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.

moms | @moms | Apr 19, 2018

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes .... including death. I'm looking for personal information and advice. Thanks for any help.

REPLY
7 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 19, 2018
In reply to @moms "My dr just told me I may have an acoustic neuroma. I will have to have..." + (show)
@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes .... including death. I'm looking for personal information and advice. Thanks for any help.

Jump to this post

Hi @moms
I moved your message to this discussion about acoustic neuromas where other Connect members are talking about their experiences. Simply click VIEW & REPLY to go directly to the end of the discussion. I encourage to read the pasts post where you can meet others like
@sepdvm @cynaburst @saucy @lindalb @hoosier2 and read their stories of successful surgical outcomes.

It can be frightening to get this diagnosis. Come talk with others who have been there. I'm sure you have lots of questions. Please ask anything. You're not alone.

You may also be interested in listening to this Mayo Clinic expert Q&A with Dr. Weisskopf https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/

REPLY
moms | @moms | Apr 19, 2018
In reply to @dnonnie "I also had surgery for the removal of an acoustic neuroma. 8 week ago ." + (show)
@dnonnie

I also had surgery for the removal of an acoustic neuroma. 8 week ago .

Jump to this post

How are you doing?

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Cynaburst, Alumna Mentor | @cynaburst | Apr 19, 2018
In reply to @moms "My dr just told me I may have an acoustic neuroma. I will have to have..." + (show)
@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes .... including death. I'm looking for personal information and advice. Thanks for any help.

Jump to this post

Hi @moms - I have a very large acoustic neuroma removed 16 years ago, and I am very much still alive. The treatment (if you have an AN at all) will largely depend on the size of the tumor and your age, and some other factors. A great resource to start with is the Acoustic Neuroma Association - http://www.anausa.org. They also have a message board which may be helpful to you, as well as a bunch of information about the different procedures, etc. Though it is a scary thing now, in years to come you will look back at this as a scary experience that you survived. I can virtually guarantee.

REPLY
Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 19, 2018
In reply to @moms "My dr just told me I may have an acoustic neuroma. I will have to have..." + (show)
@moms

My dr just told me I may have an acoustic neuroma. I will have to have MRI. I've read some devastating stories online about surgical outcomes .... including death. I'm looking for personal information and advice. Thanks for any help.

Jump to this post

I have a small AN that we have been following for 6 years now. It is a slow growing one and so far some hearing loss and constant tinnitus are the only symptoms. From my reading, the slow growing type is the most common and often monitoring is all that is needed. My balance is off from my cancer surgery on the opposite ear, so I really don't know if the AN is causing vestibular symptoms or not. My Mayo ear surgeon says that radiation will be the best choice if this AN increases to the point where it needs to have something done. I hope yours turns out to be small and slow growing.

REPLY
odnut | @odnut | Apr 23, 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 was disgnosed wurh a 1.2cm acoustic neuroma last month.as i search google and read the posts i makw myself literally ill. Why did you opt ror radiation versus surgery?

REPLY
odnut | @odnut | Apr 23, 2018
In reply to @kkkk "About a year ago I was diagnosed with a small acoustic neuroma. (I am now 69...." + (show)
@kkkk

About a year ago I was diagnosed with a small acoustic neuroma. (I am now 69. My doctor said the median age is 71, and they do not like to operate on older people.) My doctor suggested it best to wait and watch it since I do not notice symptoms yet, except for some gradual hearing loss in my right ear and ringing in my ears. Living one day at a time and trying to enjoy each day has been my goal. When necessary, the doctor suggested radiation therapy, which can cause it to become cancer in 2 % of cases. I am not at all enthused about any kind of surgery, especially on my head. I am really hoping for a new kind of treatment, such as immuno-type therapy where you take a pill, and it goes to the tumor and shrinks it or makes it disappear. Some doctors are now using it for cancer tumor treatment with some amazing results.

I just wanted people with acoustic neuroma to know you are not alone, and I know it is like sitting on a time bomb and is quite nerve racking. I try to keep busy and not dwell on it. We can try to find some talented doctors, pray for a cure, and hope for the best. Good luck to you all!

I also have two small thyroid nodules that the doctor is watching; the larger one checked was benign. Thank God! Last month I had an attack of acute pancreatitis and was in the hospital four days, three on an IV. They could not find out exactly what caused the problem but thought a gall stone traveled through my pancreas. Now I have tendonitis in my right foot from going up and down 14 steps too much. (My daughter recently had a breech C-Section and could not climb up and down her stairs for several weeks.) For over the past year, it seems I just get one problem paid for and get another. Hopefully, it will not get any worse this year. I am still feeling pretty good, though - even with all of my medical problems.

Jump to this post

I am going to u of m in may. Can you give some insight on the drs?

REPLY
dnonnie | @dnonnie | Apr 23, 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 was not impressed with the length of time it takes to get rid of a neuroma with radiation also the side effects of tissue damage around the tumor and an increase in cancer risk post radiation . also to remove the Tumor I if the radiation does not work, makes the tumor more sticky and not as easily to operate if surgery is needed. The surgery was a huge success !

REPLY
moms | @moms | Apr 23, 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'm scheduled for an MRI for confirm AN. I'm terrified. I don't scare easily, I've had many serious surgeries in my life, but this is very scary. I think I'm most concerned about the possibility of facial paralysis. I really hope my MRI is negative.

REPLY
dnonnie | @dnonnie | Apr 23, 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 hope it is too ! But if not this surgery has a lot of success . Please reach out again after you get your MRI results. With the great neuro surgeons out there you will have success !!

REPLY
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