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. 

[DanFouratt]

Dear Solotraveler,

If you need to vent please do I am a good listener. I recently went through deciding what path to take in addressing the tumor. It is a difficult trip. My wife said I was obsessed in the research, I was just being thorough.  However the one thing I did discover in my work that in general surgeons are not a fan of radiation. You may want to reach out to an oncologist just for a second opinion.

My thoughts and prayers are with you.

[solotraveler]

Thank you for your thoughts and prayers and for taking the time to reply, I really appreciate it.
I never met with an oncologist but I had a long discussion with my ENT about each approach (he is the one who found the tumor, but isn’t a surgeon).  The surgeons I’ve met with went over the pros and cons of each approach (surgery, radiation, monitoring).  Once my ENT gave me the same pros and cons, with my tumor the large size is what scares me to try radiation.  Has your tumor reached your brain stem?  Mine is on my brain stem, and now they think it originated from my brain stem.  So radiation would probably go in my brain stem, that’s the first scary part, the second is if radiation doesn’t stop the growth.  Any growth in mine and surgery becomes more of an emergency situation and then it’s stickier and harder to remove.  The other aspect is my anxiety.  I have huge anxiety over the surgery.  But I also have terrible anxiety knowing this tumor is there (at a large-ish size) so every little symptom I have (even if not related) I’m immediately like omg Omg the tumor is pressing something new.  My anxiety gives me worse symptoms, it’s such a struggle.  At one point I thought the whole left side of my body was going numb and I was becoming paralyzed and the neurosurgeon checked me out and said he didn’t see anything wrong.  Then it got better immediately. It was all my anxiety.
My surgeon called me yesterday and he said after talking to the ENT, he wants to do the retro approach and try to save my hearing, because my hearing is still really good. I did ask to meet with him again for more questions. He has spent alot of time with me, I keep asking to meet him and he spends 2 hours each time and says he’s always there if I want to come back and talk again.
When I replied to you the other day, my symptoms were acting up badly.  Today I can drive!  I never know what kind of day I’ll get, but I’m afraid to ever venture out too far because severe dizziness will hit out of nowhere.  That’s the other thing is I have to rely on finding a ride to every appointment I go to. I’m glad you have your wife for support through this (I’m NOT diminishing how hard it still must be for you). I am divorced and going through this alone. I decided to stay single for a while and here I thought I was this strong woman who was traveling alone and seeking out the most dangerous hiking trails to do on my own, started a business on my own and then Bam!  Diagnosed with a brain tumor on my own? I feel not so strong anymore, this is hard (and I know it’s hard for all of us no matter what the situation). But I also have some moments of hope wash over me.  I’m not sure where it comes from other than from a higher power.  For months I’ve been in fear, crying, asking “why?”  and asking will I ever laugh and smile again?  Is this it for me? The other day I realized it wasn’t the tumor keeping me from laughing and smiling.  It was me. It was always me keeping me from doing it.  I decided to play music and dance in my yard the best I could with dizziness.  I have to kind of stay in one spot and dance haha.  But I did it. And I smiled.  And I cried at the same time. Because I realized all along it was me keeping me from dancing and smiling.  And I cried and I dropped to the ground in such gratitude.  I felt gratitude during my non dizzy days.  On days my ear wasn’t making horrible noises.  But I wasnt being grateful during my dizzy days. It just hit me like a ton of bricks. Even on my dizzy days, even when my ear is sensitive to noise and makes a horrible sound.  I don’t know what the future holds.  But on this day, today, I can smile.  I have two working legs and two working arms.  On this day I have two working ears to listen to music.  So I’m going to listen to music and I’m going to dance around my house the best I can and I’m going to smile. Don’t get me wrong, I am still terrified. I still have anxiety.  I still cry. But my surgery is oct 19th and today is not oct 19th.  Today is sept 27.  Spending sept 27th in fear does nothing to help me and nothing to change the outcome.  It’s really hard but I’m trying the best I can. Thank you for reading this long message if you decide to read it and thank you again for your support and I pray that your tumor has stopped growing forever, or even shrinks from the radiation and that you have nothing but good health from here on out. 

[DanFouratt]

Dear Solotraveler,

 In answer to your question my tumor started and the vestibular nerve and was well position for Radiation. My surgeon was not happy with the decision but accept and was part of the team that reviewed the procedure with the radiologist.

I am happy you made your decision and have a plan. I hope you have all goods days between today and Oct 19th. Please dance around your house and enjoy everything around you.  you are strong, we all are AN strong as we need to be. It looks like you made the decision not to let this issue dominate your life and I and glad for that. After October 19th you will have more good days.

Stay strong and positive and the future will bring you a great many things..

Thoughts and Prayers are with you,

[Roggae]

I have received almost exactly the same diagnosis over the last week. Same age. Dealing with the same feelings. Will know more about options after this week with meetings with Dr.’s. You’ll get through this. I will too.

[solotraveler]

I just now saw this, I am sorry you are going through this too. My surgery date was rescheduled for Nov 1st.  They want to do the retro one to try and save my hearing (my hearing is still really good for some odd reason?) With the size of my tumor, every doctor has been surprised about my hearing.   My main symptom has always been dizziness (and ear ringing) which became much more debilitating earlier this year.  Do you have dizziness? From what I’ve been told at least from surgeons at both Georgetown and UVA, everything is the same for AN vs meningioma.  Same treatment, same risks.  The ENT at UVA (Dr Kessler) told me a meningioma is more likely to slide off the facial nerve than stick to it like an AN.  Hoping he’s right.  But they still gave me the same 5-7% odds of facial paralysis. I’m trying to take things one day at a time and as much as possible enjoy the beautiful fall weather lately.  Sometimes I feel some hope wash over me that it will all be okay.  Other times feel scared again.  Other times I’m too dizzy and sick and miserable to even think straight.  Thanks for your reply to my post and I wish the best for you and I hope you will update.

Sandy

[bfoley]

solotraveler-

Sorry you had to join our little club.  I found reading other peoples experiences were great to set my expectations on what to expect with feelings / appointments, etc. 

I am hoping you can gather your support team to help you through this challenge.  Look through the discussions and make a list of what you will / may need.

I started with Gamma - and it was not successful, so I had translab in January.  I am lucky that I had my support team to see me through.  It is crucial to have confidence in your doctor and their staff.  Make sure you are comfortable with that care team.

You might consider having meals ready in your freezer.  Things easy to eat like soup.  The surgery affects your taste (well at least for me and some others I saw on the board). Nothing tasted right or good, only on the surgery side.  That was odd. 

I got help with housework.  No bending after surgery (I just kept my head up and squatted if I needed to "bend").  But absolutely be careful about weight lifting restrictions. 

My sister came to my house daily to "walk" her sister.  We went to indoor malls and conservatories. I did not want to risk falling on the ice and snow here in Minnesota.

Before surgery and even to this day, I do PT exercises to help with balance.  I am walking 8000+ steps most days, one walk is at our off leash dog park on uneven terrain.  Highly recommend you find some way to stay active and challenge yourself (but not TOO much of a challenge).

Its a scary thing.  Everyone here "gets" it.  We are here for moral support.  Please take deep breaths, be gentle with yourself, and reach out for assistance.  HUGS!!

[Roggae]

I’ve spoken with surgeons and radiologists and I’m leaning towards cyber knife. It’s still small enough and even the surgeons agree it’s going to be impossible to get it all. It’s like a little octopus. I may wait until after Xmas but not sure. Now moving on to the insurance phase to see what’s covered.

[DanFouratt]

Roggae,

Good luck with your procedure.  I am not sure if you are waiting until after Christmas for "recovery" reasons. If so, I would consider moving it up and getting it done.  I had CK three weeks again and I feel I am 100% today.  I would say I was well north of 90% the day after the procedure.

I hope it goes as well for you as it did for me.

Dan

[Roggae]

Thanks Dan. My motivation for waiting is we plan to visit my folks for Xmas. They live in a very remote location in Canada. Health services are limited. If I needed anything beyond an aspirin, it would become complicated. They’re old, so seeing them is important. So, earliest January when I’m back near doctors would ease my mind.

The surgeon with whom I spoke suggested getting a follow up MRI 4-6 months out before choosing radiation. The one I would receive immediately prior to CL be 3.5 months after my last one. It would provide a second data point while also moving forward with my preferred treatment.

Is your suggestion to act now based on the fact that we know it’s there so why not act immediately? I agree in principle, but neither the radiologist nor the surgeon has suggested we need to spring into action. I appreciate your response and perspective. Learning about others’ journeys is incredibly helpful.

Were you faced with a choice of surgery or CK and if so why did you choose CK?

[DanFouratt]

Roggae,

I had the choice between the two. My ENT was very pro surgery. I spent well over two months researching the options. My wife said I became obsessed, I am engineer, I was being thorough.  Whatever, I built a sheet with different concerns, points to consider and recovery topics on the left and the five options (2 radiosurgery and 3 traditional surgical on the top). Put notes in each intersection for what I thought the outcome/concern were.  I used many of the presentations on the AN website, any new presentation taking place thiss summer so I could ask questions and spoke with 3 surgeons and 3 radiologist from four different university, three of them have presentations in the AN library, the other was UNC.  (Okay maybe my wife was right about being obsessed.)  I studied what I built, took my age (62), my goals in to account and my caregiver (wife) concerns. We ended up believing radiosurgery was best for me. I looked at the sheet again two weeks after and knew I made the right decision.

After the decision to use radiosurgery, I research the GK vs CK confusion.  I do believe there is a lot of missed information out there on the two. I have not written my thoughts down (plan to next month) but felt that CK at UNC was the right combination for me.

I am willing to share this if you think it would help you.

Take Care,

Dan