Have a very small AN found out xmas!

[Melinda_australia]

Hi there,

I am new to forums.. Live in Australia, Queensland, I am 37yrs old.
I started with being dizzy in August of 2010.
It started out sporadically and then became continuous.
In September I went to my doctor and asked him to refer me to have my blood tested for cancer.
I knew something was wrong with me and kept insisting for tests to be done.
I had my kidneys, lungs, liver, ovaries, CT scan on my neck and then audiogram on my hearing with a result of only 92% hearing in my left ear.
All those results came back fine.
except hearing.
Went back to the Doctor "(more tests please)".

Then I had a nuclear scan on my brain.
The nuclear scan result was brainstem hypoperfusion of the mid and pons which would be consistent with ME/CFS.
The gentleman that did the scan said to me '(if you have a tumour it would not necessarily show up on this type of scan as we are looking at the bloodflow of the brain)".

With the result of the brain scan my doctor then referred me to a neurologist..
The neurologist referred me to get an MRI on my brain to check for tumours.
The result: "Small enhancing left Intracanalicular Vestibular Schwannoma".
Within the left external auditory canal. the size is just under 5mm x 3mm x 3mm. very small..
The neurologist referred me to a neurosurgeon.

It's causing problems with my balance, dizziness, tinnitus and hearing loss.
I suppose size does not matter hey!!

I have seen a neurosurgeon and he has given me the three options that everyone has with this type of condition:
Wait and watch
Radiation
Surgery

The Radiation is not an option for me.

Wait and watch is too much stress for me to deal with, the symptoms are becoming an issues to my quality of life.

I have also seen an ENT specialist and he would like me to wait and watch, He gave me this web site and said that this is the best in the world on information and support with other people that are in the same situation as myself.
So here I am chatting to you all from the other side of the world.

The ENT specialists has concerns with my age being young and thinks that maybe the symptoms are more to do with the ME/CFS, but I am losing my hearing and that has nothing to do with ME/CFS.
 The operation is one not to be taken lightly.
I want to have the mid fossa craniotomy but my concerns are the consequences on the cranial facial nerves. (Bell's Palsy)
Other concerns are going deaf.
Out of the two evils I would rather go deaf than have Bell's Palsy.

Being such a small Tumour I would like and think and hope that the neurosurgeon would be able to successfully preform the craniotomy without causing Bell's Palsy.
I am already having facial numbness on the left hand side of my face(My top lip, under my eye and just under my eyebrow).
So.. there's a small run down of my situation.

I'm due to have another MRI at the start of March and then back to the Neurosurgeon to give him my decision on how I shall proceed, I will also be seeing a new neurologist as well.

Could anyone who reads this, who has had a similar problem to mine (tumour size), please give me some feed back on how their recovery was with facial numbness and going deaf. Even Tumours that are under 2cm.

Kind Regards to all
I look forward to a reply
Many thanks.
Melinda.

 

[mattsmum]

hi melinda - sorry to hear about your diagnosis.
i have a small to medium tumour (1.6cm) in canal and in cerebellopontine angle, which i had treated with radiation july 2010. i had balance probs, and a mild fluctuating hearing loss amongst other symptoms before treatment.
i did not want the risks of surgery - especially facial palsy, had an 'active' tumour  - so chose radiation which appears to have the greatest chance of hearing preservation if done when tumour is small (less than 1.5cm).
two things i  think are very important to remember - are firstly that no treatment (and i include watch and wait in this) is guaranteed to save hearing; and secondly that symptoms present before treatment are very unlikely to go away after treatment, whether that is surgery or radiation. i know there have been some lucky ones - but most of us with balance and hearing probs before treatment continue to have them after, and they unfortunately often get worse whatever is done. thankfully there are options to help impaired hearing if impacting on quality of life, and vestibular rehabilitation can have good results in improving balance problems.
i know this will be a very worrying time for you - you will need to get as much info as you feel you need to make and be comfortable with your choice. the good thing is that with these small tumours we do have the luxury of time to get that info and think it through.
it is hard when you are given a variety of options, and different people have different views. the treatment of our tumours is largely built up on experience, not proven in true scientific studies and so the range of opinion is quite wide.
i hope some of this is heplful, and i am sure you will get a lot from this forum. i wish i had found it sooner than i did!

best wishes,

vikki (in uk)

[CHD63]

Hi Melinda and welcome to this forum .....

It sounds like you have been through an incredible number of diagnostic tests ..... not fun!  At least you know what you are working with now.

Yes, a 5 mm AN is considered small, but apparently causing you significant distress.  In addition to size, the specific location where it is growing is also important to what symptoms you are experiencing.

As vikki said we have no guarantees with the outcome whether we watch and wait, radiate, or surgically remove an AN.  All we can do is make a careful decision after much research and choose a medical professional who has had vast experience treating specifically acoustic neuromas.  Because ANs are so rare, there are fewer physicians who have treated them.  It is so important to go to a medical center/physician that specializes in treatment of acoustic neuromas.  Many of us on this forum have traveled great distances to be treated by the most experienced.

Just curious as to why radiation is not an option for you.  In my case it was not an option for two reasons: 1) I had radiation treatments to my head as a child 2) my tumor was a rare rapidly growing type.

Best wishes and let us know how you are doing.

Clarice

[moe]

Hi Melinda,
Welcome to the forum! Though my tumor was med-large and I didn't have a choice in treatment, I wanted to welcome you anyway

Sounds like you are considering all options, the outcome varies whether  you have radiation or surgery.

 In case you are worried about cancer of some sort later on, in relation to the radiation,
that myth has NOT been proven correct. Some docs will say it MAY cause cancer, but they really don't know that.....

Did the doctor put you on some sort of steroid (temporarily)  to calm things down? I have seen that frequently and it seems to help the symptoms.

Anyway, continue to post, vent, let us know how things are going.
Surgery IS a big deal, no need to rush into any treatment unless the symptoms are debilitating. This is a very small growing benign tumor.
The journey continues....
Maureen

[rayden1]

Hi Melinda,

So sorry about your diagnosis. I had no choice but to have surgery due to size and growth unusually was more rapid . I was unfortunate and got faciial paralysis. Most people recover sooner than I have. Dont have full recovery but most is back. My neurosurgeon and ent are among the most experienced worldwide in an by the way.

Have no hearing in that ear but that was gone before surgery. The tinnitus went away completely. Be careful in your choice of treatment. If mine was small enough think I would have opted for radiation. Good luck.

annx

[TJ]

Melinda

Welcome to the forum.  When my AN was found it was the same size as yours 5mm.  I decided to do W & W to see what it was doing.  Within 2 years if doubled in size.  The AN is on the right side, I had already lost a lot of hearing on my left side from "Sudden Hearing Loss".  I decided to have radiation in an attempt to save as much hearing as possible.  I have lost a bit on the AN side and I am having some balance issues but hope they will get better.

Take your time and look at all options and choose the best for you.

TJ

[hendi51]

Melinda, I'm sorry you had to come to this forum but you will find an enormous amount of info here. My husband was diagnosed with a 5 x 7 mm AN as far in the IAC as possible. He has lost all of his hearing in his left ear, his balance is terrible, he has spinning vertigo and just about 2 months ago developed a "feels like bugs crawling on his face" symtom. We have been in watch and wiait for nearly 4 years but one week ago was told they will do surgery in 3 to 4 weeks. Lynn also has had 2 heart attacks so that is one reason surgery has been put off so long. His tumor now is 1.5 cm x 1.3 cm which is still considered small but has to come out. Lots of luck to you on whatever you choose to do.

[Melinda_australia]

Hey Everyone!

Words can not express my gratitude for your support, kind words and prompt reply!! 
I have read everyones reply..
Thankyou so much!! 

I have not enough money to pay for the radiation treatment at this point of time ($5000) it is the lastest technology in Radiation treatment.
There is only one in the state of Queensland with the lastest technology.
Australia's medicare system has item numbers for every procedure.

$5000 is the gap that is charged even with our Medicare system and my Insurance.

There are other radiation treatments available, it will not cost me anything, however the technology is so old.
I do not want to really compromise myself with a procedure that was given to people more than 20years ago.
The Radiation Oncologist said that the symptoms will not go away after Radiation treatment, would stop growth, but the tumour is still alive.
The symptoms going away is all I would like to achieve..

My quality of life is suffering and I am a working single mother with two young boys that I have to consider (5 and 6).
I find myself on a daily basis struggling (not coping) to do the simplest daily chores and my work.
Sometimes my balance is that bad it's as if I were drunk and I am feeling sick when I get dizzy.
I have broken my little toe twice in 3months and I think the stress of inability to function normal has giving me depression.

When I speak to my friends they really do not comprehend what I'm am experiencing and now I don't really want to talk to them about myself anymore.. because people don't want to really know..
I'm not saying that they don't care.. but everyone has their own issues in life that they have of their own.
 
There are no support groups here in Australia for AN that I can go to and as the stats are 1 in 100,000 not many people here have this condition or at my age.

I am in the process of registering myself with a Cancer support group, as this is the only support group that's available to me and were I live, so hopefully I can get some much needed councilling before I have a major breakdown.
 
My ENT specialist is a surgeon and has preformed only on one other woman with basically the same symptoms as myself (41) and she still had the same problems after surgery.

ENT said that maybe there might be medication that I could take to help my with the consant headache that I'm having however the balance issues will still remain.
ENT also suggested that I go to Melbourne (over 2000km away) if I choose Middle fossa surgery, as there is a neurosurgeon there that has done over 1000 middle fossa surgeries.
 
The neurosurgeon that I see in Brisbane is an excellent surgeon too.
He has separated conjoined twins, which gives me some faith in his skills.
I asked him how many surgeries has he preformed with my condition and he said five. they were all fine with cranial facial nerves however that doesn't mean that mine will be. as every surgery is different.

I suppose that's what turns someone inside out with this problem, options.  there are no guaranties and too many choices.
Radiation can still damage the nerves, and if surgery does need to be done later then the complications are far greater than not having Radiation.
I still haven't had enough information about post Radiation problems and surgery problems.
So I shall continue in my search to obtain information from such wonderful people as yourselves. 
I really thankyou all for taking the time out to read and respond to my letter.

Kind Regards
And Many Thanks
Melinda 


 

[Suu]

Hi Melinda
I found that there is a support group in QLD - http://www.qana.asn.au/

I can understand your thinking when you say you need and crave support because it's in our genes that we turn to like-minded people, as are on this forum.

The people here have eased my mind on so many things even without me posting.  I put in a search and voila! there's someone that knows how I'm feeling right there on the screen in front of me.
You'll also find the best and worst case scenarios as well as the laughter and wit that can come out of dire circumstances.

This is a soft place to land when feeling lonely or frightened.  I'm learning a lot and I thank you for being here.

Suu - Central Coast - NSW

[moe]

Your comment:

I suppose that's what turns someone inside out with this problem, options.  there are no guaranties and too many choices.

is so true.

So sorry to hear about your circumstances of dealing with the symptoms, being a single mom with the 2 kiddos.
My heart goes out to you! Hang in there. Given your circumstances, the surgical approach sounds the most feasible (insurance and all).
One day at a time......Did the doctor ever try you on a steroid to decrease the symptoms???
Maureen

[Melinda_australia]

Dear Vikki in the UK,

Thankyou for your support and information.
You had Radiation in July 2010.
What does vestibular rehab involve?
Has it help you with your balance and are you happy with it?

Kind Regards
Melinda 

[Melinda_australia]

Dear Clarice,

Thankyou for you kind welcoming. 
You had Radiation as a child, have you had a recurrence as you grew up and becoming an adult?
Apart from the coast, my concern is if Radiation is done now and surgery has to be done later, the risks are higher.
Or can you have Radiation twice? Rather than Radiation and then surgery? If it goes that way in the long term.
Balance is a concern too.
How is your balance?

Kind regards
Melinda 

[Melinda_australia]

Dear Maureen

Thankyou for you support and welcome! 
As you can tell from the two big posts that I sent I Have seen allot of doctors!!
lots!! and then some..
I felt it important to try the best that I could to explain my situation to you all and try not to sound so self absorbed..
It is had to explain with out doing that.
I don't think I'm so concerned with it turning into Cancer after Radiation treatment..
just concerned about it growing again in 10 or 15 years and having to make another choice then.
I still haven't spoken to the new Neurologist yet in regards to medication treatment..
I thankyou for your suggestion and I have truly taken it on board and definitely will be asking that question to him when I see him.
So awesome thankyou!! 

Kind Regards
Melinda 

[CHD63]

Melinda .....

I sent you a private message to answer your questions.  Look up at the top, where it says Hey, Melinda_australia, you have ?? messages, ....., click on the underscored and it will take you to the message.

Clarice

[mattsmum]

hi melinda,
i am quite early in vestib rehab. i am on a 'home-directed' programme - i see the therapist every 4/52 or so and do daily exercises between. the exercises will be tailored to your situation. at present i am doing gaze stabilisation and vestibulo-ocular exercises (which involve playing cards and post it notes), and since i started about a month ago have noticed significant improvement in vertigo and nausea, though i am still pretty wobbly and stumble/bump things a lot. my ent says it is important to keep persevering to get maximum benefit. i hear from the forums that some people have weekly visits to a therapist - i just have what is available on the nhs where i live.
as others have said - do take your time to read/research and think through the options.
i think i was underprepared before i had my treatment and have only become aware of some of the options/implications since i was treated. well done for finding this forum and the sources of info and support it can bring!
best wishes,

vikki