I had my surgery five years ago (as of July 30th).
XRodRR said:
Great feedback on your procedure. I'm glad it worked well for you. If you don't mind me asking, how long ago did you have the MVD?
KayJay said:
I had a very successful MVD five years ago, but prior to that I had problems with projecting my voice as well. If I tried to project, I would instantly get an attack of severe, lancinating pain. My voice also seemed hoarse when I would talk quietly, but that may have just been my efforts to keep my voice volume down that caused that. I went through a similar cycle of flareups and remissions until I had a very prolonged flareup where my medications no longer had any positive effect and my inability to swallow prompted me to seek out a surgical solution. Since my surgery, I have had absolutely no GPN pain or dfficulty with speaking or swallowing. I wish I could offer you a solution to the speaking problem without surgery, but I can't. I would recommend MVD, though, if you get to the point that GPN makes everyday life unbearable, as long as you're a candidate for it, that is. I wish you well.
I feel extremely lucky that I've done so well for so long, especially after hearing so many stories of unsuccesful or only partially successful surgeries. I have a feeling, though, that many of the people who may have had successful surgeries move on with their lives and do not return to this forum very often, if at all. I check in periodically to see if there is a particular post that I can contribute to and try to relate my success story occasionally to let GPN sufferers know there is some hope for recovery from this awful condition. I consider every GPN pain-free day a blessing.
XRodRR said:
Wow! That's great that you've been symptom free for so long. Very encouraging! Thanks for sharing.
I have a lot of problems projecting my voice. This seems to be permanent even when I’m not having a flare up. I’ve become very soft spoken, to the joy and relief of my husband and sons. As time goes on, I also have some swallowing issues - sort of like my swallowing ability is much better on my good side. I also notice that the bad side of my throat is atrophying - kind of collapsing and sometimes hard to swallow so no big bites for me. Yet I can still eat lots of fattening stuff, unfortunately. Hang in there everyone!! My misery loves your company. So much less alone.
I too have thought of having a card to hand people. When this first happened I walked around with a notebook to write in and even tried to learn sign language. I quickly realized that 1. My town was small enough that everyone knew my problem and would work with me and 2. Since it was so small there weren't enough people who could use sign language.
I hate, HATE having to speak on the phone when I have a flare-up. I will usually ask someone to speak for me instead.
Wow. I wasn't at all confident I had this condition. But the more I've read here this has been exactly my life. I actually wrote out an emergency paper and carried it in my pocket in the event people would try to talk to me prior to finding some meds that gave me at least emergency voice use.
I'm a guy, and got this in my early 20s. One of the things that really freaked me out, was to the park one day, trying to do something good for myself, and another guy about my age said "hello." so I waved, and smiled and kept walking. I thought things were cool, and then the guy turned around, and started screaming at me. "You think you're too good to talk to me!?!? I'll show you respect!" At the time I could barely whisper, it was so painful for me to speak, I had barely spoken in a year. And obviously I'm not gonna win a fight with another 20 something year old guy. All he'd need to do is just touch my throat near the base of my tongue and I'm down for the count. His girlfriend pulled him away.
When you cant speak and battling constant pain you're totally helpless. I eventually stopped going out alone. Negotiation is your first defense. Something as simple as not saying hello could ignite violence.
I started using the phone more when I got the meds that brought things down to a bearable level. I still hate that torture device. It's like you're trapped. At least they can't attack you through the phone line, physically.