Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi,
My 30 year old son was recently diagnosed with MG and he is having a robotic thymectomy next week. I was wondering if any of you have had this surgery and how he can expect to feel the first week after the surgery? Did you have any immediate improvement for swallowing and talking?
Since with MG, patients' symptoms and conditions vary so much, it is hard to predict how your son will feel the first week after his operation. I am a seronegative female, had long-standing poorly managed generalized MG, and was 61 when I had my robotic thymectomy in May of 2017. I ended up spending 5 days in the hospital afterwards -- which doesn't usually happen. My thoracic surgeon and his team were attuned to MG issues, and I was well cared for. Before the operation, my surgeon told me that his MG robotic thymectomy patients
often spend a day in surgical ICU and go home within a couple days. I was eventually sent home with printed instructions and encouraged to call the nurses at the surgeon's office if I had any questions at all.
The operation itself, although laproscopic, is a stressor, so your son should probably expect to take it easy for a while afterwards. I had stitches, and there were restrictions on what I could lift. I did have to take pain medication for a week or two.
According to my neurologist, it can take up to five years for the positive effects of thymectomy to manifest. I didn't see a rapid improvement in my symptoms, but some patients do. Medical research indicates that thymectomies are beneficial for MG patients, particularly for younger patients like your son. I am glad that I had the operation.
- Nan
Hope the surgery goes well and helps with your son's MG. ;The summary of the research study for thymectomy in MG gave somewhat positivie results for people without thymus cancer or problems and with ACHR + MG.
If a person has thymus cancer or enlarged thymus then surgery is almost always done. The research study done over the past several years was if the thymus seemed normal was it still a useful operation.
The results summarized: On average the researchers found that the combination of surgery and prednisone treatment reduced overall muscle weakness more than prednisone treatment alone. After 36 months of prednisone treatment, both groups of patients had better QMG scores, a measure of muscle strength. Scores for the patients who had thymectomies and prednisone were 2.84 points better than patients who were on prednisone alone.
The researchers also found that patients who had surgery required lower daily doses of prednisone than the patients receiving prednisone alone, 44 mg versus 60 mg, respectively. They had less need for additional immunosuppressant drugs as well. Finally, surgery reduced the occurrence of adverse events from 93 for patients taking prednisone alone to 48 for ones who had surgery and prednisone, primarily reflected in a reduction in hospitalizations.
Those results show that on average it is better. Of course the average includes some folks who did very well and MG went away and some who had no improvement at all.
Other studies show that robotic (minimally invasive) surgery was as good as the older open the chest surgery in MG results,
Good Luck
Russ