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 group.

@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

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Hi: How do you deal with imbalance issues from the hearing loss?? Some days I’m better off just staying inside….I was told after my surgery the only hearing device that would help me was the “Cochlear”. But even than I must wait until my nerves re-generate where the left side surgery was done…What is the name of that hearing aid???I could maybe benefit for balance issues…

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@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

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Hi cynaburst: My hydropcephalus was caused by the nueroma pushing my brain stem in. I didnt know about either until I had the MRI…Than it was a scheduled rush for surgery because the Nueroma was closing off my spinal fluid drainage…

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@katfred

Thank you..i am one of the few that has vertigo all the time. My balance is so bad that im using a cane so i dont fall or walk into walls. Unfortunately my surgery got moved to November 23rd..so in the mean time im off work and just trying to get thru feeling sick alot

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The hearing aid is made by Phonak. It doesn’t really restore perfect hearing, but since it enhances the sound that enters the right ear, it is much improved.

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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.

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@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.

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The AN I have was discovered when I had an MRI to diagnose hydrocephalus.  It destroyed the hearing in my right ear, but did not cause any other problem.  Had another MRI last week.  The doctor wants to “watch” the AN–says it it a tiny bit larger.  Thanks for sharing the Gamma knife success.

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When I found that I had an AN, my primary doctor insisted that I go to Yale and have something done immediately. When I told him I found and alternative, he was not too happy I guess because this GK was so new and didn’t have a history yet. He was upset with my choice to do it but after it was done and he saw how good it went and kept getting the yearly MRI reports of its shrinking, he told me he was wrong and would recommend GK to anyone who had an AN. I think because of him, I thought I had to act quickly. In hindsight I now know that these are slow growing and you don’t need to act quickly. You and your doctor are doing the right thing. This way you can do your homework.

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@amkaloha

When I found that I had an AN, my primary doctor insisted that I go to Yale and have something done immediately. When I told him I found and alternative, he was not too happy I guess because this GK was so new and didn’t have a history yet. He was upset with my choice to do it but after it was done and he saw how good it went and kept getting the yearly MRI reports of its shrinking, he told me he was wrong and would recommend GK to anyone who had an AN. I think because of him, I thought I had to act quickly. In hindsight I now know that these are slow growing and you don’t need to act quickly. You and your doctor are doing the right thing. This way you can do your homework.

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I had an acoustic neuroma removed surgically 2 years ago, now I have imbalance issues, ears plug up a lot. I lost hearing in left ear due to the tumor. Just had an annual MRI in august , my ENT says a part of it has grown a hair. What is GK?

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@amkaloha

When I found that I had an AN, my primary doctor insisted that I go to Yale and have something done immediately. When I told him I found and alternative, he was not too happy I guess because this GK was so new and didn’t have a history yet. He was upset with my choice to do it but after it was done and he saw how good it went and kept getting the yearly MRI reports of its shrinking, he told me he was wrong and would recommend GK to anyone who had an AN. I think because of him, I thought I had to act quickly. In hindsight I now know that these are slow growing and you don’t need to act quickly. You and your doctor are doing the right thing. This way you can do your homework.

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Hi Roses. GK is for Gamma Knife and it is a radiation therapy. They call it gamma knife surgery but there is no knife and no surgery! The ‘knife’ is the gamma ray that is sent only to the tumor in a precise manner. Lots of hospitals have these macjines now but I got mine in Rhode Island. You can google it and I’m sure find a lot about it. Mine was done almost 20 years ago and my last MRI showed it is still shrinking. From what you say, I guess they did not get the entire tumor out with the surgery. I think if I were in your shoes I’d still play the waiting game. These are typically slow growing, so you do have time unless you have other symptoms which the tumor is causing. I have balance issues too as your ears control balance, so that’s just a given. I also lost hearing in my left ear and sometimes it rings. I know they do GK even if you have had a surgery before. Wishing you good luck. Andrea K

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@colleenyoung

Thank you for sharing your experience with the group here on Connect, @rosesareredmylove2016. That is quite the journey and I’m glad you’re here to tell us about it!

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Hey Colleen: I had my yearly MRI in August 2016, my Ent compared the one from 2014 just after my surgery only because she could not read the one I’d had in North Carolina . And she found part if the 2 percent my neurosurgeon left on my brain stem has grown. If it gets bigger, she tells me I will get spot radiation to shrink it. Any patients on the site that have had radiation to shrink theirs. Thank you

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@amkaloha

When I found that I had an AN, my primary doctor insisted that I go to Yale and have something done immediately. When I told him I found and alternative, he was not too happy I guess because this GK was so new and didn’t have a history yet. He was upset with my choice to do it but after it was done and he saw how good it went and kept getting the yearly MRI reports of its shrinking, he told me he was wrong and would recommend GK to anyone who had an AN. I think because of him, I thought I had to act quickly. In hindsight I now know that these are slow growing and you don’t need to act quickly. You and your doctor are doing the right thing. This way you can do your homework.

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Hi: Yes they left 2 percent on my brain. Stem due to the fact the majority of what’s left rests on my facial nerves . I was told if the tumor grows I will need spot radiation to reduce it, it is growing, slowly and my nuerosurgeon is watching it. What’s the radiation like? Has it effected your body???

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Tomorrow i have appointments all day with E.N.T videonystagmogram , i guess its a mandatory testing before i have surgery the 23rd. If my imbalance is from my tumor, why is this testing needed? Thabk you

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@amkaloha

When I found that I had an AN, my primary doctor insisted that I go to Yale and have something done immediately. When I told him I found and alternative, he was not too happy I guess because this GK was so new and didn’t have a history yet. He was upset with my choice to do it but after it was done and he saw how good it went and kept getting the yearly MRI reports of its shrinking, he told me he was wrong and would recommend GK to anyone who had an AN. I think because of him, I thought I had to act quickly. In hindsight I now know that these are slow growing and you don’t need to act quickly. You and your doctor are doing the right thing. This way you can do your homework.

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I suppose they left the 2% so that they didn’t mess with your facial nerves which could be a real problem. Good for them! Your doctor might be talking about gamma knife, but they have many other forms of this now which they use for all kinds of tumors. Because the process directs many rays directly to your tumor, it has no effect on any other part of your brain. There is no pain involved and it does not effect your body in any way — just the tumor! I would certainly recommend it to anyone.

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