Diagnosed 2 months ago, don't know what kind of help I need

[nyorl]

Hi.

I had mono-aural tinnitus for 4 years. At the time the doctors (I live in the Netherlands) thought that the monoaural tinnitus was not enough to warrant an MRI.
I also had a lot of issues with clicking and popping ears over the years, and my (non-tinnitus) left ear hurt very often, along with some mild dizziness, so I didn't imagine this could be a neuroma, just the same stuff on the other ear.
Two years ago I was sure I was hearing worse from my right ear, so I went to the doctor. They found a loss of -5 dB, but told me that was not realy worrisome at all, called me crazy, sent me home.

Later (1 year ago), the tinnitus was increasing again, and becoming much more erratic, and I started noticing sound distortions in voices (in retrospect, they were already there 4 years ago, but they just become more pronounced).

As the tinnitus and the hearing got worse, I sank into depression - anxiety, constant stress...As part of an attempt to improve my general health condition I went again to the ENT. This time the hearing test showed a -35 dB loss on my right year, and I finally got an MRI. When the results of the MRI came, I was diagnosed with an acoustic neuroma 1x1.5cm, right side.

Now, that was 2.5 months ago. Since then, I had one appointment with a Neuroma specialist who set me up for am MRI in June. Besides that, I got a balance test - for which I don't know the results. So the specialist seems to treat my condition as slowly developping and told me not to worry too much, and carry on with my normal life.

However, in  terms of symptoms, the last 2.5 months have been awful.

-My tinnitus increased a lot, and varies intensity and type (from single frequency to a "fridge"-like noise) often. Worse, I never had problems sleeping, now the tinnitus wakes me up at night. I am now without sleep for 3 nights in a row, with a lot of anxiety in the mix (chest pains, palpitations).
-The hearing on my neuroma ear (the right one) is noticeably getting worse every day. I can now almost not understand any speech if I block the other ear, nor hear birds chirping oustside - and they are pretty loud. The distortion makes it difficult to hear many things, and I often plug it, but then the other ear hurts more. 
-I had a nose infection 2 months ago and since, my other ear hurts and clicks all the time. Today I noticed I am also not hearing as well as usual from it. My complaints about issues with the left (non AN) ear have always been left unresolved by doctors since I was a teenager (I am now 48), but over 30 years I had many crisis of bad hearing, pain, and dizziness. The ENT that saw me for the neuroma told me my other ear was fine, even as I told him about the pain.
-I am often dizzy, and I noticed some balance issues.
-I am often in panic, with the idea of becoming SSD, but also, given the problems with my left ear, that I can become fully deaf soon.

Now, I am telling you all this because I am feeling quite desperate. The ENT set me up a phone appointment for 2 weeks from now. In the meanwhile, I have no accompaniment except for a psychologist that is trying to give me coping techniques to deal with all the symptoms.
I feel terrible most of the time.

I am not seeking medical advice here, obviously. But my family tells me I need to find more medical help. I am fine with trying that, but I do not know what or whom to ask for.

Right now I have an MRI scheduled for June, a call with my ENT in 2.5 weeks, and a psychologist specialised in neuro with whom I talk every week. I am taking some supplements and since Friday, because of not sleeping, my GP gave me a mild anti-depressant.

Any ideas on what I could I do, what type of doctors/therapists should I see?

Edit: lots of small corrections… I am without sleep for three days, it is taking a toll on my linguistic skills.

[skier]

Hello,
I had surgery for my acoustic neuroma (translab procedure, total resection of tumor) about 5 months ago, after 2.5 years of symptoms. My symptoms were fairly similar to yours, generally. I'm sorry you are in this predicament, with all its symptoms, their many effects on day-day life, and the stress of the whole situation.

I would like to offer three thoughts that might be of value.
1- You are wrestling with symptoms that are very difficult, but just so you know, some of them can improve over time. Tinnitus often becomes less bothersome, for instance. Single-sided hearing can become a normal part of life. Balance issues can be improved by treatment (surgery) and time, and working with a qualified physical therapist who understands the condition.

And, stress is often much less after a successful treatment.

So, please know that often times, after treatment, life usually does get better, even though the acoustic neuroma does change your life. I'm speaking very generally, but many people on this chatboard have remarked that "before treatment" is the most stressful time. Take hope from that and look ahead to when you are "post-treatment". Life does go on, and it is still sweet.

2- Research support forums/organizations/referrals (especially in your home country) that may help you be able to locate the best expert surgeons for treatment of this rare condition.

3- Have a qualified medical doctor, who has a record of success and excellence in treating acoustic neuromas, help you make a medical plan. Nothing may be quite as important, right now, as your choosing the right medical team to help you make your plan.

All of us wish you well.

[nyorl]

Thanks a lot  for your answer.

I was told by some people similar things. But right now I can only think my life is over. What your telling does give me a bit of hope, I am wishing very hard to believe in it.

Ona more practical aspect, I  am worried that I am not getting enough support. The ENT assigned to me by the hospital does not answer my mails.i had one appointment in February and the next one is not even scheduled… I will have a second MRI in June.

[donjehle]

Welcome to the ANA Forums, nyori, and thanks for posting!

I felt so sad when I read your original post.  I wish someone had ordered an MRI when you started experiencing the tinnitus.  Then maybe they would have discovered your acoustic neuroma much sooner.  But that is water under the bridge now.

I'm glad skier posted.  skier is wise and gives good counsel.

I lost the hearing in my left ear while I was waiting for my second MRI.  So, I definitely understand the concern you have.  And I have learned, as skier said, that SSD can become a normal part of life.  Still, no one wants to lose their hearing if they can help it.

I also experienced debilitating loss of balance and kept falling down.  In fact, I fell down five times while they were testing me for my balance.  I sought out a highly recommended vestibular therapist who helped me regain my balance through vestibular therapy.

I don't know how the specialists are in the Netherlands, but I just want to encourage you to hang in there!  With proper treatment, life will either become better, or you will learn to adapt to your new 'normal' as many have on these forums.

I wish you the very best in your journey!
Don

[nyorl]

Thanks for your kind words.

The SSHL is very bad, also because I cannot distract myself with music or audiobooks anymore,  but it is also that the other ear seems to be hurting all the time, especially when I block the bad one. I have to live with this idea that I may become completely deaf, and that I find terrifying.

As for the rest, the reactive tinnitus is probably the worst symptom… very hard to live with, I just hope it gets better.

I will try to believe there is light at the end of this tunnel although, to be hones, I don’t see it.

[stevehernes]

Sorry to hear about your situation. I’m also struggling to come to terms with my own diagnosis while juggling my responsibilities as a student. It’s definitely a challenging time. I’ve found that accepting help is crucial. Trying to manage everything on my own has become overwhelming, especially with the added stress of my health.

[UkulelesAreAwesome]

Hi Nyorl. I had gamma knife almost 2 years ago for a left AN. I've lost all hearing in that ear and had already lost most of the hearing in that one prior to GK. My right ear also has significant hearing loss and requires a hearing aid. I agree with your feelings about becoming deaf in both ears because I have those same fears. I am uncertain if my GK was successful or not as I am scheduled for another MRI in October. Once you have made a treatment decision you will hopefully be assigned a care team who will be there to help navigate the treatment and recovery.  Life does get back to normal eventually but it's a new normal with a few challenges. 

[nyorl]

Thanks for your message, I hadn’t read it yet because I am trying to not think too much about the neuroma. Nonetheless, messages like this are comforting.

 In the meanwhile, I can report my hearing continues to get worse, but thanks to anxyolitics and anti-depresssants, I am managing to go back to my day to day routine.

Something is lost though. I may feel pleasure in many everyday activities, but I have no attachment to the idea of being alive anymore. If I could press a button and just disappear, I would most likely do it (even knowing that my wife and children - whom I love very much - would suffer a lot with it).

[UkulelesAreAwesome]

Hi Nyorl. I can understand your comments. I've cycled through the 5 stages of grief for the past 2 years. It's not easy to admit we are brain tumor patients. It's not easy to manage that kind of stress. It's hard to let go of who we were before diagnosis and accept the changes that this diagnosis brings. I try to set small manageable goals, make lists each day, and try to do what I'm able to do. It's not easy when we feel we are not in control of our health. I had my 2 year MRI 2 days ago. It shows additional increase in the tumor. I'm not sure if they'll consider it to be pseudo progression or if it means surgery. I don't want my life turned upside down.

[nyorl]

Thanks again for the kind words. Sorry to hear your tumor has increased in volume… For me the worst is the loss of hearing and the loud tinnitus. It distracts me from everything, makes everything worse.

But yes, this feeling of lack of control, of knowing that everything can just get worse than it is now, at any moment, it’s very difficult to live with this…and then I think of all the people that out up with much worse and I feel ashamed of myself. Although that doesn’t bring me to be any happier with my life…