Why Doctor-Patient Communication Is Important in MG

Sixteen years ago, I was diagnosed with myasthenia gravis (MG). Before the MG diagnosis, I didn't need to check with anyone about medical treatments provided by another doctor. However, I found out the hard way that when it comes to MG, we should maintain open communication with our neurologist about any and all medical interventions.

I assumed my doctor and surgery would consult with each other

Eleven years ago, I decided to give in and have back surgery. I’d suffered with severe back and leg pain with unbearable groin spasms for several years. It had gotten so excruciating, I was barely able to walk. The pain was so intense, I’d not only cry, but scream when I tried to move. That pain led me to a spine surgeon.

Tests were done to determine a diagnosis and the extent of the damage. We decided to do the back surgery (lumbar laminectomy) as soon as possible. The surgeon warned me that if it wasn’t done soon, I could be paralyzed. I was extremely tired of the pain and ready to walk again.

Even though I knew I was on immunosuppressant medication for MG, it never occurred to me to contact my neurologist. I was accustomed to the doctors consulting with each other, so I mistakenly assumed they would. After all, that is THEIR responsibility. Well, I found out rather quickly it was also my responsibility! My surgeon didn’t consult with anyone but his own team, so my neurologist was totally unaware I was having surgery.

Then came the complications

The surgery went well and was actually successful. I was walking soon after without pain and was able to stand upright, which I hadn’t been able to do in years! There were no complications... until 3 days later.

I started having pain in my incision which worsened by the next day. I saw my surgeon and told him my symptoms. He examined the incision site and lo and behold, I had a hospital-acquired infection in my surgical incision. Meaning, I developed the infection while receiving treatment at the hospital.

I didn't talk to my neurologist before surgery

Why do I believe this happened? Because I had not discussed the surgery with my neurologist, or the potential risk of infection with my surgeon before the operation.

However, I totally believe I was not treated adequately in the beginning of the infection. The surgeon thought it was superficial (only skin deep), so I was given an antibiotic, but one that was not what I needed. It turns out the infection did involve the skin, but it was also deeper. I had to live with an infection that was not properly treated for 4 months. The entire time, the surgeon kept saying it was superficial.

My surgery was in the lumbar or lower part of my back. A pus pocket formed in the upper outer quadrant of my buttocks – a few inches from the bottom of my incision. The drainage from the incision site was really bad and required frequent bandage changes.

Treating the infection

I went back for another appointment. The surgeon was operating that day, so I saw his nurse practitioner. She listened to us and actually checked out the incision and the drainage. She kind of freaked out when she saw the severity. She pulled the surgeon out of his surgery to see it.

Finally! Someone was going to do something to help me! I was sent for a CT scan. By the time I got home, the surgeon had the report and was calling me to be admitted immediately. He believed the infection was already in my spinal fluid.

I was immediately hospitalized and sent to surgery for incision, drainage, and the insertion of a drain. I also received a PICC (peripherally inserted central catheter) line and was started on very strong IV antibiotics. I received these antibiotics over a 6-week period and was finally healed nearly 5 months after the initial surgery.

This may have been prevented if I talked to my neurologist

I’m telling my story because I was septic and nearly lost my life. I don’t want this to happen to anyone else! When I talked to my neurologist about my experience, I was told that since I was on immunosuppressant medication, I should have been taken off the CellCept a minimum of 2 weeks prior to the surgery. I also would have been given antibiotics proactively before the surgery. These 2 things probably could have prevented month of agony and sepsis.

I urge anyone with MG to always confer with your neurologist and other physicians you see before any invasive procedure or dental work - especially if you're on immunosuppressants. This simple task could save your life and for sure save you from the agony I experienced! Always keep those lines of communication open with all your doctors!