I feel terrified. How long does it ta... - Acoustic Neuroma ...
I feel terrified. How long does it take to get treatment
I have just seen your post and your previous one, that you have just been diagnosed. I felt the same when I was first told. I knew nothing about AN and did not know what the future held. However I had surgery in February 2012 to remove most of mine and I won't lie it was worrying, but I am fine now and if you read other peoples stories they are too. You are in a good position you have been diagnosed and you will get treated now. My advice would be not to read too much on the internet. And note that everyone's experience is different so don't worry about what might happen. The people on here and bana are very supportive. You can send me a private message if you want to.
I was diagnosed in May (3.5cm left) and had surgery in August. I didn't read much in advance as I felt it would worry me and most of what you read rarely happens. I was, unfortunately, one of the rarities so was quite shocked and upset at what happened. Knowing though wouldn't have changed anything. All that said, it's amazing how the body heals and I am recovering now. The pins and needles are horrid and I have double vision but everything else has pretty much healed in 3-4 months so I am positive about the chances of seeing more improvement over the coming months. I understand there are drugs I will be able to take for the pins and needles and a possible operation for my eyes. I would say that you should do what you're comfortable with and accept that as the right decision going forward. I have learned to accept that this illness is my 'lot' and only I can deal with it. Dig deep and you will find the strength to work through it and come out the other end stronger and more positive. Keep in touch xx
Hi I had an MRI scan on the 4 th August got the results on the 10 th saw the neurosurgeon on the 26 th and had my operation on the 7 th September depending on size and symptoms etc the treatment is usually pretty quick
Don't panic! Although the writers above prove to be the exception, most AN patients don't need and shouldn't have immediate treatment. Indeed I know many who have been watching and waiting for over 10 years and now never expect to need treatment.. This means you can take your time an investigate the most suitable treatment for you. Look at patient centric web-sites like BANA and anworld.com/ and read and ask questions. There are many different treatment options available for all but the biggest tumours. Some people prefer surgery (and there are several different sorts), some find they can watch and wait for many years as their particular tumours are not growing and others like me choose one of the many radio-surgery options. Unless your AN is over 3cms or badly impacting the brain stem, you need an opinion form at least one surgeon and one radio-surgeon. Do not take the word of a surgeon that you are not a good candidate for radio-surgery or vice-versa. They are rarely fully up to speed with each others specialisation and whilst their opinions may be honest, they are probably not fully informed on the other specialisation. Good luck, Chris
I know the feeling of being in an "don't know what to expect" situation. Now you have been diagnosed and maybe have to have surgery or gamma knife just think what the alternatives are if you don't go ahead. I was 50 when I had surgery, the gamma knife wasn't available then. I am 77 now. I have total deafness on the left and I'm not good on ladders because of my balance if I look up. But I have got used to being the way I am. Being as my tumour was pressing on the blood supply to the brain stem I had not many options. Recovery can be slow but you must remember there are many people out there with worse conditions. Try to keep positive and best wishes. Keith
Hi, I agree with Chris try not to panic. When I was told I had a tumour I panicked and didn't know what to do. I was monitored for 3 years then had surgery which I can honestly say was completely painless due to wonderful drugs. My biggest problem was getting used to losing my hearing on the right side so had a bone anchored hearing aid fitted last year which is a little miracle box. As Keith said recovery can be slow and balance can be a problem but everything takes time. Pam
Hi I've got a 1.8cm x1.2cm AN and am waiting to have Gamma knife in January sometime, I've waited about a year but that's because I have other health problems that have been impacting on the choice the Drs were making to treat me. I saw the Dr about going for Gamma Knife about 3 weeks ago and the waiting time for treatment is about 12 weeks at the moment. Have a look at this website gammaknife.org.uk/web/WhatI... and have a read around all the website there are drop down boxes at the top of the page to navigate round, if you chose to go for gamma knife ask to be referred to Sheffield or there is a new machine at Bristol hospital now and I believe theres one in London too, if you chose to go to one of those places the Dr must refer you! It's hard when you've just been diagnosed to know what's what and you have to rely on the Drs to give you the info but I agree with Bypass above that you do not have to do what the Drs tell you if you want another option! Good luck and don't worry xx
Hi I had the gamma knife in December so it was quite quick, I have fatigue, balance problems occasionally and facial nerve twitching,tightness and sometimes pins and needles, I have lost a little more hearing in my AN ear but on the whole haven't had many side effects, will be having my post op scan next December but I'm pretty sure we zapped it well and truly lol Hope you have had time to make an informed decision and are either having or waiting for treatment, best wishes Cathy
