Accustic Neuroma. 2nd time surgery - Acoustic Neuroma ...

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Accustic Neuroma. 2nd time surgery

asimabbasi22 profile image
11 Replies

Need good opinion.

I have diagnosed AN in 2014 later on my surgery was successful and tumour removed not fully but part of small tumor kept alive on facial nerve followed by Gamma knife.

Again some period of time I went to the doctor for follow up same condition came in shape of size gaining .

Again my surgery done on October 2017 and now again followed by Gamma knife.

Need help

What will be the best treatment to get rid out of this.

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asimabbasi22 profile image
asimabbasi22
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11 Replies
Kristyll profile image
Kristyll

You need to weigh up the options with your sets of Doctors, in my opinion

asimabbasi22 profile image
asimabbasi22 in reply to Kristyll

Doctor recommended gamma knife now .

mumumelon profile image
mumumelon

Do you still have the tumor? How large?

I had surgery, which left part of the AN.

Then regrowth, followed by gamma knife.

Tumor is still in brain: 1.3 cm. But currently inactive.

If mine grows again, I believe I will opt for surgery. I worry about absorbing too much cobalt.

asimabbasi22 profile image
asimabbasi22 in reply to mumumelon

Yeh still I have tumor followed by GammaKnife.

Yeah size is almost 1.3 cm

Planning to go UK for GammaKnife

asimabbasi22 profile image
asimabbasi22

I can't do surgery again due to tumor is on sensitive part Facial nerve

mumumelon profile image
mumumelon in reply to asimabbasi22

I get it. Darn these AN's. They are not malignant and yet they can cause so much pain and trouble. And concern.

Keep me posted on the GammaKnife experience. I am happy to know it can be done a second time.

asimabbasi22 profile image
asimabbasi22

Sure.

Remember me in your prayers.

nido profile image
nido in reply to asimabbasi22

Hello Asim. I also had 1×2mm growth 5 years after GK for a 20mm×26 mm AN . It's now 21×28mm. I'm extremely upset about it. Dreading surgery and risking facial nerve.

Some neurosurgeons say it's not significant while other have said it's definite growth and GK failure.

I

drdeanbellavia profile image
drdeanbellavia

Gamma-Knife Surgery (GKS) shrinks the AN, but is still there, although dead. The purpose of the GKS is to kill the proliferating schwann cell's DNA so it can't grow any more. It seems that your Gamma Knife surgery did not kill all of your proliferating schwann cells, or else the AN would be dead. The University of Pittsburgh Medical Center (UPMC) has pioneered Gamma Knife surgeries and has performed many thousands of them. In 2001, I was going to have my GKS done at UPMC (when the UPMC had done about 800 GKS), but chose to have it done in the Buffalo NY Roswell Park Cancer Institute (who had only done about 80 GKS); I live in Buffalo, NY. Luckily it was done right and the AN (VS) shrunk 32% and is totally dead. You might want to check out the success rates and patient comments about where to get your next/final GKS.

asimabbasi22 profile image
asimabbasi22

My appointment will be at London heathcare hospital specialized with gammaKnife Dr Ian sabel is lead Doctor.

anan88 profile image
anan88

Hi Asim,

Your consultant seems to be an extremely highly qualified and experienced GK neurosurgeon, so I think you can be confident are getting the best advice possible for the treatment of your AN. I only had GK once after my surgery for a 3cm AN could not remove the tumour as it was too involved with the nerves, like yours. My GK was in 2011 3 months after surgery. My tumour swelled up a bit after GK, which often happens, then has reduced to a few mms now several years later, and in my last MRI scan in 2017, the consultant said it was now inert.

I think you are doing everything you can to treat the AN and you have to trust what Ian Sabel says. I find now that meditation and mindfulness help a lot with the anxiety, and the tinnitus etc. that follow many ANs. I certainly feel a lot better now than I did a few years ago. Also, I am now confident that I will not let my AN grow again! (Maybe you would say "Insha'alah"?)

It is difficult not to think about it constantly now, but eventually you will feel less anxious, and will get on with life, and will trust that the surgeons and doctors have done their job well.

There are so many of us who've had these and life feels normal now. Good luck with your appointment in the UK, and enjoy London on your visit.

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