New AN Patient

[Dawn from MN]

I've had bilateral hearing aids for about 15 years. I'm 54 now. In March I had my annual hearing test. My left ear has always been worse than the right ear, but this time I couldn't hear anything with the left ear. The audiologist suggested I see an ENT to rule out rare causes of total hearing loss. I saw the ENT in April. He ordered a brain MRI just to rule out anything causing my hearing loss. The MRI confirmed a left acoustic neuroma measuring 1.5 cm x .9 cm x 1 cm.

I have been referred to a neurotologist. I have an appointment in June. I'm very anxious and have struggled with accepting the diagnosis and feeling at peace with it and then also feeling panic because I don't know what's next.  It is my understanding that a hearing test and possibly other tests will be done at the next appointment and my options will be discussed.

I've researched acoustic neuroma and I've found so much helpful info here.  I have noticed the gradual hearing loss and have adapted to it.  The tinnitus sounds like a bird chirping. I ignore it and it doesn't bother me constantly.  I have some left sided facial tingling from my ear to my mouth sometimes.  It isn't painful and goes away.  I notice ear pressure and fullness which gets worse if allergies are acting up.  It improves with decongestants and antihistamines. I don't notice a lot of balance issues.  I was diagnosed with hashimotos thyroiditis in 2015 and graves disease in 2017.  I had the normal shakiness and tremors until my thyroid calmed down. I feel tired.

I am terrified of the fact that I have a potentially growing tumor and I am hoping the neurotologist feels Gamma Knife could be a good option.  I would have less anxiety if I felt I'd taken control of the situation by zapping the tumor with radiation to hopefully halt its growth.  Am I correct that the gamma knife procedure is a good option for someone like me who already lost the hearing in the left ear and have been confirmed to have acoustic neuroma? In some ways I feel the tumor is a validation that I have done everything possible to hear better and just could not hear. I'm accustomed to being the subject of hearing aid jokes and being told I should get my hearing aids checked when I ask people to repeat things. I'm grateful the audiologist and the ENT found the tumor and I'm grateful that there's an explanation for the hearing loss.

[donjehle]

Hi Dawn from MN!

And welcome to the ANA forums!

I am so sorry for all the issues you have been dealing with for more than two dozen years, and now this!!!  But you have come to the right place.  Those of us on the forums know what it was like for us to struggle with accepting the Acoustic Neuroma diagnosis and with experiencing both anxiety and panic. 

But I am impressed that you have done a lot of research on AN.  Gaining knowledge was the one thing that put my mind at ease.  I was glad to find out that Acoustic Neuromas, while brain tumors, are rarely malignant.  That brought some relief right there!  And then reading the posts of those who have journeyed ahead of us brought me comfort and strength.  Just to know that they have not only survived but are quite functional gave me a lot of hope.  That is why I encourage people to post their stories; there are hundreds of people who come to the ANA forums and who will read your story.  When you share your triumphs, it gives encouragement to others.  When you share your challenges, it helps others to have a realistic expectation of what might or might not happen. 

Everyone's AN journey is different, and that is okay.  You have not had balance issues; for a while I had to use a cane and fell several times.  I haven't had facial tingling like you have had some.  But we are on the same destination.  Someone once said, there are many ways to get to the number 9.  You might take 5 + 4 while I take 2 + 7, but we both end up at 9.  And that is how it is with Acoustic Neuromas.  Our journeys may be different, but we all know what it is like to travel along the way.  And it can feel very lonely on this pathway if you don't have the support of those who are fellow travelers.

In terms of your particular AN and Gamma Knife as an option . . . you (with counsel from your neurotologist) are the best one make the decision on the treatment options.  Sometimes, those on the forums tend to think that whatever treatment option they chose is the best one for everyone.  If they were treated with Gamma Knife, they recommend GK for everyone.  If they were treated with Cyber Knife, they recommend CK for everyone.  If they had surgery, they recommend surgery for everyone else, including the particular approach which was taken with them.  My point is that we are all different, and not one size fits all.  As you talk with your neurotologist, express what you believe is best for you.  It is your life and your body, and the results will affect you, so you should make the decision.  If the neurotologist says, for example, he does not feel comfortable with GK because of the size of your AN, listen to him carefully, and then get a second opinion.  Many of us on the forums have asked for second or third or even fourth opinions.  There is nothing wrong with seeking additional opinions, and many neurotologists or neurosurgeons will do them for free over Zoom.

We are rooting for you on your journey, Dawn from MN!  Please keep posting and update us with what you eventually decide to do.

Best wishes,
Don

[MarlaB]

Are you going to Mayo? The drive will be worth it. The docs there are awesome. Wishing you the best.

[bfoley]

Greetings Dawn! 

Sorry you are in our boat.  I too am in MN, and was diagnosed around your age.  Please consider Mayo if that is not where you were referred. I was originally referred to U of MN. I had to wait almost 3 months to be seen, which I felt was way too long (and this was pre-covid).  In the meantime, I started doing my research. I learned that the more VS or AN (whatever you call it) are treated at a facility, the better the patient outcomes tend to be.

Which lead me to call Mayo for a second opinion.  This was 4 weeks prior to the U of MN.  I got a call within a couple hours, and had an appointment for a week after U of MN one.  I had my mother, a retired nurse accompany me on both appointments.  She took notes for me as you get parts of what they say but maybe dont catch everything as its fairly overwhelming.

Everyone needs to decide for themselves, but with the number of tumors treated at Mayo (way more than U of MN) and the efficient way patients are handled at Mayo, it was the best choice for me.  U of MN is 20 mins each way and Mayo 1 1/2 hours.  Totally worth the extra drive time there and back.  I was given the option of surgery or Gamma, and I chose Gamma. Dr Link was my Dr there.

I wish you every luck in your journey.  Please feel free to ask me any questions. Our journeys are all similar but individual, and it helps to hear about others.

Bonnie

[bfoley]

Dawn -

Everyone's journey is different. Looking back, my symptoms were there for a while, balance issues (turning head while moving and feeling unstable).  At the time, my husband was having severe heart issues and I attributed them to stress.  December 31, I fell on ice (normal in MN winter right?) The next week, I noticed a change in hearing.  I turned head to left normal, turned to right, sounds got quieter.  OK the fall pushed wax on my eardrum (right?) Went to regular Dr, they referred me to audiologist.  They did the test, referred me for MRI w contrast. I got a call 5 days later.  You have a brain tumor, we can't help you, the U of MN will call.

Talk about anxiety! No information, no clue on can this wait, no resources. another anxious week before the call came and it would be for 3 months to be seen. I started digging and found this forum.  PURE GOLD!! It was eye opening to see the range of what people experienced. 

I decided this was far too big (for me) of a decision to NOT get a second opinion.  Someone is going to mess with my brain.  The thought of not being able to move one side of my face, close one eye (worst case) was too frightening to not do more. So eventually I called Mayo for the second opinion.

U of MN appt was hearing then wait.  And wait, and wait.  They lost me in the shuffle of patients.  Eventually they "found me" I was right were the hearing person put me.  There was a team who looked at the MRI (which had been sent prior) and told me I could wait, do Gamma or do surgery.  I was a candidate for all.  The tumor was getting to the point where Gamma would not be possible with continued growth.

2 weeks later at Mayo, they said the same thing, and did caution that I should do Gamma sooner if that was going to be my choice.  The tumor was close to the brain stem.  I believe this was around the end of April. I made my choice to go with Mayo.  It felt better, more practiced and just better to me.  I know not everyone feels like this, and just wants it over.  I had Gamma consult 6/10/19 and procedure on 7/18/19.  They were doing Gamma on Thursdays so you have Friday - weekend to recover.  I was back working the following Monday.

It was a one day appointment.  At Mayo, I reported in am got in gown and was given a pill to take the edge off.  They do bolt a headframe to your skull.  They use this to determine precise measurements for the radiation beams, where it goes, so not to fry your brain cells, only the tumor.  Then I had both a MRI and a CT scan for tumor positioning.  The radiologist and Drs review those, determine the procedure details, then you go to Gamma area. Once you are done, they remove the headframe, bandage you up and have you wait for a bit to be sure no adverse effects.  I was home by early afternoon. 

For the next several days the face swelling was not great.  But it did go back to normal.  It took about a week.  If I had know that I might have tried WFH the following week.

Follow ups are annual for 5 years.  If no growth, then go to every other year for another 5 visits. Then?  When I get to be on medicare, I dont know what they cover or where.  So I will see what happens then.

I urge you to look at what feels right for you.  I have had conversations with 2 other folks I have met outside of this forum in MN, both of whom went to the U of MN and felt great about their choice. One older than me, one younger.  Both chose Gamma.

How I am doing now is I still work full time.  Pre-covid I could to 1 day WFH.  We went to WFH full time w covid and were told we could continue that for now. (yay!) I consider myself pretty active.  I walk my dogs daily at the off leash dog park (over a mile walk), and manage to get about 9,000 to 10,000 steps per day according to my apple watch. I am single sided deaf, the hearing was totally lost in right ear from February hearing test to May appointments. So it was growing fast.  Tinnitus is constant, but you cant change that. Its a high pitched electric sound for me. I do have "hearing aids" which are a microphone on bad ear that pipes sound into good ear.  I do continue to work on my balance daily with  walking. 

I am happy to answer any questions you have that I can! Sending you my most positive thougths!

[skier]

Hi,
Your new diagnosis reminded me of the early days when I didn't know what to expect, and the wait for follow-up visits seemed long and fraught with peril. But, the truth is, the AN diagnosis is not a medical emergency. If it was one, the doctors would treat it like one. So, just understand that as frustrating as the slow pace of decision-making and treatment planning may be, that it is also a blessing because you will have time to hear your options and build confidence in your treatment choice and doctor choice.

I have an AN about your size, Dawn, and we share some of the other symptoms, too. I was diagnosed in Oct. last year. I'm still deciding on treatment. Basically the consensus was to get a repeat MRI, at 6 months, to measure growth, before choosing either a microsurgery or radiation treatment. I am likely to choose fractionated radiosurgery. But that's just me.

The Mayo Clinic does Gamma Knife procedures, which you mention. (I think there is a video presentation on radiosurgery by Dr Michael Link on the ANA website under resources. I don't recall all the details, but it was very reassuring.)

Perhaps you will consider getting two consulting opinions, and then you may become more ready to make a choice. I found getting a consult at Mayo (a remote visit, in my case) very easy and very helpful. They are recognized experts.

You may also want to get the booklet from the ANA website for Newly Diagnosed Patients. I had several consults, and at first, I was confused by all the choices, but with time it became clearer what was right for me.

Sorry you are in this "boat", but I am more hopeful and calm now than I was at the beginning, so I hope that is true for you too. Knowledge is power, with this diagnosis. At first, I was very upset that there were so many treatment options that I had to consider, but eventually, I have come to see it as a blessing. There was time to think it through, and that is fortunate.

Take good care. Sending you peaceful healing thoughts,
Skier

[Greece Lover]

Dawn,
I'm a former Minnesotan who now lives in Iowa. So sorry to hear of your diagnosis.  It looks like you've already received a lot of support and good information from the forum here. 

My tumor was 1.2 cm and my doctor at University of Iowa called that "the large side of small."  So yours may be just bumping into the "medium" range? 

I understand your reluctance to get to the appointments, etc.  All of this is very anxiety producing.  I hope your first appointment goes well.  They may likely do their own hearing test.  But the appointment mostly I would guess will be talking through options.

I would also strongly recommend checking with Mayo.  Dr. Link is world known for his work with AN, and I think they offer a wide variety of treatment options, so they'd be well situated to give you the best advice you can get.

good luck!

[Greece Lover]

Dawn, you're totally right about people not knowing what to say.  Even worse, they often say things that are totally (in my opinion) BS.  They say things like "this is all part of God's plan" or "God doesn't give you anything you can't handle."  They say these things to make themselves feel better, nothing more.  I'm a theologian and I spend a lot of time working with people who will begin pastoral care situations, and most often, silence is better than saying something when you don't know what to say!

anyway, I digress, but it sounds like you're on a good path.  The waiting indeed is difficult.  In some ways it is the worst part.  Hang in there!

[donjehle]

Greece Lover, once again you are totally correct.  When a person doesn't know what to say, silence is the best option.

And sometimes I should be silent when people say ignorant things like, "Did you get this from listening to loud music?".  Instead, I reply, "No, they say I got it from listening to people make dumb statements" -- which is not true, of course.  And I need to learn to be shut my mouth and be silent.

But, Dawn, you have articulated extremely well the fear, anxiety, and panic I experienced upon first learning my diagnosis.  I probably went two weeks in disbelief, thinking my ENT doctor was wrong, and it couldn't really be happening to me.  After all, I live a healthy lifestyle.  I'm not overweight.  I'm not on any medicines.  I exercise.  I eat a nutritious diet. etc., etc., etc.  But it can happen to any of us.  And yet, the good news is that we can live fulfilling rewarding lives anyway.  Some people have told me that their AN has been a blessing in that it caused them to slow down and appreciate life more, and they value each day more than they ever had before.  I'm not at the point where I see it as a blessing yet, but I work in a hospital, and I see people every day who have conditions far worse than what we are dealing with.  And I try to put my situation in perspective.

Thanks again for your amazing posts!

[Greece Lover]

I would sort of agree. I suppose if asked, I would obviously prefer not to have had a tumor and surgery, etc.  However, it has become so integrated into who I am, and has really caused me to change a lot of things in my life. And it has helped me to empathize with other people who are suffering.  Nobody should ever lead with the "silver lining" right after a diagnosis, but its very hard to think of myself now without having this experience. 

[Greece Lover]

It's good you can be honest about these things and work through them.  hang in there!

[donjehle]

I think I can handle the idea of a brain tumor easier than I can the cost of the annual MRIs! Even though I have insurance, it still is a chunk of change after the insurance pays its part.  Like you, Dawn, I'm a vegan, and I may be limited to eating beans and rice for a while because it's all I can afford after the medical expenses.  But I'm sure we will survive the challenges, financial as well as physical.

I'm sorry about your mother, Dawn.  I struggle enough dealing with my AN over the last six months.  I cannot imagine what it was like for her to deal with her disability for almost 50 years!  Her story and her spirit are an inspiration to me, and I can only imagine how her life must have inspired you as well!  And you have overcome other challenges in your life; this one, while seeming insurmountable at times, may in the end not be as bad as the other things you have dealt with successfully.  We'll see.

We are rooting for you!