Author Topic: MRI results suggest time to proceed to surgery,, yuk!!  (Read 3577 times)

alabamajane

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MRI results suggest time to proceed to surgery,, yuk!!
« on: July 17, 2011, 11:19:14 am »
HI have been on several times and this is very helpful.. I have been w&w and now must move forward... probably as reluctantly as most of you!!
I have consulted with HEI's Dr Slattery and do see a local ENT,, but have not found a "suitable" Dr. anywhere locally so feel VERY frustrated. I know of HEI's reputation and of several other clinics/hospitals but would like to be somewhat closer if I can get comfortable with a Dr. I do have family in Chicago area also and have done some research on Dr. Wiet...
Finding a good Dr. seems to be almost half the battle, I have been scared of the surgery for almost three years now, ,but as I say,, time to "own" it and move forward..symptoms are getting increasingly more troublesome... vertigo, dizziness, full feeling in head and headaches galore!!
any help with this journey would be much appreciated...
thanks,,,,
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

LisaP

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Re: MRI results suggest time to proceed to surgery,, yuk!!
« Reply #1 on: July 17, 2011, 12:49:29 pm »
Hi,

You are right. finding a good doctor  with experience is hard.  I live in Western Massachusetts and the Doctors with experience with surgery of AN's are in Boston, a hour and a half ride for me.  Are you definitely having surgery?  I continue to W&W with my next MRI in Oct.  I too have daily symptoms so I understand with wanting to get this over with.  Hang in there

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Jim Scott

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Re: MRI results suggest time to proceed to surgery,, yuk!!
« Reply #2 on: July 17, 2011, 01:38:38 pm »
Hi, alabamajane ~

We can all commiserate with the difficulty of finding a doctor with 'AN expertise'.  Like you (and many other AN patients) I faced the same dilemma five years ago.  I was extremely fortunate (blessed, really) to find a 'local' doctor (30 miles from me) with 30 years of successful AN removal surgeries on his resume.  I found this physician because my wife's neurosurgeon (she had spinal surgery in 2004) didn't specialize in skull/brain surgery but another doctor in the practice, did.  Voilà!  This neurosurgeon (in his sixties) had thirty years of experience operating on acoustic neuromas and was very confident that he could 'debulk' mine and then have it 'treated' with FSR (radiation) and, effectively destroy it without damaging facial nerves.  Long story short:  he did all that and the outcome was excellent.  No complications - and the tumor 'died'.   My point is that there are fine doctors in every part of the country with the knowledge and skill to remove your AN with a good surgical outcome in your favor.  You may want to consider checking with MASA - the Medical Association of the state of Alabama: http://www.masalink.org/ for a lead on doctors in your area that perform AN surgery.  In any case, although HEI is a good fallback, I trust that you'll be able to locate a reputable doctor that is experienced in AN surgery, in your area.  Other ANA discussion forum members in your state or relatively close to you may also chime in at a later date with more information.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: MRI results suggest time to proceed to surgery,, yuk!!
« Reply #3 on: July 18, 2011, 05:47:02 am »
Jane -

I'm a patient of Dr. Wiet's partner - Dr. Robert Battista.  I had both my AN and BAHA surgeries with him and I couldn't be happier.  My outcome was excellent - only permanent issue is SSD (single-sided deafness).

I highly recommend Dr. Battista as well as Richard Wiet.  They just revamped their website, you should check it out (www.chicagoear.com)

I don't know how large your AN is, but Dr. Battista does radiation (GK) as well as surgery - if it's an option for you, you might want to look into it.

The Ear Institute of Chicago, where Wiet and Battista practice along with Wiet's son Mark, has been certified as a Center of Excellence by the ANA.

If you have any specific questions about their practice, don't hesitate to PM me.

Best,

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

Barb909

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Re: MRI results suggest time to proceed to surgery,, yuk!!
« Reply #4 on: July 28, 2011, 08:35:39 pm »
Hi,

Have you thought about the doctors in Cincinnati? Dr. Theodosopolous is so very nice as is his partner for ANs, Dr. Pensak. They were hosts of the ANA Symposium this June and have been dealing with these ANs these for a very long time. (Mayfield Clinic has a wonderful reputation.) It would be closer to home for you than LA, and a much smaller city! I live in Seattle, but see these guys for my AN, and will have surgery with them if/when needed. I am 58 and am in W & W for another year, as of this past June, unless symptoms increase. I feel completely confident with these doctors and the hospital.

I have had vertigo for many years, tinnitus and some hearing loss in the last few, but luckily have no headaches at all. So sorry to hear that you do. Good luck to you as you weigh your options. It is confusing and scary. Luckily we all have others on this forum for help, and as comrades!

Barb

Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment