Hello
I agree with everyone else, a referral to a speech therapist and an ENT seem like a good way forward.  A word of advice - ASK for the nasal spray and lubrication.  I didn't have it, because I didn't know it was available, so I guess not everyone offers it.  My speech, breathing and swallow problems are neurological.  Something to do with the vagus nerve.
x

Hi S. S.
Welcome to the site, yes you are in the right place for support, as like you, many of us have similar worries and experiences to share.I have had the camera, both flexible and rigid numerous times in the 15 years I have had a voice problem. It is not something I look forward to at all as I gag so easily but it is over quickly and as Janet says they do spray so it is not painful, just a bit uncomfortable.It is the fear of it that is a problem and anxiety causes tension in the throat area. You must keep pestering your doctor for referral/ voice therapy. It took me eight months to get anywhere the first time it happened to me, and then I had to change G.Ps because I was laughed at. I have recently asked for a second opinion as the ENT consultant just said"Your vocal folds do not close, I don't know why your voice is like that, go back to your G.P. for care" Huh??
Keep in touch and think about joining the social network, it is a good way to 'speak' to others who may be able to help in some way.
Best wishes, Maggie

Wow Hazel you are on a roll!
I like the idea about Patrick Stewart/ Ian McKellen. They both have such beautiful voices and do use them so well and the idea of the participation exhibition, it would definitely be thought provoking.
We have got some video clips and hopefully they may be on the this or the social network soon (Terry is there an update on that?)
Having a card or badge might be a good idea as well and certainly something I would enjoy discussing on the forum or at a meeting


Must go, sausages are burning  AArrrgghhh

Hi S.S.

I'm so glad your second visit to the doctor was more productive. There are a few of us on here with nerve damage that affects their vocal chords, along with many others who have different or unknown causes for their voice problems so you are certainly not alone. Try not to be worried about about visiting the ENT consultant and having a exam of your larynx, it should not be through your mouth, but through your nose via a long thin flexible tube attached to a camera. The consultant normally gives you some nose spray to numb your nose and throat first of all, this is a weird sensation, and they recommend you do not try to eat for about 1 hour afterwards, but is not painful in anyway. The important thing is to relax, as it makes it far easier for the camera to reach its destination this way, perhaps you can take a sedative before hand if you think you will get very anxious. once the camera is in position they will ask you to try and make make a few sounds, swallow and breath. then the camera is withdrawn and it's over :-)
The vocal chords sit across the larynx and they must open fully to allow us to breath, the reason a number of people with voice problems have breathing issues is that either one or both or the chords fail to open completely leaving you feeling like you are breathing through a straw, and this will be one of the things the ENT consultant will look for.
Speech Therapy is something you must consider pursuing, as Hazel says, they may be able to help you maximise what you have and even improve you voice if the condition is considered long term. Think of it as physiotherapy for the vocal chords.   

The itouch speak it software sounds a good idea, I know that some others on the forum would like something like that, is it easy to use for a conversation (as opposed to pen and paper?)
You might also like to have a look on our social network site, http://voiceproblemsupport.ning.com/
where there are some films showing vocal chord problems and how the chords should work.

Let us know how you get on. 

Janet x

Hi
I'm glad you went to the doctor and are having further tests. Try not to worry [easily said I know] when I went for the test I was petrified and when I saw the equipment they use, I was ready to head for the door, but although it looked terrifying, it was actually ok, I had an anesthetic spray in my nose and the examination was done fairly quickly.

Yes, I do find it difficult not knowing what all this means long term and whether I'll ever get my real voice back completely.

Keep in touch and take care

Hi Hazel, it's good to meet you.
Yeah I could definately use the support.

Do you find it difficult not knowing if your voice loss is permanent?

I saw the doctor yesterday and he seems to think there are 2 probable options. One is a polyp on my larynx. The other is that I could have damaged a nerve and caused paralysis to my vocal chords. He thinks that the paralysis possibility is likely because of the amount of joint and nerve damage I've had to my shoulder area (among other places) due to my hypermobility syndrome.

He's referring me for tests to look at my vocal chords. I'm petrified.

I forgot to ask about a speech therapist.

I haven't got any voice software on my computer at the moment because my computer isn't portable. I'm using an app on the itouch called 'speak it'. I was using one called 'talk assist which has a lot of good functions but it makes you sound like a robot. Speak it has 4 voice options built in - an american male, an american female, an english male and an english female. There is the option to download additional voices but to be honest it's not worth the extra cost coz the built in ones are fine.

I do feel less alone knowing I can come talk here...thank you.

Hi
Welcome!
I think you should stay. It sounds like you could do with a bit of support from people who understand what you are going through. I don't know whether my voice problem is permanant or temporary either, I just know that it's good to have somewhere to ask questions and get help from people who really know what it's like.

Yes, go back to your doctor, if you feel you can, I know it can be difficult, especially when it seems like they've made their minds up. Also it might be useful for you to see a speech therapist if your doctor agrees [I don't know, I'm no expert, I'm just throwing the idea in the pot] A speech therapist might be able to work with what sounds you've got and help you to make others. I bought some software for my computer from naturalreaders.com it was about £35 and you can put it onto 2 computers. I got that one as it uses fairly good sounding voices.

I have breathing problems too, in fact for a long time I thought my lungs were the problem, not my larynx especially as there is a history of rubbish lungs in my family. I don't understand what causes it though or what's going on and I haven't been able to find anything online that explains it.

Hopefully after reading this you won't feel so alone

Take care of yourself, hope you post again soon to let us know how you are getting on.

Hazel

Hi, I was amazed and relived to find a forum like this out there coz I've been feeling so alone. Mostly I can only find help for people who can't talk coz they're deaf rather than people who can hear fine and just can't talk and I was starting to feel like a total freak (yeah like I don't feel like one anyway when I go anywhere and people speak to me and expect and response...and then mostly treat me like I'm a brain dead mushroom when they find out I can't speak)

To be honest I'm not sure if I'm a bit of an imposter here right now coz I don't know yet if my voice loss is permanent or what's causing it.

I first lost my voice probably about half a year ago...I thought I had swine flu at the time but looking back on it I don't think it was that coz it wasn't like everyone else seems to have swine flu...I think it was just the symptoms of my normal disability plus the first of whatever this voice thing is.
It was totally gone for 2 weeks..not even a whisper, and then it came back.

I was ok for a few months, and then I got a chest infection and my voice went again for a week...again not even the slightest whisper, but again it came back.

Then at the beginning of april my voice went again...as with each time before it came with a general worsening of the symptoms of my disabilities...but as the other symptoms eased this time the voice didn't.

Since that day I haven't been able to speak a single word.

As I have experimented I've found out that there are mouth sounds and throat sounds. The mouth sounds (clicking of the tongue, t, s and a breathy p...and a k but that one hurts my throat) I am able to make without any trouble. The throat sounds are all beyond my grasp. Very occasionally if I'm really trying to shout my loudest then the tiniest of whispers comes out, and immediately goes away again as if that whisper of a couple of syllables has strained the voice I didn't have!

I saw my GP a couple of months ago (well not my usual GP and the one I saw didn't seem as good somehow) and she didn't seem concerned. I have a feeling that this was partly because I wasn't able to communicate with her what a persistent problem it was turning into.
I was also having breathing problems (which I am also still having every time I move around much. I was intrigued to read that some of you mention breathing being connected with your voice loss so I'm now wondering if the 2 things are connected) which she seemed more concerned about. She said my voice would probably come back at some point, put the dose of my asthma inhalers up and left.

Since then I have discovered a text to speech app on the itouch, begun to teach myself and my family sign language and my partner has become quite good at a combination between lip-reading and guessing what the clicking sounds mean (luckily we are both pretty patient and in tune with each other). If I want to say something more complicated I write. These have been and are still my only forms of communication.

I've been afraid to make another appointment with my GP for a variety of reasons. I'm afraid of being told I'm wasting his time because I've already been seen for this problem and the last GP seemed quite dismissive. I'm half thinking that it will probably be put down to the disabilities I already have as most things seem to be (a couple of my diagnosis are rubbish bin diagnosis...once you have them the doctors stop looking for anything else you may ever have again and put anything you ever feel down to this dx). And I'm terrified of the tests I guess they will do if they do decide to look into this any further or of the possibility of being told I could need an operation or something on my throat (yes the ostrich approach is not a very mature one but as a survivor of abuse I go into a panic attack when they put things in my mouth at the dentist let alone the thought of someone sticking things actually down my throat!)

When I checked the dates just now though I realised just how long it really has been that this has been going on and I asked my partner to phone the doctors for me to make another appointment...so I guess I will find out which of these possibilities are going to happen. I am going to push to have it taken seriously if they don't seem to be coz I can't just live day to day not knowing any more, and if anything can help I want to know about it no matter how scairy it might be.


ok so I've said my load of waffle...it's up to you guys if I fit here or if you want me to go away and come back when I know if this is gonna be a long term problem or not.

I am beginning to see that many of us are not getting much information from the ENT consultant, which makes me feel better. I'm not due to see him again, just the speech therapist. To be honest, it felt like he couldn't wait to get rid of me and that he thought I was just making it all up for attention. [If I wanted attention I'd cut and dye my hair, not invent a silly voice and breathing problems!]

Unfortunately Maggie, I can't make the meeting as I'm too far away.

Unnumbed Janet! No! I would have been able to tolerate it either without the spray.

Pictures of my working [or not] cords would have been helpful for my S.T [and interesting for me!] but I don't think the consultant took pictures, he just looked and made me say a couple of sounds and hum.

I don't really have difficulties swallowing, but I do have more instances of things 'going down the wrong way' and if I try and drink down a mug of tea [rather than sip it in a ladylike fashion] I'm totally out of breath like I've just attempted a four minute mile!

Ideas

As I’m new, I’m trying to work my way through all the old posts, so apologies if this isn’t really relevant anymore.

I think we could look at this from 2 perspectives, a] awareness raising, informing everyone else about the realities of living with a voice problem b] supporting those with a voice problem. Some of these ideas may do both. Apologies though, some of my ideas can be strange…

Video clips – very short clips with voice overs at the end.
Video1 clip of Norman Collier doing the faulty microphone sketch and then voice over saying something like ‘very funny as a comedy sketch, but not so funny when voice problems affect your everyday life. For more information and support, contact Lary at http://voiceproblemsupport.ning.com/
Video 2 – black screen, famous voice speaking, black screen fades up to show picture of the famous person, this happens 3 times with 3 different voices and faces then voice over says ‘Many of us are instantly recognisable just from our voices, but what happens when your voice doesn’t sound like you any more? For more information and support, contact Lary at http://voiceproblemsupport.ning.com/
Video 3 – the clip from Singing in the Rain where they start making ‘Talkies’ and the woman’s voice doesn’t match her image, then the voice over with something like ‘are your voice problems impacting on your work and career? For more information and support, contact Lary at http://voiceproblemsupport.ning.com/

A Lary Logo which can be put on a variety of different things, including perhaps a badge, posters etc etc

A Lary Card – credit card style card, logo and web address on one side and the other side says something like ‘I have a medical condition which affects my vocal cords, please listen carefully as I may be difficult to hear’ [or for those with a more irreverent sense of humour and a fondness for ‘Allo Allo’ ‘Listen very carefully, I shall say this only once’]

A Sponsored Silence, Silent Sit In or a Silent March [I’ve been on one of these many years ago and it was unbelievably powerful.

You mentioned there was work being done to become a charity, as charity we may be able to do other things, for example…
Contact www.naturalreaders.com and ask them to supply their text to speech software to our members either free or at a reduced rate [thank you Janet for that info about T2S software]

Also yes, have a patron, but I’m wondering [thinking sideways] whether someone with a strong voice that they use to make their living with might be a good choice if Julie says no. I'm thinking sort of Shakespearean actor type Patrick Stewart, Ian McKellen etc. In my mind’s eye I can see someone like that talking on BBC Breakfast very powerfully about how devastating voice problems might be to them, really making people think, as sadly, I think sometimes when you have someone advocating for situations that are personal to themselves it’s not always so strong a message. Sorry I’m not explaining that well.

Big store or supermarket support

Wordsmithers Support, get scriptwriters, poets, playwrights involved, i.e people who write words to put into other people’s mouths

Participation exhibitions – ‘Having the Last Word’ exhibit. Approach an Arts Centre, community centre etc etc and ask them to support this. People passing through the centre are invited to write on a postcard [or a speech bubble shaped piece of card]. They are asked to think about [and write down] what their last words might be if they were about to lose their voice completely and who they would say those last words to and then hand the card in. The cards are then displayed at a later date and everyone can read what other people wrote. Very thought provoking and good for press articles too and Lary info can be available at the centre

And finally, probably not appropriate, so apologies again, but in the spirit of reclaiming words often used to define  and describe us and to defiantly show that we may have lost our original voices but not our sense of humour … a badge for all group members with these words on it … Hoarse Whisperer.