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Acoustic Neuroma,Sarcoidosis

  1. I have many health problems but I seem to have two of the rarest deceases in Acoustic Neuroma (begine brain tumour) and sarcoidosis and I fined it hard to cope with them I also have Lumbar Disc Decease,CFS, Asthma and I had to retire through my illl health at 56.

    To look at the list you think that I picked them off the internet, but belive me I didnt is there anyone out there who has them or am I just unlucky. I have CT scans, MRI scans, lung tests, 22 pills a day, I have a wheelchair, mobility scooter, and everything else that my OT can get me just to lead somekind of normal life.

    If anyone reads this and has the same problems it would be nice to know or am I the only one in the country.

  2. Hi, I can only comment on the acoustic neuroma part of your illness as I dont know about the other illnesses you are suffering from. Have you had the neuroma treated at all? I had an operation to have one removed seven years ago and though had temporary facial droop - this soon cleared up, although have been left with deafness and tinnitus on the side of my op, plus some dizziness, but all in all the outcome was very successful.

  3. Hello labrat

    No I havnt had the operation and for the last 10 years I have been on a wait and see programme with an MRI scan nearly every year and I should have one at Addenbrookes this summer, in 2009 my last scan the neuroma was 7mm, it has made me deaf in my right ear as well as the tinnitus. My consultant at Addenbrookes is not going to put me through the operation because of all my other health problems instead he hopes that radiation will shrink it.

    I hoped that there might be someone who reads my Blog on here who has or knows somebody with these problems,although I dont wish these on anybody, It would be interesting to swap data and see if they have the same problems and how it affects their life.

  4. I wish you all the best and hope you find someone who may be able to chat with you thats in the same position, sounds like your having a tough time of it. Take care.

  5. Hi I was a 'wait and watch' patient for three years but in the end I had so much pain with my acoustic neuroma the surgeon agreed to take it out. I was not offered radiation so went for the translaybrinth which means I am totally deaf on my right side. I am now waiting to have a BAHA fitted to help with my deafness. I wish you all the best.

  6. Hi Pammyjean I would be very interested to hear how your BAHA op goes and how it works after you have it fitted. I am deaf on on my left side - and sometimes find it very difficult but have not been keen on the idea of a BAHA. Could you let me know how it goes? Do you suffer with tinitus too? All the best

  7. Yes I wll defiinitely let you know. At the moment I have a BAHA on a band on loan from the hospital for a week to see how I get on with it and I personally think it is brilliant the only problem I have is the band keeps sliding off my head but obviously that wouldn't happen once it is anchored to the bone. I can now wak along the road without hanging on to my husband because of my unsteadyness and the traffic making my head go all over the place. I can even go for a meal with my family and hear what everyone is saying and I couldn't do that before I tended not to go to noisy places because I got fed up sitting there grinning like a Cheshire cat because I couldn't hear what people were saying and got embarrassed having to keep saying 'pardon'. It got that bad that I stopped going out. Yes unfortunately I have terrible tinnitus but even on a bad day with the tinnitus I can still hear with the BAHA. The hospital also gave me the CROCS a crossover hearing aid where no operatiioni is needed to try they are like small hearing aids with a small wire that goes round the back of my head but I don't hear so well with them. I found my other big problem with single sided deafness was I couldn't hear people talking if they were behind me, since having the BAHA I keep telling my husband to stand behind me and talk to me because I can now hear him I'm sure he thinks I've lost the plot. I have been told the operation only takes an hour and after having the tumour removed this will be a small operation. Also I have met someone who has had the BAHA fitted and they said they heard things even clearer than when it was on the band. I had the BAHA explained fully at the hospital and the biggest thing with them seems to be hygiene around the abutment that is fixed to the head it must be keep clean. I don't know if it's my imagination but my tinnitus does seem to be quieter with the BAHA. I hope this helps you. Pam

  8. Hi Labrat I forgot to say I had my acoustic neuroma out 13 months ago and my face drooped terribly and I had to have my eye stitched down because I couldn't blink but gradually my face is getting back to normal. I went to the hospital yesterday and they're going to open my eye in about 8 wees time it's been stitched down now for 10 months. I still dribble a bit when eating (very attractive) because the right side of my tongue is still numb I also have this horrible taste of iron all the time. I see you had your tumour removed 7 years ago and was wondering if you had these post occurences and if so did they go after time. I've only just found this site and it s good to have the chance to speak to other people. Pam

  9. Hi Pam. Thanks for the information - very interesting and something def to consider. I know what you mean about noisy places and grinning like a cheshire cat when people are talking to you - plus saying pardon repeatedly. Your comments made me smile as I could relate to them! I have a small amount of hearing still but its not brilliant. I should ask to go and see the ent again - was having regular check ups but then I stopped them which was a bit silly but I got fed up going back and forward to hospital. You know how it is. Sounds really positive though.

    Like you after the op I had facial palsy and dribblingexclaim But never had to have anything done with my eye. I used a vibrator on my face and really think this helped as was very soon back to normal. (Although I do still think there is a very slight difference on that side of my face in that it is sligthly drooped but no one else notices). Just have a little balance probs but not much - still walk the fells (live in Cumbria) and even though some bright spark said I would never manage an escalator again - I have no problems with it. Haven't tried riding a bike though! Where did you have your op done and how old are you? I am 58 (w was 51 at time of op). Diane

  10. Hi Diane I had my tumour removed in the Neurological Hospital in Queen Square London and had to stay in for three weeks because I started to develop meningitis but the hospital soon got me sorted out with steroids. I am 65 and live in Dover in Kent. The profesor who removed my tumour referred me to the single sided deafness clinic in St. Thomas Hospital in London and that's where I got the BAHA on loan as far as I undertstand the BAHAs are classed as low priority by the NHS and the hospital has to apply to them for funding but I haven't got that far yet but the BAHA is unbelieveable. I have really struggled with being completely deaf on my right side and can't believe how much it has restricted me but since the tumour has been removed I've had no more pain so really happy I had the op. I've just got back from the balance clinic and wore the BAHA while I was there the physio girls couldn't believe how much the BAHA improved my balance. So fingers crossed all goes well I'll keep in touch if that's okay with you. Pam

  11. I go back to St. Thomas Hospital next Tuesday for the second part of my assessment for the BAHA do you want me to let you know how I get on. I do undertand about going back for check ups but I had to go because of my eye but the travelling got me down because I had to go every other week and its 80 miles from where I live so got transferred to the hospital near me and it makes it much easier but still have to go to London for checks re my acoustic neuroma.

  12. Many thanks you three as I was beginning to think I was the only one with an acoustic neuroma! It has really helped hearing about your experiences but I am still terrified about lies ahead. They say I will have balance issues - will it make walking impossible then? Already I'm not allowed to drive which has the effect of shrinking my life quite considerably. Buses cease at 6.30 pm & there's no Sunday service. I'm booked in to a Balance Clinic - what happens there and does anyone find the exercises effective? My neuroma is only 6x5x5 mm so I guess I may avoid surgery. The hardest part is all the waiting. 2 brain scans and 4 weeks wait to find out why........ Now waiting for specialist appointment as our local ENT people don't have the facilities. This may take months and the only information I've received really is via the Internet, so thanks again for sharing your stories, which make me feel that I'm not alone. Please keep posting. Many thanks Cathy

  13. Hi Cathy try not to worry I had mine out because the pain was driving me mad but I've been told this is an unusual sympton of a neuroma. The operation was practically painless with all the modern drugs they give you and I can honestly say I'm glad mine is out as I am now pain free. I stil go to the balance clinic as I did have a lot of trouble with my balance, I was given head excercises that weren't very pleasant because they made me feel sick but I stuck to them and I can now walk along without a walking stick. I'm not driving yet because I did have a problem with my eye but even that is improving, What part of the country do you live.

  14. Hello Cathy as everyone is saying try not to worry to much, I remember when they told me in 2001 that I had the tumour I collapsed because when someone mentions Brain Tumour you expect the worst but here I am 11 years on and waiting to hear from Addenbrookes about my MRI scan I have every two years. I have no pain from it only the deafness in the left ear and the tinnitus. My Consultant at Addenbrookes is every so good he has explained everything and he will not operate because of all my other health issues so when he decides that it is big enough it will be zapped to try and stop the growth it will mean that I will have MRI scans every two years for the rest of my life, At the moment it is 7mm and as it is a slow growing tumour and sometimes it does not grow at all. I have more trouble with my other health problems than I do with the tumour that is why I started this blog to find out if anyone else has these two rare illnesses, it would be interesting to find out also I hope that other people who have the tumour can find this blog and to find comfort in the knowledge that they are not alone.

  15. Hi Cathy - I know how you are feeling as I was terrified when I found out - especially when everyone kept saying what the side effects of the operation could be. But take heart! I had mine done eight years ago this July. The operation was long and I did feel unwell for quite a few days. After the op I had slight facial palsy and eye droop but this cleared up after a few weeks (I used a vibrator on my face to help stimulate the nerves). I would say to you to adopt aspositive an attitude as you can . I was told my balance problems would cause me not to be able to walk properly, climb stiles, use escalators etc etc. But I can clearly remember feeling extremely unbalanced initially - and in my area had no follow up treatment of any sort re balace etc - and even to this day have not been back to consultant. I had my operation done in Newcastle which is 2hours drive from my home.

    But I worked through my blance diffiulties and because I was quite determined to ovecome them - I did. I have slight balance issues, but nothing major - I am a keen fell walker - so I climb styles - I walk the hills and as long as I don't get too close to the edge I am fineexclaim! smile Be positive and you wll get through it and hopefully will have more support than I had from hospital.

    I drive and started driving again two or three months after op (can't quite remember when) as no on told me I couldnt I just decided for myself when I was fit enough - and I certainly have no problems on that score

    I have tinitus and deafness but I cope with both of these. And you can get help for both symptoms although I have managed so far without but as you will see may consider hearing aid in time

    I am 58 now - had op when 50 -don't know your age but I do know you can get through this and come out the other side. So don't be down hearted. It's not the end of the world and it's not as bad as it being cancerousexclaim!! Look on the bright side and know that you will be fine. Any questions please don't hesitate to ask. All the very best!! Diane

  16. Hi Diane well I went to the follow-up of my BAHA and had the second part of my assessment and have been recommended for the op. I must admit I'm nervous but my hearig was unbelieveable with the BAHA. I had everything explained in full and so am waiting to hear when I can have it done. Unforunately I had to give the BAHA on the band back to the hospital as obviously other people want to try it but they let me keep the CROS aids until I have the operation but I don't hear nearly as well as the BAHA. I hope Cathy reads what we put on here as when I had my acoustic neuroma removed I did not have anyone to talk to about it and her having found this site must help a lot.

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  21. 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.

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