I was asked a little while ago, by one of the women I interviewed for Rare Disease Day, about why I had gone for the full thymectomy. It seems fitting to write about it this week as it is my six month scar-iversary.
From my initial appointment with mr consultant, he stressed that I should start thinking about having a thymectomy. Feigning interest, internally I dismissed the suggestion. There was enough to process without having to factor in going under the knife and spending a week in hospital. I had work to consider and my job has always been a top priority. I had all the fitness challenges I had planned to get through. Then, on top of the inconvenience factor, there was the fear factor. The operation would have to wait until it fits for me, is what I thought before moving on.
However, like many things in life, I wasn’t really in control of this decision.
The more I palmed mr consultant off at our appointments, the more insistent he got that I needed this operation (and to put my health first more generally). I couldn’t help wondering whether he was putting my health first. It all felt a bit experimental – up this drug here, have this cut out there. And of course it is experimental because how can it be anything else when there is no proven cause for myasthenia.
The following picture, by Myaware, shows the location of the thymus.
The charity also gives the following description on its website: ‘Hormones produced by the thymus gland are thought to affect the immune system and the neuromuscular transmission although the exact role in Myasthenia Gravis is not completely understood.’
Before I knew it, I was booked in with a surgeon to have a discussion. What’s the harm, I thought? It’ll probably take months for the appointment to happen and then there will be a waiting list the length of the country to actually have the surgery. Not so much. I went along to see the surgeon who told me I could have the operation the following Monday if I liked. I told him I would need to think about it. And didn’t until I was practically told I would never get better without it.
In the mean time, I went along to a Myaware Young Generation meeting and had a chat with one of the lovely ladies there. She had the full thymectomy in a rush because she had a thymoma, a tumor on the thymus gland. However, she said if I was actually going to go for it, I should consider keyhole. It was the first I had heard about the option of keyhole surgery for this operation – why after my consultant speaking about it many times, and seeing a surgeon, was this the first time I was hearing about a much less traumatic option?
I did my research and went back to my consultant prepared. However, his argument for the full operation made sense. He said that in some instances, the keyhole surgery can only remove part of the thymus and the patient then has to undergo the full operation anyway to remove the whole thing. This means putting your body through the added trauma of an extra operation. So it was a simple choice really.
Should it have been? Although the following is based on a small number of conversations I’ve had, it’s true to my observations thus far and I would be keen to know if you contradict/fit with what I’m about to say. From the people I have spoken to that are in remission, all have had keyhole surgery, whereas I’ve yet to meet someone who has gone into remission from the full thymectomy. A few people have told me they have gone into crisis mode or had a significant relapse after the full operation.
I’ve yet to hear the same about keyhole. This suggests to me that if more finance is spent on developing techniques to ensure the thymus can be taken out through keyhole, remission rates could increase. As I say, it’s not scientifically proven and I definitely want to be proven wrong (or right) with empirical evidence.
Anyway, I went for the full operation in the end (tonight’s picture shows nearly the full length of my scar) and prior to it there was a discussion about dissecting the thymus to see if it revealed anything. I got excited at the prospect of this ‘medical research’ into my personal condition and looked forward to feedback – the only information provided so far is that it had been a bit more active than it should have been. I’ve been discharged by the hospital, although I may have to go back due to my superhero powers.
But for now I’m left wondering if I made the wrong decision not pushing for keyhole – perhaps this is as fruitless as worrying about a cause for my MG. People who have had either type of thymectomy – please do post comments about your experiences.