In the dark

[Caribbeancruiser]

Morning all

I’ve been diagnosed with a NA a day before we came away on a cruise. I have no more information than that until I get home. Seeing as I’ve never even heard of it before I’ve Googled it to try to find out more and came across this site. It only came to light as I went to GP for my ears to be syringed and was sent to hospital as FP doesn’t do it any more. Whilst there they gave me a heating test and one ear was a lot more deaf than the other which was only slightly. I was then sent for an MRI and then called at home the next day to go straight back and have another one with the dye. I was then telephoned the day before we came away saying I have this NA and to see a neurosurgeon when I get back.

Reading on here lots are on the ‘ wait and see’ and some have to have surgery. I’m really worried as I’m in the dark about it all.

Sorry for the long post, I’ll keep you updated when I get back.

[Caribbeancruiser]

Sorry, it should say AN...... not NA !!!!! Shows how stressed I am ! 😂

[drdeanbellavia]

Caribbeancruiser:

What is the size of the AN and where is it located?

If around 15mm you can get Gamma knife surgery, which is fast and relatively painless with little to no recovery time.

The "wait & see" approach is OK unless: 1) the AN is becoming greater than 15mm and 2) is not in the bony vestibule between the ear and brain, which will crush the 8th cranial nerve and blood supply to that ear and why location is important.

Also, if you are not having significant balance problems yet, get rid of the AN before you do; I wish that I knew about my AN before that happened to me.

Dean

[Caribbeancruiser in reply to drdeanbellavia]

Thank you for your reply. I haven’t got a clue where or how big it is yet as I was only told I had a AN the day before we came on a cruise. I have to wait until I get back to get more details.

[redday64 in reply to Caribbeancruiser]

Hi caribbeancruiser

I too was taken by surprise and from reading the posts I think we all go into a slight panic at first. Seems that most are put on watch and wait until the docs think we are ready for action. I really hope that you can put your worries aside for a while and enjoy your holiday , enjoy the sunshine .

Lynne

[Caribbeancruiser in reply to redday64]

Thank you ! Only 5 more days then we’ll be home but have Christmas and NY in between which will delay it even more. I’m getting more worried as time goes by

[Caribbeancruiser]

Just got home from holiday and I have been sent an appointment to see a neurosurgeon at St.Barts hospital on the 10th January. I’m sure I’ll find out more then but still very apprehensive.

[levelslass]

I sought a second opinion after offered surgery as first option. In the end was treated with small daily doses of radiotherapy called FSR at Royal Marsden for tumour 3.8cm. Stable now at 1.9 cm. Side affects some nausea during treatment, enhanced sense of smell like a dog during treatment. But otherwise fine. That was 2005. Now experiencing some double vision and can't drive at night due to lack of spatial awareness on side of tumour. But having Vestibular rehab so onwards and upwards. At least it's not malignant. RM now have Cyberknife machine which limits damage to peripheral tissue. Good luck

[Caribbeancruiser in reply to levelslass]

Thank you levelslass, I appreciate your response. Reading up on it all I’d prefer Cyber Knife to surgery but I’m still in the dark until I see my neurosurgeon. I’m worrying myself silly until I know more. Thank you once again

[Lois_Howell]

my AN was removed surgically in 2005. Getting shot of it was absolutely the right decision. Do you really want to live the rest of your life 'managing it', having gamma rays pelted at you with the consequential side effects?

Find a consultant ophthalmologist who will remove sensitively and preserve the trigeminal nerve. my left ear drum was sacrificed but who cares!

There's too much negativity about AN, 3 months after my op I was totally back to normal and was discharged from Prof Ramsden's care. I am now 69, I used my total left side deafness to gain my professional early retirement from teaching following critical illness and started my own business which continues to thrive. I'll take one side deafness any day over balance, vision probs rendering me unable to drive.

Remember, it's not cancer, you're far more likely to die of something else, keep smiling!