My story

[queenie]

Hello everyone,

I can't believe it took this long for me to find this forum.
I am a 25-year-old female living in Scotland and I have an acoustic neuroma.
My symptoms started back in 2014 when I woke up to this whooshing sound in my ears. It was strange but I did not worry about it - only it did not go away at all. I went to countless of GPs and they gave me the silliest recommendations, like to pinch my nostrils and blow at the same time. Needless to say; it did not work.
Anyway, I've had pulsatile tinnitus since then. I can hear the blood flow to the rhythm of my heartbeat. It's kind of like when pregnant women go to hear their baby's heartbeat for the first time during an ultrasound. It's that kind of a noise. It's 24/7, never ever stops, not even when I sleep. This makes me extremely tired all the time.
Yes, I've tried everything. I've been attending ENT appointments, we've tried the soundball, hearing aids, relaxation, etc.
At first, they ignored the fact that my tinnitus was NOT your usual one. Not the ringing type. The fact that it's pulsatile clearly suggested that it's something physiological- yet, they kept saying that it was due to stress.
After two MRIs that happened somewhat by chance, turned out I have an acoustic neuroma.
Now, interestingly, the doctor did not tell me just what size this neuroma was or even where it was. But based on these terrible pains that I keep getting I'm guessing it's on the right side. I get this pain behind my ear, radiating into my skull just there. I also have very bad electric headaches.
I was supposed to have my next MRI back in October. But nothing happened, the letter just didn't come. So in February I made loads of phone calls, and turns out, "they had forgotten about me". That did not feel too nice... anyway, the MRI should be happening in May. I still haven't received a letter from the NHS, but I guess it's coming.
I've just been feeling...not too good, to be honest. I feel that I need some support from people going through the same thing. It feels very isolating, very lonely, even though I have a lovely support network, the most loving husband I could hope for. But they don't really know what this is like. I'm constantly tired, I get these really weird days with a stiff neck where I can barely move my head... and my tinnitus is so so loud. Sometimes I feel like I'm not sure how long I can keep going to work. Also, I have a second cousin, also female, same age as me, who had a neuroma in her spine. She couldn't walk. I'm really scared that I might have that too...and also, I'm not supposed to have bilateral tinnitus if I only have a neuroma on one side! So I wonder if I might have neurofibromatosis type 2. But how do you even get tested for that? Doctors haven't been the loveliest with me to be honest. Most of them were completely lacking in empathy. The doctor who told me about the neuroma was very rude...and when I went to see a GP and I was crying, she very angrily snapped at me with "so what do you want from me?"
I'd love to hear from anyone with similar experiences. Or if you're feeling like this and would just like to talk, I'm here. Funnily enough, I'm doing my postgrad in counselling & psychotherapy, ha-ha.

-E.

[MarlaB]

Ugh Queenie, I am so sorry to hear your story. You didn't say how long you have known you had an acoustic neuroma. 

Your symptoms will make you crazy, so congratulations for reaching out for support. There are MILLIONS of us out here (I may be exaggerating a tad) who have been in your place. Seriously, a few hundred thousand anyway..And those of us who are here will support you in your journey.

Two important things you need to know when deciding on your next steps... Size and location.

I hope you have requested (and possibly received) all of the information about Acoustic Neuroma/Vestibular Schwannoma from ANA.

I don't know if there are many doctors who treat ANs in Scotland regularly. You want someone very experienced. And there are experienced AN Surgeons/physicians all over the world. They all use the internet.

The ones I am most familiar with are in the US and Canada.

[Director]

Dear E
  I don’t know how the NHS service works, but it sounds like because of your age and the fact that you have a relative with a spinal tumor, you should get tested for NF2. This is genetic testing and I don’t know the availability in the UK. Is there any possibility of you being able to push them to test you? There should be more action happening based on your symptoms.
Also if they can give you a copy and report of your MRI you can send those to doctors in the states to get their input.
Allison
Director@ANAUSA .org

[Patti]

Oh Queenie!  That is so much to bear!  I don't know how it works in Scotland, but here I have found that you need to stay on top of the medical staff or they can "forget" you.  My story is long and sounds bad, but I can tell you that it gets better after treatment.  Not necessarily the same, but different, and you adjust over time.  Just an example of how you have to be almost pushy with medical staff:  My ex-doctor required a blood-test for kidney function before each MRI (a good idea due to frequent use of contrast agents).  I was on my way to the doctor's for an MRI (2 1/2 hours onto NYC) and I realized the doctor never sent me for a blood test. The physicians assistant said come anyway.  It's ok.  We drove all the way there and were told by the MRI staff that I couldn't get one without a prior blood test. Driving in NYC is not pleasant and our stress levels were so high.  There were too many incidents like that so I changed doctors.  So don't be passive.  Always call and verify before the day arrives.  Make sure you get an MRI WITH contrast especially for this upcoming one.  You have to learn a lot and be a bit of a pest to make sure things are done right.  Be actively involved in this situation, not relying totally on the staff to do the right thing.  And I wish you the best! Please keep us posted!

[queenie]

Thank you so very much for all your replies!
Sorry, I did forgot to mention that small detail; even though I've been suffering from my tinnitus since 2014, I've only known about the neuroma since May 2017. They did my first MRIs in January/February 2017. The first one was without any contrast material, but because they saw something they had to repeat it with contrast.

I completely agree with all of you - you do have to be a bit of a pest when it comes to this. It's just quite an uncomfortable thing to do unfortunately. But then again, they don't seem to feel uncomfortable for not showing much empathy.
Next time I see the neurologist (it also doesn't help that every time I go, it's someone different!) I'll ask him to show me the MRI picture. It just felt like he wanted to get it over with without actually telling me any of the details.
Also , I used to have this hope that someday my tinnitus would stop. If they could take the neuroma out, surely the sound would stop? But the ENT specialist told me that unfortunately, this will never go away.
I will definitely keep you posted, I guess it's just a waiting game unfortunately...

[jsteph]

I hope you're doing all right with your docs and neuroma.

I can relate to some of your trials. Most of my experience with medical folks who I've dealt with over the 3+years of my AN have been fine. However, when I was told I had a brain tumor by my ENT's assistant, the message was delivered with clinical coolness. I don't fault the assistant-some people are better with things like this than others and I think she may not have known how to behave with bad news.

Additionally, I also have a lot of neck stiffness and soreness. I don't sleep well because my neck and shoulder muscles just don't seem to ever fully relax. It's quite fatiguing but I'm kind of used to it.

I'm watching/waiting. My symptoms kind of hold steady-better sometimes, worse at others but generally about the same over my 3 years since diagnosis. Life is still good!

Best of luck to you!

[FPS36]

Hi Queenie i've read your post and can say that i also have a AN in my right ear around 10mm. about 12 years ago i noticed i was often clumsy and stumbling i eventually went to ENT with bad headache the consultant gave me a nasal inhaler (laugh) later as my problem did not go away i had MRI and they found the AN which do not get treated by a nasal inhaler. I then saw a neurosurgeon but it was felt as the AN was only about 6mm surgery was not an option as it could make balance worse. I then had Gamma Knife Surgery (not a knife as such)
by this time AN had grown 10mm but although Gamma Knife does not eliminate it does stop it growing. i also had  mild tinnitus but my major problem is balance i find it necessary to adjust my life style so i do not stand up too quick, do not walk too far, do not get over tired and more important try not to get stressed. If out walking i feel loss balance thin i sit down and all is ok within seconds. I do feel sympathetic for you but believe me it is something that you can manage. i now have 2 yearly MRI and my AN is stable. so at 80 yrs im not too bothered

[queenie]

Thank you for all your lovely responses and for sharing your stories.

I am having my follow-up MRI with gadolinium next Saturday. After that, I will hopefully get an appointment where they can tell me some more about how fast it's growing etc...

Also; I finally know a few more details about my neuroma! I went to see the GP who was actually able to show me the reports the neurologists did not bother sharing with me. So apparently, it was a really small neuroma/schwannoma with a 1 mm focus. It is situated in my right internal auditory meatus. I wonder how much it's grown, as that MRI was 1.5 years ago (I don't expect it to be much larger I guess?)
My issue is...why the hell do I have bilateral tinnitus then? Why do I not just hear it on one side? I'm worried that there's another one they didn't see. Every time I told the doctors it was bilateral, they didn't really react, they actually write "left-side" or "right-side" tinnitus, which is funny, because it was always bilateral.

I will write again once I know a bit more. Thank you for everyone's support and again, thank you so much for sharing your stories.

[GaleWynne]

I have a very small AN, barely 2MM now, on the left side. I have tinnitus and it has always been on the opposite side of the AN, it's whooshing now.  I had to use rain and ocean sounds to sleep at night, since it would "blend" into those sounds.  I had to somewhat train myself to ignore it. It must be very difficult to have it in both ears.  There must be other people out there who have it in both ears and have tips on how to manage it.  I hope you can find one or two of them and get some ideas.

[Patti]

Please, Queenie, let us know what the MRI shows!