Acoustic Neuroma,Sarcoidosis

You must have a very slow growing one which is really good as you have other health problems, I was told that sometimes they stop growing alltogether. Hope your next MRI scan proves it's stopped growing.

Steve I agree if you want to go back to work you need your hearing straightaway. I had so much trouble with my balance and deafness and also my eye because I couldn't blink with facial pasly my eye dropped giving me double vision so I decided to retire from work. Now my balance is back and I'm soon going to have my eye stitched back I thought I'd go for the BAHA.

Hi Pam, I have similar problems, balance, eye etc. I feel strong however and I am determined to return to work as fully functional as possible. To do that I need my hearing so I hope the ENT consultants will sort me out with something quickly. I still fancy the baha long term I just know that I can't get it as soon as I would like.

Good for you. I worked for the police and had six months off then went back part time but I just couldn't see because my eye was half stitched down and the muscle got so week my eye dropped causing diplopia. But like you my hearing caused me the most trouble.

When the professor decided to take the tumour out he kept saying that I would be deaf on one side and to be honest it didn't really bother me because I thought welll I've got one hear but it doesn't work like that does it my balance was all over the place but I've had a few laughs at the balance cliinic. I hope Lord Mutley's tumour stops growing for him

Yes I hope his tomour stops as well.

My surgeons thought they could save the hearing that I had in my left ear. It wasn't great but it had some use. After reading up before the op it seemed clear that there was a greater chance of loosing it than saving it.

At first it didn't seem too bad, in hospital I was in a room on my own and the clarity of hearing appeared to have improved due to the lack of distortion from the poor ear. However, once I started to get stronger and venture out I realised just how much the ssd was going to effect me. It sounds like I am whining but I am not, I am very happy with the outcome, the thought of the tumour in my head was far more disturbing to me than the hearing is now.

Good luck for tomorrow.

That's exactly how I was and now in a restaurant or pub or when my family come round and everyone is talking all at once I have no chance of hearing anything. With Lord Mutley saying how happy he is with his wireless CROS and me having the BAHA I'm sure you'll find one that suits you. I'm just off up to London and having it done at 7am I'll let you know how I get on.

Hi Steve, op went well apart from one small hiccup they found I had a large vein in the way from my previous operation so they had to seal it off. Very little pain but a numb head again. Got to go back

on Tuesday for them to check the abutment and show me how to look after it and then in 3 months time I'll be able to hear again.

Hi Pam, so glad to hear your op went well, did you have a general or local anaesthetic?

I see my surgeons tomorrow and I hope to be able to discuss the possibility of Baha in the future. There seems to be so many people saying how good the baha is, I can't afford to pass it up.

I hope the implant heals quickly and you are fitted with the processor soon.

I had a general i wasn't given the choice I think it's down to the surgeons preference but after a good night's sleep I was fine. Got loads of painkillers and a very very large box of chocolates to keep me going. Let me know how you get on but if you decided you'd prefer the BAHA to the CROS stick to your guns. I was very lucky I had the chance to try both and the BAHA was definitely the best. Please keep in touch and just one more thing it wasnt' as bad as the acoustic neuroma op. x

Hi Pam,

My hospital visit went well, this was my first review 3 months after the surgery. I saw the president of the uk Baha professionals who runs a clinic in Newcastle. I tried the baha on the headband for a very short period. Although I could hear well it was difficult to judge due to the quiet surroundings of the consultation room. Sadly I couldn't keep it on any longer.

My recovery seems to be following the typical path so we were all quite pleased. I have been referred for treatment for balance and I have an appointment for late August to discuss hearing restoration. I will have a brain scan in 6 months to check that all the tumour has gone, so I am looking forward to that!

The best news was that I can return to work at the end of the month.

The ENT surgeon says there is only a 2 to 3 month wait list for baha which was great news and I could also try cros beforehand which was good to know.

Anyway, how is your recovery going, I hope it's still pain free and there are no complications.

Take care. Steve

Hi Steve so glad your follow up went well. After I had my six month scan and went back they showed me the scan result and nothing was left of the tumour it had completely gone. I went back for check up on my BAHA op yesterday and they are really pleased with my implant but have an infection in the scar which I am told is quite common so on antibiotics and going back next Tuesday for stitches to come out. It's great news you can return to work you are obviously a lot younger than me. The only small problem I have is where my face was gradually recovering from the tumour operation because they've had to open my head again it's all gone completely numb again and have been told it can take up to 6 months to return to normal but that's a small price to pay to be able to eventually hear again. When I am off all the tablets and my face is back to normal I am going on a pub crawl that is going to last for about a year lol. You are so lucky to be told 2 to 3 months waiting for your BAHA some areas are refusing to pay for single sided deafness. If you google The Ear Foundation BAHA Support Group you will be able to read different stores from people who have had their operations and how they are getting on they are very friendly and lots of people will answer all your questions you'll see me on there as PamJ

I have now recieved my MRI appointment at Addenbrookes it is on Monday the 16th July at 10oclock, I dont mind MRIs now I have had so many over the last 12 years, I hope it has not got any bigger because at the minute my health is not to good.

Hi Lord Muttley so pleased you have a date for your MRI scan I will be thinking of you as I have over 10 MRI scans while they were watching my tumour and I know it can be a worrying time. Let's hope it hasn't grown since your last scan. Please keep in touch. Pam

Hi. I've recently been diagnosed with an acoustic neuroma. One change I've noticed apart from the physical and expected symptoms is my personal feelings and my lack of trust in people. I feel that everything I touch is going to turn bad and that my boyfriend is going to leave me for someone else. Every time he leaves the house I question him and as soon as he comes back I question him again. I'm going to drive him away but I can't help it.

Hi Emily

It's natural to feel that you are not as in control as you were before. I know when I was diagnosed it came as a huge shock. I has never heard of the condition before and therefore I did not expect this to be the outcome.

It's worth keeping in touch on here and reading how so many people recover with very little side effects. If you feel that your boyfriend may be concerned about the journey and possible post treatment care, then share your experiences and findings with him. You will find that you both become more reassured. Have you decided what treatment you want? There are many people here who can share their experiences with you so don't feel alone.

Take care

Steve

hello Mr.lord..when i was 19 years old i was diagnosed having a acoustic neuroma..i felt depressed at that time because im still young to get sickness like that as i know its commonly old got this..I was undergo in surgery here at the Philippine General Hospital..and thanks to our Almighty God..my operation was very successful..eventhough my left cannot hear anymore and and had facial falsy but it recovered by 80 percent after a month..until now I am 27 years old already my toungue is 1/3 numb..i cannot blink my left eye 100 percent..but after all of these i am thankful because i am living like a normal man..I learned to accept my situation now..and life must go on..God bless to you Mr.lord..I am praying for your good health