community for people with voice problems started by The Lary Project
I have had a voice disorder for many years. My throat is not sore, it is painful to speak and fatigues rediculously quickly. the pain goes into my face, jaw and neck. I can't raise my voice or sing at all. I spend a lot of my time not talking too. I have had many investigations but only recently had someone notice what had been there all along i.e. essential tremor of the voice box and tongue and asymmetric vocal cord movement. eventually someone is planning on helping me at long last. The neurologist I saw recently thought I had adductor spasmodic dysphonia but I thought that always improved with singing, which I can't do. From my research I feel it might be vocal cord paresis instead. Please check out my profile for further details.
Is anyone out there in my boat?
I have been referred for voice therapy, will they be able to pinpoint the exact cause or do I need to see another specialist?
Does anyone know a decent voice disorder specialist in the south Manchester North Cheshire area either NHS or private?
I have a few nasty health problems but I can live with them all. The voice disorder is by far the most disabling and is the only reason I don't work.
So sorry to hear your problems, all of which sound very familiar. Re getting treatment:
There is a husband and wife team at the Wythenshawe Hospital (Mr and Mrs Jones) who are well known. Here are a list of Manchester voice clinics below. You should ask your GP to refer you to the voice clinic specifically, not just general ENT.
M3 Voice Clinic, University of Manchester, Otolaryngological Dept, Manchester Royal Infirmary, Oxford Road, Manchester M3 9WL Tel: 0161 276 4639
M8 North Manchester Adult & Paediatric Voice Clinic, North Manchester General Hospital, Delaunays Road, Crumpsall, Manchester M8 5RB Tel: 0161 720 2847
M23 Voice Clinic Services, Wythenshawe Hospital, Southmoor Road, Manchester M23 9LT Tel: 0161 291 2864
Hi Christina, welcome to the forum. I've got vocal cord paresis (paralysed vocal cord). I did try voice therapy for a while but I think it might depend on the underlying cause as to whether it's treatable by voice therapy. Mine wasn't so I'm now thinking about a thyroplasty operation. Do you know yet what the cause might be?
I agree about voice problems being disabling, I also have a sight problem but the voice issue is much worse, it can be so isolating and interfere with work. As it's not a visible condition people often misunderstand. I was giving a presentation at work the other day and explained at the beginning about my paralysed vocal cord which means I can't project my voice. I still got asked to "speak up" and someone at the end kindly said "I hope your sore throat gets better soon" - agghhhhh! they'd never say to a blind person "I hope your eyes get better soon". All very well meant but annoying!
I hope you find the answers you need. this forum is a great place to connect with other people who understand what it's like.
all the best
I had actually been meant to see someone today at Stepping Hill Hospital in South Manchester but whoever rung to tell us when my appointment was, forgot to actually book me in for it. I will be waiting several more weeks now on top of the years i've already waited grrrrrr!
As for an underlying cause, I am not sure yet. I do have acid reflux and an intestinal inflamatory condition, however I also have a neurological problem i.e. essential tremor of the vocal cords and tongue. I strongly suspect it might also have something to do with gluten ataxia as my voice disorder started in my late teens alongside other gluten related neurological problems like severe dizziness. Proving gluten ataxia as a cause or contributing factor is pretty impossible now I have been on a gluten free diet for 10 years though. All I know for sure is that I have asymetric vocal cord movement and my MRI scan was clear apart from one lesion/hyperintensity spot in the white matter of the frontal lobe and of course the essential tremor.
As for people's attitude. I totally understand where you are coming from and also find it totally infuriating. Prepare yourself for a rant lol!
The thing that annoys me more than anything (apart from the pity face) is people who act like you are inconveniencing them when you can't speak at all and they have the cheek to act all frustrated and be short with you. If they think it is an inconvenience for the 2 minutes I am in their company, how flipping inconvenienced and frustrated do they think I must feel dealing with it for half my life! Some people are lovely about it but I have come to accept that a large proportion of people have a deficiency in empathy and brain cells, so I either ignore them or write them a note with an explination their inteligience levels can accomodate. If I am up to whispering I will explain nicely. If it is someone I know better who deosn't seem to be able to get the concept of a chronic throat problem through the density of their cranium, all tact goes out the window i'm afraid. I've only got one life, this is my lot in it, so I refuse to tolerate any extra nonsense. After all would someone in a wheelchair tolerate being constantly treated like they should just get up and go for a walk.
Ah rant over.
I do really hope to connect with people who are in my position on here. Hopefully I will have a better idea of the exact reason for my voice disorder soon and will post an update at some point.
Christina : )
that was a great rant! You're spot on with the people who look annoyed because they're inconvenienced, they're the worst, I do hope they never have to deal with something like a serious ongoing voice problem - they'd be a nightmare for their nearest and dearest! I work with blind people and would love to tell you it's easier for them but unfortunately it isn't - some people (luckily the minority) are just rude and insensitive, asking people if they are 'really blind' or even stepping over their white canes if they think the person has got in the way - unbelievable really.
but on the other hand some people are lovely. I had a 1-1 coaching session today and I'd explained about my voice problem to my coach. We normally meet in an office but had to meet in a noisy cafe today. She was great, asked me where the best place for me was to sit, apologised if she couldn't hear me and leaned in but didn't make a big thing of it - I never once felt uncomfortable or like she thought I was stupid as I so often do in public places, so it is possible.
good luck with all the tests and hopefully treatment, let us know how it goes
We need to speaking with "one voice" to raise awareness of these basic points. Incredible that such a significant disorder is still so low profile! School hols in July so I am going to get on it!
Any ideas for events or something we could do to raise awareness, get media involved? Something practicable? Any help any of you could provide? With Adele and Nathan from The Wanted both with recent experience of vocal fold operations, you'd think there's an opportunity to really raise awareness more broadly.
Sorry I haven't been on here for a while and thank you for the specialist info.
I may have got to the route of my problem. I think the main issue is inflammation and ulceration of the throat and mouth caused by Inflammatory bowel disease (Crohn's), as my voice has improved a bit with treatment for that and I can now chat to people for 10-20mins (although today I am mute). It is also complicated by the previously mentioned essential tremor of the vocal cords. I did see a voice therapist and she was as much use as a chocolate teapot. She couldn't comprehend that no amount of saying the days of the week and my address would help me when I was swollen up like billy oh! She kept referring to my autoimmune and serious inflammatory condition as "IBS" (ahhhhhhhhh!!!) and thought familial essential tremor (an incurable degenerative disorder of the central nervous system) could be cured by her. Total waste of time so I sacked it off the other week. All it was doing was wasting my precious voice on something useless and leaving me really upset that even she didn't understand what I was going through.
Hopefully i won't leave it too long next time. I saw that there were some meetings planned. If there were any around South manchester that would be awesome xxx
I see you're in Manchester area too and wondered if you have found anyone of note that's helped you at all.
I've been to Manchester North and they have been nothing short of useless.
I believe that there's the MRi clinic and the one at Alexandra Hospital in Cheadle (BMI Private) which Mr Karawanga practices at both and his profile reads really well. Have you had any referrals and if so, what's been your experience.
I'm loosing the plot a little as I'm an event organiser and promoter so my voice is essential to my job.
Any help in the form of leads and/or advice you could offer would be gratefully received.
Hi Steve, yes I am from the Manchester area. Stockport to be exact. I wouldn't recommend anyone from Stepping Hill other than an ENT guy called DR Madani ( I think that's how it's spelled). I too have read Karawanga's profile and he looks really good. I am currently waiting to be seen by a maxillofacial surgeon to test me for inflammatory conditions of the mouth that may be affecting my throat and also remove a salivary gland stone. If non of this helps I will have to go back down the ENT route again and I will ask for Karawanga.
If you can afford to go private you should, because they give you a whole hour and take you seriously, but unless you have health insurance, a laryngoscopy will set you back £1500. Initial consultation is between £150 and £250. Scary.
Mr and Mrs Jones if they haven't retired:
TOWN/COUNTY: Manchester (South)
NAME & ADDRESS OF CLINIC:
Voice Clinic Services, Wythenshawe Hospital, Southmoor Road, Manchester M23 9LT
Mr PH. Jones and Mrs SM. Jones
INFORMATION ABOUT THIS CLINIC:
Multidisciplinary clinics & professional voice user specialist clinics led by Laryngologist/
Specialist Voice Therapists. All voice disorder referrals accepted. Extensive experience
in phonosurgery/specialist voice therapy. Experience with professional singers including
classical and contemporary styles. Access to contemporary singing coach.
CONTACT NUMBER(S): 0161 291 2864 (email@example.com)
Private Practice Information:
a) Will you accept private referrals? YES
(if so, please supply contact tel no): 0161
Ps. you can go to your GP and ask for a referral on the NHS... you need to specify the voice clinic and the consultant so they can put this in their referral