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

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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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 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 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 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 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 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 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 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.

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My 2nd MRI is scheduled Aug 8 and I see a neurosurgeon Aug 31. I googled his profile and saw he has been practicing 14 years. Don't know how many Acoustic Neuroma patients he has treated. That will be one of my questions. My biggest concerns with surgery is with anestesia. I am so allergic to so many drugs and in 2012 I almost died from MRSA that I contracted in an ER. The road back was so hard. I was in a rehab for a month and 6 months in a wheelchair. I have never fully regained my strength in my legs. Current symptoms are tolerable. I lost most of my hearing in my right ear 2 years ago and get by OK with hearing aids. I still use a cane so it helps with balance. Headaches and nausea are treatable. I am 68 years old and want to enjoy a few more decent years with my hubby and do some fun things. I don't want that taken away by treatment complications. I will listen to treatment options but will be very cautious. I know my body and what it can tolerate pretty well. Thank you all for your responses. Will continue seek for the best options for my possible recovery from this illness.

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