Newly diagnosed, would love some guidance

[stellanet]

Hi everyone,
Today I received my MRI results and have been diagnosed with a AN (7mm x 4mm x 4mm). It's still sinking in...symptoms started 2 months ago when I woke up with little/no hearing in one ear and then suffered extreme vertigo to the point of being bed ridden for a week. Add constant tinnitus into the mix and I was having a great time! Doctors and those in emergency weren't sure what was wrong. I was put on steroids and referred to an ENT surgeon who ordered my MRI. My symptoms since the onset of hearing loss have eased up in the last few weeks. I have no dizziness, mild but constant tinnitus and my hearing has improved to within the normal range in my AN ear (things are still hard for me to hard but much much better). The sense of blocked ear and fullness comes and goes but is manageable. Basically I could live like this for the rest of my life if necessary.

However, I am only 29 and a primary school teacher with an 18 month old daughter. I haven't been able to work even with the current and improved hearing loss I have due to background noise etc in the classroom. I'd also like to have another baby in the next couple of years so not sure how that would fit into my treatment options. I've been referred to another specialist in a month's time and have been told she will send me for a repeat MRI in 6 months to assess. Just not sure what I'm supposed to do, how to choose a specialist etc for my condition, where to research options, questions to ask etc. I'm in Australia and noticed a new people around here are also if that makes a difference?

Would just love some reassurance I guess, and some support from people who are suffering from AN as well. It seems I'm quite young to have one? And that watch and wait surely can't go on for the rest of my lifetime?! Any replies would be greatly appreciated, thank you 

[Derek]

Hi 'stellanet'...

A very warm welcome to the Forum but really sorry about your unfortunate diagnosis at your particular age. The initial diagnosis can be a daunting and somewhat scary experience but you have found the right place at such an early stage to learn from the experiences of others who have been in your exact situation. On the plus side, your AN is relatively small so you do have time to undertake maximum research into all available treatment options etc. including conservative management ( aka 'watch & wait). Thorough research is the key starting point as is selecting a consultant who has a long proven record of successfully treating acoustic neuromas. It is essential that you have complete trust in your consultant as you will rely heavily upon his / her advice and guidance. However, the ultimate treatment option that you eventually select will rest with yourself.

From a personal perspective, I was diagnosed with a 2.5cm AN almost 12 years ago and following my in-depth research I opted for 'watch & wait' which I have never regretted as my AN has actually self-reduced to the present 1.3cm. Apart from single-sided hearing loss all of my initial symptoms at diagnosis have abated. However, I was then aged 58 and it was a relatively easy decision for me to make.

If you do opt for 'watch & wait' ensure that you have regular MRI scans of at least annual duration and notify your trusted consultant immediately should you experience any escalation in your symptoms.

We are all here ready and available to help with the many questions that you will raise at this early stage and the very best of luck with whatever decision you eventually make. Be assured that whatever decision you make it will be the right one for you and you WILL be ok!

Best Regards

Derek

 

[kmr1969]

Stella,

I know you probably don't feel lucky, but you are very fortunate that you and your doctors diagnosed your tumor while it is still very small.  The downside is that you will have all of the treatment options to consider which may seem overwhelming.  The upside is that will have all of the treatment options to consider and having options is always a good thing.

You have plenty of time to make a decision about your treatment and your doctors.  I know it is difficult but take a deep breath and relax.  You can and will get through this and there are lots of good doctors out there to help you.

Best wishes,

Ken

[joanna_an]

Hi.. I am from Australia.. You can PM me if you want.. We have an association in here and you can get in touch with other patients from Oz. Might help you in making a decision.

Joanna.

[Kathleen_Mc]

You are fortunate in that this was found in it's small stages, gives you time!
I also was young (23) when my first tumor was found (was so big life threatening and didn't have ANY treatment options was in the OR about 1 1/2 weeks post diagnosis with the first available surgeon), years after I had my first child then promptly found out the tumor had regrown. I went on to have my second child and wait a couple of more years after that before having the re-growth removed.
My point is this, talk to your doctor about what you would like, if you'd like to have another child etc...you likely can go ahead and do so without intervention yet (that being said growth hormone from preg. might cause tumor growth I would think) and then get through until somethings HAS to be done. Option two would be  to deal with the tumor first then have another child.
In terms of work if it is the hearing that is an issue maybe you could get a position in the library or a small class (?special needs or something)?
There has been folks who have been watch and wait for multiple years.
Kathleen

[jaylogs]

Hi Stella! Welcome to our little club!  I am sorry you had to find this place but you'll be glad you did! As you've no doubt have seen from the other replies that this is a great place for support, as all of us has been in your position at one point.  The worse part about this whole process is that you got to make a decision about what to do.  Luckily for you, your tumor is small, so you do have options.  If you haven't done so yet, go to the home page of www.anausa.org and on it click on the "New AN patients click here". On the next page that appears, click on the "FOR A FREE ANA INFORMATION PACKET TO BE SENT TO YOU BY MAIL, CLICK HERE" link and you'll get a lot of information sent to you! Good stuff! In the mean time, you can always ask questions on here, or just vent, as most of us at one time or another.  I found a lot of info by searching the posts for specific information, which can help quickly find what you might need.  So take care and let us know how it goes, ok?
Jay

[Sandrawoody]

Hello Stella,

Being newly diagnosed is such an overwhelming feeling. You have begun a journey, and you will experience a range of fears and emotions. l believe that to be part of our human condition. Be kind to yourself, and accept these feelings, things will become easier with time. My name is Sandra, l live in Melb, Australia. I was diagnosed in Feb 2010, because of its size, and the compression of the brain stem,surgery was scheduled for Mar 2010. So , l had 4 weeks from diagnosis, to surgery, and as l say , the doctors made the decision for me. Surgery went extremely well, no post op complications, facial nerve remains intact, and l even have good hearing in the tumour side. I was one of those patients that didn`t  actually have any major hearing loss,prior to diagnosis . So to have kept good hearing after surgery was an absolute miracle.
My initial information was from the ANAA, Acoustic Neuroma Association of Australia, at least that will give you a starting point, to understanding what it is you are dealing with. Then when you are ready, discussing your options with the doctors here in Australia.
The problem we all face, is that these tumours affect us all so differently, and react to treatment differently. And as individuals, it depends on how it affects us emotionally. l am keen to see other AN patients in Australia, have a forum like this to talk about our treatment options, and outcomes of what is available here.
Feel free to contact me directly, it does help to speak with those who know exactly what you are going through........we have felt this too........

Regards Sandra
 

[Kelly718]

Hi Stella,

You are in good company here. I was diagnosed with my very large an when I was 26, which was 7 years ago. Since my tumor was so large, surgery was my only option. The best advice I can give if surgery is your choice, is to find the BEST surgeon possible. I am from New York and was grateful to find my surgeon and hero. I live now with very few side effects. I did lose the hearing in my left ear, I have a dry left eye and now recently a minor nose twitch , which is just annoying. I live a beautiful life, I have two beautiful children, home and husband. I am also a first grade teacher and love my job! I am ok and you will be too! You are in my thoughts and prayers. -Kelly

[BoedyGirl]

Hi Stella,

I'm sorry you have an AN and understand how scary it is I was diagnosed with a 5.4 cm AN about 7 months ago and my only option was surgery. I had mine removed on August 26th and am now just fine. I had no facial paralysis or and of the dry eye stuff or anything else. I was very active before and after surgery which I firmly believe is why I am doing so well. I just turned 24 so I was very young to have this as well. Now, for months after surgery I have better balance, no dizziness, and just a scar above my left ear. I did lose the hearing in my left ear but yours is small so the probably wont happen to you.

[stellanet]

Thanks so much for all your messages everyone, I've only just got around to seeing them now. I've seen an ENT and a neurosurgeon since Christmas and both have recommended watch and wait. They both said that hearing loss from surgery would be at best a 50% chance of preserving any hearing and a 50% of SSD. This is despite my relatively good hearing in my AN ear now. I was shocked to say the least, especially as I think in America they seem more confident in hearing preservation? Anyway it turns out another lesion was found in my brain from my first MRI...the neuro picked it up and I have to return for a repeat MRI next week. I'm really anxious about what this is/could be. It is clearly visible on the scans and is written in the report. I'm nervous that's it's a tumour/something sinister. Has anyone heard of brain lesions being harmless? I've had no head trauma that could have caused it and no other symptoms. This on top of my diagnosis of an AN is not ideal! Love all your support, I aim to be more active on here now. To my Aussie friends hello! I will PM each of you to chat further :-)

[chopper]

If you decide to get it removed, the best advice I can give is to interview more than one doctor.  Interview 5, 10, 20 or more if you have the option

Doing so was eye opening for me as to how the medical system works (here in America at least), and the general dimissial or smack docters will talk about others or procedures to get your business.

[Pam Fraley]

stellanet,

When they did the original MRI which found my an they also saw another lesion on the edge of the film so I had to have another MRI which showed a small lesion in my cavernous sinus (near the pituitary gland).  This is causing no harm and has not grown.  My doctor does not think it will cause any concern and he has agreed to monitor it along with my an.  So far neither have grown and I have minimal symptoms from the an so I am on wait and watch.  Hoping that it stays that way!