Spinal CSF Leak Finds New Life in the Water
Over a decade s ago, Connie, who’d never really been sick, experienced an excruciating headache. Within 30 minutes she was flat on the ground, finding much relief as her body lay still and flat. This is how she spent much of the next several years.
Connie was diagnosed with a disorder called Spinal CSF Leak. Fluid that cushions the brain and spinal cord was slowly leaking along her spine, reducing the volume of fluid cushioning her brain and therefore dramatically decreasing the pressure inside her cranial cavity. She went from zero sick days to incapacitation in minutes.
Spinal CSF Leak affects everyone differently. For many, it limits the amount of daily upright time for patients and (limits the amount of bumping, stretching, lifting and core engagement they can tolerate.)
(patients have very limited ability to be upright and are completely restricted from stretching and lifting – for most, physical restrictions include no lifting or stretching, and jumping or bumpy car rides are not well tolerated)
These factors create a tremendous hurdle: the ability to maintain fitness levels. On land, anyway.
“This pool has made all the difference for me,” said Connie. “At one point after diagnosis, I spent almost two years completely bedridden. I shrunk down to 90 lbs. and I could only be up for short periods of time. I was weak and deconditioned. After two years and some treatment, my rehab physician suggested pool therapy, specifically on a HydroWorx pool with an underwater treadmill and resistance jets at Conforti PT. I went from walking to jogging to running in a fairly short amount of time and managed to go from being very deconditioned to getting cardio conditioning back into my life again.”
Benefits of the HydroWorx pool for Spinal CSF patients
With a spinal fluid leak, in addition to deconditioning, vomiting and headaches, many people experience changes in their cognition and balance. The resistance jets in the pool knock users off balance just enough to provide balance training while they engage in cardiovascular fitness.
“The jets push me off balance a bit and give resistance to my run. I’m simultaneously working on balance and on core as I walk or run. This is extremely helpful. With water up to my shoulders, there is enough compressive force on the body to increase intracranial pressure such that I can tolerate upright exercise while in the pool. In fact, the water actually serves as a sort of pain reliever.
“Another benefit of the HydroWorx pool is that the water levels can be easily adjusted. If the pool were static and I couldn’t change the depth, this would not work; I need a specific depth for adequate compression from the water to tolerate upright posture to run. .”
Now that she’s in good physical shape, Connie says her limited upright time is better tolerated and more productive.
“For a patient with a spinal CSF leak who must be lying down much of the time for symptom relief, along with other physical restrictions, it can be very difficult to avoid deconditioning. This deconditioning can worsen already poor tolerance of upright posture. The pool-running is an ideal form to exercise to reverse deconditioning since upright exercise on land is so poorly tolerated. In addition, physical activity has a favorable impact on energy, pain threshold and brain function.
New Horizons of Service
With some of that new-found energy, Connie started Spinal CSF Leak Foundation, a non-profit organization focused on increasing the awareness of pinal CSF Leak. This year during “Leakweek” (June 3-8, 2019) the foundation is sponsoring a virtual race called the duradash℠, a race intended to increase awareness and proper diagnosis of Spinal CSF Leak and allow anyone, anyhow, anywhere to do be part of a race.
“If participants do their race in 40 minutes or one hour or five days, it doesn’t matter. Everyone can participate in the duradash.”
Connie, of course, will be dashing in the HydroWorx pool at Conforti PT. She plans on completing a 10k, taking her about 40 minutes, on June 3. Registration for the race began May 15 and will run through June 15. For more information about the #duradash, visit the website.
We are grateful for rehab professionals and clinicians like Conforti PT owner, Jeff Conforti, PT, DPT, who advocate the use of aquatic therapy and understand its profound potential to regain lives.