Hello from a newly diagnosed

[Esperanza]

Hello everyone,

I have just been diagnosed as having a small AN -  Three weeks ago I had no idea this was coming and felt completely normal...  I had a couple of days of a feeling of pressure in my left ear and then suddenly woke up with a vertigo attack in the middle of the night, was off balance for a few days and had sudden total hearing loss.  Fortunately I was able to see a specialist very quickly who initially treated for a labrynthitis/cochleitis.  The heavy dose steroids and anti-viral pills have taken their toll on top of what has been a very stressful time.  Had my MRI last Thurs. and results yesterday.    I had no real problematic systems in the run up to this.  Occasional mild tinnitus which certainly didn't cause me a problem, no balance problems  - I did have a feeling of slight fullness in that ear on and off but again as one who has endured 'waxy' ears it was not enough to alert me to the seriousness of what was to come. 

So it all happened literally overnight and it has been a very traumatic couple of weeks.  I am  coming to terms with my hearing loss and fortunuately my other ear has excellent hearing.  No more anti-viral pills and I am coming off the steroids.   I am starting to wish I had done more last summer to investigate the slight fullness feeling but I doubt I wouldn't have been sent for an MRI on that alone.  Didn't notice any deterioration to my hearing loss in every day but again as I didn't have a formal hearing test before I will never know.  I am very sad. This forum is a wonderful resource and I have been reading it with interest.

I am in the UK so would appreciate any info. from people who have gone through the system here.  I am being referred to a specialist in Liverpool to decide on the next step.   I want to get back to normal asap.  Have a lot of internal head noise and pressure on and off on that side and I think for me that is the worst thing at the momemt as it sometimes interfers with my concentration and hearing with my good ear.  Also vibations on that side when I talk?    Did a short run to the supermarket yesterday and it was overload for my good ear  - any advice on how best to cope with situations now with my new hearing status?

Thanks again - wishing everyone well...
x

[kat]

Hi Esperanza

I am sorry that you have had to join this club but for support and infromation you are in a good place . I am also in the UK on the North Yorkshire coast  and was diagnosed  over three and half years ago with 2.2 cm AN . It was found almost by accident since loss of hearing and tinnitus were all the symptoms I had and just like you I thought it was wax or a perforated eardrum which I had due to a very heavy headcold .  After the initial shock my husband and I did as much research as we could on the internet and  also through BANA which is short for The British Acoustic Neuroma Association . They have a website www.bana-uk.com
which offers information on various treatments and there is also a forum similar to this one allthough not quite as active . To
participate on the forum you do have to join and there is a small fee tor that .

Since AN's are quite rare  my GP had not had a patient with the condition and my ENT specialist had only had one patient with AN . She favoured surgery and had made an appointment for me in Manchester where I thought that all the options would be discussed since by then I favoured Gamma Knife . On the day only surgery was offered and only the negative side of GK were discussed . I then had to persuade my GP to get a consultation in the Royal Hallamshire in Sheffield to see if I was a suitable
case for GK and I even gave my GP all the relevant telephone numbers and websites to get all the infromation . Luckily he agreed
and after an appointment I was scheduled for GK which I had almost 6 months later . All of my treatment exept my initial consultation in Sheffield were on the NHS .  I am one of the lucky ones since my symptoms before and after GK have been minimal
and I have just carried on with my life as normal .

If you need any personal information on my GK I will be happy to provide it . Remember that there is life after AN and if as you state your AN is small all the options are open to you . The choice is yours and a lot depends on the exact location of your AN and your age as well as your personal circumstances .

Best Regards Kat

[Battyp]

Hi Esperanza. That is one of my favorite characters in a book series I read!
In order to help with the noise issue while out I would suggest putting over the counter ear plugs in your good ear. I had problems with too much stimulus entering the ear canal which really messes with your balance and fatigues you. Using over the counter ear plugs help reduce the noise making shopping easier. I think partly because it increased my tolerance.

Best of luck to you,
Michelle

[Esperanza]

Thanks for your kind words and information.  I think I will use ear plugs - my hubby has a supply at work so I will try those..
Been reading through some of your stories, you are all so brave on here.   Reality check kicking in now I think, I wish I had the virus!

[Yvette]

Greetings Esperanza, know that we are here for you! There are lots of folks who have been through the surgeries and who are doin' great, so take heart. Let us know what procedure you deicde to have done.
Also, musician's plugs were the best help for me. They are custom made so they are more comfortable than most. I paid 180.00 US dollars for them. They have a center filter that allows you to hear the person speaking who is closest to you, and they only block out all the surrounding and background noise. In a noisy restaurant I can hear my hubby talking to me, but the loud music etc are much reduced. With the solid foamy plugs, I couldn't hear him :-(

Best wishes!
Yvette

[pattibobatti]

Hi Esperanza,

It is kind of a HUGE shock, finding out....  You are just beginning this journey and have come to the right place.  There is so much to learn, too. 

My best advice is to find out what your best care can be.  There are many ways to take this AN on and I'll bet you find your way.  Try to find the most expierienced doctor that you can. 

I had a terrible time on steroids, too.  But you will be off of them soon. 
Take care,
Patti

[trhoads]

Esperanza,

I had just about the same experience as you did.  Mine was Jan 13, 2007-- I woke up with the room spinning, with no other symptoms.  I went to the ER and they told me I had viral labrynthitis, my family doctor agreed, and no one prescribed anything for me.  I was dizzy and vomiting for 14 days before my family doctor finally ordered an MRI, which found the tumor.  My tumor was less than 1 cm, but I was very symptomatic.

I decided to have the surgery (which was 5-1-07) to 'cut the nerve' so that my dizzy spells would eventually get better.  The dizzyness was really bad after the surgery with them cutting the nerve, but I went to physical therapy and did a lot of exercises to help 'retrain' my brain to go to the left side for balance information.

I would have to agree with many others in that you should take time to research all of the available options, and unfortunately, none of us can tell you which is the 'best option.'  That is a decision that you will have to make with your doctors.

As you come up with new questions, keep posting, and hopefully you will get the information that you need.

Best wishes,

Tonya

[Esperanza]

Hi All,

This has been a real period of adjustment and I don;t feel I am doing so well.

The specialist has recommended a wait and watch and said my symptoms would improve (feeling slightly like i am on a boat sometimes which makes me feel a bit sick - head noise is just so dreadful and that is the thing that is really holding me up - he said that would improve too but how can I make that better now?)     BUT how can these things improve whilst the tumour is still there applying pressure to the nerves? 

Have never suffered any noises in my head like this before and to have it now 24/7  is really getting me down...

[jb]

Hi Esperanza,
Hope you're feeling better today.  I'm not sure about your feelings on meds, but just wanted to mention that I had similar symptoms and was helped tremendously by a small dose of Xanax.  I took 0.25 mg in the evenings and it helped to calm my nerves and ease the tinnitus to the point where I could at least get a decent night's sleep.  Xanax also helped with my occasional unsteadiness as it is a "vestibular suppressant."  Of course some doctors and/or patients are reluctant to use Xanax due to the risk of dependency, but if your symptoms are severe it might be worth considering.

[pearchica]

Hi Esperanza: I love that name "hope". The early days post diagnosis are the worst by far.  You are assessing a ton of information, learning all these new terms, and generally trying to get by knowing that there is the thing in your head.  I admire those who are watch and wait.  Fortunately for me - and I really do consider this fortunate- I had to make a desicion. I had about 6 months to do it but with my size 2.5 CM- it was go time. Consequently, I opted for CK six weeks after first diagnosis. I had 4 separate opinions, three recommended surgery, the fourth recommneded CK over surgery as I had no balance issues, otherwise he would have gone for surgery. 

If you opt for radiation, know that it is a long haul to find the right doctor- treatment for AN's in my not so humble opinion are biased towards surgical removal, depspite gamma knife radiation being around for 40 years, and CK being around for 9 years. 

I'd get a hold of Derek- he is a wonderful man- is in wait and watch mode and lives on your side of the pond.  Send him a personal message-I know he would be able to steer you in the right direction or at least provide support for you. Take care Esperanza- there is hope out of this whole mess!  xxoo Annie

[Samantha n Adrian]

Hi Esperanza!  I’m sorry you’ve officially joined our club, but welcome.  As you’ve seen over the course of the past few weeks, this is a great site with a lot of very helpful and caring people.  Everyone handles the initial shock of discovering their AN very differently, just as the procedure and subsequent recovery of every AN is very different.  I’ve said this to you before and I’ll say it again…..there are SO many people that would love to be in our AN shoes.  As a relatively new “postieâ€?, 5 months now, I can honestly say this is so much better than I initially thought it would be.  I too developed all kinds of strange “symptomsâ€? right after discovering my AN.  I don’t know how much of those were real, or just my mind playing “tricksâ€? on me.  I never let it slow me down though…..I still kept doing all of the same activities that I did before.  I did take Dramamine (don’t know if you have that drug in the UK) for motion sickness and it did help with the vertigo.  Check with your doctor before using.  My good ear also developed tinnitus right after being diagnosed.  Loud places…..stores, restaurants, etc were hard to handle.  The loud noise mixed with my bad ear intensified my vertigo.

The fact that your Dr. wants to watch-and-wait is promising.  What size is your AN and is it compressing your brain stem at all?  Size and location have a lot to do with if you should watch-and-wait, radiate, or have it removed.  I personally had NO choices.  I was 4cm when discovered and severely compressing my brain stem.  You do need to research your doctors.  I was very lucky (with a big dose of Divine Intervention) I discovered that I had 2 of the best AN surgeons near my back yard (2 hours away in Tampa, FL).  Interestingly enough…..neither doctor is mentioned on this forum, but by me and another member, Runnergirl.  But upon meeting them and researching their history, each doctor has performed several hundred (500+) AN or AN related operations in their career.  I’m not sure if you’ve heard of House Ear Clinic in Los Angeles, California, but they are considered one of the best, if not the best, AN clinics/surgeons.  I had consulted with them and was very set on them operating on me.  It was very nice to hear that both Dr. Schwartz and Dr. Luxford at House Ear Clinic told me that I was in great hands with my surgical team or Dr. Bartels and Dr. van Loveren, and that each of them fully respects my doctors.  That was the icing on the cake for me.  I heard that literally just a couple days before my surgery and it really put me at ease.  Thus I say……Divine Intervention.  Do your homework!

Try not to freak out and think of the worst.  There is life after this….a very good life at that!  Keep us all informed.

Adrian

[Esperanza]

Thank you Adrian,  your recovery and outlook has been an inspiration....

My AN is still small (10mm) but the bit in my auditory canal had a vessel bleed which is why everything happened pretty much overnight for me -not that uncommon apparently as the blood vessels in the tumour are more fragile (or so I have been told).
I will go back for an MRI in July and see how it behaves.  The speclialist tells me that my facial nerve won't be comprised for a while yet so I have time to see how it grows. 

I have been told my specialist is internationally respected and I am not sure I would gain much from seeking a 2nd opinion right now - again will see how it behaves!.  He is not too keen on the radiation route for under 50's because of the long term risks of side effects?  My ENT specialist here would go to him were he or his family in the same situation he says.  Actually dealing with having an AN is not the big issue for me, I can take it as it comes and deal with whatever treatment is recommended as that happens.   I have worked really hard on my balance and you would not be able to tell I had the vertigo and balance issues a few weeks ago...  I have exercised, tried to do things with my eyes closed (it does work as long as you stop before you feel too sick!) lots of dog walking..
It is the profound sudden hearing loss that has floored me and is knocking my confidence.

I have been promised that the wooshy tinnitus WILL subside as my bran adjusts and I am trying to be positive and pay as little attention to it as I can.  It's just that is seems to be worse when it 'not supposed' to be.
I actually don't mind it too much when it's quiet - it doesn't seem to stop me from getting to sleep (although I am waking up 2 or 3 times during the night).  It is worse when there is other noise around and I am trying to listen to what people are saying or concentrate generally in a noisier environment - any hints or tips? 
I have also been told my brain will adjust to the hearing loss and compensate, especially as I have such good hearing in my right ear - is this really true?  Again it's fine at home but when I go out the world is an alien place and I just don't like it - this is supposed to get better too with time? 
I noticed you talk of the problems you had in loud places - are things a lot better now and what about your tinnitus in your good ear, has that eased off?  You say you haven't let it stop you doing anything and I truly admire that.   It is where I want to be (just not quite there yet!).

Take care.

[Jim Scott]

Hi, Esperanza:

I'm sorry you have a reason to visit here but you seem to be dealing rather well with your initial AN diagnosis.  I don't have specific advice to offer except to welcome you to this website and forum and to add my assent to the prior statements that assure you things will improve.  For a tumor as small as yours (10mm) radiation would seem the logical choice but that should be determined by you after educating yourself and probably consulting with more than one doctor.  Many doctors jump to performing surgery for an acoustic neuroma,but that may not be a necessity or, should you have such a choice, be the route you wish to take, as it were. 

Obviously, you'll need to utilize the internet to gather more information on acoustic neuromas, surgery, radiation and what is the best way to approach this situation, which may simply be 'watch-and-wait' (do nothing but get semi-annual or annual MRI scans performed to 'track' any tumor growth).  I understand the U.K. AN website is useful and there are other sources of AN information available on the 'net.  Radiation treatment for AN tumors is a tad controversial with some doctors but widely accepted in the U.S., especially on small AN tumors that are not pressing on the brainstem.  You do receive a large dose of radiation and that precludes the option of receiving radiation treatments later in life, should you ever need it, as with cancers, but that is a risk you will have to decide about taking - or not.  I had no choice as my AN was large and pressing on my brainstem.  I ignored my symptoms far too long but survived hastily-scheduled surgery to reduce the size of the tumor and cut off it's blood flow, then, radiation treatment (FSR) to kill the  tumor's DNA.  As my signature says:  'So far, so good'.  The tumor is definitely shrinking and shows evidence of necrosis (cell death) on my MRI scan (taken in December) and my symptoms have disappeared.   There is life after an AN diagnosis.     

Please try to remain connected to this website and forums and let us know how you are progressing.  We care and we do understand. 

Jim

[sgerrard]

You do receive a large dose of radiation and that precludes the option of receiving radiation treatments later in life, should you ever need it, as with cancers, but that is a risk you will have to decide about taking - or not.

Hey Jim,

I'm in a bit of a nit-picking mood today, so I wanted to respond to your statement above. JB posted elsewhere a link to a good discussion thread on the cyberknife forum: http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=6126

One reply in particular, from Dr. Spunberg, is relevant to the statement above, on the question of receiving other radiation treatments after radiating an AN:

"Absolutely no problem. Radiation dose is limited by how much was received by that and neighboring structures, and there is no restriction on treatment to any other part of the body, or even to other parts of the brain away from the area treated."

There is more discussion, and not as strong an agreement, about whether you can re-treat an AN with radiation, but I think the CK doctors agree that other kinds of radiation treatments are still available after treating an AN with CK.

Steve