Facing Surgery with a Diagnosis of Myasthenia Gravis

I have had 3 prior surgeries, all while experiencing the same symptoms that I currently have. The difference now is that I have been officially diagnosed with myasthenia gravis (MG).

The symptoms, as you all know, are muscle weakness, ptosis, breathing issues, and more. Those have gone on for years, undiagnosed. I was told by doctors that I had multiple sclerosis (MS). Although, there was no total proof other than symptoms of MS.

Other health conditions

However, 1 of my last brain MRIs showed 2 active lesions. While I was in the hospital for observation, the nurse at the time told me they were consistent for lesions of MS. But to date, the neurologists are still unsure what caused them.

I also have a Chiari malformation (brain herniation into the spinal column) found about 6 months later on a follow-up MRI. Chiari malformations can cause similar neurological symptoms as MS and MG.¹

A new fear of surgery

For me, part of the fear is knowing that there is a cautionary drug list, on top of the anesthesia concerns for patients with MG. At the time of my other surgeries, I was not diagnosed with MG and I was unaware that anesthesia could be an issue.²

My fear was further enhanced after talking with my surgeon. She said, "I will not be doing this surgery this time because of the myasthenia gravis." She explained that she always referred MG surgeries to other hospitals because her hospital was not set up to handle possible emergencies during or after surgery.

With my other health conditions alone, surgery could get tricky. I also have type 2 diabetes, high blood pressure, and obstructive sleep apnea.

Making the arrangements

The surgeon contacted my neurologist to let him know what was going on. The 2 of them talked and came up with a plan of where I could have the surgery done and included me in the decision-making process.

Before making the referral to the doctor who would actually perform the surgery, I got a call from the first surgeon who explained to me their positioning, and why they were referring me to that hospital.

They still gave me the option to say no if I wanted to be referred somewhere else. But after listening to their reasoning, I agreed.

Working as a team

As with all surgeries, there's a little bit of fear no matter how minor or major the procedure. Even in a totally healthy person, unexpected things can and do happen. Our bodies don't always do what we think they should.

But, I realized during that phone conversation that the surgeon, my neurologist, and my primary care doctor were actually working as a team in my best interest. This is the first time I have felt that safety and care from doctors!

Now I'm just waiting on a call for the consultation with the actual surgeon who will be performing the surgery. I have to say after looking him up ... I'm kind of impressed! Next, it's just getting a surgery date.

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