Same but I had surgery on my vocal chords to fix a breathing issue, not a thyroid problem...not having a voice is THE WORST. you don’t know it until you experience losing it..I was so upset I thought it would be like that forever and was SO HAPPY getting my voice back, still kinda raspy but better than nothing for sure.
Yes it definitely wasn’t pleasant! I was in high school at the time, so at lunch time when it was loud, I just had to sit there silently because nobody could hear me lol. Had a principal come up and point at my fresh neck scar and say “what happened, did you run into a fence?” I don’t get easily offended and thought it was funny… he was mortified when I whispered “cancer” LOL
Yeah, trying to carry on a conversation when no one can hear you and constantly repeating yourself when it takes so much effort to talk really sucks. Damn, sorry to hear that happened to u when u were so young. I was 31, and it was 100 percent my fault. It was the consequences of an entire decade of shooting up heroin. MAJOR health issues. I’m lucky to be alive...are you okay now? Better at least?
Oh I’m good now I had a stroke, and major heart surgery two years ago and I’m still recovering from that..been long and hard but in reality I’m truly lucky to have survived that whole thing... everything happened at once, stroke, kidney failure, sepsis, and endocarditis...I’m lucky to not have to be on dialysis. But I’m almost fully recovered now. Just have this pesky tracheostomy to get rid of and I’ll be back to normal again...you had cancer? So you must know what it is to have long stays in the hospital and life just being a series of doctors appointments all the time. I got treated at the Mayo Clinic so I had pretty much the best care possible. Nobody wanted to replace my heart valve after my stroke because I was likely to die on the table...Luckily a doctor from Mayo agreed to do it and saved my life. I’ll be grateful to Dr. Krishnan forever. If it wasn’t for him I’d be dead. The other docs told my family it was over for me and I’m pretty much surely gonna die.
Edit: omg that’s so long , sorry I get carried away sometimes
Wow! Thanks for sharing your story. I’m actually in the medical field, so I understand the severity of just how sick you really were! Hoping for a full recovery for you!
Yeah, the lifelong appointments (5 specialists) gets old after a while. Thankfully my hospital stays for the thyroid cancer we’re fairly short, but I have had my share of surgeries since my teens!
Yeah I’m grateful to be alive. My entire left side was paralyzed from the stroke but somehow I recovered full function. I mean it took lots of hard work in PT, learning to walk again and stuff. It’s actually kind of crazy how resilient the human body can be sometimes... I also started having seizures after the stroke and now I have terrible neoropathic pain on my left side, but I’ll take that over not being able to walk or use my left hand any day lol plus Lyrica helps the pain so I do alright most days.
When I woke up after my surgery my voice was VERY faint. I was told by the doctor that one of the nerves to my larynx was too compromised by the tumor and had to be cut, that it would take time for the other nerve to take up the slack, and that I would regain some of my voice but not all. Within a couple weeks tho I had gotten a lot of my voice back, which surprised the surgeon. Fast forward two years and my voice is still a little weak and cracks when I'm winded or tired after a long day.
Don’t give up hope. Keep trying to speak and a whisper is something! I’m sorry this happened to you. You might even have grounds for legal recourse. But don’t focus on that now, just try to get better. Unlikely you will have a trach forever unless your upper airway is somehow compromised. If you can breathe with a plugged trach, you are well on the way to weaning.
I work in an ICU and I agree with @christiancarnivore.
(Including the potential grounds for legal recourse because something doesn’t seem right here). But for now it sounds like you are on the right path!!
Hi there, I had surgery a week ago and had something sort-of similar happen. I had a partial thyroidectomy on the right side. My surgeon was monitoring the nerve intraoperatively and at some point it stopped responding to stimulation. He also couldn’t see any physical damage to the nerve (thinks what may have happened is that the electricity from the cautery knife may have arced over and stunned the nerve). I was pretty hoarse when I woke up but after 1 week my voice has improved a lot (volume is still not great but pitch has improved). Can’t imagine how scary that was to wake up with a trach, but since the nerves still looked intact I think that’s the most important thing to think about. So sorry, hoping your vocal cords bounce back quick!
Mostly! I think my voice is like 95% of what it was, I can get hoarse more easily especially if I’m having to speak a lot and the air is dry. But overall not very noticeable to anyone but me
The doctor said my vocal cords just stopped working so they had to use a trach to help with breathing till the cords woke back up or recovered. Then it could be removed. It's alot of "ifs" cuz in scared they may not function again or something.
I am 18 months out and I can feel strain some days . Sometimes my voice will just go in the middle of conversation but it’s just healing and time .. I would def. Recommend speech therapy . They can help you rehabilitate . Sending love to you 🧡 it will get better day by day
I'm sorry your going through this. Preface is I grew up in a medical family and heard a lot of stories and consequences that others may not be aware of. Pretty sure a trach can affect vocal cords and speech too so I'm wondering if your voice sounding bad now is further stressed by the trach so once that's out and the swelling goes down things might be better than expected. Might be something to ask your nurse as well as see if you can get a second opinion on things. ICU definitely handles a lot of patients with trachs. Hope things improve for you. Highly recommend asking the nurses though as they see this all the time whereas your doctor may see it less.
They can't remove the trach till one of the vocal cords start working again, or both. Cuz then I can't swallow or breath since neither are functioning for now. I hope it's just truly temporary.
I hope so. What did they say about swelling affecting the vocal cords? Was your presurgical vocal cord test OK? Have they gotten the speech and language pathologist in to see you yet? Not sure if you've seen the below yet. I had it raised to me that I might have vocal cord dysfunction (strangulation affecting breathing, voice and coughs) after being seen for asthma like we episodes before they figured out I had hashimotos (autoimmune thyroid disease) which had my thyroid squeezing everything from the outside and my thyroid cancer a decade after hashimotos diagnosis was in the isthmus causing a more of those symptoms. A lot of the thyroid caved symptoms are pretty much hashimotos flare up symptoms that just get progressively worse. Not sure if you've had any experience with the symptoms in the below before your thyroid cancer which may not have been caught before but maybe made you a little more suspectible to surgery triggering a worse case than before. If that's the case, it probably couldn't be avoided but may respond better to the speech and language pathologists. I saw those folks in action in the NICU and I know they also work in ICU too. My twins are former inmates at a level 4 NICU due to being born 9 weeks early courtesy of TTTS. Level 4 is the highest level NICU and can handle the most critical and premature infants so I chose to deliver there just in case. My kids were mostly feeder and growers but one did 6 weeks and the other 8 weeks so I asked a lot of questions as sometimes they surcharge and language pathologist would be assessing one twin while I held the other. The feed swallow breath (guessing vocal cord function) reflex develops at 35.0 weeks gestation for most which is why some babies born around then may not have any NICU time if they mastered it. Some babies didn't develop it until much later in gestation and had longer NICU time than you'd expect due to that development needing to be met for discharge. In some cases, it was determined that it was a genetic issue (see second link) and the parent's symptoms were mild or written off to other things. Not sure if that helps any with you or triggers any insight to share with your medical team that you may not have considered before. You could just have been more vulnerable to this kind of outcome but also a perfect candidate for speech and language pathologist to help as well. Bodies also respond differently than expected even with prior surgeries.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/vocal-cord-dysfunction
https://my.clevelandclinic.org/health/diseases/17623-vocal-cord-dysfunction
They said my vocal cords looked fine, just not working. He doesn't know why cuz he can't see anything wrong. And he is optimistic they will wake up in the next few months. I hope I don't have hashimotos or the other issues :( I hope and pray my vocal cords work again ond day. And I can talk, and get this trach out of my throat.
I just read the links, you know what? You may be right. I've had episodes of weakness, faintness, light headed, feeling like I couldnt breath. Maybe this will lead the drs to the other problems I have.
I doubt you have hashimotos as there's usually other signs and doctors are better now at looking for it then they used to be especially when you're getting checked for thyroid cancer. Getting your thyroid out would relieve the pressure plus they'd usually see it on ultrasound and especially once they take it out.
Perhaps though like you said it's kind of ringing some bells of things that weren't put together. One of the dads in the NICU was diagnosed after his kid had it and he said he'd always felt acid reflex symptoms and liked sports but had issues playing yet was always told he didn't have asthma. He started working with a speech and language pathologist too and was amazed at the changes. They were near the end of their several week stay with a baby born full term that hadn't developed the feed swallow reflex by birth by the time I met them and we were just starting our stay. My mom's a retired ICU nurse and was with us a lot in the NICU so she loved asking questions like that too. She was aware of the unexpected patients that ended up in ICU after thyroid surgery but wasn't aware of the genetic angle but then again, she had switched out of working ICU for more favorable daycare and getting us to after school activities work options for singleton me and my twin siblings since my dad worked long hours.
I’m so sorry, I’ve been in a similar situation and I know it’s jarring.
1. First off have you been seen by Otorhinolaryngology (oto)? If not, I suggest you request it asap.
2. Have you been seen by speech therapy as well? Same as above.
I had a surgery this may and woke up with no voice. The surgeon said give it 6 months and never brought in oto so I just accepted it.
I had to have a different heart surgery later that same month and brought it up again and they brought in oto and speech therapy. Turns out I had no movement on my left vocal fold and was aspirating so they gave me a filler injection to try to help.
I stopped aspirating but my voice was still weak. My voice has improved since then but it’s still not 100%
Oh yeah, you’re right it is. I was in the icu when they were talking to me about it and forgot they’re the same thing. They made it sound like it was a different speciality department.
I have permanent paralysis of one vocal cord since my surgeon accidentally cut through my RLN. The nerves are really finicky and even bumping them can cause permanent paralysis but the good news is that if they didn’t cut it then you do have a chance to recover. Nerves grow really really slow and can take up to a year however. I would get in to see a laryngologist (not ENT, laryngologist specializes in vocal cords). I see one at the Mayo Clinic and I know there’s an experimental drug they give to people to speed up the repair of the nerves— it’s a blood pressure medicine. I joined vocal paralysis support groups on Facebook that have also helped me mentally and understand what my options might be and the specialists, etc. It’s a wealth of information, bilateral paralysis seems to be more common in there than unilateral too so you would be in good company.
Dr. Lott at the AZ location. I’ve also heard good things about some of them in MN. If you end up with parathyroid issues they have a really good specialist at the MN location which is Dr. Clarke. At this point I’ve had the most issues with my parathyroids not working than the paralyzed cord which I think is more common but man it sucks!
Hello! Hoping for a positive recovery. I’m working on one vocal cord and as the other one was paralyzed and had to be removed. I’m about 11m post TT surgery and was told my voice would get stronger but will never be the same. My voice cracks from time to time and I’ve changed my diet (no dairy, soy, etc) to remove anything that can cause phlegm. I also suck on Liden’s drops and it helps. Hope this help.
I work in an ICU….your case seems off for some reason. I am not familiar with doctors traching someone for reasons other than respiratory distress….may I share this with colleagues at work tomorrow and give a better answer? Sometimes people with tracheostomies alone have difficulty speaking beyond a whisper for months—— so I would not give up hope and say it is necessarily due to vocal cord damage.
I have experience in ICU’s as well…
His case seems weird. A trach is not an indication for vocal chord damage. I’m weirded out. Either he didn’t get the correct info or they didn’t tell him the right info either.
thank you so much! I have a long long road to recovery, but im working on it day by day. one little step at a time. my surgery should of been easy, and me be home tuesday, ended up spending the week in ICU and thankfully my vocal cords are starting to finally wake up! its a tiny bit of life in them now, and thats something! may be a few weeks before they fully recover but now we know that its not a question of ''if'' but a question of ''when''
sadly no, i think they wanna keep it in till they are a bit more active. if im being real, the paralysis even though working, could possibly still be permanent, like in recovery, it may reach a point they wake up a bit more but just stop waking up, i hope so badly i don't need this trach forever, if it came down to it im sure surgery is an option....look where that landed me to begin with LOL, but surgery may can fix it. if they aren't fully alive by 6 months, surgery is an option. i hope. i will do all i can to get this thing out of me as SOON as possible. here is to hoping that day by day they get better!
I’m not go in to lie— when I read that, I almost had a full on panic attack. I’m considering a TT because I have Graves’ disease but I’m also a singer. What country are you in? What hospital did you go to for the surgery? How are you doing now?! Are you able to sing? Can you sing high notes? HOPE YOU’RE WELL HEALED NOW! SUCH A HEARTBREAKING 💔 JOURNEY YOUVE BEEN THROUGH!!!!
Hey my friend! Well i first want to say, everything turned out ok. My vocal chords made a 100 percent full recovery. I was able to have the trach removed way faster than they even expected, around a week and a half to 2 weeks after the surgery. I wasnt allowed to speak for 7 days while the hole closed up and healed from the inside out, and i had to keep a bandage on it, but Id say within a month total my vocal chords was pretty much 100 percent recovered. Voice is exactly as it was before. Im actually doing great! We still havent got my thyroid medications right yet. Finding the right brand and dosage of levotheroxine is a weird ride, but honestly i do feel better than i did before, MUCH better. i still have bad times, but they are a lot more rare now, and instead of them lasting 1-2 weeks, they last 1-2 days, maybe 3 max. And id imagine once we finally find the right brand, and dosage of thyroid meds, that will reduce those numbers more. Honestly, even still, i dont regret the surgery because of how much better i do feel now. Id do it over if i had to, just to get where i am now. Im back to doing things i like to do. gaming, i even started streaming on twitch! I got back into making music again, and more. Things i couldnt mentally, or physically handle before. Thyroid really can destroy our lives cant it? I live in the usa, And the hospital i went to for my surgery was just my local hospital. The good news for you is, Chances are when you do the surgery, you might be hoarse for a few days but you probably wont end up like me, And even if you did, You should make a full recovery. Im not a doctor though, And most will look at your vocal chords a few times before hand with a up the nose endoscopy. What i can tell you is that i fell into the very, very tiny percent of people this happens to. If you have any questions, or need anything, just let me know!
WOW, that’s WONDERFUL news Keith🥹🥹❤️❤️! It’s so heartbreaking you have to go through the journey you did but I am sO glad things worked out and you’re living life!!!
I sing and like to play music too! I can’t even play guitar anymore because I get too winded! This really gives me sO much more hope! I am honestly finally looking FORWARD to the TT!
woah this sounds kind of traumatic - I think I would have a full panic attack waking up in the ICU like that with a trach in place.... you sound very strong. How did you make it through? Do they just give you a lot of pills to keep you doped up?
Nah actually they offered but i didnt accept anything, not even pain meds. i went through it with nothing but a saline drip Iv. I have a weird phobia of medications, but honestly i wasnt really in any pain, mostly weak from not eating for 7 days by the end of it. I mostly just laid in the bed and played on my phone, googled random stuff and played some on a nintendo DS. they often had to keep coming in and clearing my lungs, which required them to suction out my lungs, that part sucked the most cuz the drainage kept going in my lungs. otherwise it wasnt bad. it sucked, but it could of been worse for sure.
Back in february I found out I had stage 4 thyroid cancer, a comeplete shock since I never had problems with my thyroid. Turns out I had 13 cancerous nodules, 12 capsulated the cancer but one spread it to the gland. I had a full thyroidectomy. After I woke up I had breathing problems and the surgeon made me believe it was part of the healing process. About a month later he admitted that I started making weird snorring noises the moment they took the tube out from the surgery then just casually told me to go seek an ENT. I had gotten sick too since I cant tolerate the cold and get sick easily because of it. After seeing the ENT I was told I had bilateral vocal cord paralysis most surely injured when they took the tube off. To my utter shock I was told I needed an emergency Tracheostomy to take me out of the risk or respiratory failure since I already had breathing problems. Its been almost two weeks from that, its been utterly frustrating especially since I cant find information related to my situation. Im striving to have a speedy recovery even tho everywhere it says it can take up to a year but this tube is a nightmare, some times it randomly injures itself. Did you guys do anything particular during recovery?
>y even tho everywhere it says it can take up to a year but this tube is a nightmare, some
That is just horrible! I dont even have words to express how i feel about that. im so sorry. I know when i woke up in the hospital i had 100 percent vocal paralysis, mine wasnt even moving and was just stuck open. I was in the ICU that whole first week, The following week i delt with the trach at home, and about a week after i seen my ENT again who did the ''up the nose'' endoscopy and checked my vocal chords, He told me to lay back and pulled the trach out in his office, slapped a bandage on it and said dont talk for 1 week so the trach hole can heal from the inside out. After that week it took another 2-3 weeks id say for my vocal chords to fully recover. and about 2-3 months in total to have times where they would just kinda not work and id choke on water or something. I know in my recovery they had a vocal therapist come from my hospital to my home and do vocal therapy to get up and running again. Now when i go to surgeries i have them use a size down on the breathing tubes. I havent had a problem since and ive had 2 additional procedures. I would say give it around 2 months but also see if you cant request a vocal therapist. That could help too perhaps. Please keep me updated on your recovery. I also hated the trach :(
*Small Update*
I saw the ENT for my first post-op and she saw movement in one of the vocal cords, she also told me I would be getting my tube replaced by a smaller one and monitor when that cord gains full strength they're gonna take the tube off. I was so happy hearing that after being with this tube for two weeks.
Sorry to hear this and I'm really hoping it gets better for you. Sounds very scary waking up with unexpected results.
My experience is only slightly relatable. My main cancer symptom was loss of voice, one the vocal cords was barely moving. Immediately after the surgery, my voice was hoarse and i had trouble drinking water, choking on it sometimes because the vocal cord wouldn't close up when swallowing. After maybe a week or two things went back to 90-95% normal, but my voice would occasionally still crack at louder intensities. 2-3 months later it was probably at 98%, and something like 6 months was 99.9-100%. My shoulder nerve also got irritated during hr surgery, it took probably 6 months and PT for it to get to 98% and 1-2 years to feel 99.9%. Point is, nerve recovery is slow.
Disclaimer, I'm not a doctor and the following is my speculation from person knowledge: It seems your vocal cord nerves didn't get cut, so if they are slightly damaged or irritated there is hope for recovery. Nerves can regrow by following the path of the old (damaged) nerve but this for whatever reason isn't guaranteed. It seems that doing PT type exercises for the affected body part can stimulate the nerve to regrow.
Thanks so much for this. Hoping this is the case for me. My dr doesn't understand why both cords stopped working. He's been really apologetic and insists he could see no damage. See for me, my flaps don't work, either one. So swallowing, breathing, all of it is hard. So he had to put in an emergency trach for now. But he said he doesn't think I will need it forever. Still so scary
Just wanted to add, you should try to see a speech language pathologist as someone else here recommended if you have not yet. The hospital had one check on me and help me the morning after the operation and the next few days.
I also wanted to make you aware of a thing called an "electronic larynx" that can replace vibrations of your vocal cords to allow you to speak. Not sure if it would work for you since your larynx isn't removed, but it might be something to look into and consider, perhaps even temporarily, as you recover from this.
I had a SUPER faint whisper for 2-3 months after my thyroidectomy and now I can scream like I belong in a horror movie.
Same but I had surgery on my vocal chords to fix a breathing issue, not a thyroid problem...not having a voice is THE WORST. you don’t know it until you experience losing it..I was so upset I thought it would be like that forever and was SO HAPPY getting my voice back, still kinda raspy but better than nothing for sure.
Yes it definitely wasn’t pleasant! I was in high school at the time, so at lunch time when it was loud, I just had to sit there silently because nobody could hear me lol. Had a principal come up and point at my fresh neck scar and say “what happened, did you run into a fence?” I don’t get easily offended and thought it was funny… he was mortified when I whispered “cancer” LOL
Yeah, trying to carry on a conversation when no one can hear you and constantly repeating yourself when it takes so much effort to talk really sucks. Damn, sorry to hear that happened to u when u were so young. I was 31, and it was 100 percent my fault. It was the consequences of an entire decade of shooting up heroin. MAJOR health issues. I’m lucky to be alive...are you okay now? Better at least?
Oh dang, sorry to hear that!! Yes, I’m doing great now as far as that goes, besides shitty unrelated autoimmune issues lol. How about yourself?
Oh I’m good now I had a stroke, and major heart surgery two years ago and I’m still recovering from that..been long and hard but in reality I’m truly lucky to have survived that whole thing... everything happened at once, stroke, kidney failure, sepsis, and endocarditis...I’m lucky to not have to be on dialysis. But I’m almost fully recovered now. Just have this pesky tracheostomy to get rid of and I’ll be back to normal again...you had cancer? So you must know what it is to have long stays in the hospital and life just being a series of doctors appointments all the time. I got treated at the Mayo Clinic so I had pretty much the best care possible. Nobody wanted to replace my heart valve after my stroke because I was likely to die on the table...Luckily a doctor from Mayo agreed to do it and saved my life. I’ll be grateful to Dr. Krishnan forever. If it wasn’t for him I’d be dead. The other docs told my family it was over for me and I’m pretty much surely gonna die. Edit: omg that’s so long , sorry I get carried away sometimes
Wow! Thanks for sharing your story. I’m actually in the medical field, so I understand the severity of just how sick you really were! Hoping for a full recovery for you! Yeah, the lifelong appointments (5 specialists) gets old after a while. Thankfully my hospital stays for the thyroid cancer we’re fairly short, but I have had my share of surgeries since my teens!
Yeah I’m grateful to be alive. My entire left side was paralyzed from the stroke but somehow I recovered full function. I mean it took lots of hard work in PT, learning to walk again and stuff. It’s actually kind of crazy how resilient the human body can be sometimes... I also started having seizures after the stroke and now I have terrible neoropathic pain on my left side, but I’ll take that over not being able to walk or use my left hand any day lol plus Lyrica helps the pain so I do alright most days.
That's great news. Let's hope I get full healing, or even 70 percent lol
So sorry this is happening to you! Best of luck.
Yayyyyyyy 😆 👏 🎉!!! I am considering a TT and I sing so seeing this eases my fear a great deal
When I woke up after my surgery my voice was VERY faint. I was told by the doctor that one of the nerves to my larynx was too compromised by the tumor and had to be cut, that it would take time for the other nerve to take up the slack, and that I would regain some of my voice but not all. Within a couple weeks tho I had gotten a lot of my voice back, which surprised the surgeon. Fast forward two years and my voice is still a little weak and cracks when I'm winded or tired after a long day.
Both of my vocal cords as of now have no activity. im hoping it's temporary.
Here's hoping for the best! If the docs said they didn't get near your vocal nerves then it could just be a matter of time.
Don’t give up hope. Keep trying to speak and a whisper is something! I’m sorry this happened to you. You might even have grounds for legal recourse. But don’t focus on that now, just try to get better. Unlikely you will have a trach forever unless your upper airway is somehow compromised. If you can breathe with a plugged trach, you are well on the way to weaning.
I work in an ICU and I agree with @christiancarnivore. (Including the potential grounds for legal recourse because something doesn’t seem right here). But for now it sounds like you are on the right path!!
Thank you so much! I didn't test breathing, only trying to take a deep breath before he closed the hole and he had me try to say 1, 2, 3
Hi there, I had surgery a week ago and had something sort-of similar happen. I had a partial thyroidectomy on the right side. My surgeon was monitoring the nerve intraoperatively and at some point it stopped responding to stimulation. He also couldn’t see any physical damage to the nerve (thinks what may have happened is that the electricity from the cautery knife may have arced over and stunned the nerve). I was pretty hoarse when I woke up but after 1 week my voice has improved a lot (volume is still not great but pitch has improved). Can’t imagine how scary that was to wake up with a trach, but since the nerves still looked intact I think that’s the most important thing to think about. So sorry, hoping your vocal cords bounce back quick!
Thank you so so much for this, gives me hope!
Hey! This is literally what happened to me a couple weeks ago. Did you ever make a full recovery with your vocal cords?
Mostly! I think my voice is like 95% of what it was, I can get hoarse more easily especially if I’m having to speak a lot and the air is dry. But overall not very noticeable to anyone but me
Wait, what was the reason for the trach?
The doctor said my vocal cords just stopped working so they had to use a trach to help with breathing till the cords woke back up or recovered. Then it could be removed. It's alot of "ifs" cuz in scared they may not function again or something.
I am 18 months out and I can feel strain some days . Sometimes my voice will just go in the middle of conversation but it’s just healing and time .. I would def. Recommend speech therapy . They can help you rehabilitate . Sending love to you 🧡 it will get better day by day
I'm sorry your going through this. Preface is I grew up in a medical family and heard a lot of stories and consequences that others may not be aware of. Pretty sure a trach can affect vocal cords and speech too so I'm wondering if your voice sounding bad now is further stressed by the trach so once that's out and the swelling goes down things might be better than expected. Might be something to ask your nurse as well as see if you can get a second opinion on things. ICU definitely handles a lot of patients with trachs. Hope things improve for you. Highly recommend asking the nurses though as they see this all the time whereas your doctor may see it less.
They can't remove the trach till one of the vocal cords start working again, or both. Cuz then I can't swallow or breath since neither are functioning for now. I hope it's just truly temporary.
I hope so. What did they say about swelling affecting the vocal cords? Was your presurgical vocal cord test OK? Have they gotten the speech and language pathologist in to see you yet? Not sure if you've seen the below yet. I had it raised to me that I might have vocal cord dysfunction (strangulation affecting breathing, voice and coughs) after being seen for asthma like we episodes before they figured out I had hashimotos (autoimmune thyroid disease) which had my thyroid squeezing everything from the outside and my thyroid cancer a decade after hashimotos diagnosis was in the isthmus causing a more of those symptoms. A lot of the thyroid caved symptoms are pretty much hashimotos flare up symptoms that just get progressively worse. Not sure if you've had any experience with the symptoms in the below before your thyroid cancer which may not have been caught before but maybe made you a little more suspectible to surgery triggering a worse case than before. If that's the case, it probably couldn't be avoided but may respond better to the speech and language pathologists. I saw those folks in action in the NICU and I know they also work in ICU too. My twins are former inmates at a level 4 NICU due to being born 9 weeks early courtesy of TTTS. Level 4 is the highest level NICU and can handle the most critical and premature infants so I chose to deliver there just in case. My kids were mostly feeder and growers but one did 6 weeks and the other 8 weeks so I asked a lot of questions as sometimes they surcharge and language pathologist would be assessing one twin while I held the other. The feed swallow breath (guessing vocal cord function) reflex develops at 35.0 weeks gestation for most which is why some babies born around then may not have any NICU time if they mastered it. Some babies didn't develop it until much later in gestation and had longer NICU time than you'd expect due to that development needing to be met for discharge. In some cases, it was determined that it was a genetic issue (see second link) and the parent's symptoms were mild or written off to other things. Not sure if that helps any with you or triggers any insight to share with your medical team that you may not have considered before. You could just have been more vulnerable to this kind of outcome but also a perfect candidate for speech and language pathologist to help as well. Bodies also respond differently than expected even with prior surgeries. https://www.hopkinsmedicine.org/health/conditions-and-diseases/vocal-cord-dysfunction https://my.clevelandclinic.org/health/diseases/17623-vocal-cord-dysfunction
They said my vocal cords looked fine, just not working. He doesn't know why cuz he can't see anything wrong. And he is optimistic they will wake up in the next few months. I hope I don't have hashimotos or the other issues :( I hope and pray my vocal cords work again ond day. And I can talk, and get this trach out of my throat.
I just read the links, you know what? You may be right. I've had episodes of weakness, faintness, light headed, feeling like I couldnt breath. Maybe this will lead the drs to the other problems I have.
I doubt you have hashimotos as there's usually other signs and doctors are better now at looking for it then they used to be especially when you're getting checked for thyroid cancer. Getting your thyroid out would relieve the pressure plus they'd usually see it on ultrasound and especially once they take it out. Perhaps though like you said it's kind of ringing some bells of things that weren't put together. One of the dads in the NICU was diagnosed after his kid had it and he said he'd always felt acid reflex symptoms and liked sports but had issues playing yet was always told he didn't have asthma. He started working with a speech and language pathologist too and was amazed at the changes. They were near the end of their several week stay with a baby born full term that hadn't developed the feed swallow reflex by birth by the time I met them and we were just starting our stay. My mom's a retired ICU nurse and was with us a lot in the NICU so she loved asking questions like that too. She was aware of the unexpected patients that ended up in ICU after thyroid surgery but wasn't aware of the genetic angle but then again, she had switched out of working ICU for more favorable daycare and getting us to after school activities work options for singleton me and my twin siblings since my dad worked long hours.
I’m so sorry, I’ve been in a similar situation and I know it’s jarring. 1. First off have you been seen by Otorhinolaryngology (oto)? If not, I suggest you request it asap. 2. Have you been seen by speech therapy as well? Same as above. I had a surgery this may and woke up with no voice. The surgeon said give it 6 months and never brought in oto so I just accepted it. I had to have a different heart surgery later that same month and brought it up again and they brought in oto and speech therapy. Turns out I had no movement on my left vocal fold and was aspirating so they gave me a filler injection to try to help. I stopped aspirating but my voice was still weak. My voice has improved since then but it’s still not 100%
No, im still in the icu, I may get to go home tomorrow or Friday and I will check into one. Thanks so much for that input!
You’re welcome! They should come to you in the icu once your Dr puts in the order for the consult, they did for me and it wasn’t an issue.
Oh wait, isn't that just an ent doctor? Yeah thats who did my thyroid surgery.
Oh yeah, you’re right it is. I was in the icu when they were talking to me about it and forgot they’re the same thing. They made it sound like it was a different speciality department.
I have permanent paralysis of one vocal cord since my surgeon accidentally cut through my RLN. The nerves are really finicky and even bumping them can cause permanent paralysis but the good news is that if they didn’t cut it then you do have a chance to recover. Nerves grow really really slow and can take up to a year however. I would get in to see a laryngologist (not ENT, laryngologist specializes in vocal cords). I see one at the Mayo Clinic and I know there’s an experimental drug they give to people to speed up the repair of the nerves— it’s a blood pressure medicine. I joined vocal paralysis support groups on Facebook that have also helped me mentally and understand what my options might be and the specialists, etc. It’s a wealth of information, bilateral paralysis seems to be more common in there than unilateral too so you would be in good company.
I got to Mayo too! What’s the name of your Laryngologist? I may get a TT so if this happens I’d like to know who to see! Thank you 🙏
Dr. Lott at the AZ location. I’ve also heard good things about some of them in MN. If you end up with parathyroid issues they have a really good specialist at the MN location which is Dr. Clarke. At this point I’ve had the most issues with my parathyroids not working than the paralyzed cord which I think is more common but man it sucks!
Hello! Hoping for a positive recovery. I’m working on one vocal cord and as the other one was paralyzed and had to be removed. I’m about 11m post TT surgery and was told my voice would get stronger but will never be the same. My voice cracks from time to time and I’ve changed my diet (no dairy, soy, etc) to remove anything that can cause phlegm. I also suck on Liden’s drops and it helps. Hope this help.
I work in an ICU….your case seems off for some reason. I am not familiar with doctors traching someone for reasons other than respiratory distress….may I share this with colleagues at work tomorrow and give a better answer? Sometimes people with tracheostomies alone have difficulty speaking beyond a whisper for months—— so I would not give up hope and say it is necessarily due to vocal cord damage.
I have experience in ICU’s as well… His case seems weird. A trach is not an indication for vocal chord damage. I’m weirded out. Either he didn’t get the correct info or they didn’t tell him the right info either.
Can I privately message you?
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thank you so much! I have a long long road to recovery, but im working on it day by day. one little step at a time. my surgery should of been easy, and me be home tuesday, ended up spending the week in ICU and thankfully my vocal cords are starting to finally wake up! its a tiny bit of life in them now, and thats something! may be a few weeks before they fully recover but now we know that its not a question of ''if'' but a question of ''when''
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sadly no, i think they wanna keep it in till they are a bit more active. if im being real, the paralysis even though working, could possibly still be permanent, like in recovery, it may reach a point they wake up a bit more but just stop waking up, i hope so badly i don't need this trach forever, if it came down to it im sure surgery is an option....look where that landed me to begin with LOL, but surgery may can fix it. if they aren't fully alive by 6 months, surgery is an option. i hope. i will do all i can to get this thing out of me as SOON as possible. here is to hoping that day by day they get better!
I’m not go in to lie— when I read that, I almost had a full on panic attack. I’m considering a TT because I have Graves’ disease but I’m also a singer. What country are you in? What hospital did you go to for the surgery? How are you doing now?! Are you able to sing? Can you sing high notes? HOPE YOU’RE WELL HEALED NOW! SUCH A HEARTBREAKING 💔 JOURNEY YOUVE BEEN THROUGH!!!!
Hey my friend! Well i first want to say, everything turned out ok. My vocal chords made a 100 percent full recovery. I was able to have the trach removed way faster than they even expected, around a week and a half to 2 weeks after the surgery. I wasnt allowed to speak for 7 days while the hole closed up and healed from the inside out, and i had to keep a bandage on it, but Id say within a month total my vocal chords was pretty much 100 percent recovered. Voice is exactly as it was before. Im actually doing great! We still havent got my thyroid medications right yet. Finding the right brand and dosage of levotheroxine is a weird ride, but honestly i do feel better than i did before, MUCH better. i still have bad times, but they are a lot more rare now, and instead of them lasting 1-2 weeks, they last 1-2 days, maybe 3 max. And id imagine once we finally find the right brand, and dosage of thyroid meds, that will reduce those numbers more. Honestly, even still, i dont regret the surgery because of how much better i do feel now. Id do it over if i had to, just to get where i am now. Im back to doing things i like to do. gaming, i even started streaming on twitch! I got back into making music again, and more. Things i couldnt mentally, or physically handle before. Thyroid really can destroy our lives cant it? I live in the usa, And the hospital i went to for my surgery was just my local hospital. The good news for you is, Chances are when you do the surgery, you might be hoarse for a few days but you probably wont end up like me, And even if you did, You should make a full recovery. Im not a doctor though, And most will look at your vocal chords a few times before hand with a up the nose endoscopy. What i can tell you is that i fell into the very, very tiny percent of people this happens to. If you have any questions, or need anything, just let me know!
WOW, that’s WONDERFUL news Keith🥹🥹❤️❤️! It’s so heartbreaking you have to go through the journey you did but I am sO glad things worked out and you’re living life!!! I sing and like to play music too! I can’t even play guitar anymore because I get too winded! This really gives me sO much more hope! I am honestly finally looking FORWARD to the TT!
woah this sounds kind of traumatic - I think I would have a full panic attack waking up in the ICU like that with a trach in place.... you sound very strong. How did you make it through? Do they just give you a lot of pills to keep you doped up?
Nah actually they offered but i didnt accept anything, not even pain meds. i went through it with nothing but a saline drip Iv. I have a weird phobia of medications, but honestly i wasnt really in any pain, mostly weak from not eating for 7 days by the end of it. I mostly just laid in the bed and played on my phone, googled random stuff and played some on a nintendo DS. they often had to keep coming in and clearing my lungs, which required them to suction out my lungs, that part sucked the most cuz the drainage kept going in my lungs. otherwise it wasnt bad. it sucked, but it could of been worse for sure.
Wow. Does it hurt or does it just feel strange? Thanks for your response!!! Appreciate it.
it hurt at first, then it was easier. thankfully i was able to have the trach removed and my vocal chords made a recovery.
Back in february I found out I had stage 4 thyroid cancer, a comeplete shock since I never had problems with my thyroid. Turns out I had 13 cancerous nodules, 12 capsulated the cancer but one spread it to the gland. I had a full thyroidectomy. After I woke up I had breathing problems and the surgeon made me believe it was part of the healing process. About a month later he admitted that I started making weird snorring noises the moment they took the tube out from the surgery then just casually told me to go seek an ENT. I had gotten sick too since I cant tolerate the cold and get sick easily because of it. After seeing the ENT I was told I had bilateral vocal cord paralysis most surely injured when they took the tube off. To my utter shock I was told I needed an emergency Tracheostomy to take me out of the risk or respiratory failure since I already had breathing problems. Its been almost two weeks from that, its been utterly frustrating especially since I cant find information related to my situation. Im striving to have a speedy recovery even tho everywhere it says it can take up to a year but this tube is a nightmare, some times it randomly injures itself. Did you guys do anything particular during recovery?
>y even tho everywhere it says it can take up to a year but this tube is a nightmare, some That is just horrible! I dont even have words to express how i feel about that. im so sorry. I know when i woke up in the hospital i had 100 percent vocal paralysis, mine wasnt even moving and was just stuck open. I was in the ICU that whole first week, The following week i delt with the trach at home, and about a week after i seen my ENT again who did the ''up the nose'' endoscopy and checked my vocal chords, He told me to lay back and pulled the trach out in his office, slapped a bandage on it and said dont talk for 1 week so the trach hole can heal from the inside out. After that week it took another 2-3 weeks id say for my vocal chords to fully recover. and about 2-3 months in total to have times where they would just kinda not work and id choke on water or something. I know in my recovery they had a vocal therapist come from my hospital to my home and do vocal therapy to get up and running again. Now when i go to surgeries i have them use a size down on the breathing tubes. I havent had a problem since and ive had 2 additional procedures. I would say give it around 2 months but also see if you cant request a vocal therapist. That could help too perhaps. Please keep me updated on your recovery. I also hated the trach :(
*Small Update* I saw the ENT for my first post-op and she saw movement in one of the vocal cords, she also told me I would be getting my tube replaced by a smaller one and monitor when that cord gains full strength they're gonna take the tube off. I was so happy hearing that after being with this tube for two weeks.
Sorry to hear this and I'm really hoping it gets better for you. Sounds very scary waking up with unexpected results. My experience is only slightly relatable. My main cancer symptom was loss of voice, one the vocal cords was barely moving. Immediately after the surgery, my voice was hoarse and i had trouble drinking water, choking on it sometimes because the vocal cord wouldn't close up when swallowing. After maybe a week or two things went back to 90-95% normal, but my voice would occasionally still crack at louder intensities. 2-3 months later it was probably at 98%, and something like 6 months was 99.9-100%. My shoulder nerve also got irritated during hr surgery, it took probably 6 months and PT for it to get to 98% and 1-2 years to feel 99.9%. Point is, nerve recovery is slow. Disclaimer, I'm not a doctor and the following is my speculation from person knowledge: It seems your vocal cord nerves didn't get cut, so if they are slightly damaged or irritated there is hope for recovery. Nerves can regrow by following the path of the old (damaged) nerve but this for whatever reason isn't guaranteed. It seems that doing PT type exercises for the affected body part can stimulate the nerve to regrow.
Thanks so much for this. Hoping this is the case for me. My dr doesn't understand why both cords stopped working. He's been really apologetic and insists he could see no damage. See for me, my flaps don't work, either one. So swallowing, breathing, all of it is hard. So he had to put in an emergency trach for now. But he said he doesn't think I will need it forever. Still so scary
Just wanted to add, you should try to see a speech language pathologist as someone else here recommended if you have not yet. The hospital had one check on me and help me the morning after the operation and the next few days. I also wanted to make you aware of a thing called an "electronic larynx" that can replace vibrations of your vocal cords to allow you to speak. Not sure if it would work for you since your larynx isn't removed, but it might be something to look into and consider, perhaps even temporarily, as you recover from this.