AN 2.5cm+ in New Zealand ... surgery Jan 25 2013 CSF leaking out ear

[Sam-NewZealand]

Hi All,

Introducing myself here, I have just been told i'm requiring surgery as the tumour is pressing on my brainstem. 

History is i had hearing loss on left side tested in 2010 - showed loss but no further testing put down as viral or something.  Now at 29 having had another test and results showed further loss and constant Tininus i was sent to a ENT specialist June 2012.  Outcome was MRI ordered with expected 3 month wait, possible insertion of a gromit, again most likely viral but be aware in rare cases AN may be present usually no further action required if it is.  3 months later i'm getting headaches - painful and often with stars, ear feeling fuller and general uncomfortable all round, gaining weight and feeling lazy but busy working 2 jobs, project managing a renovation and completing two study papers.  I rang specialist who said no i wont upgrade MRI to urgent but come in for gromit to see if it may help. I decided to spend my money on a second opinion - thoughts here were yes need MRI, also order a set of blood to rule out .... (can't remember) - no point in trying gromits and possible but uncommon that AN may be cause and if it is most likely outcome is monitoring.

16th Nov - MRI day ... 40 min MRI with contrast added half way through, 8 scans preformed.  Side affects felling terrible like hungover but full and heavy tired head. 3 days later results at GP & got sent through to 2nd specialist.  GP nurse rang to ensure i had an appointment with specialist - this confirmed my thoughts on findings & i asked for MRI results copied to me ... after reading i learnt of confirmed tumour 2.5 + .  Saw specialist 3 Dec, explained AN - due to size and placement it is pressing into my brainstem and surgery likely.  Case refereed to a specialist in Auckland who will preform surgery likely to go through the ear and remove tumour, possible removal will reduce tinnitus and remove any hearing from the left ear (which i'm keen to preserve what is left!)  So currently researching my options and possible outcomes - feeling alone as NZ doesn't seem to have the network USA does, but hoping to get there.  Community and friends showing support but am feeling anxious and fearful of the procedure.  Noticing lots of dizziness and vertigo, Dyslexia, memory loss, balance disruption coinciding with hitting the odd door frame or wall and overall overwhelm of jobs to be done v's tiredness and lack of motivation.

Sure is a place i didn't see myself being so young, i'm a mum to two girls 5 & 3 yrs old and its frightening for them as well to see mum in tears so much.   but i sure hope quality of life is better after surgery.

[Jim Scott]

Gidday, Sam and welcome to the ANA discussion forum.  I'm sorry you've been diagnosed with an acoustic neuroma but glad you found our site, decieded to register and post.

Feeling a bit overwhelmed at receiving an AN diagnosis is perfectly normal.  We've all been there and can certainly relate to what you're feeling.  AN surgery is a bit daunting but thousands have gone through it and come out O.K.  I underwent AN surgery to debulk a 4.5 cm AN, then underwent radiation to destroy the remaining tumor's DNA and stop it from re-growing.  Both procedures were successful and six years later, the tumor is dead and I'm doing fine. 

To be honest, AN surgery can involve some complications so choosing a doctor with plenty of experience in AN removal is crucial to helping ensure a good surgical outcome.  Obviously, I can't offer any doctor/hospital recommendations in your country but I can offer you the understanding and support of a host of other folks, mostly here in the states, that will be eager to answer whatever questions they can and give you encouragement and the kind of empathy only other AN patients can give. 

My advice is not to allow your fears and worries to control your life.  Acoustic neuromas are 99% benign and treatable.  Your youth is a plus as your ability to heal from the surgery will be enhanced and your two girls will be a constant motivation to your recovery.  I'm confident that you'll do just fine, Sam and please remember that we'll all be here to support you.

Jim

[PaulW]

Hello Sam,
I live in Adelaide Australia. A city similar in size to Aukland.
I am hearing your concerns.
Unfortunately where we live means the case loads of the surgeons in treating AN is often low.
The best surgical results are coming from a team of two surgeons. Typically a Neurosurgeon and an ENT Surgeon. This method was pioneered at House in the US and is a practice that has been copied by many in AN removals. The team of surgeons also need to have done quite a few AN surgeries before their complication rates drop. There are a number of medical papers on this.
One paper somewhere says they should have done at least 20 operations, and do at least 10 a year
The best results come from surgeons who have performed over 50 AN surgeries and do more than 20 per year. 

However some surgeons still do it alone, and only do a few per year, and the results are not as good.
Its a difficult operation...

So do ask your surgeon if he works as a pair or on his own

Ask how many AN surgeries he has performed.

Ask about death rates.
I was first introduced to the world of AN after a friend 32 died after surgery for a 2cm tumour.

Death rates are around 0.5% in Australia I believe, which is similar to most modern countries.
Death rates and complications do vary a lot, between doctors.

They can be higher than 2% for some surgeons and virtually nil for others.

http://www.ncbi.nlm.nih.gov/pubmed/12897555

http://www.ncbi.nlm.nih.gov/pubmed/21856684

You are probably a candidate for radiation and there is a chance that your hearing can be preserved.

You may want to investigate Gamma Knife which is now available in Sydney..

http://muh.org.au/health-services-australia-gamma-knife.html

Gamma Knife is now largely covered by the Australian Medicare System. Possibly the bilateral agreement between Australia and New Zealand will help reduce the cost. You may want to investigate this.

There are also higher case load surgeons in Sydney and Melbourne, or even explore going outside of Australia and New Zealand.

Due to similar concerns to yourself I ended up having my AN treated at the European Cyberknife Centre in Munich Germany. Dr Alexander Muacevic. The whole procedure took 2 hours. Mask making and planning CT scan, that was about 30 minutes. Cyberknife was 35 minutes. the rest of the time was talking with Dr Muaceveic, for as long as I wanted. Flew out of Adelaide Saturday lunchtime was back home thursday... Dr Muaceveic is currently the president of the radiosurgery society and one of the most experience radiosurgeons in the world.
The European Cyberknife centre has treated many hundreds of AN's I believe close to 1000 AN's.
Extremely happy with Dr Muacevic, and the result.

Australia did not have Gamma Knife or Cyberknife in July 2010
I believe New Zealand does not have Cyberknife or Gamma Knife. 

I am also hearing about positive outcomes from the Australian Gamma Knife Centre in Sydney.

Don't be afraid to look outside New Zealand for the best outcome.
Do lots of research.
There is some really good information in the members section of the ANA website and some great insights provided by the best experts in the world at the ANA symposium. These papers are available for download in the members section.

[It is what it is]

I'm very impressed with the reaching out for information you are doing.  Having little ones and working full-time leave limited time and energy to deal with tumors.  My thoughts are with you.

Karen

[Sam-NewZealand]

thank you all for replying, yes i'm exhausted -finally stopping to let diagnosis set in and to aid my body better.   I called my specialist RE referral as i hadn't heard anything and within 3 opening hours max (waiting for Dr Hamish Sillars to come back in clinic) i was called with an appointment for Tuesday afternoon ... so Tuesday will be full of driving to Auckland (5 hours)  But i can't wait for more information and answers to my concerns.

Paul - I agree in looking around and at options .. it appears they are ruling out radiation at this stage & i feel confident about this as its affecting me more then i first thought and need some definite results with surgery.

Jim - thank you for you're insight - it amazes me just how little info was out there so i'm very fortunate for this forum.  I've been through a few hours of pure emotional frustration as i've found in NZ that you seem to get suck in the paths specialists send you & it appears AN's are becoming more common in NZ so i'm fortunate to learn that Dr Sillars has done about 300 ish AN operations, up to 20 a year & often works with another specialist during surgery.

Karen - i'm fortunate i have a great family for support and have stepped back from many duties to enable me to focus on this xx

So i'm looking forward to the next step - noticing tiredness, dizzyness and confusion more along with being very emotional of course.  I'm starting a list of questions and keeping positive but its still a big shock and i find dealing with telling people the most draining - like a record on repeat ... we will get there though

[It is what it is]

I am soooooo glad you have support at home!  Please keep us updated. 

Karen

[Sam-NewZealand]

surgery booked! ... going private 45K NZD but hope insurance will help out, i'd rather sort this tumour out and i'm not finding many other options.

so on the 25th Jan i'll be having it removed by Dr Hamish Sillars assisted by Dr Robert Gun in Auckland .. so far private hospital and food look great lol ... on a serious note though after the trip to Auckland to meet and chat with Dr Sillars i found him really positive and had a few impressive stats on history of AN surgery + he offered me an opportunity to chat with past patients.

but its 11pm here and i need to sleep - night all

[Tumbleweed]

I agree in looking around and at options .. it appears they are ruling out radiation at this stage & i feel confident about this as its affecting me more then i first thought and need some definite results with surgery.

Sam, it sounds like you are committed to surgery and have disregarded radiation treatments, so I'll make this brief. My only concern is that you may not have gotten a second opinion from a radiation specialist. Just because your tumor is touching the brainstem does not necessarily rule out radiation treatments. And surgery may not give you the "definite results" you're seeking. Have you asked your surgeons what the chance is, in percentage terms, of the surgery causing permanent facial paralysis? For a tumor your size, the risk of permanent facial paralysis is usually exponentially higher with surgery than with radiation. Especially considering you are a young woman, you owe it to yourself to ask your doctors what the chances are of permanent disfiguration, if you haven't already asked.

If you're open to getting a second opinion about radiation, I and others can provide you with contact information for leading practitioners who will review your MRI and give you their recommendation for free.

Surgery may indeed be the best or only viable treatment option for you. I'm just concerned you may be rushing into it with false expectations, not enough info, and without thoroughly researching your other options.

Best wishes,
TW

[Sam-NewZealand]

hey TW

Yes I agree I haven't gone to a radiation specialist. I have taken word of my specialist that looking at his research and other information I have read that my instincts are right.  Its kind of hard to explain but after diagnosis i feel at rest with relief, like i have always known something was unique about me and my mind and so much stuff has got worse over the years which has been easy to fob off to other things - tiredness = mum with waking kids all night etc.  But the numb sensation setting into my face and the ongoing variations of pain in my head need me to make choices and action. Surgery i can have paid with help of insurance - however radiation will not be covered and they wouldn't know when it would happen in New Zealand as i'd be in the public system & we don't have a GK to my knowledge of asking and research. ... maybe its selfish but i can't wait that long, the tumour has been there for a long time as the bone has grown in a wide < instead of a = to accommodate it - i just want to feel better then this, i've been working on me for about 3-5 years almost solid - therapist to therapist and i'm at the end of my faith to deal with looking past removal and i feel 'robbed' that i haven't done something 2 years ago when if i was more proactive in following up my doctor then action may have come sooner. ... hard to explain, i'm at a real low today and have 4-5 kids to watch from 9am - 3pm

Arohanui xx

[It is what it is]

It sounds like things are falling into place.  My thoughts are with you.

Karen

[Tumbleweed]

Sam, it sounds like your gut is telling you you've made the right decision (and therefore you have!). That's the most important thing. I was concerned that you hadn't yet reached that point and that your decision was premature. But you sound resolute and at peace. Congrats on moving forward.

Best wishes,
TW

[ewchisek]

i bet you feel much better with your surgery booked..Im in that process right now.  If you dont mind me asking, what type of surgery did you chose?

[Sam-NewZealand]

Thanks TW ... i agree it all has moved fast & i still question the approach and loosing all hearing in my left ear .... its daunting but that is the only issue i'm questioning.

Hey ewchisek - YES amazing how a date can really help with the process, i'm booked for Translab Surgery & although it sounds the best option i still worry about the fact all hearing will be lost - how are you going on your journey?

Weekend has been full of tiredness and hay-fever

[mattp]

Hi Sam,

I'm over in Melbourne, Australia and have just been reading about your diagnosis. Really sorry to hear about it, it's certainly not an easy journey to go on.

I am 27 years of age, and have a Facial Nerve Neuroma (which is slightly different to your tumor, in that mine is on my facial nerve). While the tumor's themselves are different, I wanted to try and give you insight into the loss of hearing.

I had surgery in June 2011 for what the surgeons thought was an AN - turned out that they discovered a FN, and it was 5cm+. They removed as much as they could without severing the nerve, however the operation did mean that I lost all hearing on my left side.

I want to re-assure you as much as I can, that while losing your hearing on one side is daunting, it is not as bad as you think it will be. I have found it to be a mere nuisance more than anything else, and really only notice it when I am out at loud places such as the pub, sporting events etc.

You will quickly learn to position yourself to the left of everyone else, so that you can hear the majority of people without any trouble. It becomes second nature very quickly, in that you will find yourself standing on everyone's left hand side without even realising you've done it.

It does take some getting used to, but please try not to stress too much about it. Nearly everyone in your life, be it on a professional or personal basis, will do whatever they can to make you comfortable in your surroundings. It can be a challenge, but it is very bearable.

I wish you all the luck in the world for your surgery, and I know you will have a quick & smooth recovery.

All the best,

Matt

[Sam-NewZealand]

Hey Matt - thanks for your post it has helped me making another step closer to acceptance.  Yes its the annoying thing that's getting to me too though + worry the tinnitis may become worse ... Small price to pay in the long run, but would be nice to think i could be 'normal' again after the surgery.  I guess I've never 'been' sick & even birthed my youngest at home.  Hospitals and surgeries really aren't my thing so its making this hurdle higher to jump and overcome.  Plus my weight is increasing with emotional eating so feeling that I'm failing myself and my dreams at the moment.

its a low day with a feeling of overwhemingness, husband out working til late so am solo with kids & the jobs to be done are endless (and maybe even unrealistic) the dishwasher just became un-repairable and the stove thermostats for the rings and oven just went .... trying not t sweat the small stuff but geewizz can i get a break now?

xx thanks again Matt & everyone for the support

Sam