Multi nodule goiter: I've been diagnosed with a... - Thyroid UK

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Multi nodule goiter

Snoopy23 profile image
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I've been diagnosed with a multi modular goiter and its pressing on my windpipe. I've been offered surgery and surgeon recommending total thyroid removal which is a scary thought....I'm not sure what to do. Can anyone recommend a good nhs surgeon in London area as I'd like a second opinion.

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Clutter profile image
Clutter

Welcome to the forum, Snoopy23.

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Clutter profile image
Clutter

Snoopy23,

I had a hemilobectomy to remove a nodule which was compressing my windpipe. It turned out to be malignant so I had completion thyroidectomy 3 months later. My surgeon was able to make an incision through the scar. I healed very quickly and have a thin white scar in the hollow of my throat. I'll send you the name of the surgeon I saw via private message.

Snoopy23 profile image
Snoopy23 in reply toClutter

Hi clutter, thanks for responding I'm having trouble finding the private message you sent me. I'm a newbie on here and trying to work it out.

Hi I had my thyroid removed in 2015. I never experienced any symptoms and then all of a sudden my trachea moved and I struggled to breath. Back in the UK I then had a FNA which

didn't find any cancer. I also had two other opinions, however, within 3 months I moved to France and the surgeon removed my thyroid without delay. I had a goiter 4cm growing inside and when tested it was one fifth cancerous (papilary) wrong spelling.

Anyway I hope that you are able to make the right choice.

When your life is in danger from your windpipe being squashed there's no room for "thinking about it". You need to get something done asap.

I would forget about getting a second opinion as this will delay things. The longer the MND is there the more mischief it will get into and the more difficult will be the eventual surgery

Don't worry about a scar, that would be quite ridiculous, you will have one but surgeons do their very best to minimise the long term effect. Some hospitals may offer a "modern" surgery technique which involves a very tiny incision but I would certainly stay away from that as a MND op is already dangerous without that complication. In the meanwhile be very aware that if you are only breathing shallow and with difficulty, you can very easily get pneumonia. That can prove to be fatal if you are of advanced age and in frail health. Breathe deeply and as often as you can especially if you go outdoors.

Snoopy23 profile image
Snoopy23 in reply to

Hi panda, I am anxious about surgery the surgeon I saw said it could be up to a year waiting on NHS! I was horrified to hear that my doctor has told me that's not likely to be the case but nhs wait times are hard to gauge. I think private would be very expensive and I don't have private health insurance. thanks

Hel37ena profile image
Hel37ena in reply toSnoopy23

Hi,I had a TT in June.I too had a MNG which was pressing and deviating my windpipe.I had been referred by my rheumatologist who noticed the swelling.I had no symptoms other than breathlessness on walking and had attributed that to my getting older.Since the TT I have been sleeping better able to walk easier rec.I too debated over having the operation but in the end the CT scan showed how narrow my trachea was and how far down into my chest it had advanced.When I agreed to the opportunity I was told all the things that could go wrong,a second surgeon was on standby on the day in case my sternum had to be broken to get at the enlarged thyroid.I was really scared but in the end the ENT surgeon said although it was large he was able to dissect it down and remove through my neck,the scar is quite large compared to others I have seen,but it is neat and along a natural crease line so is less obvious.The worst part for me was the worry pre-open_about all the things that could happen.Read all you can about positive experiences of TTs and ask for aCT to find out how much your trachea is deviated so that you can make an informed decision.You cannot leave it to keep on enlarging indefinitely.I waited 6 months for my opinion on NHS.Good luck.

I would be very wary about going private, even if you could afford it. I had 2 ops for my MND. The first was in March 2005, when the surgeon (very competent but not a specialist on thyroids) at my local hospital, on seeing the problems inside my throat, decided he was incapable of completing the operation. I then, for whatever reason, had to wait until October for a more specialised surgeon to have a go at a bigger hospital 20 miles away.

If that first op had been done privately, can you really imagine that the surgeon would have abandoned it partway through? Patient dissatisfied (or even dead?), fees lost, etc, etc. Stick to the NHS.

At no time have I ever had to endure the dreaded "waiting list" long delay for any of my ops - 3 on the thyoid, 2 on carpal tunnel, 1 on nephrectomy. Sounds as though it is a lot worse where you are.

Please take care as the problem WILL become worse the longer it is left and you WILL get pneumonia if you can't breathe properly and fail to take appropriate action.

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