Looking Back…Moving Forward: The Need to Value Shunt Management

As we continue our interview series in commemoration of our 30th anniversary, we sit down with Ann Marie Flannery, M.D., a Pediatric Neurosurgeon who works at the Cardinal Glennon Children’s Medical Center of Saint Louis University in Missouri. Dr. Flannery is board certified in both adult and pediatric neurosurgery and a member of our Medical Advisory Board (MAB). She looks back on her involvement with the Hydrocephalus Association (HA) and its contribution to the medical community as well as speaks openly about the concerns young adults express about transitioning to adult neurological and neurosurgical care.

HA: When did you first learn about the Hydrocephalus Association and become involved?

DR. FLANNERY: My first interaction was not as a surgeon, but as a person attending the 1988 annual meeting of the AANS/CNS Section on Pediatric Neurological Surgery in Scottsdale, Arizona. I brought my second child to the meeting because she was still young. As a baby will, she was not happy to sit in the meeting, so I spent a lot of time pushing our stroller through the exhibit hall where I got to talking to Emily [Fudge]. I did not know about HA and what the association was doing, though I heard a little in passing about the mission. I just remember Emily as kind and welcoming, and telling me a little something about the work of HA, and why the association was represented at the meeting.

I became involved with HA when I took over judging papers for the resident and fellow research paper awards, which were presented annually at the meeting. One of these awards was given by HA. I worked with HA on getting together a good group of papers, knowing who was competitive for the awards, and making a decision in a timely fashion so that HA could award that person at the meeting. This was my first major interaction with HA and I believe this is when I joined the Medical Advisory Board.

Since that time, we have had fascinating MAB meetings and I have gained tremendous insights into what HA does, its range of activities, and the depth of commitment of its board members and staff.

HA: What impact do you feel has HA made in the medical community?

DR. FLANNERY: I am always interested in and supportive of the educational efforts of the association, how it talks to people about hydrocephalus, provides information online that is helpful to patients, and cooperates with individuals to answer their questions and evaluate their individual situation. HA has been helpful for me as a physician because it is a valuable collaborator by serving as the first line of education and support to patients. This makes my work easier and the life of my patients better.

The other thing I appreciate is that the information that HA provides is not biased toward a product or provider. So I can, without hesitation, recommend it to my patients and families. They are hearing the best information we have from a source that is not trying to sell anything or trying to attract a patient to a certain place to get treatment.

HA: What role does HA play in the medical community?

HA is a respected voice of the patient within the medical community. I am currently working on creating evidence-based recommendations for treatments of all facets of hydrocephalus, sponsored by the joint Guidelines Committee of the AANS and CNS. The recommendations range from treatment of children with IVH, to infection protection and treatment, technical advances to place catheters, assessment of one valve over another, to defining how to judge the success of treatments. After more than a year of long and diligent efforts, we have come up with a draft set of recommendations. These will go to the Joint Guidelines Committee of the AANS/CNS for review. They will then be given to HA who will serve as the patient representative to provide input. With HA, I have been working with Debby Buffa and Dawn Mancuso. The recommendations will have commercial implications and may have practice implications. For this reason, we are taking it very slowly and being very careful so that we have the best quality document we can; one that will withstand scrutiny. Our goal is to have them published in the Journal of Neurosurgery: Pediatrics.

HA: Where would you like to see HA 5 years from now?

The original focus on providing materials, information, and support was the best focus at the time. But HA’s resources have expanded into increased research efforts, sponsoring scientific meetings, and new advocacy efforts that have fostered the move from San Francisco to Washington, D.C., creating the new horizon for HA. The next direction is tremendously exciting. Expanding its impact on hydrocephalus research is taking it to the next level of positive energy for individuals with hydrocephalus. Clearly we would all be better off if this condition were curable or preventable, so we no longer had to think about shunts or ETVs. This is a laudable goal. It is good to do education and be an unbiased resource, but only with research development are we going to see any progress towards curing this condition.

People underestimate the condition in terms of its ramifications for a patient’s life and the life of the patient’s family. Right now the goal is to give the best possible treatment until we find answers.

HA: As a doctor working with patients with hydrocephalus, what is one significant moment or memory you have that profoundly impacted you? And how did it impact you?

DR. FLANNERY: When I was chief resident, I had a lot more interaction with pediatric patients, including premature infants with hydrocephalus secondary to an intraventricular hemorrhage (IVH). Because I got to work with children, pediatricians, and families, it directly inspired my desire to go into pediatric neurosurgery.

HA: Sometimes our members express the concern that it feels as if shunt surgery has become so routine, that it is not enticing or compelling for doctors in terms of taking on new patients, particularly for the younger generations of neurosurgeons coming into their careers. What are your thoughts on this?

DR. FLANNERY: Frankly, it is a procedure that appears to be simple, but that has many possibilities for complications and bad outcomes if it is not done well. I feel the surgery is underappreciated; the technical sophistication necessary to deal with hydrocephalus is underappreciated. There are a lot of ways to get it wrong and have problems or bad outcomes. This can happen even if everything is done “correctly.” Technical expertise, practice, and every additional advancement that is effective, that we can use, is essential.

HA: There is also concern in our community for our young adults that are transitioning from pediatric care to adult care.

DR. FLANNERY: They are at a critical juncture in their lives. It’s easy to get lost in the shuffle. I now see adults with hydrocephalus and related problems because of this. Many doctors don’t want to deal with shunts, ETVs, and shunt complications. Those of us that have the expertise have an obligation to take care of them.

Society has to value shunt management. It’s a lot of time and effort, a big commitment on the part of physicians, and, from a procedural point of view, it is very underfunded. Shunts don’t pay and the patient population has a lot of complications comparatively. When a doctor has a choice between performing a cervical spine surgery with a patient who is out of the hospital in a day and the surgeon gets paid 5 times more than taking the same time to do a shunt surgery with a patient who may need to come back, which would most choose? Again, shunt management needs to be valued.

For the transitioning young adults, there are people and families out there that are knowledgeable and can advocate for themselves, and they do just fine. It’s the kids with no one to advocate for them that I worry about.

HA: What message do you have for individuals living with hydrocephalus or their family/caregivers?

DR. FLANNERY: Be optimistic. The odds are that things will go well. But be watchful in that the earlier that a problem is picked up, the better the outcome will be. Also, a shunt is a life saver, not the end of the world.

HA: What message do you have for the general public about HA or individuals touched by hydrocephalus?

I would tell them the same thing that I tell many medical students and residents in family medicine. Most individuals with hydrocephalus are indistinguishable from other kids on the playground or friends around the table. The ones they see in the hospital are sick and may have many problems they are dealing with. This is not the face of hydrocephalus as a whole. A very normal and good life is possible for individuals with hydrocephalus. To reach that goal, it is important that people with hydrocephalus get prompt and effective treatment by someone who understands the condition. If not, there can be catastrophic outcomes.