My MH Susceptible Story by Robert Olson

In 1971, my mother had an operation under general anesthesia. After the operation, the doctor told my father that everything was fine, but there would be a delay before she was in her room. Later, the doctor came to tell my father that my mother had developed a problem, and had died in the recovery room. The autopsy performed sometime later still registered her temperature at 108°F! No solid explanation was forthcoming from the medical team, but the anesthetist was fired.

My brother-in-law, who was a pathologist, began to look for answers. He found some literature on malignant hyperthermia, but there was not much to be found. Any testing, at that time, was limited to differentiated CPK levels.

We became aware of MHAUS after it was founded, and later the NAMHR. I talked to Dr. Brandom and related my story of being under general anesthesia as a younger adult in 1969 (yes, I’m that old!). I have vague memories of knocking a portable light in the OR, and numerous men jumping onto me shouting, “Hold him down!”, and some ice baths. Obviously, there was rigidity and contraction of my muscles. Upon waking in my room, I was feeling very hot, sweating profusely, and unable to move or talk. I could hear lunch trays coming and I was hungry, but still paralyzed. After recovering enough to devour lunch, I needed a bathroom break, but my calf muscles were so tight that I couldn’t put my heel down on the floor to stand up! It took many minutes to stretch enough to walk on my toes for the needed break. All my muscles were very sore, and this soreness continued for several weeks. The only explanation I could extract from the doctor was that, “Your muscles ‘fired’ during the operation, producing that soreness.” Note the years when my and my mother’s events occurred, and just think of what might have been prevented had I known more!

Dr. Brandom asked for a copy of my mother’s autopsy, and after her review, recommended that I have genetic testing. Results showed anomalies on the RYR1 gene that are connected to MH susceptibility – I am MH susceptible. To prevent family disasters, MHAUS recommends a written letter about MH susceptibility to relatives who might be affected, which I have done. Now, I carry a wallet card and have a medic alert tag that should protect me if I’m unconscious after an accident. One of my sons is also MH susceptible and recently had several uneventful operations, thanks to MHAUS and family knowledge.

MHAUS has done a superb job raising MH awareness, doing research, disseminating information, and running the hotline. This is also evidenced by my two successful operations under general anesthesia in the last several years. Each of my doctors knew about MH susceptibility, and they selected anesthetists who were very knowledgeable about MH – and careful. There aren’t enough superlatives, kudos, gratitude, or thanks from me to give the doctors and staff of MHAUS for the effects they are having in the medical community, thereby protecting MH susceptible individuals, and helping diagnose MH emergencies. – Thank you MHAUS!

As told my Robert Olson

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content.