Anyone else diagnosed with acoustic neuroma, a benign brain tumor?

Posted by Tracy Lynne Daley @tracylynnedaley72, Jul 23, 2015

My name is Tracy Daley. I live in Omaha, Nebraska. My diagnosis is a jumbled mess that I am sorting out right now. Can anyone tell me if anyone in this support group has been diagnosed and/or treated for acoustic neuroma, a benign tumor affecting the acoustic nerve, which is the eighth cranial nerve in your brain? This nerve is connected to your ear. These tumors initially affect a person's balance and hearing and then other symptoms may appear. This is a very rare tumor and one out of 100,000 people and 8-9% of the intracranial tumors. If no one has heard of this tumor, I understand.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

@morock77

Hi my name is Rocky I have two brain tumors now and I had one taken out in 2010 I have been feeling the urge to give up and let the tumors take me cause it feels like know one cares anymore it's very hard for my family to see me this way and I feel that I'm just a nusense to everyone I feel alone In this battle my wife is a trooper but I don't want to burden her any longer

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Hi @morock77 Rocky,
It must be terrible to feel this way. Have you spoken to your wife about how you feel? It might help to have a frank and open conversation about your feeling like a nuisance and a burden on her. You might be surprised to hear that she doesn’t feel the same way. She probably has fears of her own. Perhaps if you start the conversation, she will be able to talk about the things that weigh heavily on her heart too. Dealing with recurring brain tumors is tough, for both of you.

Do you think you could start that conversation with her?

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Tracy. Are you still part of this group? I am recently diagnosed with an acoustic neuroma. I have been referred to an Omaha doctor and am hoping you can help me. My tumor is large and from the research that I am reading surgery may be my best option, My concern is finding a the best neurosurgeon that is experienced with acoustic neuromas that I can have confidence in as I tread through these difficult decisions.

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@jillshaw12

Tracy. Are you still part of this group? I am recently diagnosed with an acoustic neuroma. I have been referred to an Omaha doctor and am hoping you can help me. My tumor is large and from the research that I am reading surgery may be my best option, My concern is finding a the best neurosurgeon that is experienced with acoustic neuromas that I can have confidence in as I tread through these difficult decisions.

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Welcome to Connect, @jillshaw12.
I'm tagging @tracylynnedaley72 on this message in the hopes that she'll a new member from Omaha has joined the acoustic neuroma group. I see @donna3 also mentioned that she was seeing a specialist in Omaha.

I second your opinion that finding an experienced neurosurgeon is important. I'm not sure if Mayo Clinic is an option for you. At Mayo Clinic, we offer appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. Here is the online form and contact numbers for our 3 campuses in AZ, FL and MN http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

I'd also like to tag other Connect members who have had surgery for an acoustic neuroma to share their experiences with you. Please meet @cynaburst @jjennings @sepdvm @ccubed @estherhg and @dnonnie to name a few. You'll read about their stories in this discussion.
Jill, what questions do you have for the group?

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@jillshaw12

Tracy. Are you still part of this group? I am recently diagnosed with an acoustic neuroma. I have been referred to an Omaha doctor and am hoping you can help me. My tumor is large and from the research that I am reading surgery may be my best option, My concern is finding a the best neurosurgeon that is experienced with acoustic neuromas that I can have confidence in as I tread through these difficult decisions.

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Ask away !???

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@jillshaw12

Tracy. Are you still part of this group? I am recently diagnosed with an acoustic neuroma. I have been referred to an Omaha doctor and am hoping you can help me. My tumor is large and from the research that I am reading surgery may be my best option, My concern is finding a the best neurosurgeon that is experienced with acoustic neuromas that I can have confidence in as I tread through these difficult decisions.

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JILL
My tumor was 2.5cm I had surgery 6 months ago , I feel great w some limitations I had surgery at Jefferson. Neuro hospital in Phila Pa

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@jillshaw12

Tracy. Are you still part of this group? I am recently diagnosed with an acoustic neuroma. I have been referred to an Omaha doctor and am hoping you can help me. My tumor is large and from the research that I am reading surgery may be my best option, My concern is finding a the best neurosurgeon that is experienced with acoustic neuromas that I can have confidence in as I tread through these difficult decisions.

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Thank you for the Mayo Clinic resources. I am meeting with my primary doctor on Friday to ask her questions about my MRI and what to expect. I want to learn more about Dr. Moore and his experience treating ANs. I am praying that when I meet with him next week I get a good vibe and that he is capable and greatly skilled. If I do not feel comfortable my next steps will be to contact the Mayo Clinic using the information you have provided.
Having a response from you touches my heart and makes me feel like I am not alone. Crazy how just having you reach out to me and to know there are resources and great people who do not even know me willing and able to answer my questions is so comforting.
I am still in the not even sure what to ask stage. I am sure I will have many questions as I progress through this journey (that I do not really want to take).
One of my biggest concerns right now is that I am a teacher and a planner. I feel I need to have a plan in place asap so that I can get a sub to cover for me. How long recovery will take is a huge concern. How much to share with my 5th grade students, parents, colleagues, administrators are all running through my mind.
i do not want to become the teacher with the brain tumor! I do not want parents to worry that their 5th grader is worried about their teacher. I know my teaching team love me and will be supportive but I am not sure if the administrators will think that I am in any way unable to be an effective teacher due to having a brain tumor. I pray that my effectiveness and my passion to teach are not lost through this ordeal. I am a very positive person but this diagnosis is really tearing me down. Any advice from AN post surgery teachers would be much appreciated.

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Dear Tracy, my brother-in-law had the same thing - he went to a doctor at Johns Hopkins in NY. He had radiation but no surgery. Not sure if this helps, but in my opinion, it never hurts to share anything. I wish you the best.

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@hopeful33250

Hello @dgosney23

I would like to add my welcome to you as well!

You mention having had a procedure. If you are comfortable sharing more about this, please let us know: What type of procedure did you have and how long ago was it? Did your doctors give you any timeline when they expect you to experience relief from the pain?

I hope that you begin to feel better. I look forward to hearing from you again and hear how you are doing.

Teresa

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I'v just got out of my 2nd round at hospital . For any of you going through this it is rough.I got meningitis and a brain leak lost a lil more facial muscle but I'm still kicking.All I can say is wow to all that have been thru this I am a strong person but wow when does it stop.lol

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@jillshaw12

Tracy. Are you still part of this group? I am recently diagnosed with an acoustic neuroma. I have been referred to an Omaha doctor and am hoping you can help me. My tumor is large and from the research that I am reading surgery may be my best option, My concern is finding a the best neurosurgeon that is experienced with acoustic neuromas that I can have confidence in as I tread through these difficult decisions.

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How soon were you able to return to work and more of your routine? How did you pick your surgeons?
Which type of surgery?
I see the neurosurgeon that my ENT suggested tomorrow. I am hoping it goes well

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Jill, Had my surgery in December of 1992. I teach at Carnegie Mellon U and went back for the start of the semester mid January,
My Dr. at Mayo was Dr. Harner. He wrote the book on this surgery. My Dr in charge of my case was Dr. Utz and he told me who to go to.
I was a "leaker" So had a 2nd surgery 5 days later! I'm still teaching an doing my consulting! Go back to Mayo for a check up yearly.
All is Good! Good luck and let me know if I can answer any questions!
Hoosier1

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