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Story Of A Sexual Syndrome: New Clues, Possible Fix For Some With Relentless Arousal

Jeannie Allen first spoke about her condition a dozen years ago, and now her online support forum on Persistent Genital Arousal Disorder has hundreds of members. (Courtesy)

Jeannie Allen first spoke publicly about her condition a dozen years ago, and now her online support forum on Persistent Genital Arousal Disorder has hundreds of members. (Courtesy)

When last I spoke with Jeannie Allen a dozen years ago, her relentless pelvic torment had just been newly labeled as a rare but bona-fide condition affecting mainly older women: Persistent Sexual Arousal Syndrome.

Please, no quips about middle-aged women feeling like typical teenage boys. It’s no joke. More of a nightmare: genital congestion and pulsation, unwanted and wholly apart from sexual interest, that never subsides, no matter how many orgasms. It’s not nymphomania or sex addiction because it’s not about desire. It’s better compared to priapism in men: unwanted, often painful, prolonged erections.

One snickering doctor told Allen she was every man’s dream. “I wanted to punch him,” she recalled in 2003. “I’m suffering here, and he’s laughing, ‘Hardy-har-har.’ So I looked him in the face and said, ‘How would you like to walk around on the verge of orgasm every second?’ And he shut up.”

When she went public back then — “Sexual Syndrome That Takes Joy Out Of Life” — Allen was a lone voice, one of just a handful of women known to have the syndrome, and the only one willing to be public about it (under her pen name, Jean Lund).

She’s not so alone these days. The syndrome, no longer seeming so rare, has been featured on “20/20” and “The Doctors.” Estimates of total prevalence range into the thousands. There are hundreds of women — and a few men — on her online support forum for what is now called PGAD — Persistent Genital Arousal Disorder.

And the existence of that network has helped spur research into the disorder. Most recently, a paper in a leading gynecology journal this week reports that in some cases, spinal cysts may cause the syndrome, and so spinal surgery may help.

“It’s not imaginary.”

– Dr. Barry Komisaruk

There’s likely no simple solution for the disorder, Allen said this week. “It’s not the same for everyone, and I really do not believe it’s one thing that’s causing it,” she said. “I think it’s a cocktail of things and different for every person.”

But research is beginning to cast light on possible biological causes — and possible treatments. It’s also offering new backing for patients who reject the “It’s all in your head” diagnosis.

The moral here may be, “Doctors should believe what their patients tell them. First of all, and before assuming that it’s a psychological problem, make sure that any physical problem is ruled out,” said Dr. Barry Komisaruk, distinguished professor of psychology at Rutgers.

He has scanned the brains of patients with the syndrome and found activation patterns that mean “it’s not imaginary.”

Almost every woman with the syndrome he’s met has been prescribed antidepressants, Komisaruk added.

“Well, if you had a thorn in your toe for 10 years causing you continuous pain, you’d be depressed and frustrated, and an antidepressant would not exactly be the treatment of choice,” he said.

This week’s research also suggests that doctors should consider checking for cysts that could be causing the disorder in some patients, Dr. Frank Feigenbaum, the paper’s lead author, said.

“The take-home is that a gynecologic practitioner should think about getting an MRI in the lumbar spine in the patient who presents with Persistent Genital Arousal Disorder,” Feigenbaum said, “particularly in the setting of other symptoms of compression of the sacral nerve roots.”

Brain Scans and Obscure Cysts

Sacral nerve roots? Yes, the research suggests that the disorder can arise from problems with the sensory nerves that run from the genitals up to the brain. The sacrum, a bone at the base of the spine just above the tailbone, could be key here. Continue reading

Related:

Pediatric Neurosurgeon, Pioneer In Hydrocephalus Treatment, Among MacArthur Award Winners

In 2000, Benjamin Warf, a pediatric neurosurgeon at Children’s Hospital Boston, took on a job as medical director and chief of surgery at the new CURE Children’s Hospital in a remote part of eastern Uganda. Children there had a high incidence of hydrocephalus (water on the brain), but traditional treatment using a shunt was untenable. Warf, one of 23 recipients of a just-announced 2012 MacArthur “genius” award , set out to fix this. According to a brief profile on the MacArthur Foundation website:

Because traditional treatment of hydrocephalus—insertion of shunts—is both prohibitively expensive and requires sustained medical monitoring beyond the reach of most children in the developing world, Warf pioneered an alternative, low-cost treatment. In carefully designed clinical trials, he demonstrated that a relatively straightforward, one-time treatment using modern endoscopic techniques (based on a surgical approach first attempted in the early twentieth century) results in outcomes that are at least as safe and effective as ventricular shunts, but requires far less medical infrastructure and post-surgical maintenance.

Children’s Neurosurgeon on Translational Research, A Heroic Mom — And Febreze

With permission from addiandcassi.com

Addi and Cassi Hempel: “Mommy, I’m a little tired.”

When Dr. Joe Madsen isn’t busy slicing into children’s brains — I once observed him remove a hippocampus, and will never forget seeing the essence of human memory as a bit of quivering tissue in a container — he sometimes blogs.

His most recent piece on Children’s Hospital’s excellent Vector blog describes a heroic mother’s latest venture into the world of medical research in hopes of saving twin daughters with a rare and fatal cholesterol disease. It’s a compelling tale of stem cells, experimental methods and the desperate need for FDA approval when lives are at stake. Add to the mix, believe it or not, an ingredient from Febreze, the air freshener. (Says Chris Hempel, the twins’ mother: “It’s hard to believe an ingredient found in a product in my laundry room could save my twins’ brains, and lives.”)

Courtesy of Children’s Hospital Boston

Dr. Joseph Madsen

Dr. Madsen is a lively and candid writer, but for me, what really sets him apart is his ringing admiration for the courageous parents of young patients. He ends his post:

…We are now witnesses to a dramatic and exciting struggle to save the lives of two small girls. We don’t know how it will turn out. But the Hempel family has been sprinting along on a very narrow bridge high in the sky, undeterred by fear. We salute them, stand with them, and offer our best hope and any help as needed.

Conflict Of Interest On Brain Electrodes For Depression?

Dr. Helen Mayberg is third from left

Alison Bass, an award-winning Massachusetts-based journalist who writes about conflicts of interest and other flaws in the health care system, has a noteworthy new gotcha on her incisive blog here.

She reports that Dr. Helen Mayberg, an Emory University neurologist, spoke to a major science writers’ conference at Yale earlier this month, and described what sounded like overwhelmingly positive results with her technique of inserting electrodes into patients’ brains to alleviate depression.

The problem, Alison writes:

“Her talk was heavy on anecdotal examples but skimpy on any real evidence of efficacy. Of equal concern, Mayberg did not fully disclose the extent of her conflicts of interest. Continue reading