I think I might have blogged about the acoustic neuroma before. But considering that my previous post encouraged so much arguments about my condition, I might as well clear the air by writing about the AN again.

So what exactly is the acoustic neuroma?

The Acoustic Neuroma (AN) is the nastiest of all benign tumours. It grows in the auditory canal, and in the case of NF2, it grows ON the hearing nerve itself. What makes the AN more different on NF2 patients is that, it grows from the hearing nerve rather than the balance nerve, and it is made of neurofibromas instead of schwannomas, which causes its growth to be more unpredictable.

Why is it dangerous?

The auditory canal consists of 3 major nerves, which is the hearing nerve, the facial nerve, and the balance nerve. The canal is very compact. An inexperienced surgeon may sacrifice all three nerves along with the tumour removal. This will cause the patient to be deaf, paralysed on the face, and fall down all the time.

The Acoustic Neuroma is often not painful and its initial symptoms are ringing sounds in the ear, imbalance and gradual deafness. Many people fail to seek medical treatment at once, and until they do, the tumour is already too large to remove without risk.

And the risk ofcourse, is having the facial nerve severed and surrounding tissues scarred. There is also risk of surgical complications such as excessive blood loss and death.

The Acoustic Neuroma can be fatal

But the biggest threat is this. The Acoustic Neuroma grows right next to the brainstem. It will one day grow large enough to push the brainstem out of position. This was what happened to the AN on my right hearing nerve. Upon diagnosis, the tumour was already 3cm and considered malignant for a benign tumour. And because the brainstem was not in place, there was lacking of oxygen to my brain and I could barely swallow food. My surgery was classified as emergency. If I did not undergo surgery for another month or two, my brain will be completely deprived of oxygen and I will die of brain damage.

Why can’t I have the surgery done in Malaysia?

If I have a choice, I wouldn’t. The doctors here are not able to remove the tumour completely. My facial nerve will be severed and I will be subjected to radiation. Now, my doctors in US advices AGAINST radiation on patients of NF2 because our tumours are caused by a genetic mutation on chromosome 22. If radiation is done on the AN, not only that it might remain unchanged, it might grow at a faster speed and surrounding tissues will be severed, causing a follow-up surgery to be difficult.

There are many NF2 patients out there who opts for radiation and there are even some successful cases. However, there is no long term evidence that the tumours will not regrow. Should the tumour regrow 10 or 20 years later, a follow-up surgery will be very risky and facial nerve preservation will be a problem, and also, our brains certainly cannot take too much repeat surgeries on the same location.

Stereotactic radiosurgery for type 2 neurofibromatosis acoustic neuromas: patient selection and tumour size.

History

My second surgery, to remove the right acoustic neuroma, was done in General Hospital Kuala Lumpur. The tumour was only partially removed and caused cerebrospinal (CSF) fluid leakage. The nerve controlling the right side of my face is damaged and I vommitted for almost a month due to infection. And I just found out, that some surrounding tissues were also scarred due to that surgery.

Fortunately, I found Dr. Friedman over the internet, who volunteered to remove the tumour for free. In September 2004, the residual tumour was completely removed without CSF leakage and the facial nerve was sparred.

Conclusion

My mention of SRS and the post-operative effects are only supportive points. But my main purpose of writing this post is to highlight the severity of the Acoustic Neuroma. Many people think that the worse thing will happen is deafness, critical imabalance, and facial paralysis. But they do not realise that the acoustic neuroma is right next to the brainstem and will cause death if left untreated. And because its location is among vital brain centres, to reach the tumour and avoid too much blood loss, is one big problem to begin with, especially for inexperienced surgeons.

Sidenotes

Just in case if you’re wondering, I am a registered organ donor with Pusat Sumber Transplan National (National Transplant Library) I’ll have my organ donor card scanned and posted here tomorrow.

Categories: Health

Yvonne Foong

As a child, Yvonne Foong dreamed of growing up to help others. To achieve her ambition, she began studying to become a psychologist. But things changed when tumours were discovered in her body at the age of sixteen. She was diagnosed with neurofibromatosis type 2 -- a genetic illness with no cure. Fighting for survival, Yvonne turned to fundraising and embarked on a medical odyssey to the United States. Her experiences since then have transformed her into a motivational speaker; inspiring hope, faith and strength. Yvonne is currently working to establish a humanitarian foundation that provides NF patients in Malaysia with financial and logistical support. Visit Works of Gratitude to learn more.

14 Comments

moses · September 3, 2005 at 12:25 am

“I will never leave thee Nor forsake thee”

God’s very own thoughts about his people..;)

Kyels · September 3, 2005 at 12:30 am

God will look after you and He can see through what kind of person are you right now.

Have faith in Him and I am crossing my fingers and soon things will be alright. Seek and you shall find for when you have a will there will always be a way. πŸ™‚

And you have to be tough girl which I know you are!

*hugs and hugs from me*

Yvonne · September 3, 2005 at 12:31 am

Moses Yes, I remember that line. Thanks for reminding me. It’s also repeatly mentioned in “Heaven Is So Real’.

Kyels Thanks for believing in me, and yes, God is Almighty. ditto

Victor · September 3, 2005 at 1:36 am

May god bless thee soul.. *hugs* =3

dreamer idiot · September 3, 2005 at 1:40 am

You show your magnamity and maturiy when you not only didn;t retaliate in anger against empire23, but address his rude insults and ‘grievances’, I think we (and hopefully he too) can all see what a wonderful person you are. ‘Bows’

Yvonne · September 3, 2005 at 9:07 am

dreamer idiot I wouldn’t say that I’m not affected at all by empire23’s opinion. But I’m blessed with wonderful friends and well-wishers who cares and aren’t afraid to stand up for me, Honestly, without you guys, I would be hurt much deeper and I certainly don’t have the energy to defend myself. Things could have been a lot more worse.

Kyels · September 3, 2005 at 2:26 pm

Girl,

We will always be here. Giving you all the support that you need, alright?

Cheer up. *hugs*

Reta · September 3, 2005 at 5:33 pm

hey woman, where do I get the banner? Will have it put up in my blog k.

another thing, you got email? Need to discuss with ya something though it might not be a good time to do so.

cyberred81@gmail.com

deepsy · September 20, 2005 at 10:06 pm

Yvonne, i believe at this point of time everyone is praying for you , and im not sure about the others, but ill do everything i can to ensure u see a perfect tomorrow

alice URGENT! · December 12, 2005 at 2:36 pm

my cousin sister who is just 12 years old, found that she have a brain tumor in her back brain. she suffer from headache for one year. her mom thought that it is because of her study stress. she always shook her head and her mom thought that it was her habit. so one day, her grandmother touch her head and felt something soft on her hairscalp, i mean head. after one week, the soft thing is still there. one day, her younger brother get flu, then they were planning to go for a holiday trip to australia, so her mother quickly bring her brother to visit a doctor about his flu. then her mom ask the doctor about the soft thing on her head. then, the doctor suggest her to have a x ray. after her x ray, they found out she have a brain tumor in her back brain which is somewhere above the neck and near the spinal cord. the tumor’s diameter is 5cm. her parents and family members all are so worry bout her. now, we dont know what is that in the tumor, is it water? or cancerous cell? all of us all so worry for her. she is only 12. she is a kind, beautigul and a clever girl. for her parents, money is not a problem to save her life. all they need is the best doctor and some advise and suggestion from the specialist. please. urgent. you may contact 012-5060704 or 05-2916828 or yeeling_90@hotmail.com . my name is alice. thank you. there is a life waiting for you to safe. please. urgent.

Barbara · January 3, 2006 at 9:27 am

My son Adam has NF2, as well. He is 21 and has had his left AN/VS removed, leaving him deaf in that ear. His right AN/VS is growing and he’s struggling with having that one removed, as well, as it will leave him deaf. He may be a candidate for the cochlear implant — but how will he do with it? NF2ers don’t do as well. But he feels his facial nerve is now becoming compromised.

This horrible disease creates more and more challenges. We know Dr. Friedman and the House Ear Institute group – they are special! Good luck to you.

I agree with the radiation quandry. It seems good in the short term, but presents possibly the same end result, i.e., deafness, and more difficulty removing later on.

We’re working with a group now working on a treatment for NF2. Hopefully it comes in time for all you young people who deserve so much more.

Barbara

Nieza · March 7, 2007 at 1:04 pm

Hi Yvonne,

I’m a acoustic neuroma patient and had a 5 post surgeries in UMMC,KL in 2003. My tumour was huge at that time as it already compressed my brainstem. However my tumor was not completely removed and after i read your info on the side effect of radiation theraphy, I feel uncomfortable and I think it’s better for me to search for other medication ( just in case). It’s good of u to share with us about AN and its medication and I hope that we could keep in touch!

All the best to u and I really hope that our tumor didn’t grow again! Pray to God alwiz!

-Nieza-
Bandar Sri Damansara,KL

debbie · August 1, 2012 at 12:34 am

dear Yvonne i live in the UK, but so far have not been reffered to an neuro surgeon . My AN is only 4mm, but i have had to self educate myself about the condition on the web. I had read about bilateral tumours in NF2 patients< and couldnt understand how they tell the difference between the sporadic tumour and the NF2 tumour< but your post has made it much more clear< and i wanted to thank you for that debbie

5xmom » Help Yvonne · September 8, 2005 at 1:39 am

[…] I believe most of us have heard of Yvonne and her plight. She is young and stricken with neurofibromatosis which are tumours in her nerves. […]

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