"It Was Time to Do Something"

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Shannon Johnson with her family.

South Carolina physical therapist Shannon Johnson, 38, woke up one summer night to find that the vision from her left eye had mysteriously dimmed. “It looked like the lights were turned off in my left eye and on in my right,” she says.

Shannon went to a neuro-ophthalmologist, who discovered a significant reduction in her visual field. The doctor ordered a magnetic resonance venogram (MRV), which produces detailed images of blood vessels. The MRV showed mild venous sinus stenosis, which is a narrowing of one of the large veins of the brain. The doctor diagnosed her with idiopathic intracranial hypertension (IIH) — also known as pseudotumor cerebri a disorder characterized by increased pressure in the brain that primarily affects young women. Untreated, the pressure can lead to loss of vision. The doctor prescribed a medicine called Diamox to protect Shannon’s vision, but it didn’t help much. Some patients do very well on the drug, but others can’t tolerate it — and Shannon was one of the latter group.

“The side effects from the Diamox were debilitating,” she recalls. “I would get a headache about an hour after taking my morning dose and it would change intensity all day. When I would wake up in the morning my headache would be gone, then it would start all over when I would take the Diamox.”

The headache wasn’t even the worst part—it was the tingling sensation in her hands.

 “I wanted to cry when I had to touch things,” she remembers. Since I’m a physical therapist, all I do is touch people. When I’m not touching people, I’m typing on a computer.” Shannon is also a mom of four, so not being able to touch her children without pain was especially heartbreaking.

The tingling interfered with simple, everyday tasks; her daughter had to accompany her to the grocery store because she couldn’t stand to pick up cold or frozen food. Shannon took to buying heat packets in bulk and carrying them in her pockets all day to help ease the pain.

A month after her diagnosis, Shannon’s headaches became even more severe. She spoke with her doctor, who took her off the medication for two days. She felt better, but she started to feel pressure when lying down and her morning pressure headaches returned. She started having back pain, and she also realized that her diminished hearing was probably related to the IIH as well. She went back on Diamox and was stable for a few months, but then she started to experience double vision.  She realized that it was time to do something.

Shannon had been doing online research on IIH ever since her diagnosis and knew that there weren’t many treatment options. There were the medications Diamox and Topamax, which she was taking, and there was shunt placement.

 “Everything I read on shunts said there was a ton of complications from the procedure,” she says. “Neck pain, back pain, sciatica, chronic infection, shunt occlusions, low pressure. Nothing looked promising.”

Shannon did find a research study on venous sinus stenting, which widens a narrowed vein and restores normal blood flow. The results of the study seemed to show better results than shunt placement. She mentioned this research to her neuro-ophthalmologist, who remembered seeing a different study about stenting for IIH. That article, which he forwarded to Shannon, was written by two doctors at Weill Cornell Medicine: Dr. Athos Patsalides and Dr. Marc Dinkin.

Shannon read the study and was impressed that the results seemed so promising. She and her husband scheduled a consultation with Dr. Patsalides and Dr. Dinkin, then packed their bags and headed north to New York.

Shannon with Dr. Patsalides and Dr. Dinkin.Shannon with Dr. Patsalides and Dr. Dinkin.

A second MRV, this time with contrast, revealed that her stenosis was more severe than originally thought and Dr. Patsalides confirmed that Shannon would be a good candidate for the stenting procedure. Shannon, who finally felt as if she had options, elected to go with the stent.

Shannon remembers the week and a half before her surgery as a nerve-wracking time, but Dr. Patsalides and his staff put her at ease. “I was frantic with questions,” she says. “I’d email Kim, his nurse practitioner, and she would respond immediately.” Before she knew it, the day for the procedure had arrived.

“I was terrified,” she remembers. “The thought of having something inserted in my brain was a million times worse than anything I had ever experienced. I would have rather had ten more babies.”

The procedure takes place in two parts – the initial imaging to locate the narrowed vein followed by the insertion of the stent. Shannon would have to be awake for the first part, and worried thoughts ran through her mind. “I just wanted to be knocked out for the whole thing,” she says. “I was also scared that they would get in my brain and realized I wasn’t a candidate for the procedure and he wouldn’t be able to help me.”

Fortunately her fears were not realized, and in fact she was more comfortable than she could have imagined during the procedure. She remembers happily, “When they wheeled me to the surgery room, there was this huge cloud-like mattress on the operating room table that was hooked up to a machine pumping air into it.  It was an air mattress that was being pumped with warm air. It was great!”

As she lay comfortably on the warm air mattress, Dr. Patsalides talked her through everything that was going to happen. The team administered some medicine to relax her, and she remembers, “Between the medicine and the warm air mattress I really felt more comfortable than I had in at least ten years. I had no pain during the procedure except a mild pinching when Dr. Patsalides would advance the catheter.” In no time at all, it seemed, the procedure was done.

When she awoke, Shannon was thrilled that her double vision was gone.  She was out of the hospital after one night’s stay, and says she felt better every day after that. She reports that the hearing she’d lost in her left ear has been restored and she can now hear normally out of both ears.  She is off Diamox completely, and although she still has some mild headaches, they are now manageable. 

A few months after the procedure, Shannon has this to say: “If you are diagnosed with this condition and you are having vision loss or severe headaches, you should definitely consider stenting.  It is the best option currently available.”

More about IIH/Pseudotumor Cerebri

More about venous sinus stenting

More about Dr. Patsalides

Read the abstract of the journal article