In February I was diagnosed with a large thyroid goitre. Rather than coming out of my neck, it grew down into my thoracic cavity and is compressing my right lung and trachea.
I'm due to have a right hemi-thyroidectomy next week. Due to the size and location of the mass, thoracic surgeons are going to join the ENT team to perform a mini/full sternotomy as well as the cervical incision.
I feel incredibly lonely, so if there is anyone out there that has had a similar condition, I'd love to hear from you. If you have any pearls of wisdom for recovery and dealing with scars, I'd love to hear them 🫁🦋🩷
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SuperRab
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I haven't had any vitamin testing but my TSH, T3 & T4 are all normal. I won't have time to have any more testing as the op is booked for early next week. I will take a look at some of those links now x
The only syptoms I had leading up to diagnosis was chest pain and becoming short of breath easily. The mass is compressing my trachea quite a lot so surgery has been the only option. I have not seen an Endocrinologist as I don't appear to have hypo/hyper thyroidism.
The first knowledge that I had of a thyroid problem was walking up a very steep hill I couldn't breathe and had to stop before reaching the top. My thyroid was working perfectly and I had never had any indication prior. My trachea was moved too.
I have had a thyroidectomy the only advice I can give you is to question why only one side. The most important thing is to choose the most experienced surgeon for that procedure that you can find, one with many operations done per year. My thyroid mass had moved my trachea so my professor surgeon had that to do. Good Luck with your procedure. Here in France the don't do halves only the whole thyroid just in case another operation is required at a later date.
Like many on the forum I have a multinodular goitre. I had a partial right sided thyroidectomy in August last year to remove a nodule with suspicious cells. Due to the position of the nodule they had to take all of the right side of my thyroid.
Your operation is obviously going to be much more complicated due to size and position of the mass. I'm assuming you'll be staying in hospital?
My symptoms were mainly a feeling of pressure on my chest when I was lying down. I used to have to sleep propped up though still do as I generally just feel more comfortable that way now.
I think you've said you've got current thyroid blood test results? Very important to have them as a baseline pre your op. Don't rely on the hospital to do that as FT3 is often not tested for and that is essential.
After the operation I did feel fairly ok though also felt at the same time like I'd been kicked in the throat too. Trying to sleep was very uncomfortable but I had one of those neck supports you use for travelling and that was good as it held my neck in a position that allowed me to sleep.
The surgeon hoped that my remaining thyroid would take over producing T4 but it didn't so I got prescribed levothyroxine and have been slowly titrating my dose upwards.
As SlowDragon said have a search on the forum for retrosternal goitre. There are many knowledgeable members here that can offer you support and guidance regarding all things thyroid.
Thank you Hedgeree,Yes I will be in hospital for a while and the surgeon has booked an intensive care bed for me, incase they need to do a full sternotomy.
Hello there,I had a total thyroidectomy last June due to Graves disease.I have fully documented my experience on my profile if you care to have a look.Just click on the picture at the side of my name and there it is.You could skip through to the thyroidectomy part.Honestly it was nowhere near as bad as I thought it would be and the scar is nearly invisible one year on.If you have any questions I would be happy to help if I can.I know your operation is a little more complicated than mine but it is an operation all the same.Sending you best wishes.
in case it helps… my husband had open heart surgery last March which meant a cut through his sternum and a 5” scar following. The sternum healed in a couple of months and wasn’t too bad, he says, (ie. Not too painful and only on paracetamol after he left hospital which was 5 days) and scar has healed so you can’t see it unless you’re looking for it. He’s had a personal trainer since September and is fully fit. He’s 67. Enjoy being looked after and best of luck. It’ll be nice to breathe!
Your operation has extra components to it, but I had a TT due to size and position of two of my nodules impacting my breathing, swallowing & voice. It had to be a total because one was one side and one on the other. The other nodules were not little buggers like these two.
I have zero regrets despite having a hell of a time with hormones. So that says a lot.
I nearly drown the summer before due to this issue, I am a strong swimmer and thought nothing of jumping off my sister's boat - in mere minutes I had nothing in me and she had lost her anchor and was nowhere near me.
But happier news that I want to share with you, that will probably happen with yours growing down and being large - I could not believe how free of the mass I felt instantly. I could not believe it. You live with something for so long you do not realize its full impact. And this is despite breathlessness, and gasping for air in certain positions at night. It was insane how free I felt - never expected that feeling.
I know I was fortunate and lucky & had a great surgeon. She had one negative review, but when I asked her, Has this happened? she answered instantly and honestly. And it wasn't even the review content, it was about another issue. That was enough for me. I felt that someone so quick to discuss possible issues openly was both honest & always looking at their skills.
I filled the pain pills and took none. And I have zero issues with the scar, thought I would - no issue whatsoever. Once again, your surgery has an extra layer to it but I have zero regrets & feel thankful, even though I am still working out the hormones.
All the best to you, SuperRab.
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Hi Cavapoochonowner , I should be private messaging you instead. 😁 Just so incredibly happy to 'see ' you.
sadly it’s first I’ve come across this, but I can send you all my love and prayers and wishes ( possibly meditation? For aiding any negative or fear driven feelings?) keep us posted and I hope others on the sight may be able to shed light further x
Hi, I've never spoken to anyone else who had this!!
My situation regarding the op and planning was different to yours but I can tell you that I wear my scar with pride. I looked after it with Bio Oil and massage, and it is lovely and flat now (it wasn't at first). Sometimes necklaces can be worn over but it faded after two years and I don't let it bother me. It is a bit larger than others I've seen (longer). I protect scar tissue with factor 50 or clothes or both in sun.
I had my thyroidectomy end of 2013, with a great surgeon at Bristol Royal Infirmary. At the point of operation they hadn't done an MRI that went lower than my neck (I had masses around my neck too). Opening me up they discovered two growths had gone below my sternum and impacted my lungs, one much larger than the other (they had put my breathing probs down to asthma which didn't explain the retching and vomiting for me). Although the operation ended up being longer (timewise) than expected he was able to remove all growths through a large throat incision with support from his team. After removal he said it was a big surprise and the largest thyroid he had ever removed.
The largest growth was the shape of quite a large balloon filled with water. My breathing was immediately better and the retching and vomiting stopped. I still have an ultra sensitive gag reflex and lose my voice for long periods of time with chest infections. I was also given a CPAP machine when other problems didn't dissipate. This is wonderful and enables me to have great sleep. If offered at any point, don't not use - contact me to discuss and support, as this changed my life positively in ways I hadn't thought possible.
Although I don't have scars on my chest, my best friend had cancer and has multiple scars on her chest from Hickman Lines. She wears them with pride and it was she who advised the Bio OIl and massage.
Regarding recovery, (you don't say your age) the positive impact on your lungs should be immediate and welcome. If you can't speak afterwards don't try to - I made that mistake and ended up losing my voice for a long time as I damaged throat tissue. Ensure you have a white board/pens or paper and pen to hand.
There are lots of wonderful women on here who can guide you over the medication and vitamins journey etc.
Thank you so much for sharing your story. It's made me really look forward to being able to breathe properly again. Like you I had been putting symptoms down to Asthma (and allergic rhinitis) but reading everyone's symptoms makes me think that my thyroid could definately be the issue.
I'll definitely stock up on bio-oil and SPF50 tops when I'm back home again. I'm 38 and have really struggled when friends and colleagues have suggested I cover up and get a 'nice collection of scarves', I want to be able to wear all my pretty 40s/50s style dresses... perhaps wearing the scar with pride is something I'll accept with time.
Tomorrow is the big op day so I'll let you know how it goes xx
Best of luck tomorrow - be thinking of you. You can wear those lovely dresses too and scarves are great too - I have a large collection inherited from my mother. Yes things do take time. Some people decorate around scars (henna or tatoos). 👍
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