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Wendy_T (@wendyt)

Acoustic Neuroma

Brain & Nervous System | Last Active: Oct 6, 2023 | Replies (10)

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Hi Wendy,
I had a .8 neuroma removed in May of 2010. I am 40 and the doctors thought removing it would be the best thing because I have too many years of life left for regrowth. They also said that they don't have research about what effect the gamma knife is going to have 20-30 years down the road, and one concern is that cancer cells may grow. So from what I understand the gamma knife is a great option for older patients. This was all at Johns Hopkins.
All that being said, I think I would recommend you try any procedure before surgery. I have had some degree of a headache every minute of every day since my surgery. It has affected every area of my life. I ended up with occipital neuralgia that triggers migraines. I have pretty much exhausted every form of treatment, and have just had to adapt my life to living in some degree of constant head and neck pain. Obviously, not every patient develops a neuroma, but I wish I had paid more attention when the doctors said that ____% of patients develop headaches after surgery. I never imagined they meant 24-7.

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Replies to "Hi Wendy, I had a .8 neuroma removed in May of 2010. I am 40 and..."

I agree completely with "headache" I had the surgery about 6 yrs ago which would have put me in the mid 40's. My problem was that I can't hear very well out of the other ear. I can hear but sometimes it sounds like the adults on a Charlie Brown cartoon :/ Anyway. I had the same choices you had. Surgery or Gamma Knife. After pointing out my "luck" with this thing my dr agreed I would be better off getting it taken out. Well he tried to "work" with what I had. What I mean is that the tried to leave a small part of the tumor on the nerve to save the hearing in that ear. Which was a very small miracle (they thought they had done it after surgery) but my hearing in that ear has never come back. 🙁 So I deal with that and its taken me a long time to get used to the change in my hearing. I don't think it would be as dramatic for you if you can still hear out of the other ear. I too had alot of headaches after the surgery. I also had what I call "headpressure" it just feels like there is a swimming cap covering your brain. The headaches are much worse than the head pressure!! But I learned to work thru the headaches ( I can't say I got used to them but I was truely relieved when they were gone) Two years later I went back (actually I go see the dr every 6 months) but 2 yrs after the surgery I went back and the tumor was growing again. This time it was growing TOWARD the facial nerve. At this point I knew I only had the Gamma Knife to choose seeing how the surgery didn't work and the tumor was growing in a dangerous direction.. I thought that the gamma knife would be a cure all but I'm finding out 4 yrs later that its not an absolute either (well for me anyways) I also chose the surgery the first time for the concern with the possible cancer affect seeing how they do not have enough information on affects of it 20 to 30 yrs down the road. But being this as my only choice I did the gamma knife surgery in 2008. It was like night and day after the surgery. I would whole heartly go for the gamma knife first. I think that everything in life is a true risk but sometimes you have to have more faith in miracles to overcome the consequences that may or may not happen. Life is not a guarentee you just have to move thru it. After the Gamma Knife I did NOT have the headaches and my life has been so much better that I can't beleive I didn't do it first!! Now I need to make the first decision over again. Do I want to get rid of the tumor completely and be done with it or do I want to go with the Gamma Knife again. Or the underlying question is do I want to go thru the headpressure again with the daily headaches or do I want to run the risk of it keep growing and possible a larger not a very big chance but a chance less than 1%) of brain cancer later on. For YOU I would recommend the Gamma Knife. I think it is a better choice for recovery (a couple of days) and the risk of cancer is NOT that great (less than 1%) I consider myself the guinea pig of medicine. I've had alot of "experiments" done with new technology and new devices so I'm not afraid of taking a risk now and then. You don't know what's next in life you just have to take the risk. If you should end up with a cancerous tumor later on they may have a cure for it or be able to stop it with a new procedure down the road. I would not worry about the risk of cancer because its a small rsk at this point for you and the Gamma Knife is a much better outcome ! They can possibly save your hearing if they do it just right (not a guarentee but its another might)