Hi, im 46. Last year went to the doctors with vertigo, quite bad, vomiting, dizzy unbalanced. Omg Never had it before. Was told i had an inner ear infection and was given head movement exercises to do. 6 months later, noticed i was loosing my hearing in my left ear along with tinitus. Sometimes feel a little bit unbalanced when walking, not to serious. Almost felt like i lost my hearing over night. Went to doctors again, ear drops, nose drops, followed by referral to ent and then hearing test and mri. I knew there was a problem. Did lots of research. Have now been told i have a small 12 mm intracanalicular AN. Im hoping that 1 to 2 mm and not 12 mm. So now im waiting for a second mri with dye contrast. Doctor did say that a second mri might not be required, so now just waiting. The thoughts of surgery terrifies me.
Just been diagnosed with AN - Acoustic Neuroma ...
Just been diagnosed with AN
In November 2021 I had gamma knife surgery (basically radiotherapy) at sheffield hallam University hospital for an 11mm AN/VS, this is classed as very small. I had same symptoms as yourself. I am now 6 months down the line, and have now completely lost hearing in right ear and am awaiting CROS hearing aids. I also have tinnitus and the dizziness/unsteadiness appears to be worse. However they do say it can take up to 18 months to get benefit from treatment.
Pls do not let this treatment terrify you, the surgery I had was nothing to worry about. As this AN/VS was classed as very small it could be treated with gamma rays.
However I am awaiting another MRI to see if the treatment has worked. My dizziness does not seem to be improving, in fact it seems worse.
Pls do not worry about gamma knife if that is what you end up having.
Hope everything goes well on your journey. xx
Thanks for your reply. Do you mind if i ask you how old you are, and when you first noticed any symptoms? You said you had surgery in nov 2021. Did the doctors give you any indication of how long the AN has been growing. As its very small but apparently they are slow growing. The doctor has also mentioned the cros aid to me but at the moment im managing without.
I am 65, I have been having bad headaches since June 2018, so was getting regular MRI's but nothing found.
I did have a hearing test Feb 2019 which proved to be good. March 2020 started suffering with intermittent hearing loss/tinnitus and vertigo.
However in September 2020 an incidental find of AN/VS was discovered, apparently there was thickening on the nerves at last MRI which was 0.2mm, which I was not informed about.
On this latest scan from Sept 2020 it was found to be 0.7mm. Apparently the headaches had nothing to do with it, I still get them now and have tried all sorts of medication.
My AN/VS was growing approx 2mm a year.
They say they grow slow approx 1cm in 10 years.
As my symptoms were gradually getting worse, I insisted they do something, hence gamma knife, I supposed I was convinced it would cure the headache too, but it hasn't.
Can I ask where you are from?
Take care x
Im from watford, hertfordshire. Looking back now i think my first symptom was vertigo back in june 2021 and then in the december/ jan 2022 i noticed the hearing loss and tinitus. I think im quite lucky its been spotted reasonably early.
Yes you are lucky. The gamma knife surgery just kills the tumour, it does not remove it. I suspect once it's dead it will wither away. Bigger tumours can't be treated with gamma knife I belive open surgery may be required. It can take up to 18 months to improve with gamma. I just hope the surgery in my case has worked. X
Hi, Just wondering if there was a specific reason to undergo gamma knife with such a small AN? Mine is considerably larger and yet it seems my MDT at the hospital do much to avoid this intervention unless absolutely necessary..there seems to be a lot of variation in treatments. We all hope we are getting the right advice. Hope you continue with a good recovery. All the best.
Hi fernbrook, I think it depends what symptoms you get and how badly it affects you.AN/VS usually only grow 1cm every ten years and rarely give anyone bad symptoms
I was told they would not do open surgery because it was more life threatening than the AN/VS itself, but I was very symptomatic, and still am even after treatment. I am waiting for an MRI see if the treatment has worked.
You do not say how bad your symptoms are
Take care x
So sorry to hear about your diagnosis. I was terrified when i first knew too but I overly worried as the treatment/surgery wasn't as bad as i had imagined. I think they will offer you gamma knife for a 12mm which is less invasive. Hope everything goes well for you
Thanks for your reply. Hope your recovery is going well, sounds like you've had a bad time of it. I am slightly worried about gamma knife, but i know its possibly the only option. I wouldn't want the AN to grow any larger. Also been reading a lot of posts on here regarding complications to the facial nerves which is quite scary. Im only 46.
Also Cwk123, if you do get gamma knife it is very precise.
Try not to worry as that will get you no where . When your given balance exercises make sure you do them everyday .
On good days Try and carry on with life as much as possible. On. Bad ones try and rest up as much as poss .
I’m about to find out op date very soon .
Nov 2021 was measuring 11mm x13mm
April 2022 mri contrast scan has shown even more growth .
Good luck and hope your not kept waiting around too long . 🌸🌸👍
Thanks for your reply
Hi sorry to hear but often there is an option for radio surgery find out all your options before deciding. We are all here to tell the tale and I expected surgery to be worse than it actually was good luck
Hi, I am 71, I was diagnosed with a AN, 3 years ago, it had grown to 20x10mm. In March this year I had radio surgery at Christie’s Salford Royal. 3 months after the treatment my balance is improving, my hearing in my right ear is still poor, and the tinitus is still quiet bad. But each month I am feeling better. Fatigue is an issue, I have a nap in the afternoon when I feel really tired. I am very greatful for the NHS. Don’t worry, there are treatments available to help. Good luck.
I was the same as you for a year really dizzy had to walk with a stick.but i think your body adjusts to it.only dizzy sometimes now more when im tired.very deaf in right ear.
Hi, I was diagnosed with a 9mm intracanicular acoustic neuroma in February 2017. I have been on watch and wait for 5 years with yearly mri scans. There has been no growth in the first 4 years of monitoring and I am currently waiting for the results of an mri scan I had in May. I have tinnitus and some hearing loss. Hope this helps. Damian
Thanks for your reply, thats quite reassuring. Hope your next mri results are positive
In December 2021 a general hearing test picked up minor asymmetry in my hearing between left and right ear. Fast forward to April 2022 and following an MRI I have received AN/VS diagnosis. Mine measures 11mm x 6 mm and protruding 3 mm into the cerebellum so similar in size to yours. However I was advised a wait and scan approach and check again in 6 months time to see whether there was any growth. I am wondering whether the different advice is to do with the fact that I have only mild symptoms (slightly unsteady when walking and some hearing loss in right ear).
The medical advice is reasonable since the size of the tumor is comparatively small. It's better to wait and watch.
Thanks for the reply. Im waiting for a possible 2nd mri, and just waiting to see what is recommended. Maybe similar to you and watch and wait
I think you have had some really helpful comments. Please don’t be afraid of the treatment. Mine is 11mm diagnosed earlier this month grown from 3mm in 2017.I’m private under the National Hospital for Neurology and Neurosurgery. The consultant has reassured me that there may be side effects of treatment but these can often be minor and treatable with short term steroids.
I’ve got just over 6 days before treatment and I’m becoming more apprehensive but know, I have no choice. I’m self employed so it’s either treatment and keep the business or none and lose the business, as it’s growing.
You ask about a second MRI.
Procedurally, so I understand, if the tumour is not growing there will be no stereotactic radiosurgery. MRIs are undertaken usually at 6 monthly intervals, to determine whether there is growth. A team then assess whether to proceed, if there is growth.
I was fortunate, if that’s the right word, in having an MRI in 2017 for something else - that’s when, in reviewing that previous MRI they spotted the 3mm tumour. Growth was proven and treatment is next week.
Bless you, it's a scary time. I was diagnosed in 2019, AN didn't behave and went from 14mm to 21mm. I had Gamma Knife, the thought was much worse than the actual thing. Keep up with exercises. Walking is really helpful even if you need to use a stick initially. You can re-train your brain to cope and an audiologist can try and help hearing although hearing aids not much use but help a little. Check out BANA Britush AN Assoc they have great tips and support. You're not alone and will be ok, it's just a time of adjustment. Hang in there. Here if you need a chat. Sending love xxx
Thanks for your reply. At the moment my balance is good only sometimes when im walking i veer off to the right. Im actually a waitress, so i think walking with a stick is not really a option. I just hope all goes well. Ive lost most of my hearing in my left ear, and at the moment managing without a hearing aid. Im 47 in july and have a 13 year old son, work full time and i honestly dont feel prepared for any of this.
I can totally understand your feelings. I was 39 when diagnosed and 43 when I had surgery to remove my tumour. I was petrified of the surgery and possible complications associated with it. I was a full time secondary teacher with 2 school age children at the time. I took 3 months off work and then returned to full time teaching after that. I am 62 now and retired from teaching at 60 but still work full time as a lab technician. I was able to continue with my life fully. I have been skiing and on activity weekends with school children. Your body adapts amazingly to the balance and hearing issues. I wish you all the luck in your AN journey.
Thanks for your reply. Did you have surgery because the AN was large, was there an option to have radiotherapy ?
Hi. Just wanted to say do try not to panic. I would recommend you join BANA ( British Acoustic Neuroma association) and there’s a brilliant support group via Facebook… I was diagnosed in 2020 with a 12mm AN, have tinnitus and lost a fair bit of hearing but no other symptoms ( other than veering a bit!) Mine did grow to 2.5 ( many many don’t grow after discovery) so have just had radiotherapy at Guys, three sessions. It was totally fine, I’m going to post a video of the machine used. You will not have to have surgery, way way more likely will be put on watch and wait, as it could never grow, with radiotherapy ( either Gamma which is one dose, or fractionated cyberknife which can be given in a few) could be an option if it does need treatment. The most important thing is to find ways to nurture yourself and find out about about your own body and what is happening to be able to manage the symptoms. You will find it gets much easier when you can feel you understand what it is and how you can easily live alongside your little guest.
Hi, so far so good! I had three sessions 16th,17th and 20th June Linac, Guys hospital version of cyber knife I believe. I feel completely fine still… no side effects yet… but they can kick in later, due to swelling. Today I swam in the sea, drank Prosecco, and generally had a perfect day. I would not know I’d had 3 fairly large doses.
That’s very scary mine is only 4 mm but the noise has been crazy no words if I get infection it gets so bad hope you get on ok
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