Author Topic: High Volume Centers -Seeking Great Teams in US - Request  (Read 1316 times)

DZ

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High Volume Centers -Seeking Great Teams in US - Request
« on: May 25, 2022, 10:15:37 am »
I was just diagnosed -Friday May 13th - with a 21mmX19mmX15MM vestibular schwannoma by my local ENT due to left hearing loss>right. I have a bit of ringing in my left ear as well.  I am still in a bit of shock from the diagnosis and have been conducting literature searches and found this website.

I just received my Welcome Kit from the ANA and carefully read cover to cover the "newly diagnosed Handbook" written by M. Carlson MD (Mayo).  This is an excellently written booklet and I saw a statement about higher-volume centers having superior outcomes. It is certainty clear to me that with a rare condition with no scientific consensus as to treatment, I should seek out these high volume centers. 

Although I live in NJ I am able to travel anywhere in the US to be treated by the most experienced clinicians/team. As a former nurse and former biotech strategist who has worked on various rare diseases for my jobs I understand the importance on finding those with a lot of acoustic neuroma expertise.  My ENT provided 4 local specialists and I will see those. However, I would so greatly appreciate any recommendations as to high volume centers of excellence from this group.  I am 62 years old and otherwise pretty healthy and athletic and I would hate to end up with chronic dizziness/balance problems and migraines because I selected a locally convenient but not expert team.

Thanks in advance for your help!  Donna
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

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Re: High Volume Centers -Seeking Great Teams in US - Request
« Reply #1 on: May 25, 2022, 03:01:13 pm »
Hi Donna,

Thank you for making your first post!  And I certainly remember being in shock when my ENT told me I had an acoustic neuroma (or more accurately, a vestibular schwannoma -- although that term wasn't used by them).

But I commend you for doing the research that you did and for finding this website.  I probably watched 30 hours of ANA videos in my first week since my diagnosis.  The videos allow you to see and hear some of the top vestibular schwannoma specialists in the country, and you can see whom you might feel comfortable with.

You mentioned the booklet written by Dr. Carlson from the Mayo Clinic.  I read an article written by him and Dr. Link on vestibular schwannomas in the New England Journal of Medicine.  So, I contacted the Mayo Clinic and had a video consultation with them over Zoom (even though I live in Georgia).  It is one of the nice options which many places across the country now offer.  You can have video consultations over Zoom with almost anyone, and many offer free video consultations, which is amazing, in my opinion.

What you said about choosing experienced professionals to do your treatment is critical.  You don't want someone who does one or two VS a year.  You want an expert in the field who does hundreds of them.  After all, it is not your fingernail you are talking about, it is your brain.  And the best ones have less problems with dizziness/balance, migraines, facial issues, etc.  So, I think you are very wise in selecting those with a lot of experience and expertise.

As you read through the forums, you will find certain places come up over and over again as doing wonderfully with acoustic neuromas, like UCSD or House or I can name several others.  But don't rule out the ones close to you.  I have heard some very positive things about some of the centers in the New York/New Jersey area.  Some of the others with experience with the centers in your area need to comment and give their opinions.

I have two recommendations for you, Donna.  The first is to look on the ANA website for a ANA support group in your area.  You might join them in person or you might join them via Zoom.  The ones who live in New Jersey or New York may be the best ones to give their opinions about the local options.  After all, they live in that area, and they may have explored the options nearby, and they might be able to share why they avoided some places or had positive experiences with others.  You can also join ANA support groups in other parts of the country to learn more.  I attended a support group in Cincinnati once, and I met a woman who had her surgery done at a hospital in New York and had the highest praise for her neurosurgeon.  Unfortunately, I don't remember the name of the hospital or her doctor.

My second recommendation for you is to go to the Home page of these forums and find the Search field on the upper right side.  Then type in the name of a center or specialist in your area (maybe one recommended by your ENT).  It will then populate a list of posts with that neurosurgeon or center.  Those from the ANA community may have posted positively or negatively regarding the work done by that person or place.  I cherish the posts of those who have gone before us and make recommendations which are helpful.  By the way, if you are not at the Home page, you won't receive as many posts when you do your search.

 I wish you well on your vestibular schwannomma journey.  Please don't hesitate to post any questions you have or learnings you have discovered.  These forums are what we make them to be.

Best wishes,
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DZ

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Re: High Volume Centers -Seeking Great Teams in US - Request
« Reply #2 on: May 27, 2022, 01:05:14 pm »
Dear Don -
Thank you so much for your detailed reply and advice.  I will definitely spend time reviewing this site and I agree that the NEJM 2021 publication was excellent. Great idea about the zoom/teleconference calls with MDs.  And the support group advice and the searching from the ANAUSA home page! And when I use the abbreviation "VS" for Vestibular Schwannoma hopefully people will not misunderstand and think I am talking about Victoria Secret models!   :D
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

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Re: High Volume Centers -Seeking Great Teams in US - Request
« Reply #3 on: May 28, 2022, 11:50:08 am »
I can tell already, Donna, that you are going to do amazing!

And please do keep us updated on what you decided to do.  As you have already seen, the posts by our ANA Community really help newcomers!

Best wishes!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DZ

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Re: High Volume Centers -Seeking Great Teams in US - Request
« Reply #4 on: May 30, 2022, 03:50:50 pm »
Yes, all this support is wonderful!  Thanks! And lots to read!  Donna
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

 


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