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Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
Brain Tumor | Last Active: 20 hours ago | Replies (528)Comment receiving replies
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.
Replies to "I saw this 'Accoustic Neuroma' subject and had to stop in. I had an AN in..."
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?
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 !
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.
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 !!
Thank you for sharing your experience with gamma knife. I think I would prefer it to surgery. Did you have any drugs to help calm you for this? Anxiety is a big problem for me.
Hi @rose4622 have you told your medical team about your anxiety? It is not uncommon to experience anxiety when facing procedures. They should be able to help you manage it. Do you experience anxiety before an MRI appointment too?
I have my 2nd MRI tomorrow morning. My daughter in law who is a registered nurse is taking me. I am terrified of the contrast drugs they will give me because I had convulsions the last time. That die had iodine in it and they think I reacted to that. The dye they use tomorrow does not have iodine in it. My daughter in law says she will intervene and have them ready with something to help me should I seize or have severe stomach pain as I do with lots of drugs.I have some Valium to take to help me stay calmer as well as an essential oil called stress relief. I have been doing a lot of research and found some
Alternatives to surgery I hope will work for me. I don't think I could survive a 12 hour surgery due to my reactions to anesthetics in the past. I have a condition called MCS for the past 18 years (multiple chemical sensitivities). I have been working with an alternative Dr who does Korean acupuncture and it has helped a lot for that and I can go more places without a mask. Putting poison inside my body is another thing. I can eat more foods than I used to but still react big time to drugs.
I told my primary doctor who referred me to neuro to inform MRI tech of my drug sensitivities and she said she would. I'm hoping all this prednisone that has been upsetting my gut a lot will have cleared my brain enough for a clearer picture of my 2 centimeter acoustic neuroma and hoping it hasn't grown.
Hi @rose4622,
Wishing you all the best for your MRI; let us know of any updates or findings – only if you wish to, of course. Good luck.
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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.