Acoustic Neuroma,Sarcoidosis

Dear all

I can't tell you how encouraged I feel from your comments. This is really an opportunity to hone any positive skills (which aren't exactly the most predominant part of my character) but like you I will be determined to discover what I can do rather than dwell on what seems like doors closing. Do I get rid of the car? Do I stop work? Will I have to move? All questions i don't want to answer but hey, I'm not falling over - yet..... I'm not in pain - yet....... I haven't got tinnutus - yet..........no-one has mentioned an op - yet.....

You all seem to have travelled much further along this road than me and are proving that anything is possible. I was particularly heartened to hear that Diane has continued fell walking. I'm a keen rambler in the Yorkshire Dales/Lake District, much of which you need a car to access, so this is good news indeed. I'm 63 now and used to be quite fit but am steadily building up walking distance again, since an inner ear virus laid me low for 2 months. The ENT consultant said "you have been unlucky haven't you" but it sounds like you all have had it far worse.

I have a friend who has sarcoidosis - that's fibroids in the lungs isn't it? She's away for 3 months but if Lord Muttley has any questions, I can ask her on her return to share her experiences. I know she's been a semi-invalid for 15 years but manages her condition very well, with practiced routines and lots of rest. We were amazed when she started driving a car again recently. This is a godsend, as her walking ability is just a few yards so she relies on an electric buggy. It seems strange but with her physical ability diminished, her mental capacities have enlarged so much so, that that she's a really interesting person to be around. Her range of knowledge is huge , she claims, due to listening to the World Service on the radio. At one stage - 23 hours out of 24 - that was all she could do. Admittedly she has 2 good ears but I find I lean more to the radio these days - perhaps while one ear is still working I suppose.

I guess I'll find out what a BAHA is when I attend the Balance Clinic in York in July so you don't have to go over old ground for me. It sounds like a second op for you Pammy - I'll just keep listening to what you say until it all falls in to place. Also, if you don;t mind, I'll let you all know the outcome of the Multi - Disciplinary Team consultation I'm waiting for. More months I expect but you're right it's not cancer! Everything you are saying is helping to build more knowledge and that is strength right? Thank you so much - it does really help.

Hi Everybody

Thanks Lily the Pink it would be nice if your friend has the same trouble with the Sarcoidosis as I do, I have managed mine with the help of the doctors, mine is in the lymp nodes around the lungs, It is hard sometimes when I have all these other conditions to cope with but I get on with it the best I can, I have to go and pick my new wheelchair tomorrow Wedensday, I make the nurses laugh when I tell them if I could have my own car parking space and when I dont need it I could lease it out. That is how I manage everything I am not the sort of person who just crumbles into a heap.

Hi Lord Mutley I hope you enjoyr your new wheelchair when you get it tomorrow it did make me smile your comment to the nurses about carparking. Hopefully Lily the Pink will pick up on our sense of humour and help her realise things came be overcome I hope I didn't worry her when I said the pain from my acoustic neuroma drove me mad but I was told over the three years that pain is a very rare symptom and does not mean it is part of the acoustic neuroma.

Hey Lily you may not have to have surgery - have they suggested lazer treatment to you. (I guess you are still waiting to see specialist). But you will be able to continue your walking. You are obviously older than I was when had mine removed so that's why I think the may suggest the lazer stuff. Have heard good results from this as though it doesn't remove the thing totally at least it shrinks it - but don't forget it's a slow growing tumour and could be many years before you have symptoms of tinnitus etc - if ever. The experts will advise you. Also, since I had mine removed thing have progressed very well.

There was a support group out there at one time for acoustic neuroma suffers (think it should still be around). Worth trying to track it down on internet or asking when you go to hospital. It was called BANA I think. (Britsh Acoustic Neuorma Association)

Thanks Pam for up dateon BAHA - will wait and see how it goes for me as to whether I feel I have to go down that road.

Take care all.

Have just looked it up and BANA is still there and if you are a facebook person you can find their support group on there.

Many thanks everyone. I'll try looking at the BANA site. Going offline for a few days so will post any new developments after that. It will be August before I can comment again about sarcoidosis though. Take care and yes I laugh at your "asides"......where would we be without humour?

Hi everyone well I had my pre op assessment atGuys Hospital on Wednesday and am having my BAHA operation on Thursday so hope it goes well

Hello all, I too can only comment on the acoustic neuroma, seems its not so rare after all!

I was diagnosed with a 25mm tumour in December 2011. I had it removed at the end of March and although awaiting my first follow up next week, I believe the surgery was a complete success. I suffer from facial weakness on the left and I have lost all hearing in the left ear, however, this is a small price to pay for the knowledge that the tumour is out.

My hearing is a problem for all the reasons that have been mentioned by many of you beforehand. Next week I hope to start to discuss options for improving my hearing. Research tells me that the BAHA offers superior sound that that of the CROS but I am not keen to wait the many months for baha, assuming I can get it.

I live in the north east and my surgery was done at Newcastle Royal Victoria infirmary. The care was excellent and as they are the regional centre they have lots of experience.

Happy to share my experiences so just shout up.

Take care and good luck everyone. Steve

Hi Steve I'm having my BAHA surgery Thursday and it was fairly quick I think the waiting lists and funding is decided by your area Primary Care Trust so you could be pleasantly surprised like I was. My acoustic neuroma op was 14 months ago and I still have slight facial palsy but it was really bad when I had the op and was in hospital for 3 weeks. The biggest problem I have is my eye I've had it stitched down for nearly a year now but once I've had my surgery for the BAHA I will have it opened. But like you say its all a small price to pay to have the tumour out, you read about people who have brain tumours that are inoperable so we have nothing to complain about. Have you tried the BAHA on a band it's really remarkable and I've been told once it's anchored to my skull it's even better. I tried the CROS but found the wire at the back of my head kept catching on my clothes and because of the hole where they took the tumour out the earpiece didn't fit properly so the hearing wasn't half as good as the BAHA.

Thanks Pam, I wish you well for your baha op on Thursday and I will be very interested to know about your experience. My tumour was removed via the retrosigmoid approach so I have a plugged hole in my skull behind my ear. I am not sure but I think that due to the healing period I have to wait a year before baha couldbe done. Therefore I may try the wireless cros. Anyhow, good luck for Thursday,et us know how you get on

Thanks - Steve

I had the translabyrinth (not sure of spelling) approach to remove mine so all my hearing had to go so they could get to the tumour and they plugged the hole with fat taken from my stomach (I prefer to call it tissue lol) but I had to wait a year for the healing process. Still get little aches and pains around the area of my op but nothing to worry me. After I have the op on Thursday I have to wait 3 months for my skull to settle and the screw to settle before having the BAHA fitted to it but I'll let you know how it goes..

I have now been given a new CROSS digital hearing aid without the tube around the back of the head, I have the transmiter over my bad ear and it sends a signal through too the hearing aid on my good ear so I can hear everything down one ear. It has made a big diference to me no more tube getting stuck to my neck and when I turned my head the hearing aid fell out.

Hi, I haven't tried the wireless CROS when I tried the one with the wire it drove me mad keep falling out so when I was offered the choice I decided to go for the BAHA I just dread the oeration but from what I've heard it will be worth it.

What I ment to say as well was I dont know I have them on, I am always getting into bed with them on and it is only when my head hits the pillows then I realize they are still on. I dont think I could face the operation to have the BAHA fitted with all my other troubles and as I said my consultant will not operate on the tumour because off all my health problems. I am waiting to go and have my MRI at Addenbrookes later in the summer to see if the tumour has got any bigger, all I can say is that it is causing me no trouble at the moment and it is now 11 years since I found out that I had the tumour.

Hello Lord Muttley, that's good to know that you seem to like the wireless cros so much. Although I am not too bothered about the op for baha, it's just the wait that I don't want.

I have been off work now for 3 months and when I go back I want to be able to function as I did before. As I spend much of my working life in large meetings my current hearing problem will certainly be an issue.

I am hopeful that I can get decent wireless cros quickly so I can adjust and get back working again.