Hi all, my mum is having translabyrinthine surgery next week

[Love4Life]

Hi Everyone,

My mum is having translabyrinthine surgery approach to remove her acoustic neuroma next week. She’s turning 50 this year and her neuroma size is about 3cm. She’s been very stressed out and anxious about this surgery because there seem to be a lot of complications associated with the surgery. I’ve been trying to be positive and encouraging but of course the idea of her undergoing the surgery still scares me.

Could anyone let me know what to expect post surgery immediately and after some time? Thank you for taking your time to reply in advance. I really appreciate it.

Also I’m glad I’ve found this community today. After reading all of your stories, I feel truely inspired. Thank you for sharing all your experience and stories. They’ve really kept everyone who’s been going through acoustic neuroma hopeful.

Thank you,

Jackie

[Wayne4211]

Hi there Jackie

I can't tell you everything is going to be okay. You and your mum have a big challenge in front of you and I wish you all the best. Translab surgery is not an easy and simple procedure. While I went through hell it isn't always as bad for everyone. Expect your mum to not be very well after the surgery, it can take days, weeks or months to be okay depending on the post surgery complications. While I was very sick, it does not happen to everyone.

Expect her to have possible face paralysis, definitely balance issues and possibly a lot of pain and discomfort. That all depends on how the facial nerve is effected by the tumor and the possibility that the tumor has effected the nerve.

If she does have facial paralysis, I would strongly recommend that she seek treatment with specialist speech pathologist and plastic surgery for nerve transfer surgery as soon as possible after.

It can take a long time to recover, I'm still not 100% nearly 2 years later but i'm a lot better than I was or thought i'd be.

Feel free to contact me directly and get a look at my profile for more info.

Yours

Wayne

[Love4Life in reply to Wayne4211]

Hi Wayne,

Thank you so much for your reply. It really helped me in preparing what to expect. I’ve read up your story and it’s truely amazing. I’m glad to hear that you’re doing better than you thought you’d be. I hope the best for you.

Much appreciated,

Jackie

[colbe]

Hi Love4Life. It is impossible for anyone to know how your mother will be after the surgery. I had mine in August last year and my life has just carried on as normal since then.

Here is my positive story (I am 65 years old). I had the surgery 9 months ago. I woke up after 12 hours in theatre feeling perfectly fine. I had 25 minutes in Intensive Care and then moved to the ward as there was nothing wrong with me. The next day I was a little dizzy, but was helped to get up and start walking. The more I walked, the better I felt. Early on day 3, the pressure bandage was taken off, and I was told that I could go home. I went back to work as a part-time teacher three weeks later.

After the surgery I had a small amount of facial paralysis for about a month. This is all gone now. Food tastes different still (sweet things taste bitter) and I am not sure whether I will ever get this back to normal - but it does not stop my enjoyment of life.

I have adapted easily to hearing with one ear. I use a small in-ear hearing aid when I am teaching. I haven't bothered exploring using a CROS hearing aid as I do not feel that I need it. My family and colleagues have got used to standing or sitting on my good side to talk to me.

I started vestibular balance exercises before the surgery and continued afterwards until my brain had adapted (check on youtube for how to do these). Once again this happened very quickly. Occassionally I will feel dizzy - in bright sunlight, in darkness, if I shut my eyes - but I have never fallen over. Riding my bike is still a little scary though!!

Take care of your mother and yourself. I hope that everything goes well

[Love4Life in reply to colbe]

Hi Colbe,

Thanks for your reply. I’m glad to hear that you’re doing very well.

Thank you for your wishes. I really appreciate it.

Jackie

[Ellafen]

Hi, my husband had his 15 hour surgery on 9th Feb. He is back to work full time and at the gym every night. Probably pushing himself to the limit but that's him. It wasn't a good time after he was distraught and in pain can't lie. However he recovered remarkably was amazing to watch. It's easy to say don't worry however no one would know Jason had a tumour apart from his scar. Mum will be ok tell her to take it easy but keep positive there is a light at the end. Be strong God knows it's hard I prayed in every church prayer room I came across.

Lisa

[Love4Life in reply to Ellafen]

Thank you so much Lisa. It really means a lot to us. I wish your husband is doing well and continues to do so!