Newbie

[satine]

Hi I am in England and was diagnosed in December with a small AN (11mm) aged 42 after losing some hearing in my right ear - had been going back and forth to my GP for nearly a year prior to being referred to ENT clinic. The consultant has advised W & W and am due to go for another MRI in June. I see there are people on here who have been in W & W for some time so am hoping it's the right way to go. I do suffer from some nausea and feel off balance occassionally and I seem to get very tired - does tiredness affect anyone else as the Consultant didn't think it was related to the AN. So glad I found this forum as I can't find a site in the UK.

[Derek]

Hi there Satine...

Sorry about your recent diagnosis but you have found a great site where you will get answers to most of your AN queries from others who can empathise and offer practical support and guidance... oh, and a very warm welcome from a fellow 'Brit'!

Fortunately your AN is on the 'small side' and you are an ideal candidate for W & W. I was 58 when diagnosed with a 2.5cm right-side AN and have just had my 9th year scan and awaiting the result prior, hopefullly, to carrying on into my 10th year in W & W. You will note from my signature that my AN has apparently self reduced during the ensuing years so the maxim is do not rush into any future treatment options until you have carried out lots of research. It is not unusual to experience nausea, fatigue and balance problems etc during the early stages following diagnosis but these symptoms often self rectify in due course as nature compensates and as you become less stressed following the acceptance of your diagnosis.

Some aspects of my previous inputs are UK specific re NHS matters etc so it may be advantageous for you to trawl through my posts including the 'Top Tips for the Watch & Wait Brigade' which you may find useful.

Best Regards

Derek  

[Jim Scott]

Hello, Satine - and welcome ~

I'm sorry you've developed an acoustic neuroma but at least it's rather small and observation ('watch-and-wait') is a viable option for now.  Acoustic neuromas usually grow but sometimes they lie 'dormant' for years and occasionally, they stop growing permanently, although that is rare.   The June MRI should indicate whether or not yours is growing or not.  As for your fatigue,  that is fairly common with AN patients.  As the tumor compromises the 8th cranial nerve, hearing and balance are affected.  Because your brain is receiving less information to help you keep your equilibrium, it is 'working' harder and this is often the cause for excessive tiredness (fatigue).  Of course, you may have other underlying reasons for increasing tiredness so your doctor may have been considering those when he stated your fatigue was not related to the AN.  I am not a physician and would not presume to contradict what a doctor has stated.  I only offer information - and I hope it's useful to you.

Jim

[moe]

Hi Satine and Welcome

Jim said it very well, with the fatigue. I've been fatigued my whole life actually and require daily naps.

My tumor was in there for way too many years. I was especially fatigued before the diagnoses, and post op through the years, the fatigue hits me mid afternoon. I take a nap, and can finish my day. I do find that the first half of the day is when I have to get the "brain" stuff done, because I get a little fuzzy towards the end of the day.

So yes, it is normal! Let us know how your W&W continues, OK? There are a lot of W&W'ers

Maureen

[Jackie]

Welcome Satine,

As a fellow W and W person, it is extremely important that you gather all the information that you can regarding your AN diagnosis. That's being pro-active and will prove extremely beneficial to you when and if you must make a decision about treatment. Read as much as you can and don't be afraid to ask questions. We are all here to assist, though we aren't doctors, we are able to share our individual experiences. In doing your research you will become much more capable of making the right decision for you. Again having the size of AN that you have, you are afforded the time to research.
Blessings to you,
Jackie, Oregon USA

[satine]

Hi, thanks for all of your advice, I  will certainly have a good read through the posts on here and do my research and will keep you posted on my progress. I don't feel so alone now and not quite so scared! 

[nftwoed]

Satine;

  You wrote: "I do suffer from some nausea and feel off balance occasionally and I seem to get very tired - does tiredness affect anyone else as the Consultant didn't think it was related to the AN."

  Re, the consultant; If the person is not a specialist in ANs or NF-2, I disagree with them saying there is no relationship between fatigue and a smallish AN.

  ENTs are not the most highly qualified people to see re, AN. A Neurotologist, or Otologist specializes in AN/NF-2.

  I ask, 'why wouldn't nausea and feeling off balance on occasion, NOT cause fatigue? The body is constantly trying to correct itself ( homeostasis ), so, in your case, your body is constantly trying to maintain normalcy.

[mattsmum]

hi satine - welcome from another from across the 'pond'!
i am in uk too - but did not find this site for a while; there is a wealth of info here.
there is a british acoustic neuroma association too (BANA) - it does have a forum but you do have to join to read or post and for obvious reasons it is a lot smaller! however you may find it useful to look there too as there is info about british treatment centres and doctors/surgeons.
best wishes,

vikki

[satine]

Thanks for the advice, I went to the ENT clinic but there were 2 doctors there but not sure what they specialised in (lot to take in at the time) but i am due for another MRI in June so will find out then. I will also join the British website as I'm sure it will be helpful to have alook on their forum.