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[SilentSymphony]

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.

[Hazel]

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

[SilentSymphony]

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.

[Hazel]

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

[Janet]

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

[Maggie]

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

[Twinkle2]

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