New Boy

[HipPriest]

Got diagnosed last week. AN in right ear. 3 years in the developing. It was the tinnitus that drove me to the ENT guys and not the hearing loss, although that was becoming a bit irritating (no balance problems to date). Feel quite relieved that all the symptoms fit those of AN and that the unknown element is now gone. 3 options I'm told; do nothing; have surgery; have radiography. I was told surgery would almost certainly further damage my hearing, doing nothing clearly would not get rid of the tinnitus - which is really quite loud now and not much said about radiography. Reading some of the blogs doesn't feel me with a huge amount of optimism that any intervention isn't without a downside or am I wrong? Quite relaxed about any treatment but would like the honest facts.

[Hidden]

Hi there. Speaking from personal experience (husband had AN removed 10 years ago), surgery does not mean it will cure the Tinnitus. From speaking to many many other AN patient members of BANA it is clear that no treatment will guarantee ridding you of tinnitus but, having said that, we do have members who have come out of surgery or radiotherapy virtually tinnitus-free. Every person is different and there is no way of knowing what will happen in your particular case.

I would urge you to investigate all treatment options thoroughly if you are advised that treatment is necessary. Normally, unless the AN is very large or causing massive problems, patients are re-scanned after 6-12 months to see if it is growing. If it isn't growing then quite often patients are kept on a Wait and Watch regime. Radiosurgery or Radiotherapy (slightly different forms of radiation treatment) are only suitable for certain patients (e.g. some consultants prefer not to treat younger patients (under 40) with radiation as there is no clear data about what can happen in 30-40 years time and if the AN is large (over 2.5 - 3 cm) most consultants would suggest surgery. It all boils down to the individual patient's circumstances.

All treatments can have downsides but we also have members who have bounced back after surgery or radiotherapy/radiosurgery with very few problems. Don't forget the majority of people who don't have any lasting problems don't bother to visit forums or join groups for support - you will mainly read about people who are suffering and need help.

If you are not already a BANA member, do consider joining - we have a very active website forum used by members who have had different treatments, as well as a number on wait and watch.

Good luck on your AN journey

Jackey (BANA Secretary)

[GrandmaAnn in reply to Hidden]

Hi Jackey,

Can you help me. I have just had my consultation, my AN is 16mm x 18mm and I too have been given the 3 options. Thing is, on reading the literature the hospital gave me, which is BANA edition 8-09/01 it does say 'the smaller the tumour at the time of surgery the less chance of complications'. With this in mind, I am 45 yrs old and really worried about the risk of facial palsy following any treatment. The Gamma Knife guy who was at the consultation didn't really seem to promote the GK option where as the surgeon was 'confident he could get all the tumour without effecting the facial nerve' My symptoms are not severe at all at the moment so initially I thought 'wait and see' but if I need surgery in say the next 10 yrs I would have the same concerns re facial palsy and the tumour would be bigger so risks would be larger? Why wait if its less risky to remove when smaller, also why offer surgery if GK an option? I really don't understand?

Any advice would be much appreciated.

Many Thanks

Ann

[Kristyll]

I think Tinnitus never seems to disappear but eventually it becomes accepted and un intrusive-well with me and folk I know. Treatment options are very personal but get more info from BANA Kristyll

[Marauder]

New Boy: I wish you the best on whatever procedure you opt for.

I suddenly lost my hearing (also on right side) in one day. No previous loss or even hard of hearing. That was April 2012; when finally diagnosed in May the lesion was 8mm x 6mm. In December it was 11 x 6 and termed slightly progressive. It was then I was referred to a neurologist in Winnipeg, Manitoba. We live in Regina, Saskatchewan. Canada.

Prior to this I spent a lot of time researching all aspects of A.N. I think my biggest concern was what procedure I wanted. Turns out that the Dr. in Winnipeg does both micro surgical reduction/removal and Gamma Knife; he made the decision, based on my age 68 and the size of the tumour.

He selected the Gamma Knife procedure. I had this done in early May, 2013, less than a month ago. I am scheduled for another MRI in 12 months to see whats going on. Success with this is from 95-98% from what I've read. The procedure only takes a few hours and you can leave.

As far as tinnitus, I have never heard, before the previous post, it ever being resolved by any manner of treatment. I have that as well and imbalance too.

When my hearing was first tested it was discovered that I also had some loss in my left ear. I was subsequently fitted with Bi Cross aids from Phonak; the premier manufacturer of this kind of aid. I have read that some hearing aids will help with tinnitus. My tinnitus doesn't really bother me that much.

Again, good luck. Remember I'm not a Dr. just a lay person living with an acoustic neuroma.

In hindsight - surgical removal almost seems barbaric?

[keithzx12r]

"Almost seems barbaric" seems to ring a bell. I had three AN's removed by surgery in 1987 at The Radcliffe Infirmary, Oxford. I was feeling great for age 50 before surgery the only symptom being deafness on the left, AN, side. However the specialist said the AN was of such a size it was threatening the blood supply to the brain stem and had to be removed as a matter of some urgency. After the op I had quite severe balance issues, paralysed face one side, difficulty swallowing when eating, unable to close my left eye, headaches etc, generally pretty poorly. because I could not swallow food i dropped two and a half stone in three weeks. I had my own motorcycle shop and six employees - the business suffered financially because I was unable to work for a couple of months and the Bank got jittery. HOWEVER, here I am 25 years later, retired, sold my busines which I managed to pull back from the brink by giving up my house and mortgage and going into rented. Now I am mortgage free living in a bungalow in Cornwall with my wife. My balance is still not good but manageable, headaches are rare, my face has straightened up but people still think I've had a stroke, I have learned to swallow on the right but still get caught out sometimes. At the time of my op there was no wait and see option and gamma knife was in its infancy in the US so I had little choice really. I could have done without the experience but the surgery saved my life didn't it. I hope you can go forward in a positive frame of mind and best wishes. Keith

[Scottie1954]

I know exactly how you're feeling. I was diagnosed 8 weeks ago and have just had my first appointment with the consultant in Birmingham with a view to getting cyber knife treatment after they see the result of the next MRI in August. I was hugely relieved because not knowing which treatment would be recommended meant for me that I didn't feel able to make any plans this year in case the outcome was surgery with the complications of that. Good luck and I hope you get seen soon.

[Elkcub001]

Hi. I'm new to this sight. My name is Jo. I got diagnosed in February 2012 after suffering for many years with migraines, dizziness and fainting episodes but what got me to be investigated with an MRI scan, was going deaf in my ear.

The tumour was 3.5cm in diameter. I had 85% removed in May 2013 . I am now waiting to have gamma knife for the remainder of the tumour. I was seriously ill after the operation. I don't want to scare you as I think I may be one of the worst case scenarios. I have facial palsy (waiting for corrective surgery). I got hydrocephalus (fluid on the brain) after my op. Now fitted with a permanent variable lumbar shunt. Because of the hydrocephalus I lost 4 stone in weight (constantly vomiting) but I have gained some back now. I also caught pneumonia whilst in hospital. My balance is still very poor (disorientation and drunk feeling, mainly outside) but I am having physiotherapy for this and do exercises at home. I'm having to reevaluate my life and do things differently. I am a mum to three grown up children and I did work full time (loved my job). I cannot drive so my independence has been taken a bit. I'm learning to cope differently. One day at a time. I still have good and bad days. I get anxious, but I'm thinking it may be my confidence that has been shattered, I was quite attractive (don't mean to be vain) before the op, but the facial palsy has made my face drop I'm trying to rebuild my life, taking a different path. I'm trying to be positive some days are difficult. My family are my support and I'm very grateful I'm hoping things will get better. I just want peace, we'll being and happiness. I hope I haven't scared or depressed you. Wish you luck in whatever journey you choose to take. Jo