1. < Brain Tumor

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.

rose4622 | @rose4622 | Aug 8, 2018
In reply to @amkaloha "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..." + (show)
@amkaloha

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

Jump to this post

I read my report and was devastated to find my tumor is much bigger than first MRI without contrast showed. Don't know if I can get radiation. Going to contact Mayo tomorrow.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 9, 2018
In reply to @amkaloha "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..." + (show)
@amkaloha

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

Jump to this post

Oh Rose, that must be a such a hard blow. Did you call Mayo Clinic already? If you haven’t already, I’d like you to know that 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 http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

Keep us posted. You’re not alone.

REPLY
rose4622 | @rose4622 | Aug 13, 2018
In reply to @amkaloha "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..." + (show)
@amkaloha

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

Jump to this post

I have an appt with a neurosurgeon here in Albuquerque today at 2:30. I was scheduled for the 31st. When my primary got the results of the 2nd MRI she worked very hard to get the appt moved up to today. I'm going to see him to see what he has to say. On Thursday I am scheduled to be at Mayo in Phoenix for a second opinion. I am so scared. Knowing the tumor is 3.3 cm and is pressing on the brain stem they are sure to recommend surgery. I'm 68 years old and have struggled with MCS for 18 years. (Multiple Chemical Sensitivities). There are so many drugs, cleaning supplies and even foods that my body reacts so badly to. I don't know if I can endure a 12 hour exposure to anesthesia. I cannot take most pain meds. Morophine is the only one I don't have severe reactions to except nausesa. The drive to Phoenix also is a challenge. Riding in the car makes me feel so dizzy when I get out. Yesterday my hubby took me to the store. When I got out to walk forward, instead I went backward. I'm so glad my hubby was able to grab me and pull me forward. I thank God for such a loving and patient husband whom I will be married to for 43 years in October. I also have 4 beautiful children and 10 grandchildren who would be deeply hurt if I don't make it through this.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 13, 2018
In reply to @amkaloha "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..." + (show)
@amkaloha

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

Jump to this post

@rose4622 I can understand your concern about surgery, given your past medical history. However, it sounds like you do need treatment given the problems you have experienced with balance and walking.

Please remember that there are treatments that can be used, other than surgery and so there might be other options for you. Try to go into your appointment with an open mind, looking for answers, without assuming the worst. I understand that is easier said than done, but do try it.

I look forward to hearing about your appointment. Will you post again?

Teresa

REPLY
rose4622 | @rose4622 | Aug 13, 2018
In reply to @amkaloha "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..." + (show)
@amkaloha

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

Jump to this post

Yes. Mayo just called and moved my appt up to Weds so I can see an ENT. Then Thurs I see oncologist and neurosurgeon. I don't like going thru all this but I do want to live. My trust in Doctors has been damaged but my faith in God is strong. I'm going to be OK whatever happens.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 13, 2018
In reply to @amkaloha "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..." + (show)
@amkaloha

I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in 1997, yes, almost 20 years ago! The way I discovered it was that I had ringing and 'off and on' hearing in my left ear. They scheduled a hearing test, then a brain stem test. After that, I had an MRI and there it was! I can't remember how large it was but my doctor said it was the size of a golf ball. He sent me to Yale NH hospital for a consult. They explained the operation to me and I decided to look for alternatives. I found they were doing Gamma Knife Surgery at Brown University Hospital in Rhode Island for all kinds of brain tumors and decided to consult with them. I liked what they were doing and so I had my GKS in May 1997. At that time there were not many hospitals doing this kind of treatment. Gamma Knife is not a surgery in the way we think of surgery. It is a radiation treatment in which they place a helmet on your head to pinpoint the place of the tumor which they will radiate. They come up with a plan based on the size and place of your AN. The treatment consists in going into the 'chamber' which is much like a hair dryer. They connect you to it using the helmet and perform the radiation through holes so that they reach only the tumor and not other parts of your brain. You come out of the chamber and they rearrange the points then you return and they direct the radiation again. I must have gotten about 24 rounds of this and it took hours. However, it was not painful at all, just tiring. When it was over, they took the helmet off my head and I headed to the room that my husband and I were staying in which was connected to the hospital and had nursing staff you could call if needed. The next day they checked me over and we went home. On the way home we stopped for lunch. There was no pain and at that time I could hear out of the left ear. The only lasting problem was that I did lose the hearing completely in that ear. But you adjust and now I don't even notice it that much. For the first 10 years I had an MRI every year to see how it was doing and it shrunk each year.

Just wanted to tell my story in case it would help others faced with an accoustic neuroma. Feel free to rely to this post and if I can help you I will.

Jump to this post

@rose4622 I do wish you well and I do believe, like you do, that you will be OK.

Keep in touch, I'll be praying for you!

Teresa

REPLY
vickid117 | @vickid117 | Aug 23, 2018

Hi. I just had acoustic neuroma surgery on June 8th,2018. I have went for vestibular therapy. I am having balance issues. As well as balance issues, I lost total hearing in my right ear after surgery. I was diagnosed 2 years ago. They were going to wait and watch it's growth. My husband's health had declined and I put myself aside to take care of him. He passed last August. I was supposed to go for an MRI last year and didn't. After the funeral I went and had an MRI because dizzy and ringing of the ears was really getting bad. At that point the tumor had grown and started to cause more symptoms. Radiation would not help with my balance issues. The doctor felt the surgery would be the best way to go.It is an ongoing struggle, but I'm not a quitter. Just ordered hearing aides yesterday. Been out of work for almost 3 months. Just started driving small distances a week ago. Every experience is different. Would love to hear from anyone who is currently experiencing after surgery life. Best Wishes to you who are just starting this journey.Just remember we can beat this tumor.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 23, 2018

Hello @vickid117 and welcome to Mayo Connect!

First, let me express my sympathies to you on the loss of your husband. As if often the case, caregivers tend to put aside their own health needs when caring for a loved one.

I appreciate your sharing your story of surgery for the acoustic neuroma. Could you tell us what type of surgery you had (gamma knife, etc.)?

I would like to invite some other Members to post with you. They have recently had a similar surgery, @dnonnie, @kkkk, and @wegotthis.

REPLY
3 replies
vickid117 | @vickid117 | Aug 23, 2018
In reply to @hopeful33250 "Hello @vickid117 and welcome to Mayo Connect! First, let me express my sympathies to you on..." + (show)
@hopeful33250

Hello @vickid117 and welcome to Mayo Connect!

First, let me express my sympathies to you on the loss of your husband. As if often the case, caregivers tend to put aside their own health needs when caring for a loved one.

I appreciate your sharing your story of surgery for the acoustic neuroma. Could you tell us what type of surgery you had (gamma knife, etc.)?

I would like to invite some other Members to post with you. They have recently had a similar surgery, @dnonnie, @kkkk, and @wegotthis.

Jump to this post

I had a Crainiotomy for tumor. My Vestibular nerve was cut. The acoustic neuroma was near my ear canal. The cranial nerve around brain was cut. This nerve affects hearing and balance.I was told I would more than likely lose my hearing in that ear. I did lose it. Just went yesterday to find out about hearing aides. I hope I will meet someone who has had more recovery time than me.I've got almost 3 months down. Would love to hear that it really gets better, by an actual person who has experienced it. Thank you for your kind words. It has been a rough year both physically and emotionally.

REPLY
rose4622 | @rose4622 | Aug 24, 2018
In reply to @hopeful33250 "Hello @vickid117 and welcome to Mayo Connect! First, let me express my sympathies to you on..." + (show)
@hopeful33250

Hello @vickid117 and welcome to Mayo Connect!

First, let me express my sympathies to you on the loss of your husband. As if often the case, caregivers tend to put aside their own health needs when caring for a loved one.

I appreciate your sharing your story of surgery for the acoustic neuroma. Could you tell us what type of surgery you had (gamma knife, etc.)?

I would like to invite some other Members to post with you. They have recently had a similar surgery, @dnonnie, @kkkk, and @wegotthis.

Jump to this post

I will be having surgery for acoustic neuroma next month. I am terrified.I already have hearing aids because I went deaf in my right ear 2 years ago. I had no idea that a tumor was the cause. I thought it was my age. I was 66 when I lost it.that was around the age my dad lost his.my tumor is large and is pressing on the brain stem. That pressure is causing pain and balance issues. I have no other options but surgery. I am hoping it goes well and I can drive again. I feel so isolated. My hubby is so good to me but I know it is hard for him too. Please share more about your surgery and recovery. It would help a lot.

REPLY
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