Vocal Cord Paralysis

[Kaylee1211]

Hello All,

I had my first surgery in 2013 and my surgeon “nicked” my left vocal cord.

It has been paralysed since. My voice was barely above a whisper for over a year and gradually got better. It’s still not the best but it’s better.

For the last few years (probably at least 5) I have been back and forth to the doctors with concerns over my breathing. I really struggle with breathing when I exercise especially, to the point where I am wheezing and really really struggling to catch a breath. Also when I talk or walk upstairs.

I had a review with my consultant today. It was a different consultant to my normal one (my normal one is also my surgeon who nicked the cord)

Anyway. She said the reason for my shortness of breath is due to the paralysis of the vocal cord. I asked if there was anything that could be done and she basically said no. They can do a procedure (I forget what it’s called but it starts with m) but she said this is usually done to strengthen the voice. She said it either strengthens the voice and makes the breathing worse or makes the breathing better and weakens the voice…

I’m only 33 but I feel like they have just written me off and basically told me to just get on with it.

Just wondering if anyone else has experienced the same and has any little pearls of wisdom that I can use?

Thanks 😊

[Jazzw]

What sort of appointment did you have today? Was it an Ear, Nose and Throat Specialist that you saw? (ENT). If not, that’s the department you probably need.

I think the procedure is called medialisation—that sound right?

I’m sorry this has happened to you. And no, I don’t think it’s right to write you off. If you haven’t had a referral to an ENT surgeon, try asking your GP for a referral.

[Kaylee1211 in reply to Jazzw]

Sorry for the delayed reply I had no idea anyone had replied!It was an ENT appointment that I had.

That does sound right! I think she was implying that it was either too late to do anything or it was pointless because it would have a negative effect on my voice.

My voice is ok in quiet spaces but anywhere that has a bit of background noise there is no point me saying anything as I’m not heard.

I don’t know which I would rather, being able to breathe properly and not talk or not being able to breathe and still have a voice!

I don’t even know if it’s an option, maybe I will need to speak to my original consultant/surgeon to see if there are any other options.

Thank you for your reply 😊

[SlowDragon Administrator]

Looking at previous post

Your vitamin levels are/were terrible

Serum folate level 8.4ng/ml (3.1 - 19.9)

Serum ferritin level 27 ng/ml (11 - 306.8)

Serum vitamin b12 153 ng/L (144 - 915)

B12 severely low

Ferritin deficient

You need full iron panel test for anaemia

Low iron/ferritin frequently causes breathlessness

ESSENTIAL to test vitamin D too

What vitamin supplements are you currently taking

Levothyroxine needs OPTIMAL vitamin levels

B12 at least over 500

Ferritin at least over 70

Retest thyroid and vitamin levels and come back with new post

[shaws in reply to SlowDragon]

As your B12 is very low, please request your GP to test to exclude pernicious anaemia. Pernicious Anaemia is another autoimmune condition. If you have P.A. you need regular B12 injections and we cannot get it from food due to changes in stomach.

nhs.uk/conditions/vitamin-b...

[Kaylee1211 in reply to shaws]

Thank you, I will ask them to do that too!

[Kaylee1211 in reply to SlowDragon]

After my last post and the replies I went to the doctors and raised my concerns but they said everything was within range and normal.Now you’ve said that it can cause breathlessness though I have something to argue with. Which is stupid as I shouldn’t have to argue for blood tests, but they seem to avoid doing them unless they really have to!

[SlowDragon Administrator in reply to Kaylee1211]

Thousands upon thousands of of U.K. members are forced to test privately to make progress

For full Thyroid evaluation you need TSH, FT4 and FT3

plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common on levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

[pennyannie in reply to Kaylee1211]

Hello again :

It is stupid and it's ridiculous tht when so unwell you need to fight the NHS system to try and get better :

Have you been able to improve and get some help with your previous low vitamins and mineral readings ?

I have to confess I found questioning my doctor very upsetting and confrontational, so I wrote a letter to her and my file requesting a full thyroid blood test to include a TSH, T3, T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D.

Long story short - I now organise through one of the companies listed on the Thyroid UK website and order a nurse home visit to draw my blood once a year and self medicate what I need to keep me well :

Since you haven't a thyroid you have " lost " your own production of T3 which is the body's fuel and what T4 is meant to convert to, but can't if your vitamins and minerals are not maintained at optimal.

Did you get the Thyroid UK list of NHS/ private endos and specialists ?

I know it's hard and you probably feel unable to help yourself, but you will feel better an more able once you get our vitamins and minerals up and maintained at optimal levels.

You will need to take back some control and the following book helped my understanding and gave me the confidence to think for myself along with his amazing forum.

Written by a doctor who was hypothyroid himself, Barry Durrant-Peatfield wrote the book for patients to enable them to understand how everything works together and Your Thyroid and How To Keep It Healthy is a relatively easy read and now my goto.

[Noodibranks-7]

Hi,I have had a similar experience.

after first Thyroid Lobectomy I had almost no voice which came back (never fully) after about 3 months. I then needed a total Thyroidectomy a few months later and the voice after the second op was the same as before and took longer to come back, again, I have been told it will never fully come back to normal even though the vocal chord was undamaged. I am still having a breathing issue since the second surgery (last year) which sounds the same as what you are experiencing. I have not mentioned this to the ENT as I am hoping it will fade off at some point. It basically feels like the airway is not big enough to draw in breath, so any exertion becomes an issue. Also talking for any amount of time is difficult I have to stop to take breaths. I’m not sure if I was offered surgery to correct it I would take that option.

[Kaylee1211 in reply to Noodibranks-7]

That sounds the same as me. It’s not all the time though! Sometimes I can talk and have no issue, other days I feel like I have to choose between talking and breathing which sounds ridiculous but that’s what it feels like. I’ve had three surgeries in the same access point now (cut in the neck) first one he got my vocal cord, second one a student/recently qualified did it under his watch (no issues), third one his “scalpel slipped” and gave me what he calls a button hole, smack bang in the middle of my neck. I’m not sure I would want more surgery, but on the other hand, I’m still “technically” young and it stops me enjoying things!

[Noodibranks-7 in reply to Kaylee1211]

I have a theory (I may be wrong) that after the surgery the nerve has been aggravated or in you case damaged and so becomes hyper sensitive and talking and aggressive breathing seems to freak it out and so it tightens, that would explain the on/off thing it does which I also experience affecting both voice and breathing

[goodoldan]

My vocal cords were damaged several years ago when I was hospitalized and intubated for about two weeks. As a result, I ended up with a condition called "subglottal stenosis" and a very small airway that ultimately required that I have an emergency tracheostomy a few weeks later. After a few months I located a world-class specialist at the University of Miami, Dr David Rosow, who was able to perform surgery to somewhat repair the vocal cord damage, restore my airway to at least a usable size and ultimately reverse the tracheostomy. Some vocal training helped to restore my voice to a reasonable quality, too.

[shaws in reply to goodoldan]

I'm glad you were able to have treatment that enabled your damaged vocal cords to be strengthened.

I wouldn't have liked to have a condition that you had and you would have been worried before the operation.

[Kaylee1211 in reply to goodoldan]

I went to see a private consultant a few years back. He said I had subglottic stenosis but when I mentioned it to my surgeon he said I didn’t! It’s interesting to hear other peoples stories. But also to hear there are some success stories to come of it!! I’m glad you found one of the good ones!

[peaches48]

I really hope you sued that surgeon who nicked your vocal cord? Or at least received compensation for their screwup! 😍

[Kaylee1211 in reply to peaches48]

I wish I had the option. Unfortunately I signed the disclaimer to accept it as one of the risks. Tiny tiny risk but still a risk all the same.

I wouldn’t mind not being able to breathe sat on millions 😂

[Poniesrfun]

I know folks on the US forums have reported a variety of procedures (injections, implants, specific exercises) to minimize vocal chord issues resulting from surgery. Agree with getting a referral to an ENT specialist. Sadly, depending on what the surgery entailed, it might not have been possible to avoid vocal chord damage. Often the problems are transient but usually listred as a known possible risk factor of thyrouid surgery. Two questions which should always be asked of the surgeon prior to thyroid surgery are 1) how do they plan to avoid/minimize possible parathyroid damage and 2) how do they plan to aavoid/minimize possible vocal chord damage.

Patti in AZ

[Kaylee1211 in reply to Poniesrfun]

Thank you. Yes it was listed as one of the risks, and believe me I’m grateful (in a way) because he got rid of the cancer. I think I’m more annoyed/frustrated that it’s taken this long to get a reason for feeling the way I do and now I’m told there’s nothing they can do. I just wish I knew more!

This forum has been incredible in helping me though! Most of what I know I would never have known without this!