Vocal Cord Dysfunction

Hi Everyone

I am looking for some advice so I hope yuo can help. When I was in costa last week I was told that the wheezing waas coming from my throat and not my chest although I had had a chest infecion the week before and was on antib's that did nothing.

They did a bronchoscopy and found that I might have vocal cord dysfunction as my vocal cords were apprently unusually close together and so restricting my windpipe. However this is only a ? as I was zonked out underr general anasthetic as I was coughhing too much under local. They said the only way to confirm this is to do it again under local as the anasthetic also sdedates your vocal cords, which I personally can't see working. When I was discharged they told me they would arrange speech therapy to help but I am confuzzled. The wheezing scared me and nebs did sort it for a bit but it is still going and I don't know what to do. This was the first time I have wheezed from my throat.

I am now at home and wheezing happily away. I need too go back to school tomorrow which should be great fun as I am exhausted still. I don't really know what i am asking. I guess I just want some advice. I need something to stop my mum worrying. She looks as bads as me lol. Thanks

Love

Steph xx

[Hidden]

Hey Steph

I know we've talked about this alot or already but from my experiences, I've met patients that have had it and have it and it is generally considered as a good thing. It means your lungs aren't messed up as they sound permanent damage to the lungs from severe a attacks can not be reversed. VCD is the vocal chords cutting off the air supply to your lungs rather than messed up airways. It can be treated and sometimes almost cured with speech therapy. Most people that have VCD don't know they have it or how long they've had it, its not something you have control over and presents like severe brittle asthma with type 2 tendencies. I met a patient a few months ago that was diagnosed with VCD 10 years ago, she was very disabled, spent alot of time in hospital and icu with what they thought at the time was brittle asthma when it turned out to be VCD they get her alot better with speech therapy and shes now a medical solicitor. She still has asthma symptoms nowhere near as bad as she was she gets the odd chest infection and has to have the odd course of steroids. I witnessed a VCD attack last year when a friend had one while we were out shopping and I've got to say it was scary to watch, I didn't know what to do. The speech therapy will teach you how to breathe through these attacks and in time your vocal chords so stop giving you symptoms it is a long process but from what I've seen worth sticking with. Someone correct me if I'm wrong but you can't get VCD without having underlying asthma so when your VCD is sorted you will still be left with some asthma symptoms.This is why you still get some relief from nebulisers/inhalers most people discover they have it when they get severe asthma that doesn't respond to aggressive therapy investigated.

if you have anymore questions you know where I am, hope this helps.

tks xxxxxxxxx

[Hidden]

Steph

I have severe vocal chord dysfunction and the first thing that I want to tell you and your mum is not to worry as it is much less serious than asthma.

VCD is very difficult to diagnose and I spent 2 years being told that my asthma was uncontrollable to then find out that my asthma was not that bad but I had VCD.

VCD is when your vocal chords go into spasm when exposed to whatever your triggers are. Mine are chemical type things such as smoke, bleach, acetone, perfumes, etc. There are varying degrees but it does help with diagnosis if you can pin point something that always causes you a problem. You don't need a broncoscophy for diagnoses. With me I knew that if I smelt nail varnish, I would be unable to breathe and start wheezing everywhere. My consultant put a camera up my nose and down to my vocal chords, I smelt the nail varnish and my chords went into immediate spasm which confirmed the diagnosis. If you have something like that insist that you see an ENT specialist and try to do that test.

It is a bit unorthadox but gives a definite answer.

The usual treatment to VCD is speech therapy. They teach you to retrain your vocal chords so that you can cope with any spasms.

The main thing is that it is treatable and in time, apparently, curable.

Also the key thing is with VCD rather than Asthma is that in a worse case scenario with Asthma, the worst can happen. But with VCD the worst that can happen is if you pass out through lack of oxygen, you relax completely and the spasm goes so you can breathe again. But please only look at that as the worst case scenario. The chances of your VCD being that serious are very very very slim. Mine is very severe and I don't pass out. My consultant, who is one of the countries experts on VCD, only has one patient that passes out.

The biggest problem with VCD is that it is commonly known about, is regularly misdiagnosed as asthma and not many speech therapists know about it.

If you are anywhere near London, see if you can get a referral to Charring Cross Hopsital as that is where I go and they know exactly what they are doing there.

I hope this helps but if you have any more questions, please shout or send me a personal message if you don't want to post the questions here.

Maxine

[Hidden]

Hi

Another bit - you can get VCD without asthma just as you can have asthma without VCD.

I find nebulisers helped with my VCD but no-one knew why. The doctors at Charing Cross think it is the mist and I now agree with them. I now use saline nebules rather than salbutamol and they have the same effect in settling the spasms.

If you have a neb at home, ask your GP for some saline nebs and next time you feel you need one, try a saline one first - that should decide whether it is the VCD playing up or the asthma.

Please remember though there is life after VCD. After two years of total disability I am starting to get my life back and even looking at going back to work.

Take care.

Maxine