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Anyone else diagnosed with acoustic neuroma, a benign brain tumor?
Brain Tumor | Last Active: 21 hours ago | Replies (515)Comment receiving replies
Hi Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very scary indeed. I went in to my doctor with an earache. They gave me 2 weeks of antibiotics . After that 2 weeks the side of my head still hurt and I was loosing balance. I went back and was sent to a ENT who did an ear biopsy, nasal passage biopsy and an MRI in a 3 week period.
The biopsy showed nothing as well as the nasal scan. But the MRI came back showing a 3.4 centimeter tumor in my ear canal and growing and pushing my brain stem in too the point that they saw Hydrocephalus(water on my brain). I had no headaches after the earache no pain or dizziness , nor imbalance. There were no symptoms at all.
Three weeks later I met with my surgeons and neurosurgeons and they explained the surgery to me and my children. It was a scary time, BUT I have a daughter who is an RN and any questions I didn't know to answer she did, and by the time my surgery was scheduled, we had all our answers and were as prepared as we could be.
I was diagnosed February 9, 2014, and my surgery was scheduled for March 10, 2014. I am allergic to a lot of the Anastasia drugs they give people when in surgery, so I had to make many scheduled appointments to the neurosurgeons for testing. My surgery was 12 hours. In this 12 hour period I had 4 surgeons and neurosurgeons flip flopping thru my surgery. When one completed their part they came out and updated my daughter so she could update my family as too progress. It took the full 12 hours.
the amazing part is with this surgery it was non cancerous and they scraped on my nerves for 12 hours and needed to leave 2% of the tumor on my brain stem or it would have severed nerves for my face and eye. I am 2 years since this surgery and I still need to see neurosurgeons for MRI and testing. I have imbalance due to the hearing loss in my left ear where the surgery was performed. Things that never bothered me before do now, my balance is still off and will always be off. I just need to adjust my employment and life to the after effects of having needed brain surgery.
Every day is a challenge, but I by the Grace of the Good Lord am alive.
Replies to "Hi Tracy: My name is Rose. I was diagnosed with a acoustic neuroma in 2014. Very..."
Hello Katfred:
I had No signs at all of having a brain tumor. No hearing loss, No headaches, no imbalance issues. So when I went in and my ent found a tumor. Well shock was not the word I felt. Unbelievable was more like it... Im getting better as far as walking straight and doing more. Ive just slowed down a bit.Im still active, but Ive changed how I do things now...
I am dnonnie , I had surgery 8 weeks ago and was wondering when you returned to work? my tumor was 2.2 cm and prior to surgery I had lost a lot of my hearing and my balance was deteriorating quickly. I am happy to say I am walking independently but still feel like a walk at times alike a toddler . did you go to vestibular therapy? I do yoga and walk a lot.
Hi dnonnie, Sounds like you are doing well! I was able to go back to teaching and driving in about 6 weeks. They didn't have therapy back in 1992. I did a lot of balancing exercises on my own. I still have to be careful, once I start to fall I am unable to react and catch myself! Think it is going to be that way for the rest of my life! I just have to be careful of the situations I put myself in. No ladders, etc!
Keep up the yoga and walking you will get your confidence back! Good luck! Hoosier 2
@katfred have you returned to work ? Are you over 50 yrs old ?? I’m curious because I’m still unbalanced but I’m 24 weeks postvsurgery
@roseareredmylove2016
Hi Rose you are a very blessed person. So they did surgery and then the radiation on you. Didn’t you ever get physical therapy for your vestibular system? Thats what I’m going through now to bring it back to normal. It can be retaught. Ask for orders from your family doctor or ENT. This could change your life!
So very happy for your recovery! My daughter, 39 year old mother of two babies, has a 4cm benign Schwannoma on her brainstem. This was accidentally found on an MRI she had 1/23/19 when she suffered a major brain hemorrhage. She had the Craniotomy, Cranioplasty and is in a semi-conscious state in a nursing home. The neurosurgeon said the surgery to remove the Schwannoma is very risky because it is pushing on the brainstem and her neurological state.
Can you discuss your surgery a little more and do you know of any other options other than surgery?
Thank You!
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Hi rose. I had surgery nov 23rd and i found mine by having vertigo and hearing loss. Im still battling balance and nauseu.. i life has changed, i was very active and now i cant walk a straight line. Its crazy how things can change so quickly