Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
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.
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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.
@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
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?
Results of today's MRI posted on my chart. The tumor is much larger than what showed up on first MRI. 3.3×2.7×2.8 cm. This terrifies me. I am sending info to Mayo Clinic in Phoenix tomorrow. I live in NM so can go to AS for treatment if so choose.
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.