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Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
Brain Tumor | Last Active: 11 hours ago | Replies (524)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..."
MRI went well. No reaction to contrast except increased dizziness for awhile. ☺
That’s fantastic, @rose4622 I’m relieved to hear you didn’t have a reaction to the contrast apart from increased dizziness, but probably not nearly as relieved as you were.
When do you find out about treatment options?
I read my report and was devastated to find my tumor is much bigger than first MRI without contrast showed. Don't know if I can get radiation. Going to contact Mayo tomorrow.
Oh Rose, that must be a such a hard blow. Did you call Mayo Clinic already? If you haven’t already, I’d like you to know that we offer appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. Here is the online form and contact numbers for our 3 campuses http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.
Keep us posted. You’re not alone.
I have an appt with a neurosurgeon here in Albuquerque today at 2:30. I was scheduled for the 31st. When my primary got the results of the 2nd MRI she worked very hard to get the appt moved up to today. I'm going to see him to see what he has to say. On Thursday I am scheduled to be at Mayo in Phoenix for a second opinion. I am so scared. Knowing the tumor is 3.3 cm and is pressing on the brain stem they are sure to recommend surgery. I'm 68 years old and have struggled with MCS for 18 years. (Multiple Chemical Sensitivities). There are so many drugs, cleaning supplies and even foods that my body reacts so badly to. I don't know if I can endure a 12 hour exposure to anesthesia. I cannot take most pain meds. Morophine is the only one I don't have severe reactions to except nausesa. The drive to Phoenix also is a challenge. Riding in the car makes me feel so dizzy when I get out. Yesterday my hubby took me to the store. When I got out to walk forward, instead I went backward. I'm so glad my hubby was able to grab me and pull me forward. I thank God for such a loving and patient husband whom I will be married to for 43 years in October. I also have 4 beautiful children and 10 grandchildren who would be deeply hurt if I don't make it through this.
@rose4622 I can understand your concern about surgery, given your past medical history. However, it sounds like you do need treatment given the problems you have experienced with balance and walking.
Please remember that there are treatments that can be used, other than surgery and so there might be other options for you. Try to go into your appointment with an open mind, looking for answers, without assuming the worst. I understand that is easier said than done, but do try it.
I look forward to hearing about your appointment. Will you post again?
Teresa
Yes. Mayo just called and moved my appt up to Weds so I can see an ENT. Then Thurs I see oncologist and neurosurgeon. I don't like going thru all this but I do want to live. My trust in Doctors has been damaged but my faith in God is strong. I'm going to be OK whatever happens.
@rose4622 I do wish you well and I do believe, like you do, that you will be OK.
Keep in touch, I'll be praying for you!
Teresa
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@rose4622
I'll be thinking about you as well! I hope that the MRI goes on and in an uneventful manner.
Wishing you well. Teresa