While arriving home from work one afternoon, Jenna Sundell’s husband found her face down on the floor. Jenna had collapsed … again.
Her unexpected falls, which began in 1998, were due in part to the severe muscle spasms, pain and fatigue that she experienced daily. The symptoms became so debilitating she lost her job as a computer consultant.
A long-time Buddhist monk, Jenna would often rely on meditation to separate herself from the pain her body was experiencing.
“Out of nowhere, I started collapsing. Literally I’d fall off my chair onto the floor, my muscles would seize up and I would not be able to get up,” she says. “When you practice meditation, it gives you a great deal of control. So I was able to be with it, and say, ‘OK, the body is not functioning right now, just wait.’ And then a half-hour or hour later I would be able to get up. I basically ignored it.”
But at her husband’s urging, Jenna could no longer ignore it. After seeing more than 14 medical specialists, she was diagnosed with temporomandibular joint syndrome (TMJ), endometriosis and fibromyalgia. She was prescribed a cabinet full of medications — sleeping pills, muscle relaxants, pain relievers and more.
After experiencing several short and sudden episodes of dizziness, Jenna was advised to see a cardiologist. She was diagnosed with patent foramen ovale (PFO), or a hole in the heart. In spite of this diagnosis, doctors concluded that the dizzy spells she had been experiencing could not be caused by the hole in her heart, but rather due to very low blood pressure. She was encouraged to increase her salt intake to normalize her blood pressure. This helped a bit, but did not stop the episodes entirely.
An answer on an app
Jenna continued to manage her symptoms as best she could with the medications prescribed, along with diet and meditation. Then in 2015, while fiddling with the apps on her smartphone, Jenna came upon an oximeter app. She used it to measure her oxygen levels during one of her episodes and noticed that her oxygen levels dropped significantly.
She began recording this data each time she had an episode, and brought it to the attention of her cardiologists and other specialists, who were still unsure of what to make of it.
A little-known condition
In 2017, an integrative medicine specialist whom Jenna had been seeing witnessed an episode while Jenna was in the doctor’s office. She recommended that Jenna see Dr. Nassir Azimi, a cardiologist affiliated with Sharp Grossmont Hospital.
“When I evaluated Jenna, I was able to connect the dots between her symptoms, low oxygen levels and her PFO,” says Dr. Azimi. “Although many people can live healthy lives with a PFO, for Jenna, it was debilitating, so we needed to address this.”
Dr. Azimi diagnosed Jenna with platypnea-orthodeoxia syndrome. It is typically characterized by low oxygen levels and difficulty breathing. Patients usually experience symptoms while upright, and the symptoms are relived when a patient lays down flat. Platypnea-orthodeoxia syndrome is caused by a combination of factors, including PFO.
“I am thankful Dr. Azimi was able to recognize what was going on with my body, and connect it with the abnormality in my heart, because I am not a typical case,” says Jenna. “He was willing to look at the data I had collected, and his knowledge about this little-known condition was essential, because most doctors do not seem to be familiar with it.”
Platypnea-orthodeoxia syndrome is corrected by “plugging” the hole between the two upper chambers of the heart using a special device. The device, which looks like a set of circular butterfly wings fashioned from wire and elastic, is threaded from a vein in the leg up to the heart. Once the device is positioned in the hole, surgeons expand it to completely seal the hole.
With this minimally invasive procedure, patients typically are discharged from the hospital the following day. Most people notice their symptoms of low oxygen, labored breathing or lightheadness resolve after a few weeks.
“With the procedure, I hope to get a functional body back,” says Jenna. “I am hoping that my episodes will stop, and perhaps some of my other symptoms will improve. That would be a wonderful blessing.”
To learn more about Jenna’s procedure and outcome, watch the video above.
For the news media: To talk with Dr. Azimi about minimally invasive heart care for an upcoming story, contact Erica Carlson, senior public relations specialist, at firstname.lastname@example.org.