71
AN Issues / Re: New member, symptoms questions.
« Last post by skier on May 16, 2025, 05:46:20 am »Terrific, Mark! Very happy to hear this.
Best,
Skier
Best,
Skier
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72
AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on May 16, 2025, 03:40:26 am »Well first post after surgery. First day was rough, no sugar coating that one, but feeling better each day. Spent 2 days in ICU, now I'm just out on the floor. Told I'll most likely be sent home Monday, making my stay 6 days. They were able to preserve what hearing I had, although it isn't much, as I was already legally deaf in the left ear, just not totally deaf, so I can still tell direction of louder sounds. Balance am told is better than most at this point. I got up and walked the hallway yesterday afternoon with just someone holding my arm. Yesterday morning I was using a walker so that was a quick transition. Post op headache was probably the worst headache I ever had in my life, but after 2 days seems to be gone now. Thank you all for your support and advice, it was useful and I believe really helped.
73
Inquiries / Re: Mayo for Treatment/s
« Last post by bfoley on May 16, 2025, 03:33:57 am »Greetings Kamama62-
I was treated at Mayo in MN. Started with Gamma in 2019 - deemed to be a failure (part died party kept growing) so I had translab surgery in 2023. Let me know what questions you have!
I was treated at Mayo in MN. Started with Gamma in 2019 - deemed to be a failure (part died party kept growing) so I had translab surgery in 2023. Let me know what questions you have!
74
AN Issues / Re: Just found out I have AN. Questions
« Last post by ESH on May 15, 2025, 05:31:36 pm »About 2 years ago I noticed by accident that I couldn’t hear as well out of my left ear as my right ear. I thought nothing of it at the time and figured it may just be congestion or some weird anomaly that would correct itself. It hasn’t changed since then. It doesn’t affect my day to day so it is really impossible to notice unless I completely block my right ear. If my right ear is blocked while listening to a podcast for example - I need to turn the volume up a bit to hear with my left ear.
Finally after 2 years I went to the ENT (this April) who did an audiogram and discovered that I have what is referred to as to as cookie bite hearing loss (mid frequency), meaning I have trouble hearing the frequency of peoples voices. However, I did still have 100% word recognition in my bad ear at 65db, meaning perfect word recognition at a louder volume.. He advised an MRI as the next step which revealed acoustic neuroma in my left ear.
Aside from the partial mid frequency hearing loss in my left ear, I have no other symptoms. I’m wondering what people would recommend for someone in my situation. Considering the only symptom is hardly noticeable and doesn’t effect my day to day life, I am wondering what the best course of action would be. I have read that these tumors sometimes randomly permanently stop growing. Given that my symptoms have been the same for 2 years (possibly longer as I only noticed incidentally) I am leaning towards a wait and watch approach. I’m sure an additional MRI will follow to determine if and how much it is growing. But if it’s stable I’m leaning towards wait and watch. Thoughts?
You and I are in approximately the same place. I just found out that I had an AN in my right ear last January. I have upper range hearing loss and it does affect my ability to hear speech. I also find I do not locate dropped items as efficiently as I once did. Unlike you, I have tinnitus, which is getting more and more intrusive. I have taken to falling asleep with music on so I don't focus on it the same way.
What has come across to me loud and clear is that I am not in an emergency situation and can wait and get a bit more data. I like data (and I also know that the quality of the first MRI was not as good as it could have been.) So, at least for now, I have decided to watch and wait until after a second MRI in October 2025. I also know that I am good at handling uncertainty so I can afford emotionally to wait.
I've seen Dan's chart (and suggested some additions which he graciously accepted.) I found it helpful.
You're not alone. This appears to be one of those things (like a lot of things in raising children) where you just have to make your best decision based on what you know and go with it.
Good luck,
Ellen
75
Pre-Treatment Options / Re: Newbie - contemplating treatment options - Radiation vs Microsurgery
« Last post by DanFouratt on May 15, 2025, 01:47:51 pm »Dear Orgo,
Welcome to the group. Sorry you are here but this is a great resource. One thing I discover in my journey was surgeon recommend surgery and oncologist radiosurgery. Just a reminder I am not a medical professional just another patient that went on the same journey.
One thing I would say is ensure this is not their first time doing the surgery, another way of saying a high volume place is better. UCSD did a webinar on that within the year. I simply asked my doctor about their number of surgeries. I was at a teaching hospital and asked if you or your resident will be performing the surgery. One of the doctors I was pestering with many questions looked at me and said, "you missed the most important one, this is not my first rodeo."
There is also resources here for finding Doctors. Like Michelle I went CK in the end.
Not sure of your age, I was was 61 when I found out, had it irradiated at 63.
With respect to your priorities all paths have potential issues and potential bad outcomes. There is no guarantee with this tumor regardless of what decision you make.
I went with radiation and when I told my ENT/Surgeon I said I just made you job a little harder if you need you to go in it our, he agreed. HE was part of my radiation team. I am doing my follow up with him and not the radiologist for various reasons. I have also heard of radiation after radiation but no experience there. I have also hear of radiation after surgery. So the long answer to your question is yes.
I know of no issues carrying a dead tumor in your brain. I did not find any in my research as long as it stays dead. There is the fear factor about what the tumor really is that can play on some people's mind.
I also do not know of any detail information regard long-term quality of life. I know there is a study taking place, as I get survey question to answer every so often. Pretty sure it is from Mayo. If you need I can dig for it.
In your quick reviews of what you were told, I would question the surgeon about how long after your return home you can return work.
I call this a decision journey, we all make it. In my journey I put a decision matrix together to help me organize what I was hearing. (I spoke with many people before making my decision.) I have said this several times on this site, the best advice I received is when you make a decision work on making that decision work and do not second guess yourself. I recently updated the matrix just to keep it current. If you would like to see it please email at Dan4att@gmail.com.
Good luck on your journey and if you have any questions please reach out,
Dan
Welcome to the group. Sorry you are here but this is a great resource. One thing I discover in my journey was surgeon recommend surgery and oncologist radiosurgery. Just a reminder I am not a medical professional just another patient that went on the same journey.
One thing I would say is ensure this is not their first time doing the surgery, another way of saying a high volume place is better. UCSD did a webinar on that within the year. I simply asked my doctor about their number of surgeries. I was at a teaching hospital and asked if you or your resident will be performing the surgery. One of the doctors I was pestering with many questions looked at me and said, "you missed the most important one, this is not my first rodeo."
There is also resources here for finding Doctors. Like Michelle I went CK in the end.
Not sure of your age, I was was 61 when I found out, had it irradiated at 63.
With respect to your priorities all paths have potential issues and potential bad outcomes. There is no guarantee with this tumor regardless of what decision you make.
I went with radiation and when I told my ENT/Surgeon I said I just made you job a little harder if you need you to go in it our, he agreed. HE was part of my radiation team. I am doing my follow up with him and not the radiologist for various reasons. I have also heard of radiation after radiation but no experience there. I have also hear of radiation after surgery. So the long answer to your question is yes.
I know of no issues carrying a dead tumor in your brain. I did not find any in my research as long as it stays dead. There is the fear factor about what the tumor really is that can play on some people's mind.
I also do not know of any detail information regard long-term quality of life. I know there is a study taking place, as I get survey question to answer every so often. Pretty sure it is from Mayo. If you need I can dig for it.
In your quick reviews of what you were told, I would question the surgeon about how long after your return home you can return work.
I call this a decision journey, we all make it. In my journey I put a decision matrix together to help me organize what I was hearing. (I spoke with many people before making my decision.) I have said this several times on this site, the best advice I received is when you make a decision work on making that decision work and do not second guess yourself. I recently updated the matrix just to keep it current. If you would like to see it please email at Dan4att@gmail.com.
Good luck on your journey and if you have any questions please reach out,
Dan
76
AN Issues / Re: Just found out I have AN. Questions
« Last post by DanFouratt on May 15, 2025, 01:08:15 pm »NYMike,
Welcome to the group. This is an amazing support group, they helped me greatly through my decision process. Each person is different in their criteria for making a decision. We have all been where you are. We all value different things more then others. Each path (watch and wait, radiation or surgery) has their own risks and rewards.
I was in watch and wait for a while. Like you a little hearing loss and unlike you tinnitus. I made my decision after it grew a little for radiation and hearing got a little worse. That was what was right for me. There are people with bigger tumors who are still in the watch and wait as that decision is best for them. In my decision journey I spoke with a lot of providers. The single best advice I received is when you make a decision do not second guess yourself.
I am not a doctor so this is just the patient talking. However to help me organized the overwhelming amount of information out there I put a matrix together. This is based on conversations many specialist and individuals. My wife told me I become obsessed with the project. I told here I was simply being complete as an engineer does. Regardless, if you want to see this email at Dan4att@gmail.com and I will send it.
Good luck on your journey,
Dan
Welcome to the group. This is an amazing support group, they helped me greatly through my decision process. Each person is different in their criteria for making a decision. We have all been where you are. We all value different things more then others. Each path (watch and wait, radiation or surgery) has their own risks and rewards.
I was in watch and wait for a while. Like you a little hearing loss and unlike you tinnitus. I made my decision after it grew a little for radiation and hearing got a little worse. That was what was right for me. There are people with bigger tumors who are still in the watch and wait as that decision is best for them. In my decision journey I spoke with a lot of providers. The single best advice I received is when you make a decision do not second guess yourself.
I am not a doctor so this is just the patient talking. However to help me organized the overwhelming amount of information out there I put a matrix together. This is based on conversations many specialist and individuals. My wife told me I become obsessed with the project. I told here I was simply being complete as an engineer does. Regardless, if you want to see this email at Dan4att@gmail.com and I will send it.
Good luck on your journey,
Dan
77
Inquiries / Mayo for Treatment/s
« Last post by Kamama62 on May 15, 2025, 09:36:53 am »Has anyone here had treatment done with Mayo?
78
AN Issues / Just found out I have AN. Questions
« Last post by NYMIKE on May 15, 2025, 08:03:38 am »About 2 years ago I noticed by accident that I couldn’t hear as well out of my left ear as my right ear. I thought nothing of it at the time and figured it may just be congestion or some weird anomaly that would correct itself. It hasn’t changed since then. It doesn’t affect my day to day so it is really impossible to notice unless I completely block my right ear. If my right ear is blocked while listening to a podcast for example - I need to turn the volume up a bit to hear with my left ear.
Finally after 2 years I went to the ENT (this April) who did an audiogram and discovered that I have what is referred to as to as cookie bite hearing loss (mid frequency), meaning I have trouble hearing the frequency of peoples voices. However, I did still have 100% word recognition in my bad ear at 65db, meaning perfect word recognition at a louder volume.. He advised an MRI as the next step which revealed acoustic neuroma in my left ear.
Aside from the partial mid frequency hearing loss in my left ear, I have no other symptoms. I’m wondering what people would recommend for someone in my situation. Considering the only symptom is hardly noticeable and doesn’t effect my day to day life, I am wondering what the best course of action would be. I have read that these tumors sometimes randomly permanently stop growing. Given that my symptoms have been the same for 2 years (possibly longer as I only noticed incidentally) I am leaning towards a wait and watch approach. I’m sure an additional MRI will follow to determine if and how much it is growing. But if it’s stable I’m leaning towards wait and watch. Thoughts?
Finally after 2 years I went to the ENT (this April) who did an audiogram and discovered that I have what is referred to as to as cookie bite hearing loss (mid frequency), meaning I have trouble hearing the frequency of peoples voices. However, I did still have 100% word recognition in my bad ear at 65db, meaning perfect word recognition at a louder volume.. He advised an MRI as the next step which revealed acoustic neuroma in my left ear.
Aside from the partial mid frequency hearing loss in my left ear, I have no other symptoms. I’m wondering what people would recommend for someone in my situation. Considering the only symptom is hardly noticeable and doesn’t effect my day to day life, I am wondering what the best course of action would be. I have read that these tumors sometimes randomly permanently stop growing. Given that my symptoms have been the same for 2 years (possibly longer as I only noticed incidentally) I am leaning towards a wait and watch approach. I’m sure an additional MRI will follow to determine if and how much it is growing. But if it’s stable I’m leaning towards wait and watch. Thoughts?
79
AN Issues / Re: My story with a neuroma before and after surgery
« Last post by WALEED KHALID on May 15, 2025, 03:32:40 am »Don't neglect it so that it doesn't grow up, but if it's less than 3 cm, you can size it with a Kama Knife device.
80
Pre-Treatment Options / Re: Newbie - contemplating treatment options - Radiation vs Microsurgery
« Last post by mwatto on May 14, 2025, 08:02:30 pm »Hi I had Cyberknife 6 years ago and live a normal life. My AN is half the size it was. But how old are you? I was in late 50s and my AN was larger than yours though my friend (not a member) AN was the same size and instead of three factions she only had one session and doing well too. She was in her 40s. I was told if radiation fails then they would redo just those cells...however I do not know which I would choose myself. I suggest watch a few videos in the webinar library and inform yourself too. I live in Perth Australia and ANs not that common it seems - we do not eg have Gamma. Feel free to message me .