thinks I'm crazy and offered me antidepressants that I declined to take. I am going to see another doctor Tuesday morning and am wondering what I need to talk to her about so I am not seen as crazy again. I'm going to ask for the MRI with contrast, but what other questions or info should I be informed with? Are these hereditary?? Any good doctors to see in the Thumb area of Michigan? Thanks!
« Last Edit: April 03, 2010, 11:38:09 am by Jim Scott »

leapyrtwins

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Undiagnosed-but-concerned in Michigan
« Reply #1 on: April 03, 2010, 10:57:04 am »
Shoegirl -

I'm not sure what is in the "thumb area" of Michigan (yes, I am geographically challenged  ;) ) but the doctors at Michigan Ear Institute (MEI) are wonderful.

Jan
« Last Edit: April 03, 2010, 11:38:56 am by Jim Scott »
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

CHD63

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Undiagnosed- but-concerned in Michigan
« Reply #2 on: April 03, 2010, 11:32:00 am »
Shoegirl .....

Sounds like you are on the right track to ask for an MRI with contrast ..... the only way to definitively diagnose an AN.  Here is praying it is not an AN, but they find the cause and a successful treatment.

Ah, Door County ...... one of the true naturally beautiful wonders in our country ..... lighthouses, fish boils, gorgeous scenery .....

Clarice
« Last Edit: April 03, 2010, 11:39:49 am by Jim Scott »
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

shoegirl04

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Re: Undiagnosed-but-concerned in Michigan
« Reply #3 on: April 03, 2010, 02:35:05 pm »
The Thumb Of michigan...I am located at the tip of it, a small town, Pigeon about three hours north of Detroit. I am asking for the MRI after reading all of the posts and conversations here. I am so glad I found this forum!!
« Last Edit: April 03, 2010, 02:36:51 pm by shoegirl04 »

CHD63

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Re: Undiagnosed-but-concerned in Michigan
« Reply #4 on: April 03, 2010, 04:22:06 pm »
Oops, wrong thumb!   :-[  You are on the right thumb!  ..... but I am sure equally beautiful in that part of the world.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Denise S

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Re: Undiagnosed-but-concerned in Michigan
« Reply #5 on: April 04, 2010, 07:54:24 pm »
Hi to a fellow Michigan person.   For starters:  GOOD for you not just jumping to the antidepressants.   Be strong with your doctors, you need to be your own advocate sometimes.   You should be able to request a brain MRI from any doctor and maybe ask them to pay attention to the IAC (internal auditory canal)....where the AN's tend to form.     THEN, if something show up, I would request to be seen by Dr. Kartush at Michigan Ear Institute which main office is in Farmington Hills (I wasn't able to get him, but he has been rated the best for MI).       

I have read where some say they are heraditary, then others no....just be safe and don't wait around.   There are multiple other tests that can be run too.   Mine were ran at MEI because my doctors and ENT around here in Ludington, MI (western side, middle of state on Lake Michigan).   MEI seems to know the most and do the most for those of us in Michigan.   Plus, I know a few others who have been there for other internal nerve issues, tinnitus, ear stuff, etc.   SO they would be a good place for an opinion anyways.   BUT, like I said, if you are going to see your regular doctor, they can at least get the ball rolling with a detailed MRI  (MAKE SURE it is with AND with OUT contrast)

Feel free to post here of PM me if you have any other questions :-)     

Good luck, please post after your appt. Tuesday what they say and decide to do!    Don't forget....it's your choice and you are the one who needs to pay for it and get a piece of mind.

Denilse Sanford (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

shoegirl04

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Re: Undiagnosed-but-concerned in Michigan
« Reply #6 on: April 05, 2010, 08:18:51 am »
Thank You so much!! I am starting out with my nurse practitoner because I'm pretty sure I need a referal to see an ENT with my insurance. I didn't do the antidepressants because I know I am not depressed or crazy! I am also a nurse and know the difference!! I felt so horrible the day I saw that doc and he thought i was crazy to hear a whoosh in my head!! Thanks for the name of Karush I will ask my NP about him and try to get in to see him, or another doc at MEI.  I will post how my apt goes, if she thinks I'm crazy too, then I will find another doc to order an MRI. Thanks so much for your support!!

leapyrtwins

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Re: Undiagnosed-but-concerned in Michigan
« Reply #7 on: April 05, 2010, 09:02:44 pm »
Shoe -

while most ENTs can diagnose an acoustic neuroma, not many of them treat ANs.  Ultimately you want to see a neurotologist. 

Jan
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

shoegirl04

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Re: Undiagnosed-but-concerned in Michigan
« Reply #8 on: April 06, 2010, 09:06:34 am »
good morning!! I saw my nurse practitoner this morning...my MRI is scheduled tomarrow at 11:30.  Glad to get things moving!

leapyrtwins

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Re: Undiagnosed-but-concerned in Michigan
« Reply #9 on: April 06, 2010, 04:37:09 pm »
Good luck.  Hope your MRI is clean!

Jan
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

wendysig

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Re: Undiagnosed-but-concerned in Michigan
« Reply #10 on: April 09, 2010, 12:53:50 am »
Shoegirl,

I'm keeping my fingers crossed that you don't have an AN, but if you do, they are benign and very treatable, as you know.  Keep us posted.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!