So its been awhile since my last update... heres the latest...
SO I had the radiation and did pretty well afterwards. I have woken up everyday since with a terrible sore throat and I get tingles in my neck from time to time, but I am overall doing okay. I have been on 150 mcg of Synthroid for 3 weeks now, and I was so HAPPY I got to stay on cytomel for 2 weeks which really helped to bridge me and get me outta that terrible hypothyroid place!!
Sadly as all my other symptoms started to go away, my voice kept getting worse and worse. I got a follow up swallow study which showed that nothing changed, I am still paralyzed on the right side. Speech therapy gave me some exercises to try and said to practice and work on my breathing and I should be on track to go back to work... YEA...
THEN...
My voice went to a whisper. I would say maybe 3-4 sentences to my husband and NOTHING MORE... and as the day went on my voice when I would try to talk would be more breathy and make me dizzy and be a whisper... and it was like it took more and more breaths and I got very little in return. Its been that way for over a week now. No amount of voice rest helps. I was more concerned so I called speech and they set up an ENT (ear, nose and throat appointment) and told me to go back on voice rest...
AND TODAY
Went to the appointment, put the camera back down... turns out there is some muscle atrophy and my right vocal cord is bowing back a little more than it was previously making the space between my vocal cords a bit bigger and although the left cord is still working extra hard, it is not able to compensate enough and thats why I am losing more air and without them touching my sounds are mostly gone. Hence why I get dizzy when I do not talk that much because I stop to take breath so often I am hyperventilating a little. WHICH IS VERY FRUSRATING... cause it makes me sick if I talk too much.... so now i get to be frustrated that no one can hear me, no one can understand me and now i get fatigued and lightheaded with each conversation i even attempt to have! ARG...
SO he put me in for an injection where they will numb my skin put the camera up my nose and inject a synthetic solution directly into my right (and if i can tolerate it- Left) vocal cord. The idea is to "beef" it up a bit so it moves closer to midline and therefore the left side can make more contact and give me some sort of voice. It is only TEMPORARY... and it can wear off in a few weeks to a month- may last longer depends on how quickly my body resorbs the material. It does NOT affect the healing process. The idea is to give me a better quality of life until my nerve wakes back up...
IF my nerve is still paralyzed by 6 mo post-op (September) then they will talk about more permanent surgery to fix my voice.
Emotionally, not having a voice, then having it come back a little, then going to nothing is the most frustrating thing ever. Especially when everything else is healing and getting back to normal. If this is the new normal, spending one year of my life in a whisper while trying to provide for my family and not go absolutely insane because my dog can breathe louder than I can talk will be the biggest challenge of my life.
There are good and bad points from all this...
1) I had a better voice, that means there is potential for it to get better- the radiation could have caused some inflammation which is contributing to this and if its inflammation it will get better.
2) This will give me a chance to be heard and after over 2 months of whispers and strain and agony I would go through this just to get a chance to say I love you to my mom and have her hear me without saying "what"... or at least it will let me remember what I am supposed to sound like cause these days i cant even remember...
3) I could be paralyzed, we have to give 1 year for nerve to return before they call me completely paralyzed, but if i am then more surgery is ahead. Good news is from what i read the surgery can get me completely back to normal so there is hope there too...
4) I gotta figure out something because if I cant talk a few sentences a day NO WAY i can go back to doing my job and I worked too hard to get here to give up and say oh well... Hell i m studying daily to make sure the material is fresh in my mind. So there has to be a way to get me back to work and communicating is a huge part of that.
5) He did say that he has had patients who go their voice back within the first year... so i still got time... its only been a hair over 2 months...
6) I had cancer and it did spread a little and now I dont- and that is a blessing. Just a reminder to everyone that you NEVER ignore your health!! Get checked out and be an advocate for yourself! I could have spared my voice and sanity all this stress if I would have had this looked at in PA school...
So in closing, I am glad to be feeling mostly normal but i struggle with the voice getting worse. I was sad before and at least then I was audible, but now I just feel more defeated. Its like one thing hitting after another. I was very down most of the week, but I did get some answers which explain what is happening to me. That helps me to process. I am hopeful for this injection and until proven otherwise- i still have hope that its not permanent. I go to bed and dream that somewhere spontaneously I open my mouth and I can TALK- hell sometimes its a full blown glee song... its a great feeling- at least for the first few seconds until I wake up... so we shall see. Im waiting for them to schedule the injection then for 7 days ill be worse than i am now, then i should be able to talk... however brief it is...
So until next time, the journey continues. In the meantime I am going to embrace my listening skills and looking to pick up sign language...
Thanks for everyones support and God Bless
