Acoustic neuroma

[Maybaby61]

Have been diagnosed with a large acoustic neuroma 5cm. Operation to remove it will be done 20th December so going to be a very quiet Christmas this year. I am nervous but it has to go

[flappers]

Hello, definitely a case of better out than in, and you’ll be in very safe hands I’m sure. If you need support contact Braintrust charity, they offer brilliant one to one coaching support and contact with others who have had ANs and surgery etc. I found their groups and one to one really helpful when deciding on treatment ( I had a choice of radiation treatment or surgery as mine was smaller) but you can ask questions to others who had surgery about handy tips. Take straws, lip balm, extra long charging cables for phone/ devices, pjs that don’t go over the head, eye mask and ear plug for good ear ( Hospital are loud and bright when trying to sleep) and most of all, be extra kind and nurturing to yourself and take it all one day at a time. It’s a big op but miraculous how we heal and recover if we are gentle with ourselves . The up side is no cooking on Christmas Day! 💐

[Maybaby61 in reply to flappers]

Thank you I will follow your advice

[Whiteone76 in reply to flappers]

hi flappers

Could I ask what option you chose and how you found it please?

[flappers in reply to Whiteone76]

brainstrust.org.uk/acoustic...

Hello, see the link above, I chose radiotherapy in the end. I’m 7 months on and about to fly to Thailand today for a 4 week trip! It’s not all easy at the time, felt like I was wading through custard for a few months, but the treatment itself was EASY. I’m happy I chose that, way way easier than I thought it would be. What size is you AN and what are you being advised on? 🎉

[Whiteone76 in reply to flappers]

thanks for replying so quick, really appreciate it.

I have my appointment tomorrow morning to see the neurosurgeon following my contrast mri last week.

I was told 2.4cm at my last appointment but that was a private appointment following my initial mri results, as I was told they so snowed under it would be ten months to see someone!! I am a nurse and knew it couldn’t be right but was told by three others the same.

Anyway this wonderful consultant put me at ease and said they had been discussing me at skull based surgery meetings and it would never had been that long. Which meant I was finally able to get some decent sleep.

I’m also awaiting audiology and a balance assessment?

I’ve kind of figured tomorrow I will have three options, watch and wait, radiotherapy or surgery.

My current preference is radiotherapy but will obviously know more tomorrow.

Thanks for taking the time to reply and go blinking enjoy Thailand!! I hope you have a blast

[MimiJay]

Good luck with your op Maybaby61 - I have my op this Thursday at Addenbrooke’s. I am very nervous too but after waiting 6 months for the op I am also relieved to be getting it over with.

Thank you for the advice flappers - how long were you in hospital for?

[Maybaby61 in reply to MimiJay]

Good luck MimiJay hope all goes well for you. You should be well on the mend by Christmas xx

[Cathyhux]

good luck 🍀 let us know how you get on x

[Maybaby61 in reply to Cathyhux]

Thank you I will x

[Fairy-Princess]

Hi Maybaby61

I have my op around this time last year. It certainly was a very quiet Christmas. I was grateful I was able to come home a week later so at least I was home for the big day although I slept through most of it 😂. Wishing you well on the day, You will wake up from the op with such a sense of relief that it’s over and your focus will shift to getting well. Recovery is slow and steady and be prepared for set backs along the way but keep looking at the bigger picture and you’ll be fine. xx

[Maybaby61 in reply to Fairy-Princess]

Thank you xx

[Alison_L]

Good luck, Maybaby61 (from a Julybaby61!). I’m having radiotherapy on my 1.5cm AN in Jan/Feb ‘23 xx

[Maybaby61 in reply to Alison_L]

I hope all goes well for you xx

[whitefishbay]

Best of luck. Great advice from Flappers. x

[Maybaby61 in reply to whitefishbay]

ThNk you x

[Pinkrose1]

All the best for your surgery, you must be feeling very rough with the size of your tumour. Mine was only 3cm and i found it very difficult to function in the end as it was pressing on the brainstem and causing all sorts of problems. As said you will feel such a relief to have it out! The hospital were amazing, the surgeons brilliant and you will be in safe hands. Make sure you have lots of care set up to help you in your recovery, you will need lots of rest and don't rush your recovery as it does take time. Take care x

[Maybaby61 in reply to Pinkrose1]

Thank you

[zeekay]

Hi Maybaby61 wishing you all the best with the surgery. I hope it goes well and then look after yourself during recovery. Starts and stops along the way but hope you find your own best way to manage the journey. Take care💛💜🤍

[Maybaby61 in reply to zeekay]

Thank you x

[Ukulele21]

I sure everything will be straightforward. Best wishes to xx

[Maybaby61 in reply to Ukulele21]

Thank you xx

[Gardener21]

Hello, sorry to hear you’ve got to have this op.. I had 12 hour surgery at Kings London in April 2021 which was 2 days after my 61st birthday.. my neuroma was 21mm do small to medium in size but it was pressing on my brain stem so like you, I had to have it out. Don’t underestimate the severity of the surgery, it is intense, intrusive and recovery may be erratic. As I had never had a general anaesthetic before, my reaction to that was an unknown. In the event, I was very sick for 4 days afterwards and the pain in my head was indescribable. It hurt to breathe. However, our wonderful NHS nurses were amazing, supportive, encouraging, empathetic, helpful and caring despite being rushed off their feet for their entire shift. Take it slowly, don’t refuse pain killers, it’s there to aid your recovery. Sleep as much as you can & don’t try to push yourself too fast. I had surgery on the Friday & 8 days later I sat in the car chatting to my sister all the way home. It’s incredible how our body heals & is so resilient. I do have side effects, I am totally deaf in my right ear, which I knew would happen, but hearing was severely compromised anyway. I feel slightly unsteady all the time, I was already experiencing this but it is worse if I’m tired or anxious. A strange one you, my eyes & nose runs when I chew food. I’ve been told this is just how the nerves have repaired themselves. I hope all goes well with your surgery, you are in very good hands. Our NHS is amazing & I cannot praise it enough. Good luck! XxBxx

[Maybaby61 in reply to Gardener21]

Thank you xx

[Lois_Howell in reply to Maybaby61]

Hope you're doing well after your op, though its very early days for you. It's now almost 18 years since I had my AN diagnosis. My GP was useless, he wanted me to take anti depressants which I refused. Had i not had private health cover I would have had to pay for my own referral. the neurologist I saw was dismissive and told me had a trapped nerve. It wasn't until i totally lost hearing in my left ear that a brilliant ENT consultant diagnosed correctly. I had surgery a month later. It was a tough time, abdominal pain was worse than when i had a hysterectomy (fat was taken from my abdomen to fill the hole where my ear drum was removed), my taste buds were shot (wine tasted like vinegar but i worked on that!) my eye lid was 'lazy' and I had a dry eye so I had to see an opthalmologist and use eye gel. I still dont cry from my left eye or produce mucus from my left nostril but, bizarrely, both will water at random when I eat certain foods. The whole of the leftside of my faceis numb but tingles. However, it's amazing what you get used to. I had anMRI a year ago because I was afraid that my facial sensations were worsening and that the AN was regrowing. Thankfully my fears were unfounded. I'm in my early seventies, still working (by choice) I'm a doting grandma and the negative effects of my AN surgery don't impinge on the quality of my life in the least.

Be strong, be determined. Don't be a victim, this is not going to kill you. You are a warrior!

[Maybaby61 in reply to Lois_Howell]

Thank you so much for your words of encouragement. Unfortunately, my operation has been delayed as I tested positive for covid 3 days before my operation was due. I had no symptoms and would never have known if I hadn't had to test for the hospital. I now have to wait 7 weeks before my operation can go ahead. I am waiting for a new date to arrive. At least I got to spend Christmas at home x

[Lois_Howell in reply to Maybaby61]

try not to worry, it's not like a cancer, the delay may result in a tiny bit of growth but it's not like a cancer spreading to a critical organ or lymph nodes.

i wish you well, dont be ' down' in the week after the op, do what you can and keep telling yourself there's light at the end. let me know how you go and if you need any encouragement after the op I'm here x

[Maybaby61 in reply to Lois_Howell]

Thank you that is so nice to know. To be honest it still feels like it is happening to someone else I feel well and am still working. I call myself a tough old bird and will do my best to continue being one x

[Lois_Howell]

Great attitude!

[Maybaby61 in reply to Lois_Howell]

Thank you. X

[Loolaballe]

hey, can I ask how long you waited for the surgery once you’d decided to do it?

I hope everything is ok with you now x

[Maybaby61 in reply to Loolaballe]

Well it's a long story but was told that surgery was the only option because of the size of AN and had a surgery date in about 6 weeks from beginning of November to 20th December. I had to do covid tests for 3 days previous to operation and was totally amazed to be covid positive on the 17th December as I had no symptoms. The hospital will not operate for 7 weeks after covid so I am now waiting for a new date possibly around middle of February