#MayoClinicNeuroChat on Acoustic Neuromas with Dr. Weisskopf

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

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!????!!!!!

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.

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...

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.