I hadn’t dwelt too much on my upcoming consultation with the thoracic surgeon. I researched as much as possible, but as thymectomies were rare, like myasthenia, there wasn’t a huge amount of information to find.
Added to which, robotic thymectomies were a relatively new method of thymus removal. So as far as I could make out, there were positives and negatives;
- The probability of remission is greater
- Faster recovery
- Less chance of surgery triggering an exacerbation or crisis
- Possibility of thymus/tumour remnants being missed
- Biggest risk is haemorrhage
- If haemorrhage occurs, full sternal procedure will be emergency
My appointment letter was a standard template,
You will be seen by a nurse and a member of the team, you may not see Mr C himself
So when we were ushered into a consultation room and introduced to Mr C, I was a little reassured, but apprehensive at the same time.
I was struck again by how serious this was. The rarity of myasthenia madecit so. I wished not for the first time, that I had an average disease, a known quantity. I’d rather be well, of course, but as I wasn’t…
Mr C asked for my symptom history and my current meds. I told him about the progression of my symptoms. How it was becoming impossible to finish a meal any time of day, how my speech got garbled every evening and some afternoons lately. I told him about my overcooked noodle arms and useless hands, the return of my breathlessness.
Mr C explained there were three different ways to perform a robotic thymectomy, other than a full sternal, which he didn’t do. It could be done either by going in through the abdomen and up under the rib cage, through the side between the ribs, or via an incision in the throat.
I told him that the part of the procedure that made me most apprehensive was having a chest drain inserted, because I knew exactly how painful that was! Once I told him about my collapsed lung three years earlier, he said it completely ruled out performing the operation through my side as I had intercostal nerve damage and scar tissue, which he could see on my scan now he was looking for it.
He was in favour of operating via my neck. The thymus grows into the neck, and he believed he had a better chance of removing all of it that way. He drew a line with his finger across the base of my neck just above my breast bone and said the scar wouldn’t be too wide. Maybe an inch or so.
The information he provided that really had me in a quandary though, were the stats on success….
33% chance of lessening my symptoms, or possibly going into remission
33% chance of there being no change whatsoever
33% chance surgery could make me worse
Worse. This could get worse. Just take a moment to digest that.
I knew that surgery could trigger a worsening of symptoms temporarily. It could cause a breathing crisis. It could take a while to recover because my immune system was already under siege. But I hadn’t known surgery could make myasthenia worse in the long term.
Mr C talked with a confidence and authority that comforted me. As we ended our meeting I felt well informed. He wanted me to go away and consider what I wanted to do, and talk to Dr D further about my options before I made a decision. My next neurology appointment was just over a week away. Plenty of time to search for information and anecdotal evidence online.
My gut reaction though, was that I wante to go through with this. I needd to take control and do everything I possibly could to get on top of this damned disease.
I wanted my life back.