As many of you will know, last Friday I attended a local hospital to have a CT scan of my chest.
What you may not know is why.
I’ve spent some time this last few days trying to find something to share from the internet to explain it all, but everything I found was either too technical, or basically incorrect compared to what I hear from other Myasthenia patients, so I’m going to share in my own simple terms and what I understand.
The CT was done using a contrast dye. We are looking specifically for my thymus gland – which is pretty much right in the middle of the chest, below the sternum. We are trying to establish two things:
1- We need to know if the gland is enlarged, in which case it needs removing before it gets any bigger and causes more trouble.
2- We need to know that I’m not hiding a thymoma (a tumour). Again, if that’s the case, we need to get it out. Not all thymomas are cancerous, but like any tumour, leaving it in carries it’s own risks.
There is a small chance I’ve had a tumour or enlarged thymoma since my first scan in around 2003, but I really hoping it only shows residual evidence as an mri suggested in 2005 (I have a very complicated medical history that includes blood clots. It was these blood clots, or ‘PE’s’ in my lungs that I had my initial CT scan for back in 2003. This was then an issue with the thymus was first noted).
Hopefully, the CT scan will be clear. Then I don’t need to go through an operation. Saying that, that brings its own issues as I’m then totally reliant on medical therapy to try to beat MG into submission. Just to note, a thymectomy will not ‘cure’ MG. In fact, it may not do anything! I’m not sure if the statistics, but I think it’s 50% chance of seeing an improvement post surgery – I may be wrong and am sure someone can point me to the right info.
From what I know having spoken to so many people that have had a thymectomy (an operation to remove the thymus gland), it’s a fairly straight forward operation, but it sounds rather grizzly!
In the U.K., there seems to be two main surgery options. Transternal and VATS.
The transternal approach is most common and is the only way the surgeon can be completely sure the entire thymus gland or thymoma is completely removed. I’ve been told the thymus is a tricky one and likes to hide from the scans behind ribs and lung tissue. The surgeon will go straight through the sternum (breast bone, like they would in most open-heart surgery operations) and have easy access to anything found.
The newer way of performing the surgery is VATS. Video Assisted Thoracoscopic (VATS) Thymectomy is done exactly how it sounds – four holes are made in the chest (like in this video if you are so inclined!) and the surgeon uses a camera to guide the procedure. (There are also pictures you can view on that link)
I have already decided that if I need to have surgery, I will have a transsternal thymectomy. I realise it is more invasive and will be a slightly longer recovery, but it is the only way to be sure completeness of thymectomy, as it will affect long-term clinical outcomes. Unfortunately there seems to be evidence that scans don’t always give a true picture of how invasive a thymus gland can become.
I’ll also have the added concern due to being high risk for blood clots and will no doubt be back on those wonderful injections for some time following surgery – but we’ll cross that bridge when we get to it.
I’ll update you when I’ve got the scan results… hopefully on the next couple of weeks.
If you’ve got any questions, or want to add to what I’ve written, please leave a comment. It is so great to be able to keep raising awareness of Myasthenia. Thanks for reading x