AN headache pain

[Lolabelly]

I was diagnosed with a 2.2 cm AN in July. I have facial numbness all the time, a bit of hearing loss and some tinnitus, some pressure around my ear. I walk and do yoga each day so my balance is okay. But I find if I do too much in one day I can get a headache on my AN side which feels a bit like a hangover (and I'm not a drinker).

Could this be a result of mental fatigue?

I'm on watch and wait until I have another MRI to see if there's tumour growth. The doctor said the headache was not connected to my AN.

[Ukulele21]

Hello, I had Gamma Knife surgery this year and COVID. My face numbness and hearing loss plus balance problems have increased. Can I ask how long these symptoms will last and when will get back to ‘normal’. I am sorry to ask these questions if you can’t answer them. I have thought about doing an exercise class but I am so tired and just want to sleep.

[Lois_Howell in reply to Ukulele21]

My AN was surgically removed (along with my ear drum) 16 years ago.The numbness and tinnitus will never go away! In fact, over the last couple of months the numb and tingling sensations I’m experiencing have worsened, they extend down my throat and into my eye lid. I’ve contacted my GP to investigate the possibility of re growth. Waiting for a decision this morning on whether she’ll make the referral otherwise I’ll have to find a way of funding an MRI myself.

[Kristyll]

The doctor is possibly right about your headaches. Eventually I realised most of my added symptoms were mainly due to stress and not being in control. Good luck x

[Lolabelly in reply to Kristyll]

This has crossed my mind since having an AN is stressful. Thanks.

[Bob200]

Hi,I also get hangover style headaches that can wake me up, which get worse if I'm very fatigued. Another AN patient I speak to also gets these so I think there is a connection to the tumour.

I recently attended a webinar with theholisticneurosurgeon.com

Who commented that most of her patients with AN have headaches, her website is interesting as she approaches the whole body holistically.

Hope this helps x

[Lolabelly in reply to Bob200]

Thanks for the link - that's interesting. I'm very much in to a more holistic approach to dealing with this condition.

[Happy-Singer]

I have had headaches for 3.5 years and whilst under investigations for headaches they discovered I had a vestibular schwannoma/acoustic neuroma. This was an incidental find. I have had gamma knife surgery last Thursday 11 Nov, I have still got all symptoms, headache, tinnitus, deafness, drunkenness (lol) without the alcohol. But do understand it takes time to feel benefits of gamma knife.Several consultants have told me the schwannoma is small 11mm and would not cause headaches but I hope and pray that the headaches will go x

[Lolabelly in reply to Happy-Singer]

I hope the headaches go away for you, but it may take some time. I haven't had treatment yet and still don't know if my symptoms will be relieved if I do have surgery.

[Happy-Singer in reply to Lolabelly]

If you are keen to have treatment, I would push for it. I couldn't cope with the symptoms I was/am getting, but at least now it can only get better, I hope xWhere are you? I am from North East england

[JDN57 in reply to Happy-Singer]

I've just been diagnosed with a 11mm AN and waiting to have first consultation with ENT consultant. My GP keeps telling me it is small and most probably will be watch and wait but my side effects were sudden and stopped daily life as I knew it. I lost 85% of my hearing overnight and then few days later couldn't walk in a straight line. I paid privately to have a MRI as I was told it was most probably an inner ear infection but I just had a gut feeling something was wrong. There has been a multidisciplinary team meeting about me already even though I haven't been seen by anyone or even had a telephone consultation with anyone - that's booked for 17th January. I'm lucky I work in a GP surgery and one of the doctors specialises in neurology so understands what I am dealing with and has allowed me to work differently. I just want to opportunity to explain to someone what I am dealing with. I know AN's are benign but it has still scared me half to death knowing I have this thing growing in my head. Hope you continue to recover well.

[Happy-Singer in reply to JDN57]

Hello JDN57, my AN was 11mm when I had gamma knife surgery on 11 November 2021. They put me on a watch and wait before it got to this size but I was having symptoms such as hearing loss, tinnitus just like yourself, so they decided on treatment. I am still getting headaches ( which they say has nothing to do with AN) and have a neurology appointment in March. My dizziness appears to be worse as does the tinnitus but I suppose this is side effects from treatment. I am just hoping this will disappear eventually. I feel it is now a waiting game to see if the AN shrinks or disappears,

I have another MRI booked for March too to see what's going on with AN.

I was told it could be an ear infection at the start, but I did not have earache or anything that led me to believe it was an ear infection.

My thoughts are the same as yours, 'better out than in' , good luck and hope you get sorted soon xx

[Lolabelly]

Thanks, I looked in to that. But my surgeon doesn't believe my headache/hangover symptoms are caused by my AN so I have to watch and wait. I'm in Canada, near Toronto.

[alberte]

I know we are all different but I have had a 3 cm AN for a number of years (was treated with Gammaknife two years ago ) and have never had a headache. Lots of other symptoms, but a headache, no.