My brother’s surgery to correct myasthenia gravis eye symptoms
I'm working through my worries to support him as best I can
Incessant worrying doesn’t eliminate uncertainty about the future, only the peace of the present.
I’m a worrier. I’m not proud of that, but it’s an ingrained personality trait.
My twin brother, Aaron, who has myasthenia gravis (MG), is having strabismus surgery soon to correct his crossed eyes. I hope the surgery works for him, but I’m also worried. A part of me wishes he wasn’t doing it, but I don’t live with this horrific and debilitating disease; he does. I do sometimes struggle, though, to tell him how I really feel about things.
MG is a neurological disease that destroys the biological communication between the brain, muscles, and nerves. It can cause intense muscle weakness in the hands, arms, legs, diaphragm, throat, eyes, and eyelids.
People with MG can slowly lose the ability to swallow and even breathe. My twin has mentioned a few times that his doctors have warned him about the possibility of these problems occurring in the future. Aaron is the most optimistic man I know, but I remember the worry in his voice when he told me what the doctors had said.
MG, which has no cure, can also cause severe depression and anxiety. The disease is so rare that most people don’t even know it exists. I can’t imagine what it’s like to have to continually explain MG muscle weakness in social or work settings. Even worse, some people mistake MG muscle weakness for laziness, a lack of motivation, or antisocial behavior.
Ocular issues are common in MG
One telltale sign of MG is strabismus. My twin experiences this several months of the year. I live in Manila, in the Philippines, and he lives in the U.S., and when we talk to each other on a video call, I can sometimes see that his eyes are crossed. Other times his eyes are looking forward and don’t move at all.
Whenever strabismus occurs, Aaron wears sunglasses outdoors so that people don’t stare at him or shoot him judgmental looks. When that particular symptom subsides, I can see the look of relief on his face.
Aaron told me several months ago that he planned to have the surgery. I was worried about it, so I researched the procedure online and urged him to ask his doctors about the probability of success and what care would be like afterward. I told him I worried that the results might be temporary.
Since then, I’ve stopped talking about it, because I was acting like I’m the one who was having the surgery. Aaron is an intelligent man, and of course he had considered these things.
His surgery has been postponed several times this year, but now it’s set for this week. The last time we spoke, he seemed anxious and worried, but also optimistic. I wished him luck. I really hope it works for him.
While I’m still on the fence about whether it’s a good decision, my opinion really doesn’t matter. It’s wrong for me to create doubt in his mind or cause him to second-guess his decision.
Instead of worrying about what I can’t control and what doesn’t affect me, I’ve decided to be more optimistic about it and support him during his recovery.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Deb
I can so relate to your post. My husband has Ocular MG and I am much amazed by his patience with it. His eyes haven't settled down enough and keep changing, so he is not up for surgery now. But I worry about him having the surgery and also worry that he will never be able to have the surgery. I am sure his condition is exhausting, but he rarely complains. I would be p'd off most of the time if I had to deal with it.
David Davidson
I share your worries , I also have seropositive MG. I have had double vision off and on for 10 years. I have used a eyepatch, sunglasses with one side taped over on the inside so no one could see the tape and eye glasses that had prisms. The prisms worked the best. The reason I am writing this is I went back to the Mayo Clinic in Rochester to see if they could operate on my eyes and fix them.
They said no because it is always changing as the mg comes and goes. That was 4 years ago. I also have swallowing, Jaw, arms.lungs.and hand weakness also. I would be very curious to know how your brothers surgery turns out. So please keep us posted.
Thanks and Good luck Dave
Harry Carrasquillo
I had surgery back in 1993 at NY EYE and EAR Hospital for double vision. I wore a prism for several weeks and it worked really well. The surgery recovery was uncomfortable to say the least but it worked. Took about a week to recover. I was diagnosed with mg 2 years ago and was told by my neurologist that I have had mg for over 30 years that was never diagnosed. Mg was never mentioned until I suffered a crisis that put me in the hospital several times as I couldn't breath and my head fell into the forward position for several days. Long story short I was diagnosed 2 years ago am currently taking pyridostigmine and 10mg prednisone. I can sympathize with your brother and what he is experiencing but tell him to hang tight. The surgery worked out for me and I'm sure it will for him as well. Many blessings to you and your brother.