Amanda Wiggin, 34, of Albany, New York, wears a lot of hats: She writes poetry, does volunteer work for the American Foundation for Suicide Prevention and NAMI Mental Health, plays a lot of bingo, and is an avid reader. One of her most important roles is as an advocate for those who have idiopathic intracranial hypertension, more simply, IIH, sometimes known as pseudotumor cerebri. Amanda’s own journey with IIH took her to the brink of blindness, but with the help of Dr. Jeffrey P. Greenfield and the comprehensive IIH team at NewYork-Presbyterian and Weill Cornell Medicine, she’s on the right track and her vision was saved.
“I first noticed symptoms around two years ago,” says Amanda. “I had ringing in my ears, and an audiologist told me I had hearing loss. Around that time I also started having significant blurry vision that led me to my eye doctor. I was diagnosed with papilledema — my optic nerves were swollen and that can lead to blindness if left untreated.”
Papilledema is a common result of IIH, which is characterized by high pressure in the brain caused by excess pressure in the cerebrospinal fluid (CSF) — the fluid that circulates around the brain and spinal cord. The body continually creates and absorbs CSF, but in Amanda’s case, her body wasn’t absorbing the fluid adequately. The excess was creating pressure in her brain and threatening her optic nerves. “The neurosurgeon in Albany offered me two choices: To do nothing and hope my vision doesn’t go, or get a shunt.”
A shunt is a common treatment for IIH after more conservative options have been tried; a neurosurgeon inserts a small tube to drain excess CSF from the brain to the abdominal cavity, where the body can reabsorb it. It’s a routine procedure (for a neurosurgeon, although it never feels routine to a patient), but a shunt carries a lifelong risk of infection or blockage.
Amanda agreed to the shunt, but it opened up a whole slew of issues. “I underwent eight surgeries in the last two years, and twenty-three spinal taps,” she reports. At one point she developed an infection, and the shunt had to be removed. “It was a fight to dial down the pressure in my head,” says Amanda. “I felt unheard. I felt like no one was listening to my concerns. The doctor said it was time to find a second opinion. He offered to call whomever I chose, but I had it taken care of.” She had found Dr. Greenfield.
“I had a friend whose little boy had Chiari malformation,” Amanda says. “I mentioned Dr. Greenfield’s name to her and she told me that he was the number one neurosurgeon that everyone talked about. That was the opinion I needed. Between her review, the others in my IIH group, and with the Google reviews I found, he was someone I could trust.”
Trust was a very important point of Amanda’s decision-making process. “I felt like other neurosurgeons had given up on me. I was worried as to what to expect when I met with Dr. Greenfield — but he was everything I had envisioned. He’s a pediatric neurosurgeon so I was worried about him not wanting to treat an adult. I learned that he does evaluate certain adults who have congenital diagnoses, and even with those adults, he has the pediatric touch. He was gentle, down to earth, and caring. It’s night and day. The two and a half hours I have to travel to New York City is worth it to me if it means feeling safe with my surgeon.”
Dr. Greenfield evaluated Amanda and agreed that shunting was still the only viable approach for her. Unfortunately, Amanda was not a good candidate for medication or venous sinus stenting - options usually tried prior to shunting. With the existing shunt not working and other options dwindling, Amanda presented a significant and unusual challenge for Greenfield to try and reduce the pressure in her head. “We trialed a lumbar drain while she had a working shunt.” Greenfield recalls. “This was a lucky experiment because her pressure disappeared and her vision improved. Amanda needed two shunts.”
“We started with a ventriculoperitoneal (VP) shunt to divert excess CSF from the left side of the brain down to the peritoneal cavity,” says Dr. Greenfield. “That relieves the pressure in the brain. A second shunt, a lumbar peritoneal shunt (LP), diverts CSF from around the spinal cord into the peritoneal cavity, helps reduce the pressure further.” “It is not terribly common to need two shunts, but even with maximal drainage from her VP shunt, she was still under pressure and we had to consider unconventional options to save her vision and minimize her head pressure” Greenfield recalled.
Amanda agreed to the two-shunt approach, and the surgery was scheduled. The trust Amanda had felt with Dr. Greenfield was amplified when she experienced the kindness of the surgical team including the neurosurgery residents and PAs. “From when we got there, the nurse handled us with kindness,” recalls Amanda. “Dr. Greenfield even met my grandmother and he was very genuine. The whole process from beginning to the surgery made me feel comfortable; I never felt rushed. It was a stark contrast to previous surgeries — I knew what was going to happen, they told me specifically which meds they would give me. It was all very thorough.”
Following surgery, Amanda has been making occasional trips to New York City for her follow-ups with Dr. Greenfield’s congenital neurosurgery team, including neurologists and pain management physicians. This is a condition that Amanda will always need to monitor. Her shunts are working, and her vision is no longer at risk. She is grateful to feel heard, and appreciative of how valued the team has made her feel. Her experience with previous doctors has made her feel empowered about her health care, and she has a word of advice for fellow patients: “Have confidence in your doctors. If you’re feeling like you’re scared and you don’t have trust, maybe that’s not the correct doctor for you. I’m so grateful to have Dr. Greenfield as my neurosurgeon. He’s made me feel safer and confident in my future.”
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