Newbie 🙂

[Dave--S]

Hi all I'm new to this group and in the coming months I will need some guidance please. Just been diagnosed with a 2.4cm squatter that I don't want Sorry for the questions that in sure will come.

[Kristyll]

So sorry, but ask away. We are all here to tell the tale xx

[Tabbycat]

Hello Dave

No need to apologize, asking questions is the definitely way to go. As you are in the UK, I recommend visiting the BANA (British Acoustic Neuroma Association) website for lots of helpful information and advice. Pre COVID-19 my husband I went to their support group in Leeds - just a couple of times a year - but it was a great to meet up with other AN sufferers and their partners (who also may need support).

Have you got a treatment plan yet? I was put on 'wait and watch' for the first four years, then had Gamma Knife Surgery as my tumour just kept on growing and now I'm back on 'wait and watch'!

Stay safe and well,

Tabby

[Dave--S in reply to Tabbycat]

Hi thanks for the reply.

No I don't have a treatment plan yet, I just had my second MRI on Monday with contrast so now waiting to hear from the specialists.

[bypass]

Hi Dave, rule one "don't panic", rule two, get ALL the information you can from experts in the field. Do NOT let a micro surgeon tell you that you are unsuitable for radio-surgery or vice versa. Get multiple opinions. Get all the information you can from patients about their personal experiences. ASK, ask again and keep asking, do not be fobbed off. If a medical person won't give a straight answer to a sensible question, (for example "How many have you treated"? and "What were the statistical outcomes"?) find another one! You can read about my experiences here - I was treated 22 years ago so some things have changed a little! Good luck, anarchive.org/chris.htm

[Dave--S]

Thanks for the reply and just read your story.

Noticed your job role is very similar to mine, an I intend to treat this like I would any other engineering project one step at a time in a logical order.

[SJa2020]

All the very best. This forum is great as you can get so much info & compare with others symptoms & experiences.

I’m new here too was told in A&E I had AN but later told one can’t diagnose without a scan, & a scan wasn’t even given. Had a CT later that didn’t show any tumours (thankfully) but all symptoms remain so don’t know what it is! In a way knowing what it is , is the 1st step to recovery.

I liked that line from yours your treatment of it this in a logical way. I was training to be an Architect am a qualified Accountant & I deal with things in exactly the same way. But do you find it freaks people out a bit? I like knowing all options & how to deal with it so when I get to it I know the paths!

Reassuring to know there are others like me.

All the v. Best the medical here is great. At times you just have to keep chasing them. All the best.

[Dave--S in reply to SJa2020]

Hi,

Yes I do find it freaks people out but that to me is the best way to deal with any situation and I'm pleased I think like that. For me I'm pleased it has been found and is treatable. At the moment I'm in a good way and continuing work as normal, I know some people are not as lucky as me. First step is done and Im ready for the next in this journey.

[lupie-Cathy in reply to SJa2020]

You should push for a MRI with contrast, AN’s don’t usually show up on CT ! Hopefully it’s not one but better to sure especially if you’re still getting symptoms. Good luck

[Emmasnog in reply to SJa2020]

A CT scan didn’t pick my AN up I had to have an MRI, please push for one xx

[SJa2020]

All the best. I am sure your positive & logical approach will help you get through this. Our prayers are with you (& family)

Now back to chasing my health lot to try & get a definitive cause & then treatment for this. I’m getting tired of hugging the walls & door on my left as I walk! And the intense pressure & pain in my head when it strikes!

[Dave--S in reply to SJa2020]

All the best to you also, I'm sure everything will fine in your journey.

[Kristyll]

StY calm, ask questions and be kind to yourself x

[lupie-Cathy]

All the best in your AN journey, make your choice of treatment based in research and talking to others. BANA ( British Acoustic Neuroma Association) has lots of info on their website along with stories from other people’s journeys

[louise60693]

Hello, I have too, exactly the same measurements. Just waiting to hear from ENT now however, it is a long waiting list because of COVID. The advisor was reassuring, and said to inform the GP of changes. I hope this helps, good luck!

[Dave--S in reply to louise60693]

Thanks, so far so good. I feel lucky as I'm not seeing the side affects at the moment but I'm sure they will come. Just waiting to hear from the specialists now and see what they have to say.

Hope everything is ok on your journey.

[louise60693]

Thank you it's so good to know we are not alone eh! The Brian online chat is brilliant too, good luck!