Acoustic Neuroma

Ears, nose and throat
1

Mine is a very positive story.

I had tinnitus for a year in my left ear. My doctor said there was nothing to be done and I just learned to live with it. No big deal.

Then on 25th August 2007, I woke up and couldn't hear anything out of my left ear. I had just moved to Dubai and thought it might be the flight.

An ENT specialist did some hearing tests and explained it was nothing to do with the flights as it was an inner ear problem and put me on steroids. They didn't make any difference so I had a gas therapy- I think it's called carbogen - a mixture of oxygen and carbon dioxide. I had this for twelve hours - half an hour on, half an hour off.

The next day I woke up and could hear a bit. I was delighted as had resigned myself to no hearing! I then went to the doctor for a repeat hearing test. He said it was good, but he wanted to send me for an MRI scan just in case.

I went and when it was nearly finished they injected a dye in. Slightly concerned but thought nothing of it really as knew some of my hearing had come back. I didn't really think much more about it until the doctor's secretary rang to ask that I come in for the results a few days later.

Anyway, he told me there was a tumour, 3.2cm by 2.2cm that was usually benign and I had an appointment to see a neuro-surgeon in two days time. It was a big shock, obviously, but I felt like it would be OK and trusted that it was usually benign.

The neuro surgeon told me it was an acoustic neuroma and that it was too big for gamma knife. He explained the surgery to me and assured me that he was 99.9% certain it wasn't cancerous. He said it was a fairly big but routine operation but that I would need lots of time to recuperate. I told him I was going to come home to UK and he recommended a surgeon at the Wellington hospital to me.

I met with the surgeon who was brilliant. Very calm and kind and told me the risks - 50% chance of facial paralysis, 100% no hearing and what the operation would entail. My tumour was just a bit too big for gamma knife and this surgery had only been carried out for twenty years. This meant any side effects after that time weren't known and as I was only 29, surgery was the way to go. He thought he may have to leave a few mm in because of it's position but that would be OK. He explained it brilliantly and my paretns and I felt calm about the whole thing.

On Monday 15th October 2007 I had the surgery. I think it lasted about eight hours as he was able to remove the whole thing. Another surgeon carried out the first part of the operation and the surgeon I'd been recommended did the removal. Both are brilliant and I felt completely at ease and trusted them implicitly.

I only vaguely remember coming round about ten hours later. The surgeon said something (I'm sure he said a lot but I can't really remember!) Then my parents came in and I smiled. Perfect smile with no facial paralysis at all. What a massive relief.

I remember a bit of the night I spent in ICU and a bit of the next two days in my room. I have never experienced thirst like it!! I had morphine drips and IV and spinal drain (to catch any brain leaks!) Was fairly out of it though.

Had a pretty bad night on Tuesday with extra pain injections. My head felt like, well, a bashed in cannon ball really, but once the spinal drain came out things started getting better. I didn't think I would ever feel better as I really did feel rubbish. The surgeon said once the drain was out it would get better and he was right! Wednesday I got out of bed (threw up a bit but felt better after, and was only sick once more through the whole thing), Thursday I walked down the corridor with physio. Was a bit wobbly but OK.

Once the catheter was out the walking got easier and by Saturday I was eating, watching TV and walking upstairs. I was taking oral pain medication every four hours and to be honest, I was ready for them, but it was not blinding pain. I had the odd anti-sickness injection or pain injection in between but Saturday was the last injection. Sunday I had a blinding headache again but by the afternoon I felt much better and went outside (my dad wheelchaired me round a park! I could walk, but was just easily tired.)

It wasn't the best week of my life but I got better every day and went home the following Monday, just one week later, and was told to take just paracetamol for the pain (I had been having paracetamol and tramadol). I couldn't believe it! A nurse took the stitches out and because my head was still numb it wasn't painful in the least. Just a tiny bit weird really. The scar is all along my hair line behind my ear. They shaved a little bit of my hair in the area but the rest of my hair falls over it and even when I tie my hair back, you can't see it. It's incredible really. (Everyone I've shown it to says how neat and small it is.)

At home, I was easily tired and my neck hurt from the position I lay in, my thigh needed penicillin as the scar got infected (they removed some fat from my thigh to put behind the ear where the bone had been! Yuk!)but other than that, my headaches were like the normal ones you sometimes get for no real reason and I could talk on the phone a little bit more each day and my freinds waited until I was ready for visitors. That was after about five days of being home and it was only a few more before I could manage whole days of visits and trips out for lunch!

Two weeks later was my 30th birthday and I had a fairly sedate tea party! But the following weekend I was out clubbing (fairly sober as promised myself I would not self induce a headache like the ones I had the first few days of hospital), and felt great the next day.

It is now five weeks since the operation and I haven't taken paracetamol for about ten days. I've gotten used to being deaf (bonus is that I get great night's sleep) and my tinnitus is still here. My thigh is numb where the scar is and I can't cry in my left eye (new party trick), but there's drops to help and I'm swimming, jogging, going to yoga, dinners out, drinking a bit of wine and generally thinking life is ace. It really wasn't that bad for me and I feel really lucky. Back to Dubai to carry on with my break dancing lessons in a week or two!

(Sorry but Patient Admin have removed a Doctor, Consultant and or Hospital name from this posting, as it is the policy of Patient UK not to publish these on this forum.)

2

Good to hear your positive story..I am also effected by the problem thoguh the size is 2.5 x 2.8. I am looking for good doctors. I hope you share the details on my hotmail email address i.e. username is ****

Thanks

(Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)

3

Interesting that Acoustic Neuroma is supposedly rare? I have heard of quite a few people have had this problem!

My operation at Queens Square, London was done on the 28th of September 2013 after many problems starting in January. The NHS registrar insisted for 2 months it was Labyrinthitis. Then at last a scan CT not MRI because of metal implants. The scan was clear so they say! 6 weeks later I went privately to be

told there was a growth the size of a golf ball pushing well into the brain (left ear). So he sent me straight to Harley Street., and was told I needed an operation to remove an Epidermoid ( later this was changedto an Acoustic Neuroma).

Great guys did a caring operation with the result all nerves were left intact save the hearing which was already really bad in the left rear. Taste buds were awful fora few weeks then back to normal.

It is now December 14th. and the side effects which are with me are - very tired with mid afternoon sleep for 30 minutes or so, slight vertigo, but the strangest on is my writing - it is terrible, I start ok and after a few words the writing becomes small and illegible - my left side of my brain is not working with my hand?

It appears that there is a delay from brain to hand? is this normal?

I am very lucky considering some of the effect some people have and although I had to pay most of it myself I had lost confidence with the NHS and went private.

Interesting to note that over the last few years I have had symptoms which had I realised would have indicated all was not well with my brain i.e very poor hearing in left ear.

Any ideas?

4

Hi Colin..

Good to hear that all went well for yourself and wish you a speedy recovery.

I got my surgery done is Salford by some very good doctors, due to the size they had to remove my hearing nerve since the tumor was on top of it. Though I had only 5% hearing left by that time.

I got my surgery done in Nov 2010 and it took me almost a year to fully recover, since I had balance issue, dryness, numbness, headaches, focus issues. But after surgery your brain needs time to cope up with and get back into normal life style. So its still early days for you and it will slowly go away. I made sure not to use any steroids so my brain starts to work normally without any such pills. Only used to take paracetamol for severe pains.

Take Care

5

Hello, I had a 5 cm AN and was operated on Oct 30th 2013 in Salford Royal, Manchester, they said the nerve was intact when they had completed the surgery, although my hearing in my left ear has been destroyed and blocked off. Since then I have had facial palsy on the left side, this has resulted in a lower eye surgery in Feb 2014, and more to come so I can clsoe my eyelid fully. Am I expecting too much soon for any sign of movement in my face? its been nearly 5 months and theres little sign of movement. My balance can be wobbly when walking far, and in shops etc I can a little disorientated, is this normal? Finally, the tiredness, I do stuff I would consider normal duties and feel washed out and have naps in the afternoon, I am worriesd about my eventual return to work and how thisd will affect me. Can anyone please give me some advice, guidance??I is getting me down and I do feel my confidence is going...

6

What an interesting set of posts there and with different outcomes..I had Gamma Knife surgery in September 20 14.I was, ,and still am, tired after but mostly I feel depressed and withdrawn.My hearing in the affected ear is no worse and my balance is fine although I do have pains in my head at times.My problems are minimal really and I do feel cheered by that.I am told, probably correctly, that I am grieving for the loss of my hearing and that could be why I am sad. Life goes on and it does get easier for me.I think recovery must be much more difficult after open surgery so carry on being brave and positive,I am sure that you will win in the end.I hope the dancing goes well !!

7

I am facing into the very same situation on 13th April 2015, having been recently diagnosed. I'm a 54 year old male, and have been treated for what was believed to have been on-going ear infections since April 2014. I have suffered 90% hearing loss during this time and hadn't heard of AN until my diagnosis. A long and difficult road awaits me, but hoping that the result at the end will be good. Have accepted the inevitable hearing loss at this stage. However, I am anxious over facial paralysis which is an increased risk. Thank you for sharing your story. It has greatly helped me to prepare for my treatment regeime. Would be interested in finding out how you are today, some years on post-surgery? Kind regards. Mike!

8

You enquired how am I 5/6 months on from Gamma Knife surgery.It hasn't been an easy time.In December I was feeling well,back to but sadly succumbed to the winter flu bug (not much fun)By the end of January I was well and had begun training my dog for Obedience competition.It requires accurate foot work and turns etc.  With help from the Steward regarding the volume of her commands (I am somewhat deaf) we did very well in our first competition.I was elated but the very next day the world spun away from me.I had vertigo and just had to rest in bed,any slight head movement and the world started spinning again.I have been treated with Cyclizine which does help. The pains in my head have escalated and I can't focus my eyes or concentrate very well. My GP says he does't think it has anything to do with the Gamma Knife. Strange that as it is a rare but known side effect  5/6 months post treatment .Thankfully I see my Consultant next week and will be seeking reassurance. I do understand that labrythitis can last for long  periods of time and recur.Iwill report back after I have seen my consultant.Fingers crossed I will be better soon

9

Audrey, thank you so much for your feedback. I am anxious regarding life changing inevitabilities that will undoubtedly arise post treatment. Your comments are really helpful. I am generally a realist at heart, and always prefer to know the facts as they are, warts and all so to speak, as in that way I can deal with what may come my way. I know that nothing in this life can be taken for granted, so being forewarned of any possible changes is so important towards preparing oneself for the future life, with all the curveballs that it may throw. Best of luck with your next Consultant's visit. I hope you have a successful outcome in terms of having the various questions clarified. Regards for now. Mike.

10

Hello again Mike,I think my previous mail was reflecting my mood,it isn't very pleasant to be so dizzy etc.Gamma Knife surgery has excellent results and I don't regret having accepted it as the best course of treatment for me.

Perhaps I should add that I am almost 80 years old and consider myself  fortunate to have had the treatment and not been cast aside as too old.This was possible , my consultant told me that it was my general fitness and active life that made the decision for me.

Looking sensibly,the winter bug I might have had anyway and the labrynthitis could still turn out to be oif  viral origin.

You see I am more cheerful this evening and realise that I will be better very soon .The best results come from a positive state of mind.

Keep active and I am certain everything will go well for you.

I still feel somewhat isolated by my deafness but I make it clear to people ( with a smile ) that I am "deaf not daft" and have found them understanding and helpful.

Take care and don't worry, I am sure that all will go well..Audrey

 

11

Hello

I am wondering if anybody had pain before they were diagnosed with AN ? Either ear or headaches? I have had constant ringing in my right ear for a good while now especially at night when I turn over it wakes me up and really hurts, then just over a week ago I woke with what feels like no hearing at all in my right ear , it feels full or like it needs to pop , for the passed 10 days I have either had severe ear ache or headaches. I've lost taste , I can taste things but nothing tastes right or smells right. I'm slightly dizzy on occasions but not too bad and slightly confused. I've been treated for 5 days for shingles although I never had a rash and now my doctors have said it's menieres so I'm being treated my more tablets for that. I also have numbness on my right side of my face. I had a CT scan 7 weeks ago as I had severe numbness on my right side and that was clear. Getting me down now. Any suggestions?

12

Kelly, you symptoms point to possible AN. I had the same, and was being treated for continuous ear infections for a full year before I finally sought a second opinion. An MRI scan is 99.9% accurate in detecting AN, so I suggest that you look for one to either rule it in or out. CT scans are not as accurate, so you may actually have one and it was not picked up on your scan. Don't leave it to chance. I did, to my regret, and having suffered profound deafness in my left ear am now facing into a treatment programme on 13th Arpil to have the growing tumour removed. I know the risks involved, and am saddened by the fact that it could have been so avoided if I had acted sooner and sought that 2nd opinion in April 2024 instead. Regards, Mike

13

Thank you for your reply. I have a telephone consultation with my GP tomorrow and I think I'm going to have to be a bit tougher!! I wish you well with your treatment

Kelly

14

Hi, how are you now. Saw this on forum. I am 74 yrs old and have 1 cm. Acoustic neuroma. On a wait and watch at the moment, and surgeon has already said gamma knife is not an option for me. After years of ear problems, since childhood, I was always a bit deaf in left ear. Last November 17th this went completely, saw gp who said airily "it will come back". It hasn't.

After being messed around with nhs appointments I finally got mri scan, was then called back for mri with contrast

Was then phoned to go to hospital while on holiday,so returned next day.

To my surprise I was told I had a acoustic neuroma BUT not inmy left ear,but on right side.since my hearing was already poor this made sense as I had dizzy spells, the beginning of last year.

So with my right ear hearing deteriorating and only 5% in my left ear I am facing a world of silence, either with or without treatment.

I have also found a large growth behind my right ear, it's boney and on occipital bone, painful now too. Awaiting ultrasound on that.

My general health is crap, type 2 diabetes, heart problems, cataracts,, arthritis..

I have tried to be positive about what will happen, and hope eventually I could have cochlear implant.

My question is how long did you wait for decision and were all the pro's and con's explained.

I already struggle with 2 hearing aids and do feel like wearing a 'deaf not daft' badge, such is the size of affliction.

I hope I haven't bored the pants off you, your input would be appreciated, cheers Del.

15

So please Kelly what happened next

16

Life is never easy it seems.It is almost a year since I had Gamma Knife surgery for AN (Left).I explained earlier that I had rotary vertigo 6 months later.Six months on from that I am still disorientated in open spaces and I have minor balance issues.That is, I still can't walk straight reliably and definately not in circles.I still have pain in the mastoid area and the side of my head is very tender.My vision in the left eye has deteriorated ,that is unusual as it has always been my best eye.I find  deafness is the most distressing and sometimes prefer to be without my hearing aids to feel I am not hearing jumbled sounds.I  am somewhat depressed  but I am not always certain which part of my situation depresses me most.On reflection deafness is hard.As Delpine you say 'Deaf not Daf't', Well,that is my tale of woe.Is there light at the end of the tunnel? I am not sure because I will never know how I would have been without the GK. I am, after all ,80 years old,very grateful that I was able to have the GK ,thanks to the NHS.On the bright side,I live alone,take care of my animals,drive my car, take part in my usual hobbies.Probably I do much more than the average person of my age.

Like you I had ;watch and wait' for a couple of years until the neuroma had grown sufficiently to require intervention.Once referred my wait was very short and I had the choice of two hospitals that used the tecqnique I required.The worst part of the treatment was fixing the halo,that said everything was painless.

I researched on line and my consultants  were verp good at explaining the pros and cons.I am aware that my age could have been a deterrent,thankfully in my case it wasn't.

Well Delphine,I feel that I haven't been very helpful as you can't have GK but it may help you to realise that even with treatment it is difficult to find a fairytale ending.

Meanwhile I remain determined to enjoy what ever is left of my life.

My love to you,chin up.Write again if you feel down, Audrey

17

Thank you for replying , I think I must be having a bit of a down day. I approve of your opinion that there is no fairy tale ending.it's realistic and honest.one of my biggest grumbles is that friends and family don't really want to discuss it with me. You would swear I had syphilis or something. I have blurry eyes ! Is that cataract or tumour,got to get them done to find out........and so.it goes on. Thanks for offer of 'listening ear' will probably take you up on it.

I live in Wales. You?

Cheers del

18

Dear Delphine,Thank you for your prompt reply.I am in Lincolnshire in a lovely but busy village.Like you I don't think people ever want to hear how you really are feeling .The problem is in your head and can't be see,. it is difficult to understand if haven't enjoyed the same  problem.if only in part.

It is natural that as we grow older we have other health problems too,mine is hypertension and is proving very difficult to control.

Keep smiling,sleep well and keep in touch ,Audrey

PS There is always something to be thankful for.My thanks go to you for listening to me as I am listening to you. x

19

Thank you for posting. I also have had an extremely positive experience. I was diagnosed in November 2011 with an acoustic neuroma That was 36mm X 30 mm x 26mm. I elected to go with gamma knife treatment as it appeared to be the easiest way to deal with it. (It was not) Although the procedure didn't hurt worse than a bad sunburn. The worst thing about that was getting the frame installed on my head...it was sort of traumatic.

I suffered all the way to April 2015. The symptoms I had seemed to go in cycles and I could never figure out what caused them. I always had a headache, I did previous to gamma knife as well. I had poor balance, frequent nausea, vertigo, difficulties concentrating...those were the symptoms I had and they constantly cycled and showed up.

January 2015 during my scan, we discovered the tumor had begin growing again and we made the choice to have it removed. I had a skull base surgery, called Sigmoid Approach, on April 8,2015.

This was truly one of, if not the greatest, experience of my life. The surgery lasted nearly 10 hours and there was difficulties from the previous gamma knife. Lots of scar tissue and plus the location of tumor put it dangerously close to brain stem and jugular vein.

The surgery was on a Wednesday and because of the steroids I remained awake until Friday night. Upon waking the very first thing I noticed was that my headache was gone. Prior to this surgery, dating back to early 2010, I had a headache all day every day, ranging from 3 to 8 on pain scale.

I will say the nurses in ICU didn't like me too much because I was awake and had needs. Mostly water for my extremely dry mouth.

I took the morphine that first night and on the 2nd morning. At dinner and bed time I took oxycodone.

The next day I woke up and I still did not have the headache I had become accustomed to. I only took tylenol for the pain and it was sufficient. In fact that morning dose of tylenol was the last pain medicine I took for this surgery. I only mention all that because I am a recovering addict. I just celebrated 6 years clean.

I was released from the hospital on April 13th (5 days total, 3 of them was in ICU). I was in zero pain, in fact that same day as we got home we went to look at a house.

I returned to work after 6 weeks and we bought a house in July and renovated it and moved in on August 1.

I have never been so scared as i was going into that surgery. Fears of using pain medicine, that my face would be paralyzed, or that something more serious could occur...like a stroke or something. I just knew my life was going to be different, mostly projected bad stuff. I believe that is why I'm so grateful. My life did change, but for the better.

So, to get with why I'm even posting, it has been 6 months since the surgery and I am just now experiencing painful sensations. I realize it's probably just nerve cells healing, but for whatever reason, I am getting acute ear pain, and it hurts to lay down on that side. In fact it is hurting so much I can't sleep. Would like to get some experience, strength, and hope.

Thank you

20

Curious how your surgery turned out?