Community Information Session November 2022: Spina Bifida Occulta

It's not uncommon to be diagnosed with Spina Bifida Occulta as an adult. While this is considered a mild form of Spina Bifida, many people who have SBO struggle with debilitating pain and feel frustration over the lack of information, resources, and awareness about SBO. This is a presentation from three informed and experience physicians who will discuss SBO.
Robin Bowman, MD
Christopher Standaert, MD
Brad Dicianno, MD

[@loriann8612]

Can we talk about diagnosis in adulthood? There are literally NO doctors that deal with adults without tethered cord (at least not diagnosed), only pediatrics. I've suffered for 29 years with debilitating pain. I've been thru the gamut of doctors staring with PT, imaged so much I probably glow in the dark, mri,'s, now just pain management. In tired of drugs (that really don't do much after all this time & I don't want stronger addictive meds) and injections. Doctor's have told me everything from its all in my head, I'm just a drug seeker, to its fibromyalgia, and various other things.

[@godisgoodallthetime7622]

My diagnosis came in adulthood as well. I have a 67cm. mass. It starts T12 to L5. My right kidney's flat. It's really difficult. I'm no longer working. I take nortriptyline. I'm fortunate. My images show it. My clinician found out that narcotics create more pain. So about 20 years ago he took me off of morphine and fentanly. I have a shunt and stimulator. It's slowed the growth. But it's wreaked havoc on my vertebrae.

[@stonecoldstevejobs]

@@godisgoodallthetime7622 has your sbo qualified you for social security disability?

[@godisgoodallthetime7622]

@@stonecoldstevejobs Yes. They never questioned the diagnosis. I hated the drugs. They made me feel out of control. I'm glad my physician kept up on new findings. He took me off them years ago. I completely understand.

[@leland9002]

Promo SM