#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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@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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Hi @soulsearcher2017
Can you tell us a little about you medical history? When was your last physicians follow up? What kind of symptoms are you dealing with? Do you have past history of the same symptoms? Have you notified your local physician of symptom changes?

Looking forward to learning more about you.
Dawn

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.

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?

I am a 31yr old female with a small AN on my left side. I have been to Mayo (Rochester) as well as UofM and St. Joes (CyberKnife center) I received rather different opinions from all. (Am currently watching and waiting)I have tinnitus and migraines (one to two a month for several days) My symptoms started the same time I got pregnant and were the worst at 9mo pregnant. (Vertigo etc) After having my son they subsided substantially and I had my MRI where we discovered the AN. I breastfed for 18mo and have now been done for 7; I feel it hasn’t been as bothersome since I quit nursing. I also found it to be more noticable and irritating during my period. My question is: (one of them lol) is there a correlation between AN and hormonal changes? One surgeon told me I would need to have it removed before getting pregnant again or it would swell and cause more damage, another told me that wasn’t true…hard for me to believe there isn’t a relation-at least in my case…

@caitlinkeese

I am a 31yr old female with a small AN on my left side. I have been to Mayo (Rochester) as well as UofM and St. Joes (CyberKnife center) I received rather different opinions from all. (Am currently watching and waiting)I have tinnitus and migraines (one to two a month for several days) My symptoms started the same time I got pregnant and were the worst at 9mo pregnant. (Vertigo etc) After having my son they subsided substantially and I had my MRI where we discovered the AN. I breastfed for 18mo and have now been done for 7; I feel it hasn’t been as bothersome since I quit nursing. I also found it to be more noticable and irritating during my period. My question is: (one of them lol) is there a correlation between AN and hormonal changes? One surgeon told me I would need to have it removed before getting pregnant again or it would swell and cause more damage, another told me that wasn’t true…hard for me to believe there isn’t a relation-at least in my case…

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I am not sure if there is a documented correlation. I can tell you anecdotally that I was diagnosed after giving birth with a very large 3+ cm tumor which was compressing my brainstem and which caused hydrocephalus. There was recently a thread in a Facebook group I am a member of where there were 20ish women who were all diagnosed during or after pregnancy or whose tumors grew during. Wishing you the best. I would do my research and pick who you feel the most comfortable with. Best to go with a high volume center.

Hi everyone,
The video will appear at the top of this page at the top of the hour. We hope to get to as many of your questions as possible during the live event.

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?

@jherara

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?

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@jherara The video is playing right now. See the video at the top of this page http://mayocl.in/2pusKFw

It will also be archived on this page for viewing any time.

@jherara

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?

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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.

I cannot hear the questions being asked from the female commentator, is there anyway to give her a microphone ? thanks for running this series, carrying a AN is no fun

@muffincat

I cannot hear the questions being asked from the female commentator, is there anyway to give her a microphone ? thanks for running this series, carrying a AN is no fun

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Thanks @muffincat. We’ll have to get a second mic for the next session. We’ve asked the interviewer to speak up. You should be able to hear her a bit better now. Luckily if you re-watch the video, you can see the questions in the chat window here and on Facebook.

@muffincat

I cannot hear the questions being asked from the female commentator, is there anyway to give her a microphone ? thanks for running this series, carrying a AN is no fun

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Yes I was then able to hear sufficiently thank you.. a very informative session

Absolutely Wonderful! Thanks so much! Had my AN in 1992! You know so much more!

@jherara

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?

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jherara You can see it running but not hear it? Please check that the volume is on. Click the loud speaker to the right of the time ticker.

@muffincat

I cannot hear the questions being asked from the female commentator, is there anyway to give her a microphone ? thanks for running this series, carrying a AN is no fun

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It was a great session. Dr. Weisskopf speaks very plainly and clearly. So appreciated!

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