Help Request Update

[Easebak]

Hi all,

Hoping all's going well...

This is a a follow-up to a previous post which many of you were kind enough to reply to - now we're 6 months down the line from the initial diagnosis...

My friend was diagnosed with AN last year and just had a second MRI to see if it was growing - apparently it isn't, but he's been suffering from increasing headaches and balance problems and tinnitus and more hearing loss, but as the AN isn't growing the physician said they won't be offering any treatment now beyond another MRI in a year.

He's finding his deteriorating condition both stressful and depressing, especially now that the treatment he'd hoped might potentially end any further deterioration isn't being offered.

I was wondering if any of you might be so kind as to offer any help and advice as to how best to move forward - I've suggested he join BANA and review the forums and attend support groups...

All and any help and advice would be very much appreciated...

Thank you...

[dcfcram]

Hi, to be honest if the AN isn't growing I think personally it's best to watch and wait . Sometimes it's best to trust the specialist, tinnitus and headaches can be made worse due to worry and sress, good luck for the future

[Easebak in reply to dcfcram]

Thanks for the feedback - Important to remain positive...

[Jerrycat13]

I would stay on watch and wait like i am. I get headaches and tinnitus bad. But gk can make it worse. Why put ur body through horrible treatment if ur tumor is stable like mine. How big is it mines 20mm. See wot its like on ur nx mri.

[Easebak in reply to Jerrycat13]

Thanks, much appreciate the reply and advice... It's just 10mm, but awkwardly placed, all wrapped up with nerves, hard to see which is which on the MRI, even the physician was struggling...

[andon in reply to Jerrycat13]

I had GK 18 months ago and apart from a couple of weeks of extreme fatigue, about 12 weeks afterwards, I have been fine. Good luck.

[Easebak in reply to andon]

Great to hear the good news! Many thanks...!

[bypass]

At that size most Docs would advise Watch and Wait. However, two points (1) If he is really concerned he should seek a second opinion, ideally from a radio surgeon if the first was from a micro surgeon, or a micro surgeon if the first was from a radio surgeon. (2) Seek some more investigation to make sure that the worsening symptoms really are from the AN - we tend to forget that we can still suffer all sorts of other issues which might cause AN like symptoms on top of our AN issues.

[Easebak in reply to bypass]

Really good advice, thank you... He did indeed already ask for a second opinion but was told that option wasn’t open to him - We can but try again using the criteria you’ve suggested. Thanks again...

[Jogmymemory]

I am sorry your friend is suffering these symptoms. I had translab surgery to remove my AN and the experience was a bear. Thankfully I don’t have tinnitus, but I did get facial paralysis. I lost my smile and the ability (?) to cry on the right side, not to mention 100% deaf on right. So I now I find myself wishing I had watched and waited instead. After reading this forum I realize should have advice on GK. AN is rough. I’m sorry you’re both going through this. He’s lucky to have your support.

[Easebak in reply to Jogmymemory]

Many thanks for your reply and for sharing your experience - yes, it's very much like being stuck between a rock and a hard place... So sorry to hear what you've been through, and hoping things have become more manageable and improve over time... With very best wishes...

[Silversmith2000]

Hello, I was diagnosed 2 months ago following MRI after deafness in one ear.

I have a large AN but luckily very few symptoms, balance is a bit bad and somewhat deaf with a strange metallic sound when it gets loud, and my face and tongue feel a bit odd.

I will have to have a operation to get rid of it due to its size (3cm) and I am currently getting a 2nd opinion just to see if there is another medical institute who thinks they can save my hearing as my current one says they can’t.

Anyway, what I wanted to say is that my boyfriend had surgery on his back and was very worried and he got himself some guided meditation for healing and so I’ve been listening to them already to get myself in the right frame of mind and they are brilliant, so relaxing and helpful (and potentially healing if we believe the brain can help heal).

My boyfriend also had tinnitus (since 5 years) and tells me that worrying really makes his worse and he has to NOT focus on it to bring it back to a manageable level, he has to give it a place in his life!

I know it is easier to say rather than do, but for us it helps/ed to feel easier in ones own skin.

Best wishes to your friend x

Abi

[Easebak in reply to Silversmith2000]

Thanks Abi, really appreciate your reply. Yes, whatever the situation it's the mindset that plays a big part in determining quality of life... Would be great to know how you're getting the second opinion - when my friend asked he was told this wasn't an option... Hoping you get a positive result regarding the hearing - that's exactly the same as my friend, what he's wanting - it's down to 10 - 20% in one ear and he wants to keep it! Really appreciate the meditation recommendation Abi, I'll pass it on - Thank you...

[Silversmith2000 in reply to Easebak]

I actually live the The Netherlands and my health insurance covers the 2nd opinion, so it probably differs to the UK, sorry I should have said that already!

I too have really wanted to save my acoustic nerve so that even with reduced hearing I could still use a hearing aid but my specialists have explained very well why it is so hard to do that with my AN due to size and position so I have pretty much resigned myself to loosing hearing in that ear, if a 2nd opinion finds a medical institute with better statistics of saving the facial nerve then I will go there. In the meantime I feel I have fully informed myself of what is happening to me and realistically i think it is not so bad in the great scheme of things, that is how I feel and that doesn’t mean other people feel that same, I do understand how worrying this is.

Basically, thankfully, an AN is benign.

If you want the the names of the guided healing meditations let me know.

[Easebak in reply to Silversmith2000]

Many thanks for the clarification Abi, and hoping the second opinion gives an optimum solution; fingers crossed... Yes, details of the guided medication would be great, so he has it as an option for when the time is right... With many thanks...

[Silversmith2000 in reply to Easebak]

Hi, the two we have are by Jane Pernotto Erhman and Belleruth Naparstek, I should imagine there are plenty more that you can google that will be dedicated to just being less stressed, and I would definitely recommend doing them now, so helpful and relaxing in general 😀

Good luck!

[Easebak in reply to Silversmith2000]

Much appreciated Abi - Thank you!

[Drex74]

My AN was 4cm when discovered, I’ve had 2 eight hour operations in 9 months and now it’s 20cm. The consultants are now monitoring it before they decide on gk or a third op. My understanding is that gk has a 95% success rate but will fail eventually so depending on the age of your friend they will put it off as long as possible to avoid the need of an operation further down the line... I may be wrong but this is how I’ve had it explained to me, good luck with everything

[Easebak in reply to Drex74]

Thanks so much for giving insight as to your experience - really aporeciated. And hoping everything progresses positively for you... Thank you