No voice

    • Anonymous
      June 28, 2008 at 10:13 pm

      Since GBS, 13.5 yrs. ago, my voice has been “more soft” many times but this winter/spring has been very “trying”. I would literally lose my voice for a day or two. But now I’ve gone way beyond that! This time it’s been gone for a month. My doctor is concerned that this may be how it stays. It makes me sad to not be able to talk with my elderly parents in Canada and not being able to talk with my Jacob (4 1/2) and Eli (2 1/2) who live way over in Maine 🙁

      Has anyone else experienced voice loss?

      What did you find to be the easiest way to communicate with others?

      Thanks for sharing any knowledge or advice that you may have.

    • Anonymous
      June 28, 2008 at 11:33 pm

      Hi Judi
      I don’t have GBS but do have CIDP and my voice has been affected ever since my first attack 5/6 years ago. I don’t know if I am of much help as I still have a voice (weak, but still there). During my first attack I lost my voice – that lasted a couple of weeks – even now it will still just fade away to a whisper (usually when I am fatigued). I have found I email family and friends now instead of using the telephone – except my Mother (she’s 90) who doesn’t know how to use a computer – so, I will ring her when I am feeling less weak – as I usually have to repeat what I say a few times as Mum is quite deaf.
      I also, order things (items for the kitchen, etc) on-line more often now – So everything is done on the computer.
      We don’t realize how reliant we are on our voice for communicating. Even my dog ignores my commands (because of my soft voice) but I have found a way around that – with a bribe of a biscuit – he will come running to me as soon as he knows I have one in my hand!
      I have also found I am more of a “listener” now than a “talker”.
      Best wishes

    • Anonymous
      June 28, 2008 at 11:43 pm

      I am 8 months with GBS and have the “more soft” voice since GBS. At times I will start to say something and the words will not come out, after clearing my throat and trying again the words come.
      I have never mentioned this to my Dr., as I thought it was a dry mouth caused from all the medications I am on. I constanly take drinks of water to get the moisture in my mouth.
      Sorry I can’t be of much help but you have given me reason to bring this up at my next Drs visit.
      Your loved ones could see you on a web cam. I’ve never used one but you may want to give it some thought.
      Hope your voice comes back so you can talk to those loved ones.

    • Anonymous
      June 29, 2008 at 9:27 am

      Have you seen an ENT doctor? This would be good to do. He/She could look in the throat and see if the vocal cords are moving to see if it is a problem with the nerves going to them. Do you have the Miller Fisher variant or other neck/central problems like trouble with swallowing? Are there any signs that this is recurrence of GBS in this type of form? There are other things that can cause a person to lose their voice–like a polyp on the vocal cords. I think that this is more likely to happen if you have strained to talk for a long time. Since communication is so important, it is worth going to see someone with a lot of vocal experience that might be able to know of options.
      The webcam is a great suggestion and you could type and someone read to them at the same time. Sign language is also a thought especially for immediate family. It is really beautiful language and it is pretty easy to learn to sign. It is harder to learn to read sign, but you would not really need that since you hear fine. People have started to teach children with speech delay to sign (like kids with Down’s syndrome) and it is great at work to see them communicating. People tend to think of sign language as only for people who are deaf, but it is useful in lots of other situations. The one disadvantage of it is that full “speech” (as opposed to isolated signs) takes a good deal of upper body energy. It is too hard to me to do for about a year after GBS, but as strength returns, so is this!!

      WithHope for cure of these diseases that bother us in so many ways so long.

    • Anonymous
      June 29, 2008 at 11:52 am

      I have the same issue but let me share what I know to be my problem. I have seen an ENT and he gave me some great feeback.

      I was intubated for over a week before having a trach done. As a result, I have vocal chord damage with one chord that really does not work at all. The vocal chords form like a V and come together when you speak. One of my chords just hangs there, like a limp noodle! As a result of it not working, there is constant air that excapes which makes it hard to project, so my voice will be quiet and soft. I personally have to work hard some days to speak. No one realizes that, I think. But talking for me is hard work most days. He also told me that I should never force my voice as doing this can cause calluses to form on the chords and when there are calluses, you again get air escaping.

      I try to rest my voice each day and will spend some time not speaking at all. I am a teacher of sorts in my profession, so have to spend the day talking. My employer got me a voice amplifier so I don’t have to strain my voice, and in the evenings, I don’t talk at all other than when my husband calls me. The remainder of the time I just rest it.

      I also get a lot of phlegm that catches on the chords and so I am constantly clearing my throat. This is not good for the vocal chords either my ENT said so I try not to do it but it is hard and often I clear my throat without thinking.

      If I were you, I would see and ENT to see if there is some issues that could be resolved. There could also be some issues with allergies as well. For me, the only solution is surgery to give me an artificial vocal chord but the dr won’t do it because the risk of losing my voice completely is very high. I have recently heard you can get a botox injection into the chord to puff it up but I am not a great believer in putting stuff in my body that I don’t need. So I am passing on that option for now….

      Hope this helps you a bit.