I'm a 31 year old female and I have been diagnosed with a 2cm acoustic neuroma last week. My symptoms currently are that I am completely deaf (well low tone deafness, I practically can't hear a thing) in my right ear intermittent tinnitus.Cant say if I suffer from proper Vertigo yet, I feel dizzy from time to time. So the ENT suggested to have surgery as I am young and healthy and basically just get it out and done with. My question is how much support did you have while recovery straight after surgery (after hospital discharge) at home, as I live alone here and my family is in Austria. A friend of mine is willing to stay with me for the first few days after hospital discharge if necessary. And I have already taken some steps in preparing my home (chair in the shower, etc...)
Also how long after the surgery was it a no go to travel (either plane or train) as I want to spend some time at home with my family in Austria afterwards as I think it'll hep with my recovery.
I will meet the surgeon this friday to discuss everything and I have written down all sorts of questions, but I thought it might be helpful to hear from people who have gone through that whole thing already.
Any tips or any help would be appreciated.
Thank you!
Simone
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simone1988
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I had 3cm AN removed June 2019 . Recovery was far better than I imagined although don't feel like I could have flown or gone on a train within the first 3months. I did feel my self get better and stronger each day and did all my balance and physio exercise. It's worth filling your freezer with lots of pre cooked dinnersThey didn't remove all my tumour just left a small remnant on facial nerve. I do still get dry eye so have to use eye gel every day other than that my life is fairly normal. Although I have started getting tooth ache similar to what I had before surgery so am now waiting for the consultants opinion as to why this has just started.
Hello colejoe1, can I please ask where did you get your surgery done? And was there any facial paralysis after? Or any other symptoms such as dizziness or imbalance? How is your eye? Can u manage to open and close it as normal? So sorry for all the questions. I have only just been diagnosed and I really am considering requesting surgery but I am so afraid of the lasting effects it may have
Toothache was my main symptom. Kept going to dentist had root canal then tooth out and pain was getting worse that's how they found my tumour. I did have a bit of dizziness but nothing I went to dr with.
They left a small bit of tumour on facial nerve to try prevent facial palsy. I did have some facial weakness for first 3months and my eye still doesn't cry so need eye drops daily. My eye sight wasn't good after surgery although it has now improved but still hurts in bright light. I was also dizzy and wobbly for a good couple of months afterand lost a lot of hearing in my left ear although It doesn't really effect me. Its good to walk everyday even if it's in the house. Then go for short walks outside. I also did yoga at home to regain balance.
I know the thoughts of surgery is terrifying but can honestly say it wasn't as bad as expected. I had mine done at LGI
They we're brilliant.
They have said the pain I'm getting now could just be scar tissue and maybe cold weather isn't helping. My mouth used to really hurt in cold weather before I had surgery.
after my AN removal I had no facial paralysis except for my left eye lid not properly closing when I blinked. This, together with a dryness in the eye (tear duck damage in surgery) caused discomfort and I saw an eye specialist; had to use a gel and eye drops for a while but no permanent damage. I still don't cry from my left eye e.g. when peeling onions. you must NOT use a surgeon who will go in and cut your trigeminal nerve.
all the best. Promise you, I am absolutely fine; one sided deafness is something you get used to
The toothache IS a really interesting point...I've had this and just got the dentist to pull the offending tooth out but is this / was this related to my AN??
Hi I think a lot of your answers will be how you are at the time I was alone but had assistance do for a couple of weeks post op. Do a little more each day, help yourself and be kind too yourself. I do. It know of anyone who has had restrictions on flying, only driving. Definitely no scuba diving that was impressed onto me due to underwater disorientation. Good luck
Have you considered Gammaknife as opposed to surgery ? I would definitely recommend you getting a second opinion from a AN specialist before going for surgery. Research the Internet and you will find stacks of info regarding the 3 main options for dealing with ANs, being watch and wait, gammaknife or Cyberknife, and surgery. Good luck.
I had my tumor out almost 6 months ago. May 2022.My tumor was on the small side but I had many symptoms. Started with not being able to drive at night, then deafness started on right side, ENT said it was a familia deafness, I started to have dizziness a few days here and there but I then started to have more dizziness than non dizzy days. I had been diagnosed with vertigo until I was so dizzy I couldn't do daily tasks. That started around March 2020. A CT scan didn't show anything so an MRI was ordered.
When Covid was started it did impact getting an appointment for surgery and a couple other reasons, like my Dr at the time left for a new practice do i had to find a new Dr.
I had the surgery and maybe because I'm 56, I took a little longer in my recovery.
I had some facial paralysis that is mostly back. I didn't have dry eye. I had my hearing removed because I became deaf on that side. There arev3 different approaches to tumor removal like trying to save hearing.
I have a bit of tumor on my facial nerve.
I've had 2 MRIs since surgery. One in the hospital and a 3 month checkup MRI.
I lost my taste and it hasn't come back.
I have tinnitus (ringing in ear) and a pinging sound like a submarine. Pinging is getting better though. If I am over active my head on that side feels really "full". I had that feeling before the surgery.
My face still tingles from surgery.
I needed help the first 3 weeks...food preparation, driving, help upstairs, things like that.
I chose to drive a little later than most.
Vestibular therapy before and after surgery gave me confidence. I am still dizzy at almost 6 months recovery and just had a set back from being too active and not resting enough. After about a week I feel better. I felt a heaviness as well in my brain and on my body. I wasn't listening to needing to slow down and rest.
There are so many varying stories with this surgery. I googled and watched stories on You Tube until I found someone with similar situations. They will all be a little different of each other.
Some had no dizziness but facial paralysis... Others had a short time/amount of dizziness... Some deaf some not.
Listen to your body.
I cannot drive at night or walk around without a flashlight.
Hi, I had Radio Surgery at Christie’s Manchester March 22. My AN was 20x10. mm. Everything went to plan, I am deaf in my right ear, my left ear is perfect, my other symptoms are balance and fatigue. I would ask the question about Radio Surgery I am about to but a hearing aid . Good luck. Mike
Hi Mike, great news that everything went to plan. I hope everything continues to improve for you.I presume, if l get a positive mri, that l will be treated at Christies. Still waiting results from Jan.
Could l ask, was the radiosurgery just the one session or a number of sessions over time. Thanks
Hi, It was just 1 session, 30 mins, they make a mask that fits very snug, it I very straight forward. I now have an annual scan to check to make sure it does not grow. My main symptom is balance problems, and fatigue. I now have balance exercises that I do each day, these exercises are helping. Good luck. Mike
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