swallow and voice problems---any thyroplasty experiences?

[Cubabikermark]

Hey All---

New here . Has anybody heard of more serious swallow and voice issues related to damage to the nerves feeding the throat and vocal chords? It is somewhat rare it seems ...

The worst part of my recovery (after my April 26 surgery) was my total inability to swallow for 4 months and a very weak voice that remains bad today. I had to have a feeding tube cut into my stomach, thus my recovery focused as much on swallow and speech therapy as on balance or facial issues. I lost about 30 lbs---that is not common, is it?

And now they are saying my voice will not come back without a thryroplasty procedure. After brain surgery I guess it doesn't seem so bad ... a quick procedure and i can talk the next day, or so I'm told.

Anybody have a thryroplasty? I foolishly went into the brain surgery assuming the best-case scenario (8 hrs surgery, week or so in the hospital, maybe a little off balance). Instead it ended up being 30 days in hospital after 14 hours of surgery, and I came out unable to walk for a few weeks ... and all teh problems I anticipated seem to be taking a year rather than two months to get better.

the good news is that my face has started to move (after 6-7 months) and hopefully the eye will follow. Balance is up and down ...

And I guess I am lucky. I never had a truly tough face problem----just couldn't smile, and the droopy lip when talking. All accentuated by the voice, so getting that sick voice fixed will be a big step back towards 'normal' for me. Feeling truly strong and having true balance on my bikes may come with work ... always hopeful.

sorry for blathering on but as many of you know recovery and anxiety can dominate us---it's all I really think about, and I suppose that will be that way till I really start to feel good. It's so slow, isn't it----


so has anybody had any experience with a thyroplasty? I am again assuming a best case quickie procedure with few complications 


Mark 39YO
Bethesda MD
3.5 cm tumor removed
SSD; paralyzed vocal chord
and swallow muscles; PEG tube
etcetc

[jerseygirl]

Mark,

What you are describing is not common nowadays but it still happens and I am sorry it happened to you. I also had swalllow problems, lost about 30 lbs and was over 30 days in the hospital back in 1988. I am happy that your swallow has returned. Mine did at about 2-2 1/2 months. As for voice, it is hard to tell because I was in such a pain that nobody heard me speak for weeks. I expected it to happen the second time and was prepared with oatmeal, yogurt, whey protein, etc - all the soft but nutritious foods that were easier to swallow and get down. I am awfully glad it did not happpen last year!

I know nothing about thyroplasty, thankfully, because I did not have it. I was just wondering if it is trully necessary at this point in your recovery. From my experience, I really believe in regenerative powers of the body and hope that you will continue to improve and get your voice back. Once done, most medical procediures cannot be undone.

Best wishes,

           Eve

[tony]

Sorry to hear of your troubles
and yes thankfully your condition is quite rare
The whole voice/swallowing problem is a bit more common
with the NF2 version of the condition (more, and sometimes larger tumours ?)
If you want a private chat with The NF2Crew I can put you in touch
Best Regards
Tony

[Meagan]

I HAD THE SWALLOW ISSUE AND HAD FEEDING TUBE....i had surgery year ago today and couldn't eat until end of March...feeding tube in nose then put in stomach...i couldn't find anyone else going through this as it is kind of common but not very....my voice has improved with my mouth moving....so after a year things are moving....can't do a open mouth smile but closed mouth is pretty decent....

i too spent 2 months in the icu and had all the worst case scenarios....so i have been with you...but my doctor told me not to do anything with surgery as we both have been through a long procedure and all will come back...eventually

[OMG16]

My son had similar problems and he had voice lessons for singing.  You may want to give it a try to see if it works for you.  Since my son was only 16 he had pediatric Doctors and they come up with very unusual therapies.  I do not know anything about the surgery you are talking about however there are always risks to any surgery.  So you may want to try different things and get more than one consultation with this medical problem.  Take care and let me know if you need additional info regarding the voice lessons.  16

[jerseygirl]

Mark,

One tidbit of info. I just remembered a show I saw about an opera singer who compalined that she cannot GAIN wait. That is not my problem and is not generally a problem in our society! Anyway, she said that all opera singers are encouraged to be overweight in order to have their best voice and no matter what she ate, she had trouble doing that. The singers use muscles for breath support and endurance extensively, so the idea is that when they gain weight, they gain both muscle and fat and their breath support improves greatly. I know when I don't eat calories for whatever reason, my voice goes down in intensity and quality. People don't notice the difference, it is just that I am quieter that usual. Side effect of my first AN surgery? Maybe, but it is impossible for me to tell bacause I was living with this huge tumor for very long while I was young so I do not know what my voice would have been without it.

          Eve