Author Topic: Recently Diagnosed - Researching Doctors  (Read 4149 times)

featheri449

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Recently Diagnosed - Researching Doctors
« on: December 15, 2014, 04:52:12 pm »
Hello. I am a 29 yo.male diagnosed with a 1.5cm AN in November 2014. The majority of the AN is located in the IAC. No balance or facial issues. The only hearing loss is at 6000 Hz.

After doing some research, I am scheduled to meet Dr. Henry Brem and Dr. Francis Howard at John Hopkins, and Dr. John Leonetti and Dr. Doug Anderson at Loyola University this week and the first week of January, respectively.

I have met with my local hospital (West Virginia University), and considering ruling them out due to the lack out AN surgeries they perform each year (8-10).

Brem/Francis and Anderson/Leonetti both have great resumes and reputations. Has anyone had an experience with these doctors? Recommendation?

Also, WVU and Loyola both agree that retrosig is the favored approach.

Thank you for any and all information

Ruthie Mac

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Re: Recently Diagnosed - Researching Doctors
« Reply #1 on: December 16, 2014, 11:23:45 pm »
Johns Hopkins is top shelf...but the free consult with House in L.A. can be very helpful - they have an impressive history  treating AN's, and even if you don't go to them for treatment, they can help you feel confident about your decision.
Best of luck to you...
Ruthie
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

Janey

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Re: Recently Diagnosed - Researching Doctors
« Reply #2 on: December 17, 2014, 12:34:58 am »
Hi
I am also in WV, and recently diagnosed.  In November I saw Dr. Adam Cassis,  at  WVU and for now
I am in the watch and wait status.  I was pretty stressed out at my consultation with him, and did
not think to ask about how many AN surgeries he has performed.  Is this the physician you saw?
He made a comment that although acoustic neuromas were rare to  the general public, they were
not rare to him.  I felt confident in his knowledge, and comfortable with his personality.  Your
info that WVU deals with so few acoustic neuromas on a yearly basis has me rethinking my plan.


CHD63

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Re: Recently Diagnosed - Researching Doctors
« Reply #3 on: December 17, 2014, 08:04:10 am »
Hi featheri449 and Janey .....

Welcome to this discussion forum, where there is a wealth of information.  Just remember that none of us are doctors, but we share our experiences with others.  Many, many acoustic neuroma patients never reach out for support and go back to their normal routines following treatment.  And then there are a number of us, who have stayed on this forum to support and reassure those patients who are looking for information, answers, support, etc.

If you have not already done so, be sure to check out the home page for the Acoustic Neuroma Association https://www.anausa.org/ for accurate information on treatment options, treatment locations, etc.

Gather all of your questions and feel free to ask them ..... that's why we are here.

Clarice

PS:  see my answer to Janey's post on Dr. Cassis.  I do not know anything about the doctors at Hopkins you mentioned.
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

featheri449

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Re: Recently Diagnosed - Researching Doctors
« Reply #4 on: December 17, 2014, 08:51:18 am »
Hi Janey.

I sent you a PM in more detail, but in short I think Dr. Cassis is a great physician (he completed his fellowship at House). I am considering other options to make sure I find the right fit.

Clarice - Thanks for staying on the forum, and sharing your experiences. I really appreciate it.

raji83

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Re: Recently Diagnosed - Researching Doctors
« Reply #5 on: December 17, 2014, 09:37:09 am »
i checked with johns hopkins too but ended up with Dr Golfinos and Dr. Roland in NYU ,Newyork. I had same size of tumor and my facial and balance was perfectly fine like yours. I had hearing loss too. I had my surgery in oct 2014. Now 80% recovered.

michellef08

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Re: Recently Diagnosed - Researching Doctors
« Reply #6 on: February 02, 2015, 11:53:09 am »
Hi! I was 27 when I had my surgery (almost 2 years ago) for my AN. I read a few of your posts and wanted to reach out since I know there are not a lot of young people on the discussion board, or diagnosed with our tumor in general.

I am from the DC area and also met with Dr. Francis and Brem. I actually had surgery on the calendar at  Hopkins, but then upon further research, cancelled and had my surgery at House in LA. Have you sent your MRI there for a free consult? Even if you don't decide to go with them, it is a great resource.

I had Middle Fossa surgery on my 9mm tumor, and they saved my hearing completely, and I had zero facial or balance issues whatsoever! I can't give them enough praise.

Let me know if you have any questions! I am happy to share my story.
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.