Author Topic: Surgery/Radiation options  (Read 1087 times)

pja27

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Surgery/Radiation options
« on: May 31, 2023, 07:55:16 am »
I have an acoustic neuroma that is considered medium in size, 2.5cm. I'm looking for recommendations for providers in the northeast area - NY, NJ, OH, PA, MD.
I have hearing loss and balance issues. From what I understand, radiation can be an option given the size of the tumor. Are there minimally invasive surgery options
available that anyone knows about or has had experience with?

bri-82

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Re: Surgery/Radiation options
« Reply #1 on: May 31, 2023, 12:39:06 pm »
I use Johns Hopkins in MD. I've been working with Dr. Tamargo (neuro) and Dr. Chien (oto-neuro). Hopkins has more than a few great surgeons/doctors that have an AN specialty and its always ranked highly for neurosurgeries (nationally) in general. But it takes time to get in there because everyone uses them.
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins

Greece Lover

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Re: Surgery/Radiation options
« Reply #2 on: June 01, 2023, 08:28:44 am »
Sorry you had to join the club.  I've heard good things about Hopkins on this forum.  You can search the forum in order to target specific info people have posted about their experiences there.  You can also always send your materials to the House Clinic in LA, probably the highest-volume and best rated AN treatment center in the country, and they will give you a free consult.

As one who has been through surgery, I don't think there's any option that is "minimally invasive."  One of the weird things about these tumors is that there are the various treatment options.  They all have positives and drawbacks.  Look for a place that treats AN A LOT.  Ask a lot of questions, including percentages of various outcomes for the various treatment modalities. 

And, people on here are usually pretty vocal about talking through their experiences with their treatment choices.  Keep in mind that these are always anecdotal, of course! 

Good luck! 
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

rupert

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Re: Surgery/Radiation options
« Reply #3 on: June 01, 2023, 08:11:02 pm »
I have an acoustic neuroma that is considered medium in size, 2.5cm. I'm looking for recommendations for providers in the northeast area - NY, NJ, OH, PA, MD.
I have hearing loss and balance issues. From what I understand, radiation can be an option given the size of the tumor. Are there minimally invasive surgery options
available that anyone knows about or has had experience with?
Did any of the doctors that were involved in your diagnosis give you any recommendations?    Usually an ENT would run into these a couple times a year and would know how their patients have faired with treatment and where they went.

donjehle

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Re: Surgery/Radiation options
« Reply #4 on: June 05, 2023, 04:01:16 pm »
Hi pja27, and welcome to the ANA Forums!

I do not personally know of specialists in OH, NY, MD, NJ, or PA.  I have read some positive remarks on the forums about some of the neurosurgeons or those providing radiation.  But I don't have any experience with any of them.

However, I have two suggestions for you.  First, you might want to connect with some of the ANA Support Groups in those areas.  Sometimes, they allow you to attend via Zoom, and many times the Support Groups have people in the area who have experience with specialists who work there.  They can tell you first-hand.  And, I believe there are ANA Support Groups in OH, NY, MD, NJ, and PA.  I attended one in OH, even though I live in GA, but I attended via Zoom, and it was very helpful for me.

The next suggestion I have is for you to go to the home page of these forums (What I'm about to share ONLY works from the home page), and type "OH' or "NY" or "MD" etc. in the Search area, and then click on the Magnifying Glass.  It will bring up every reference to the state you search for.  Some of the references will be for support groups in that state.  Some references won't be helpful at all.  But you will also find those who asked questions about specific providers in those states.  And you will find comments from those who have had experience with the doctors in those states.  You can find valuable information by doing the search in the forums.

I wish you well in your search for a great specialist for you!
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.