Treatment Options > Microsurgical Options
New here and scared
solotraveler:
Hi, my surgeon told me about this forum when I told him I am feeling scared and alone.
I found out I have an AC on June 30th, 2cm. I am 50 years old. The symptom that led me to getting an MRI was bad dizziness that came on suddenly and severely in May and has impacted my quality of life (I can’t often drive but I sometimes have good days). I had short bouts of dizzy spells for the last 6 years and tinnitus in my ear for 4 years but whenever I went to my PCP, I was told it’s just allergies, sinus infection, just tinnitus. I haven’t had much issue with balance unless my dizziness is bad. Other than the tinnitus and dizziness my only other symptom has been bad pressure headaches (I thought they were sinus headaches). My hearing is good. The MRI was just to rule out a very unlikely tumor so it was a shock to find out I had a 2cm tumor.
I was first sent to Georgetown University, I met with both the neurosurgeon and the ENT there. The ENT felt trans surgery was the best option because of my tumor size and my age and that I shouldn’t wait months to make a decision. The neurosurgeon said I didn’t need to rush a decision and it’s not an emergency at this point. But we have no idea on the rate of growth. After that I found out my insurance won’t cover Georgetown and will not cover any doctors out of my state (Virginia).
So then I went to UVA, met both surgeons, and the opinion was the same as Georgetown except that they think my tumor may be a meningioma originating from the brain stem growing towards the ear instead of the other way around. The surgeon still recommends the trans approach but he is going to discuss with the ENT about another approach (retro?) to possibly preserve hearing, although the chance is really small. My hearing is good, it’s in the normal range but 5db less than my good ear. 100% speech recognition. At this point I’ve accepted total hearing loss in that ear, I do wonder what life will be like to lose hearing so suddenly but I feel like I can handle it.
My big fear as I am sure many of you have/had the same fear is facial paralysis. Both Georgetown and UVA said 5-7% chance. The surgeon said my tumor is “large but not emergency large” but once it reaches 2.7cm, risk of facial paralysis goes up to 25%. My tumor at its largest side is 2.2cm.
He thinks there is no reason to wait and the other problem is my dizziness has dramatically affected my life. I went from traveling alone to national parks and hiking destinations to relying on people to drive me to doctor appointments. Some days I’m so dizzy I feel sick, others it’s not as bad but I’m afraid to drive, other days I feel normal.
When the surgeons go over all the risks my anxiety spikes very high, I’ve been battling my fear over this thing for almost 3 months now. All the risks of stroke and everything else that can go wrong. And of course I’m afraid I will lose my face. I’m divorced and going through this pretty much alone.
My surgery is tentatively scheduled for October 19th but I’m terrified (I can push it back if I decide)
Does anyone have any tips on dealing with the constant fear (I do have a psychiatrist and on anti anxiety meds)
And are there any positive outcomes after surgery for a tumor my size? I feel like it’s constant talk of risks of things going wrong that it’s starting to feel like a foregone conclusion. I keep thinking well the odds of getting this tumor to begin with are extremely low, so 5-7% chance of facial paralysis and 1% chance of stroke feels like high odds to me.
Are there positive stories and outcomes? Or anyone willing to talk to me about their positive outcome? I know there are no guarantees other than I will lose my hearing which I have accepted, but I’m not hearing anything about people who make it through this okay? I don’t know if I will ever be traveling and hiking on my own again? I’m very scared and sad.
MarlaB:
Hello Solo Traveler. You are not alone.
I am glad your surgeon told you about this site. I hope someone who can address your experience responds soon.
Did your surgeon also tell you about the Acoustic Neuroma Association's other resources? ANA has TONS of information and recordings of past and recent webinars on the website that may give you the answer and/or comfort you are looking for.
Best of Luck.
Marla B
solotraveler:
Thank you so much. I will look into that!
DanFouratt:
My thoughts and prayers are with you. Sorry you are here but this is a great resource and look for the local chapter. I found the NC one most helpful. As MarlaB mentioned there are great resources here and it really helped me. There are many great videos in the library. These two I found great to let you understand the options.
Has your care team talked about radiation. I am not a doctor but your tumor might be treated with radiation. My tumor was 16 mm and I choose Cyber Knife. My wife said I was obsessed with the decision process; I said I was thorough. I dug in to the three surgical options and the two radiation options before deciding, My procedure was only 9 days ago.
Dan
solotraveler:
Thank you. I haven’t talked to an oncologist, only surgeons but I also talked to my ENT who discovered the tumor and all gave me the same pros and cons. My worry with radiation is if it doesn’t keep my tumor from growing, it’s already 2.2cm at its largest side. Any bigger and I would need surgery and surgery being more risky once radiation is in there. It’s been hard to research, I’ve been so miserable like tonight the dizziness is so bad all I can do is lie here as the room spins and I feel nauseous. I wish I had found the tumor when my symptoms weren’t as bad or when it was smaller. I’m feeling upset with the Dr who was dismissive about my symptoms for years. With the current size and the severity of my dizziness, I don’t have a lot of time. I’m a single mom, I have no one in my house helping me, I can’t drive, I can’t work (self employed, so I can’t get disability) bills racking up I have to take out of my retirement. I need to get back to being able to work as soon as possible. This has been the hardest thing I’ve ever had to go through and to be so alone, it’s really, really hard. My gut feeling is that I need this thing out of my head, but I am also terrified and alone. Thank you for your advice and support, I think I vented a little too much. Having a bad day symptom wise. :-[
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