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Apr 28, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

Hi Monirose, Yes. I was logged in. I eventually was able to access the non-live video stored on your FB page. It crashed Flash on the first attempt, but eventually it started working. I’ve decided I’m going to wait until tomorrow to watch it elsewhere though since there are now some problems with slow playback. As for particpating in the FB Live stream: That’s been an intermittent problem as I mentioned above where it works sometimes and then it doesn’t, but during this event I didn’t even think to try your FB page b/c I was trying to use the embedded video area above. I honestly didn’t realize for that you were using FB Live when I signed up for this event.

Hi Colleen: I apologize if I came off too strongly earlier. Today has been a bad day with my blood pressure going up combined with rapid changes in barometric pressure. I honestly could not figure out why you didn’t understand what I meant and the lack of access to the live stream and repeating myself was making me more and more irritable. I now see that I was a bit confusing when I said that I could “see” that it was playing: I meant that obviously I could tell from what people were saying that it was apparently working for others. I thought I had been really clear though when I originally said that I couldn’t play the video. Anyway, I know that you were just trying to help. Thank you.

Apr 28, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

No. I received a “Video Unavailable Sorry, This video could not be played” message. Again, this is a problem I’ve had intermittently with the video format you used for this chat and the Facebook suggestion to solve it never work. Should I just assume that there won’t be any other version or transcript available?

Apr 28, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

Yes. I can see that the video is playing now. Again, it’s not working in my browser, which is why I asked about YouTube, another format or a written transcript of the discussion. Thank you.

Apr 28, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

I just received a message that I can’t play this video. I sometimes have difficulty with FB Live. Will you have a YouTube, other video format or written transcript available after the live chat?

Apr 28, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

Additional question: Today, I was asked if a pre-treatment VS/AN tumor that is causing symptoms qualifies as a “traumatic brain injury” or is that designation only used with permanent injuries?

Apr 27, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

I agree with your response to Shay even though I haven’t had mine out yet. I’m not even supposed to be watch and wait (i.e. it was supposed to be removed Jan. ’16), but if anyone can get it removed when it’s small, then that’s the best course of action. I simply had a lot of problems with finding a reliable team in my state coupled with life events and not being able to afford all of the things that come with taking time from work, surgery and after care given my health complications and other responsibilities since my support system is almost non-existent. I too have been getting progressively worse. I have times when I have feelings of pressure in my head and cognitive and emotional problems on top of intermittent balance difficulties and increasing tinnitus in the tumor side ear. Two weeks or three ago, I worked for three days without taking enough breaks day in between and a long-distance friend said that she had been worried that I was having a stroke because my word choices and spelling were so horrible while we were chatting online and I wasn’t writing much and didn’t want to stay on. At the time, I just felt so “off.” I also keep having intermittent problems with math, facial numbness on the tumor side and other things.

So, yeah, Shay, get your extra opinions.

Part of the reason I’m in my situation is because the ER three years ago messed up when assessing my symptoms and a neurologist who I had never met phoned in a diagnosis to ER staff, then the radiologist at the same hospital messed up with diagnosed the problem and communicating with my former neurologist and I didn’t find out about the tumor until months later by accident. Because I had no idea that the pressure feeling worsens when I’m upset or the relation between blood pressure and ICP before I found out, I had an upsetting day with increasing pressure feeling in my head and no systems in place to try to alert me to stop interacting with people until the symptoms pass and warn clients about my condition, I lost my cool with my biggest client and then lost that income source and have not been able to regain anything similar since. The neurosurgery team I saw then kept downplaying the tumor as a cause of my symptoms since I have so many other conditions and the one doctor only admitted that it was likely the tumor after a different staff member said that some of the memory problems during a test were actually typical with this tumor, I found the Vestibular Disorders Association’s symptoms page which matched the majority of my symptoms and I confronted the doctor. I then found out months afterward I didn’t get my surgery that I was outright lied to by that same doctor about the facial nerve’s condition.

So, again, don’t be too concerned about getting extra opinions since it appears that having multiple opinions is better than trusting any one doctor outright.

Apr 25, 2017 · #MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf in Brain Tumor

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.