Speech impairment

amr2662

I am 14 years out from NPC treatments. Over the last 2 years my speech as progressively worsened to the point that it is almost impossible to speak on the phone.
Background:
18 months after I finished radiation (MD Anderson) I woke up hoarse - it turned out to be a paralyzed left vocal cord attributed to the late effects of the radiation treatment. At that point my voice was raspy but not too bad.
Unfortunately the late effects of the radiation have continued and now my tongue, lips and cheek muscles on the left side have all suffered nerve damage and it makes it very difficult to speak. The other day a nurse mistakenly asked me "how long it had been since I had my stroke?" I told her I never had one. I had a feeding tube put just over a year ago since I can no longer swallow much.

Is anyone else had similar speech issues? I could use some suggestions on coping and any accommodations. I am still working and manage to get by with email for the most part but it is frustratingly difficult even on the "good" days.

Meredith

Tonsil Dad

Sorry.
I can't offer any advice on your problem, but I would like to applaud you
on being a 14 year survivor of this horrible disease. There are many good
people on here and hopefuly someone can answer you concerns.

God bless
Tonsil dad,

Dan.

Skiffin16

HONDO
You might try HONDO on here....

I'm sure he is NPC, also 10+ year survivor, with a multitude of after effects. Most as a result of recurrence, but again, he's went through the mill and will chime in soon I'm sure.

Best,
John

longtermsurvivor

have you tried any of the
text to speech programs? that would at least solve some of the telephone problems. There have been others here with this problem. Perhaps they willndrop by to comment for you. Congrats on your survivorship.


Pat

ToBeGolden

Alternate Speech Methods
I am a total laryngectomee, which means that my vocal cords have been surgically removed. There are three methods for restoring speech, but only one would be appropriate for you (in my opinion). That method would be to use an electro larynx.

An electro larynx is a vibrator which you put against your neck. It produces a very robot like voice. And it takes a lot of practice to get the positioning down correctly. You will need some method, such as an old-fashioned tape recorder, to listen to yourself.

When I have the electro larynx positioned properly, people can understand me. I am uninteleigable when the device is out of position.

Before you purchase such a device, you should see a qualified speech therapist, who has experience working with laryngectomees. He/she may have a much better solution. Moreover, he/she can properly hold a device against your neck and you can tell the BEST it would sound. Get a recommendation for a speech therapist from an ENTdoc.

To be truthful, the electro larynx is NOT my primary means of speaking. I use esophageal speech. Essentially, I swallow air and burp to talk. This is not entirely accurate, but enough to get the idea. I use the electro larynx when I need to use a big word, since I have trouble with words longer than two syllables.

Finally, the electro larynx is NOT cheap. And once again, be sure to consult a professional before going forward.

amr2662

Speech to Speech
Thank you all for your post.
I did run across this information on the internet today about Speech to Speech. Maybe I will try it out. Has anyone used this?
From the FCC.gov website:
"Speech to Speech (STS) is a form of Relay Services that provides Communications Assistants (CAs) for people with speech disabilities who have difficulty being understood on the phone. STS CAs are trained individuals familiar with many different speech patterns and language recognition skills. The CA makes the call and repeats the words exactly. Individuals using STS include those with cerebral palsy, Parkinson’s disease, a laryngectomy, ALS, stuttering, muscular dystrophy, stroke, and other conditions affecting clarity of speech. Call the number in your state and ask the CA to dial the number you wish to call."

I am not sure if the electronic larynx would help me because my problem is more with the articulation and not the voicebox. I can make the sound but can not pronounce. My tongue barely moves.

I think my problem is that I am "trying to be normal" but I just am not anymore.

It is a great thing that I survived, but it sure isn't easy.

MW

Delayed Side effects Speech Impairment

I had my first NPC treatment in Jun 2011 rad and chemo. My cancer came back went to both of my lungs in Sept 2014. I am currently having chemo

every two weeks and two weeks off. About a month ago I was having problem swallowing. Now I am not able to move my tongue therefore I am having

difficulty speaking. I had a x-ray of my throat while I was given food and water and the test result shows food and liquid is going down to my lungs. Now I 

will have a feeding tube put in to help me eat and drink.  The doctor says is a delayed side affects from rad. I am trying to see if anyone else have this delayed reaction.  

amr2662

MW said:

Delayed Side effects Speech Impairment

I had my first NPC treatment in Jun 2011 rad and chemo. My cancer came back went to both of my lungs in Sept 2014. I am currently having chemo

every two weeks and two weeks off. About a month ago I was having problem swallowing. Now I am not able to move my tongue therefore I am having

difficulty speaking. I had a x-ray of my throat while I was given food and water and the test result shows food and liquid is going down to my lungs. Now I 

will have a feeding tube put in to help me eat and drink.  The doctor says is a delayed side affects from rad. I am trying to see if anyone else have this delayed reaction.  

The gift that keeps on giving....

MW,

Sorry to hear of your recurrence and troubles.  The feeding tube has made my life so much easier.  I had struggled for so long trying to eat enough calories to function.  I have had a Mickey button (Low profile tube) for over five years now and it is just routine.  For me the speech issues are harder to deal with psychologically.  I use a "Boogie board" to communicate with strangers.  I also use TTY service on my computer and cell phone to make phone calls but I find this awkward so I only use it when I have to.  My friends and family mostly send text and emails.   I have been dealing with this for a long time and unfortunately there are not really any perfect solutions.

The Oley Foundation is a great resource for feeding tube information and support.  There are several folks on this forum and the Oley Inspire forum that are in the same or similar situation.  Sometimes it helps just knowing you are not alone.