#MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf

Fri, Apr 28, 2017
1:00pm to 1:30pm ET

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Dr. Peter Weisskopf, Neurotologist, at Mayo Clinic in Arizona discusses Acoustic Neuromas.

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What in your opinion is the best approach for a small 2mm acoustic neuroma in my right ear when I have left ear deafness from translabrynth acoustic neuroma surgery 6 months ago? I fear for total deafness if the right tumor grows as quickly to 28mm in 10 years as my left tumor did. I am 59 years old.

I am 25 years old and I had my 4.9 cm AN partially removed back in 2014. Following my first surgery, I had facial paralysis for a few weeks that I was able to correct with facial exercises. Now it is starting to grow again and I’m concerned about undergoing CyberKnife radiation. I’ll be having 5 sessions (each 1 hour) of radiation over a week and a half this summer and I’m concerned about facial paralysis and regrowth again after this procedure. What is the success rate of CyberKnife procedures? Is facial paralysis something I should be concerned about again?
Thanks!

Welcome to Connect, @meganrichter and @monirose. I look forward to your participation in the upcoming Video Q&A with Drs. Bendok & Weisskopf. In the meantime, I’d like to introduce you to others talking about acoustic neuromas. Please check out these discussions:

– Anyone else diagnosed with acoustic neuroma, a benign brain tumor? http://mayocl.in/2iVdye1
– Acoustic neuroma, avoid antioxidants? http://mayocl.in/2oWmMe4

Hi @sharonmarie @rosesareredmylove2016, @tracylynnedaley72 @katfred @pedie @jrismyname @amkaloha @kkkk @lindalb @hoosier and @cynaburst. I’d like to invite you to join us on Friday, April 28, 3:00 p.m. PT (5:00 p.m. CT/ 6:00 p.m. ET) for a video Q&A with Dr. Bernard Bendok, neurosurgeon, and Dr. Peter Weisskopf, Neurotologist, for a chat on Acoustic Neuromas

Simply click View & Reply in the email notification to see all the details and to sign-up.

Drs. Bendok & Weisskopf will answer questions live. You do not need a Facebook account; you can participate in the Video Q&A right here on Connect by returning to this page and the video will be shown at the top of the page. You can post your question here before or during the presentation. I hope you’ll join us.

Liked by katfred

I would love to sign up for this. Kat

Could you discuss the advantages and disadvantages of gamma knife and why not use it to shrink a tumor that growing before more symptoms arise.

I am due for another MRI this spring. The first one a year ago showed a peanut-size acoustic neuroma on my right side. My ENT doctor suggested wait and watch and radiation, if and when necessary. Over several years, the only symptoms I noticed were gradual hearing loss in my right ear, ringing and a clicking in my ears Also, I was told that radiation could cause cancer in 2% of the cases. Acoustic Neuroma is even rarer than that! Surgery seems to leave patients with many other problems. Are there any new immuno therapy type drugs to treat acoutic neuromas now? There are some new drugs to treat cancer tumors I have read. Where is the best experienced doctor and place to have radiation treatment – in or near Illinois? (I am a 69-year-old female.)

It was an MRI that revealed the neuroma–and showed the hydrocephalis. The neurosurgeon put a shunt into my brain, which really helped with balance, mental alertness, etc. He recommended that we do nothing with the neuroma. I’ve read that that surgery is really difficult, and after the first brain surgery, I would rather follow his judgment and wait. The neuroma destroyed the hearing in my right ear, but the EMT doc found a hearing aid that is meant for a person who deals with this. In the right hearing aid is nothing but a microphone, which transmits sound to the left aid. Works fairly well. I am treated at Shands at the U. of Florida.
Good luck.

Does Mayo still regard endoscopic removal of acoustic neuroma an unsatisfactory approach and , if so, why? I realize it can only be applied to smaller tumors. I will also be able to check for any information on the chat the 25th. Thank you.

Liked by jherara

Hello:,
I didn’t know The Mayo did endoscopic for brain tumors.
When I had my Brain surgery, I had 4 neurosurgeons who did my surgery, and they flip-flopped every 4 hours, each doing a separate part of my surgery,
Endoscopic for brain surgery??I ve never heard of it at the mayo…

I don’t live in Arizona, but I’m interested in learning more from this chat. I’m currently struggling to afford treatment out-of-state at a facility where the staff primarily deal with this type of tumor and can handle a patient who has multiple conditions that pose challenges that are not normal for the typical VS/AN patient. My only questions so far:

1. I’ve received several different responses to this question elsewhere, but I’m interested in general in your opinion — Why do many health facilities including your own continue to refer to this tumor as an “acoustic neuroma” when the misnomer actually makes the tumor sound less serious than the more accurate vestibular schwannoma and also causes confusion in regards to the full extent of potential symptoms?
2. Like another responder, I’m also interested in immunotherapy options. Have the doctors in your clinic heard anything interesting about or currently use treatments involving precision medicine similar to various immunotherapy options being used for cancers? I’m only 41 years old, but my other health problems can make any of the currently available common treatments far more difficult. I’m also not interested in radiation at all because of the cancer risk.
3. Lastly, I’m also interested in finding out if your clinic offers an endoscopic surgical treatment that reduces the surgical site size and the operating time.

Thank you.

I need help. Ive been on watch and wait now for 4 years. My symptoms are getting bad. I dont even know if im commenying correctly on here. Can somebody help me from here? If im doing this wrong. I apologize. Thank you

@soulsearcher2017

I need help. Ive been on watch and wait now for 4 years. My symptoms are getting bad. I dont even know if im commenying correctly on here. Can somebody help me from here? If im doing this wrong. I apologize. Thank you

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Do you have a neurosurgeon or neurologist following you?
If so, you should make an appt for an MRI soon. Your instinct that you’re not feeling well is important to listen. Take care.

I just had my second MRI six months out from first. One neurosurgeon says let’s operate….right it won’t be any big deal !???the 2nd neurosurgeon let’s wait another 6 months …wait and watch..
I am going for a 3rd & 4th opinion!????!!!!!

@dhay

I just had my second MRI six months out from first. One neurosurgeon says let’s operate….right it won’t be any big deal !???the 2nd neurosurgeon let’s wait another 6 months …wait and watch..
I am going for a 3rd & 4th opinion!????!!!!!

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My personal experience is that I wish I hadn’t waited so long. If I could have a do over, it would be take it out when it’s smaller, less complications. Good luck.

Liked by Shay

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