large neuroma needs surgery 😬

[Ayanne]

Hi All

Due to mistakes and covid by the time I saw consultant my tumour was 29x25x23.5 so surgery is only option.. obviously I’m pretty scared.Scheduled for 17april if they can get team together.im nearly deaf in my left ear with tinnitus and bit wobbly on my feet .

My main concern is recovery,my daughter is due her 1st baby after years of trying and I want to be there for her (june3rd).she doesn’t know my condition (she’s very anxious person and miscarried before this.

Will I be well enough in 5/6 weeks?

Thanks for reading

[Lorosco62]

Hi Ayanne, l sympathise with you and your daughters situation. I felt very ill at times during covid. My daughter was pregnant and having a real bad time with morning sickness. So l kept things to myself.The only thing l can say is that she will be well into her 3rd trimester when you go for surgery. Minimising the chances of miscarriage and she may feel more positive.

With surgery, we all react differently to recovery. Its always difficult to put a timeline on it. However, you seem to have a good compassionate relationship with your daughter and l'm sure she will want to be there for you. Your new grandchild will be pure joy and aid in you getting back on your feet. I wish you a successful op and a speedy and healthy recovery.

Lozx

[Ayanne in reply to Lorosco62]

thank you Loz x

[MimiJay]

Hi Ayanne, I had surgery 11 weeks ago so understand your concerns and fears. I too had to keep my condition from a family member so I know this only adds to an already stressful situation.

My AN was 25mm and compressing the brain stem so surgery was my only option. I was in theatre for 13 and a half hours and in hospital for 8 days. As Lorosco62 says, people recover at different rates. I’ve still got issues with my balance and although I go out walking every day I don’t feel confident enough to go out alone yet. Fatigue is a big issue so you will have to pace yourself and only do what you feel able to do. I find that if I exert myself one day I need to rest for the next couple of days to get my strength back. My balance therapist said that post-surgery, people need to remember that when they come up against the wall they can’t push through it, they just have to stop.

I hope this helps. Good luck with your surgery and I wish you a speedy recovery. Once the op is over you won’t have long to wait to meet your new grandchild which will be something wonderful to look forward to. Look after yourself xx

[Ayanne in reply to MimiJay]

thank you mimiJay, wow that’s a long op 😬mine is close to brain stem too ,so no real alternative except surgery.I’ve been told because it’s so close they will be leaving some in situ and will be monitored after.

I hope you are recovering well,sending you best wishes x

[KawasakiZ650]

Sorry to hear you have to have surgery, what type will it be, do you know? I'm still in diagnosis stage. Had my MRI today do sorry no advice to give but just wanted to leave a comment with well wishes. Hope all goes well and wishing you a speedy recovery for the post surgery.

Congratulations on the imminent arrival of your grandchild too 🥰

[Ayanne in reply to KawasakiZ650]

Hi Kawasaki,I have no idea what type of surgery sorry,but radiation isn’t an option I was told,will know more soon I’m awaiting my pre op assessment in next week or 2.

Thanks for your kind words I hope yours is an easier ride

[Pinkrose1]

Hi Ayanne, I was in bed for a very long time with mine and it was slow recovery in many months but I know some have been much quicker. Hopefully yours will be too but to begin with you will find you get exhausted quickly and so need to take things easy and get your rest when you need it as pushing yourself puts recovery back. Hope everything goes well for you and your daughter, its very exciting to be having a new arrival! X

[Ayanne in reply to Pinkrose1]

thank you for that information pinkrose,scary but good too know,.Its very easy to get frustrated with lack of perceived progress.I’ll certainly take it on board x

[whitefishbay]

Sorry to hear about your troubles. I think recovery really depends on the person. Fingers crossed for a swift surgery and recovery. A new baby is the best thing ever!

[Ayanne in reply to whitefishbay]

thank you for your kind wishes,yes the babba should help recovery!

[whitefishbay in reply to Ayanne]

Even if you just sit in a chair and hold the baby - never have enough arms as a new mum.

[Ayanne in reply to whitefishbay]

thank you,that’s a very valid thought x

[Skipton]

Have you heard of British Acustic Neuroma Association. I would recommend joining. They are very helpful. Good luck Mike

[Ayanne in reply to Skipton]

hi Mike,yes I have,I will look into it,thank you for your reply.

Good luck with yours