Hemithyroidectomy & vocal cord paralysis

Hey Roser,

I have Follicular Variant of Papillary thyroid cancer but my surgery for a full Thyroidectomy went fine and my voice is good. Sorry to hear you suffered even further damage aswell. I've had RIA in 14th Feb as was a positive margin and have had the follow up scan to check that it worked but waiting for results is sooo stupid these days as makes us think what if?!?! Especially when you have other stuff happening to you and you think it's linked etc.

Hopefully SALT can help with things to get your vocal chord working again.

Good luck for Friday for your US hopefully it turns out well, please let us know x

Sorry I couldn't help with any advice on the vocal chord issue x

Hello there,

I can empathise with you about the vocal cord issue. The vocal cord on one side of my throat was permanently paralysed during my first thyroid operation for Hurthle Cell Carcinoma which I understand is seen as a Follicular Thyroid cancer variant. Thankfully, my second operation went without a hitch and like you, my non paralysed vocal cord is now "reaching across" to touch the paralysed side as it has adapted. My voice was very croaky and quiet for about 6 months and it was a strain to speak before the healthy vocal cord learnt to make the adjustment.

Have you been told if the damage to your vocal cord is permanent? I'm now having occasional speech therapy sessions to help me with strategies on days when my voice is weak which happens when I'm very tired.

Good luck on Friday and please do feel free to ask questions if you think of any about the vocal cord issue and I'll do my best to answer them.

Hi Roser30 and welcome but sorry to hear about your vocal chord problems. Do you have the contact for your Clinical Nurse Specialist? I've found mine a Godsend between appointments. They might be able to give you more information on how much the surgeon expects the vocal chord to recover (mine were ok post op so can't be of more help there sorry). Also they could give you the reason why you haven't had a full MRI/CT to check for spread. My treatment plan included those before surgery (total thyroidectomy and neck/chest dissections) so he said they had the full picture of what needed to be tackled but of course that can delay the surgery a bit whilst they collate those results (although mine were thankfully all fast tracked). All hospitals/consultants work differently and have different procedures and timescales.

Your CNS might also explain why you haven't had a blood test yet to see where your thyroid function (TSH and T4) levels are. They might be waiting to see how your remaining thyroid settles and copes or have they put this over to your GP, is the delay there? Always worth a call and chase. If it goes to your GP just make sure they test T4 as not all do as standard.

As for the “we're sure we got it all out” statement, I completely empathise it just feels hard to accept that on the back of the shock of diagnosis and I'm afraid even after the extent of surgery and reassurances I had, I still have days of doubt. With a bit of time and the 6 month follow up CT scan (I'm 10 months post op) it gets a bit easier to accept. Feeling anxious and down is completely understandable and as you'll read on here, really common. Often compounded by thyroxine levels being off. I was completely floored by how badly it all affected my mental health, thankfully again time and improving thyroid function levels have helped. Do contact the Macmillan helpline, there are some free counselling sessions that can help process everything or if you have a Maggie's centre near you they are brilliant. Good luck for friday too. Let us now how it goes x

Hi there,

thank you so much for your reply. Yes there is so much waiting around and it’s painful sitting with the uncertainty isn’t it! Hope your follow up scan results are positive, all the best x

Hi, 

thank you for reminding me about the CNS contact maybe I’ll give them a call after my US on Friday. I’m feeling a bit silly for having these thoughts and feelings, skipping to ‘well others are worse off’ thinking I shouldn’t bother them! I hoped I could be offered a CT scan to ease worries about spread but I think with clear margins from surgery that means there shouldn’t be spread? Although that’s just me googling my results because it’s all written in a way that I don’t understand! I’ll follow up about a blood test too, maybe it needs a few months anyway for my remaining thyroid to hopefully pick up the job. I’m seeing my consultant first thing in June for vocal cord stuff so I’ll be sure to raise all of this too, although preferably don’t want to have to wait until then. Also have some discomfort in my neck too and I don’t know if that’s still from surgery (I’m about 10 weeks post surgery) or if that’s something I should be raising as a concern. I sometimes feel like they think I’m just being paranoid! 

Thank you for sharing and sorry to hear you have also had similar experience with your vocal cord! I was so frustrated at first because it’s obviously a risk but more rare. They haven’t said it’s permanent yet, just that it should have improved by now. I’ve got another follow up June and if no change can accept a temporary filler injection into my vocal cord, then review 6 months post op at which point they’ll say whether it’s more permanent damage. My voice has massively improved however-after giving myself considerable voice rest (difficult to do with 4 young children!!) and now I’m wondering if there has been improvement or if it is just the other side compensating. So I’ll see in June which one it is and whether that changes treatment plans as I’ve been advised to watch and wait at this point why they do the US to check my other side and lymph nodes. 

Has your voice recovered or has there been any change in your paralysis? My goodness you become a bit of a pro having that camera down your nose eh! 

Hello again,

It's interesting that you've already been offered the filler injection. Do you think you'll go ahead with it? I pushed for an appointment  with an ENT consultant after the surgeon told me that the damage was definitely permanent and yes, the camera down the nose procedure is, well, interesting, shall we say!! Have you had it too? 

It's good that your voice has got stronger,  especially as you have 4 young children to call out to and organise! I think that your voice improvement could be either because the other cord is working to compensate as in my case OR your damaged cord is recovering. Do you find that your voice is weaker when you're tired? I definitely do.

The speech therapy sessions are very helpful and have given me exercises to do that I've used before having telephone conversations, for example, when my voice is weak. 

At this point I don’t want to go ahead because my voice sounds normal (only I can tell a slight different in pitch and volume etc) and my issues with drinking and eating are resolving too, I can actually swallow a cup of tea without choking now! So I hope that it’s because it is recovering. It was a lot worse in the evenings when tired, but again I experience this less so now. I’m going ahead with the appointment in June because the consultant said he’ll check my vocal cord first to see the situation. Unless there’s a medical reason why I would need the filler I am happy with my voice and I’m continuing to try and not shout to help it recover…so I don’t feel like I need it. It massively impacted me 2 weeks ago but it’s like it came back overnight! Of course SaLT waiting lists are long although apparently I was a priority when they assessed me, may have changed considering I don’t sound like I need it, guess it depends on what is happening inside too! Where are you at now with treatment etc with your thyroid cancer? From what I can gather it can be quite a lengthy process of tests, waiting results, more procedures etc. 

It sounds like you're making a good recovery and may not need the filler injection at all then.. It took about 6 months for me to hear any improvement at all in my voice, before that I could only whisper and would sometimes lose my voice completely. . My voice gets very breathy when I'm tired but the Speech Therapy exercises help with that.

I had my second op last August, which thankfully was uneventful. I then had the RAI and scan in October. Since then I've had fairly regular Oncology appointments and blood yesterday and things are going in the right direction there. I have an appointment  tomorrow actually  and always feel rather nervous beforehand, which I think is normal. My main issue is that I'm feeling exhausted which I think is due to being on a hyperthyroid dose of Levothyroxine for now. Are you taking any Levothyroxine yourself or is your remaining thyroid tissue coping OK?

Good luck for Friday, I hope it's good news ( I had to have my whole thyroid taken out because of the size of the tumour on the right side of my thyroid  It's done as a precaution when there's a large tumour  I believe.)

Hey, 

My voice was exactly the same, a whisper and I would become breathless. That’s slowly getting better too. Hopefully it’s making a recovery as I can really tell the difference. It’s been really helpful to hear your experience, I’m only sorry you had such a long process before any improvement. 

I haven’t had any bloods yet since my op I’m assuming I’ll have to have them as the hope is my left side picks up the job of the missing side. It’s hard to judge tiredness because I have young children, studying, working and am baseline exhausted anyway…and naturally put myself and health as last priority…

Interesting to hear about your second op too, so pleased it went well I bet it was an added worry having had the paralysis first time round! I would opt for a second surgery if I could I’m really struggling with the watch and wait scenario. I had two tumours removed one of which was on the cut off between t2 and t3…1mm over and the treatment plan would apparently look different.

All the best for you appointment, absolutely normal that uneasy feeling before! I reached out to CNS today and await a call back tomorrow hopefully!