Re: Vocal Cord Paralysis

[Guest guest]

Hi ,

I know of one person I can think of who you may be able to contact.

Please email me personally, and I can give you the contact information.

I would also suggest checking with Annette and at CMT UK as they

may know of others in the UK who have had the surgery, or others docs

who can give second opinions.

I regret I am not able to answer your questions - I just " don't know " .

~ Gretchen

[Guest guest]

Hi ,

I read your post. It seems that at St ' they have been good at

answering questions, although it is probably a scary time for you.

Did you get in touch with Reilly's office? She and her staff should be

able to discuss general situations of other patients with similar that they may

have seen. She is such an expert in the UK I would hope that her office could

help out a bit. They of course won't release patient info but maybe you could

get a referral and see her to hear about hers and others experiences in the

hospital of Neurology and Neurosurgery?

I am thinking of you and wishing you all the best,

Donna from London

[Guest guest]

Hi Donna,

Thankyou that's really kind of you. I do get very frightened especially at night

times when I just cannot catch my breath. I am pleased in a way to finally have

an answer, I've had so many problems with my doctors over the years. They only

ever heard me after I had been sitting in the waiting room for what felt like

ever, of course my breathing was normal then. I tried to explain that it was any

form of exertion that affected me but it fell on deaf ears until I was referred

to a fantastic neurologist in Canterbury.

I have only just come back from holiday, my husband booked a last minute holiday

to try and cheer me up after my last trip to St '. Contacting is top

of my list for next week.

Hope you are keeping well and you enjoyed your holiday.

Take care and thanks again

[Guest guest]

Hi ,

I won't be much help but I wanted to say I would have been scared to hear all

that too. I hope you never need the surgery and I hope today is a better day.

I consider everyday I don't need surgery or my kids don't a good day

[Guest guest]

Hi ,

Thankyou for your kind thoughts, it does help to know that other people do

care.The sun is shining here today and that always makes me feel better. Apart

from the breathing problems I cope quite well so I do consider myself lucky. I

have two wonderful children, a fantastic Mum who's also my best friend and a

very caring and understanding husband so I count my blessings.

Thanks again,

Take care

[Guest guest]

Hi ,

I also have a fanstastic husband who is very understanding and

unwaivering. That helps me SO much.

I don't think I have breathing problems, but I do have occassional

bouts of insomnia which really drag me down. I think it's

just 'cause my brain won't 'shut off' ya know?

[Guest guest]

Hi Donna,

Hope you are keeping well.

Thought I would let you know that I saw my neurologist on Thursdays and he is

going to refer me to Reilly to discuss the Vitamin C trial and to see if

she can offer me any advice regarding my breathing problems.

Thanks for the info.

Take care

[Guest guest]

I had it for a few years.  I could only speak in a very quiet voice.  I think

lyme infects the vocal chords and it also affects the nervous system linked to

the vocal chords.  It is better now after five years of treatments.

Heidi

From: Janet Ring <janet.ring@...>

Subject: [ ] Vocal Cord Paralysis

Date: Friday, October 9, 2009, 4:45 PM

 

As a singer, I've been experiencing a lot of changes to my voice.

Specifically, I don't seem to be consistent in holding pitch anymore and

when I listen to my recorded tracks, I sound awful. Someone told me that

Lyme can affect my voice like this. Then I read about unilateral vocal

paralysis that can be caused by Lyme, but I haven't explored a diagnosis for

that. I'm just curious to see if anyone else knows about this or has

experienced this.

Thanks,

Janet