Acoustic neuroma 22x14mm and 5 mm cyst in the cerebellum.

[Joanna010181]

Hi I found my acoustic neuroma year ago I had last MRI scan in June also I got 5mm left side cerebellum cyst.

Doctor said is no change in the size of my AN and advise me to do next MRI scan in 12 months time.

I got strange symptoms on left side of my face where is AN. I m filing lots of cold ,hot or wet symptoms my eye is dry my ear is pain full and some times I filling headache but unfortunately doctor said that all sension are not comming from AN. I m sure they are commoing frm acoustic neoroma. Thats fhat I found on NHS website :

"Facial numbness, tingling or pain –are relatively rare symptoms which can occur if the tumour begins to press on the nerve that controls feeling and sensation in your face (known as the trigeminal nerve)."

Also he said there is no other worrying neurological symptoms.

Every day I got these extremily worry symptoms I don t know what to do please advise what should I do or where Should I go for advise.

Thank you all.

[Waiting]

Ring the Consultant at the hospital where you had your scan they are the experts.

[Lisa56]

Hi,

my acoustic neuroma did cause trigeminal neuralgia, i.e pain from my jaw to my ear, a bit like toothache and earache but shooting pains, it also affected my eye and made the muscles move uncontrollably and it affected my ear too, sometimes pain behind the ear so yes it can cause many symptoms because there are many nerves there. I just kept going back to the doctor until they referred me to the neurologist and then for an MRI . You have had this so maybe they are not too worried, I was referred for surgery. I was told that it only grows very slowly (a mm a year) so sometimes they just monitor it. If your doctor doesn't think it is coming from the acoustic neuroma then where are these sensations coming from? Ask them that? and what you can do about them.

[Joanna010181 in reply to Lisa56]

The doctor advised me to go my GP I visited last week and she wrote a letter to the neurologist specialist asking for advise so I got another appointment on Thursday I will see what she says.

Doctor said that my symptomps are probably suffering from some migraines no from AN -I don not think so.

[bypass]

I don't know why he calls those symptoms rare? I certainly had them before my AN was treated by FSR in 1998 and I remember they were very unpleasant indeed. I have come across many other patients with the same symptoms as well. Just in case it helps you here is my AN story from some years ago - anarchive.org/chris.htm

[Joanna010181 in reply to bypass]

I m very grateful for your replay so what should I do can I show my GP your story please advice me .I m. 34 years old mum I got 2 lovely kids and I m extremely skarred all symptoms increasing that's no my imagination as doctor said I think to much

[bypass in reply to Joanna010181]

I shall be in trouble if I say the Doctors don't always know what they are talking about so I won't. But rest assured, your symptoms and mine are quite typical of Acoustic Neuroma patients. I've been in contact with well over a thousand of them over the past 18 years so I'm confident I am correct! For most people, modern radio surgical treatments for ANs cause very few if any long lasting problems. However, with many of them you do have to accept long term single sided deafness and probably tinnitus I'm afraid. If I was in your position and being treated in the UK I would be asking for a Cyber Knife Consultation and asking teh Cyber Knife consultant for a fractionated treatment which is what the machine was designed to do. This approach demonstrably reduces the chances of side effects. Good luck and best wishes.

[Kkk7 in reply to Joanna010181]

Hello I know it's a old post I am also mother of two kids...always scared feeling different sensation in lips tongue and sometime brain MRI is due soon Dr said it wnt grow back soon..AN removed in 2015 after that I had baby also..does pregnancy effect AN.

From last one two mth disturbed always thinking of AN hope it wnt grow. Also started having migraine after operation hope for the best

[bypass]

And by all means print off my story and show your Docs - You can even invite them to contact me if they wish. (I don't suppose they will through!)

[Joanna010181 in reply to bypass]

I will- thank you so much Chris.

[Joanna010181]

By the way do you know what that AN come from?

[bypass]

No one knows for sure what causes ANs I'm afraid Joanna. Some say there is a genetic cause but whilst that's been shown to be true for some sorts of NF2, I have not seen real evidence of the same for ANs. Let me know what your Docs say in due course. Good luck.

[Joanna010181 in reply to bypass]

I will thank you once again Chris

Regards

Joanna

[Joanna010181 in reply to Joanna010181]

Hi Chris

Today I had visit with my GP she had replay letter from neurologist unfortunately hi said that my symptoms are not coming from AN but from migraine . So I m very disappointing that .I don't know what to do my GP will send another letter to different neurologist in Birmingpam I don't think about any positive answer. is very difficult to describe my symptoms may I do something wrong

[Hidden]

Joanna make sure you keep a note of all the different symptoms you are having. Keep a notepad handy and if you get something different jot it down so you can take it with you to the specialist. When you are in a consultation it is very difficult to remember everything so writing it down should help. Also when you go try to take someone with you as you won't remember everything they say so having someone there with another pair of ears helps. If it is migraine then the neurologist should be able to treat it but in my experience your symptoms do sound like AN symptoms. Don't forget though that any symptoms you are having are likely to be magnified by stress. When you are worried or stressed out (which you probably are) they make every twinge feel much worse. You need to make the neurologist know that you are in pain and need something doing about it. Good luck and let us know how you get on. Jackey x

[Highwycombe]

I have numbness left side of face no hearing loss bad T wait mri I all so have a cyst fluid filledl could that be the couse