What can i expect after having an extreemly large goitre(,multi nodule )that has grown behind my sternum removed.Has anyone had this surgery

Im 55yrs old and a very bad asthmatic. My breathing has been getting worse over a 18month period with frequent chest infections.It wasafter being referred to a consultant for this that it showed on a CT scan that i have a huge Goitre that has restricted my airway to a mere 6mm diameter. This has most likely been the cause of my breathing difficulties, night choking and constant infections.I am often caught unable to get breath in or out ,which i suspect is the condition,plus asthma plus panic and resulted in me collapsing last week-which was really scary! I saw my consultant a couple of days ago and had another scan which is 90% sure is non cancerous ,i also had my vocal cords checked but they are not that clear to see as thyriod is wrapped around them and my trachea. I have been told i have to have a total thyroid removal in a couple of weeks and because it is also behind my clavical may have to have a cut through my side/ribs as well as a large cut on lower neck- there will be a thoracic surgeon doing this part of the op . I have been told the risks etc and quite frankly i am scared to death. Has anyone had this operation that can offer any advice on things many thanks sue

19 Replies

  • ..am truly sorry that you are suffering in this way. I have not had anything similar - I just wanted to say that I am thinking of you and wishing you well. When something is slightly out of the ordinary and not routine surgery - my experience is - the surgeons pull out all the stops and perform brilliantly as a team. You will be one special lady on that day.....

    I know it must be very scary for you. Have you tried Rescue Remedy ? It helped me when I faced difficult spinal surgery....please take good care and I hope you have lots of support around you. Also try to imagine you are sunbathing on a tropical beach when you go under - and hopefully you will come out of theatre in the same mode ! Just one of my coping strategies ! We will all be looking out for you.....

    M x

  • you are so kind thank you

  • Hey Sue, I had a large goitre removed a year ago at Guys. Was referred from my local hospital as the growth extended down behind my breast plate and they weren't able to do it. It was explained that as they were unsure how far down it went I may need a thoracic surgeon too! As it turned out on the day, they removed a growth the size of a large Mango ( which had been giving me the same symptoms as you- difficulty breathing, waking up choking etc). The surgery took only 2hrs, there was no pain whatsoever from the incision when I woke or at any time after. There was a small drain inserted to drain off excess fluid- this was removed after 3 days ( this may vary depending how much it is draining)The wound was closed with metal clips and these were also removed - quite painlessly after 3 days. I went home on the 4th day ( 3 days after surgery). The scar is in the lower part of my neck as there was no need to go in through my breastplate :) It is aprrox 10cms in length and fading fast. My scarring is keloid so yours - if normal- will be a lot quicker. I was off for 2weeks in total which was fine. The anaesthetic after effects vary in so many people, I did feel wiped for awhile so just rest up n take it easy. Although I was multi nodular on one side and this big growth on the other, they only removed the large growth as it was causing the restriction of my airway. Which resulted in no medication. Sadly, I am now experiencing the same symptoms from the remaining nodules again and feel I may be in for another bout of surgery which I would have no qualms about whatsoever! Hope this helps, any questions - just ask :)

  • thank you

  • Hi there. I to had a multi modular goitre. Like yours it was growing into my chest cavity. luckily it didn't extend to far. So no additional cutting. but it was still a big op. It took almost twice as long as expected. My request at the time was I'm only doing this once, so take it all out. Which they did. made sense. My only thing was I under estimated the impact of the anaesthesia and went back to work too soon. Take plenty of time to recover. It's scary to have it done but the alternative is even more scary. By the time you fall asleep you will be awake again. I was out by day 3. You will be fine and after its done you will be sat wondering why you were scared. Stay strong stay positive and you will be good to go. hope this helps.

  • how are you coping on medication now

  • Hi I too had a large toxic multi nodular goiter that was extending into my chest cavity but only about 2 inches and they were able to remove it quite easy i had this done 4 months ago. my op took 4 hours and my scar 6inches long i was very sore afterwards, and had two drain tubes the worst thing was getting them removed, but now its great to be able to breath properly swallow food and no cough or snoring the operation is scary but please dont worry you will feel much better when its over, i spent 3 days in hospital it takes about 2 weeks for you to feel back to normal good luck, linda

  • did you have all your thyriod removed and if so how are you coping on the thyroid tabs

  • Hi yes I had a total thyroidectomy, am now on 125 micrograms of thyroxine still have a few symptoms but feel positive that when my dose is optimal i will feel better, also have to take 1000g of calcium as my parathyroids were damaged during surgery they were so enveloped in my goiter they couldnt be saved. hope your surgery goes well

  • hi im trying to stay positive but you hear real horror stories about taking the pills-still hopefully the benefits of choking and stopping breathing are sure to improve i hope- im so scared. did you have a catheter in for op and were you in itu afterwards

  • I am sure lots of people are well taking thyroxine its just we dont hear about them, thankfully i did not have a catheter (iwas really worried about it) i had to stay in a recovery ward for 6 hours after my op was very sore afterwards but recovered well and only stayed in hospital 3 days, dont worry you will be fine and so relieved when its over. linda

  • thank you for your help x

  • please let me know how you get on.


  • will do. take care x

  • well all done and home in 4days fter ITU etc .goitre huge ,wieghed 3kilo. not too much pain but finding chokinig on swallowing or even fresh air lol a nuisance also my voice sounds like the dog that says sausages! and has no volume or power in it- is this your experience and how long does it go on? Its only day 7 today so early days- as you say im relieved its over x

  • Hi so glad to hear that its all over and you are recovering, it has taken a long time for my voice to sound normal and i had 6 months of speach therapy, still have no singing or shouting voice i am not sure if that will ever return as i had calcifacation on my vocal cords, now on 150 micro of levo and 500 grm of calcium and i feel ok not fantastic yet so take your time recovering you have had a big operation wishing you well, linda xx

  • seem to be choking on thin air at moment but think its where my windpipe has been released after being restricted for so long hope this will improve but its so great to be able to breath at last

  • sued007, l wish you all the best for a speedy recovery, who would think that a thyroid could cause so many problems, take care ,hugs eve x

  • Hi Sue, how are you now? hope you are well, My wife apparently has a big goiter that needs removal soon, they say she will need a sternotomy to remove it, very scary!

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