Acoustic neuroma symptoms

[Sully63]

I have been deaf in my left ear for two years and had mild to severe headaches for 9 months .i was diagnosed at the end of February after a contrast mri showed a 30mm x25mm tumour.we then went into lock down and all contact with kings stopped until a few weeks ago when I had a telephone consult and was told surgerys would start again in August. I have just received a letter saying that a new telephone consult has been arranged for September 9

My symptoms have progressed to the point my headaches are now non stop the tinnitus is getting worse and my balance is poor

I now have had a very stiff neck to go with the headaches and my limbs feel very heavy and I have problems as I feel tired all the time as the headaches keep waking me up at night

Has anyone else had these symptoms or are they unrelated

[Glioma2025]

I have had a brain stem tumor since mid-2017. Due to its location it is not operable, they have only given me treatments.

The most important thing is that you have a doctor that you trust, to follow his instructions.

you must be strong and do your best. the rest time will tell

[Kristyll]

Some symptoms are similar but we all differ greatly. Looking back I realised most of my symptoms were stress related. Stay calm and be kind to yourself xx

[bypass]

Those are typical AN Symptoms although some less experienced Docs may deny that! You can read my story as a similar example if you wish! cs.umb.edu/~dqg/newone/chri...

[Bullpenn]

We have exactly the same story. I was diagnosed in feb and then we went into lock down and had no further doctor appointments and I am also under kings.

You never know we could be in at the same time. I have been told the op is most likely in December.

My appointment in sept is actually in kings and not a telephone appointment with the consultant.

Give the nurse a ring that called a couple of weeks ago I found her so helpful and really nice.

They all sound like normal symptoms I have all the same.

I think kristyll has hit the nail on the head with them being stress related my symptom are defiantly worse when stressed and sleep deprived.

[Tabbycat]

Hello Sully 63

I had a right side acoustic neuroma diagnosed in 2014 and was on wait and watch for 4 years with annual MRI scans. Each year the tumour grew, so I had Gamma Knife Surgery in 2018. I have had one MRI scan since which showed my tumour has stopped growing and am waiting for the results of the last scan in June 2020.

Everyone with an AN can have different symptoms. I started with deafness and a feeling of fullness in the right ear, but nothing else. As time went on I developed tinnitus, vertigo, nausea, dizziness and fatigue (some days absolutely overwhelming with the heavy limbs you describe). Sometimes it's like a vicious circle - you can't sleep at night ( in my case because of the nausea which got much worse at night when I layed down, as well as anxiety), so you feel tired and stressed the next day etc.

However, I have recently been diagnosed with GORD - gastro-oesophageal reflux disease - and now that I've been treated for that the nausea has disappeared and I am sleeping much better, so feeling less tired during the day. I had asked my neuro-surgeon about the nausea and he said it was a common sympton of ANs.

Hope you find a solution soon,

Tabby

[Teashop]

Glad to hear they are moving along with operation l still have no communication with the Walton centre and feel quite abandoned.hoping to hear soon or will phone again.wishing you all the best.l haven't had much headache tinnitus,balance and numbness are my main symptoms.

[Beryl81t]

Hi Sully93, I was given my diagnosis Nov 19 on the phone and with Xmas in the middle was seen for the first time mid Jan 20. No action taken yet (queens Sq neurology). Couple of diff appts but appear to have gone back a step. Including lost paperwork & change of consultant. Basically same symptoms although tinnitus more than deafness, have been told twice the nighttime headaches have nothing to do with it , but they are what give me the biggest problem. That and the dizzy days. Have to say I’m not convinced. Jan appt advised they want to measure growth b4 any next step. so growth scan now booked for 28th August with bizarrely enough a face to face appt on 9th Sept. I spoke to my consultants secretary and she was very helpful in that she told me to chase for appts otherwise I wouldn’t get them.

Hope we both get some sort of news in the 9th!

[DesertLady2]

Hi Sully, my story is similar,..diagnosed in October with AN in left ear....hearing loss for several years now with very bad tinnitus. After MRI showing left ear NA....went to surgeon who wants to wait and see...as tumor is only less than 1 cm but I have very severe headaches every night...Pressure during the day but when I lay down the headache starts...all night, every night - no matter which side I lay on....pain killers work an hour or two tops....which I don't like to take anyway due to side effects. I have very bad balance and fell a couple of times injuring myself. I can't imagine going on like this indefinitely if the tumor doesn't grow and still stays small enough not to do anything further. Am hung over the next day and very sleepy besides I can't hear anything! I am opting for radiation since I know they won't do surgery due to the small size of my tumor and my age (78) don't know it that is an issue. The recovery from the surgery doesn't look like a walk in the park either.