Is Dr Liu a member of the group Sal?
"Fenner was the first to undergo the minimally invasive stenting procedure. “I was ready to do whatever it took based on my symptoms,” she says. “At the same time, I would be the first one with Ehlers-Danlos to undergo the stent procedure, and we don’t have the best blood vessels. But I trusted Dr. Liu and I felt it was riskier to do nothing because the veins were so blocked. I had transverse sinus stenosis — the left side was 90 percent blocked and the right was 75 percent blocked.”
Fenner - StentQuantifying Success
Through two small needle pokes in the groin, Liu was able to successfully thread a stent into Fenner’s left transverse sinus, shown in the X-ray image at left. Once the normal flow of blood exiting the brain was restored, pressure within the skull dropped and Fenner experienced immediate relief. “The blurry vision was gone immediately, and I’ve been headache free since the procedure,” she says. “I’ve gotten my strength back, the whooshing in my ears is gone and my memory has improved. I’m cautiously optimistic.”
According to Liu, Fenner was not the only EDS patient to experience drastic results. “We had one patient who hadn’t walked for two years; she had a very mild vein narrowing,” he says. “We put the stent in and two days later she was walking. Two days after that, she was running on the treadmill.”
While not all outcomes have been this extreme, Liu says the EDS patients he’s treated thus far have all seen positive improvements. The challenge for Liu is explaining exactly why these patients are improving to this degree.
“We believe we’re improving the flow of blood,” says Liu. “But compared to other cases of stenosis, the brain pressure in these Ehlers-Danlos patients is much more subtle. There has to be something to measure scientifically to prove something is better or different after the intervention. We haven’t found that magic thing yet, but clinical trials may be down the road.
“As a physician and scientist, I still don’t know what to believe,” he adds. “Maybe this is all placebo effect.”
For EDS patients, it seems the only thing that matters is that venous stenting is offering relief from debilitating symptoms. “Word is spreading,” says Liu. “And I haven’t turned anyone away.”
Liu has performed the venous stenting procedure on more than 50 EDS patients thus far and he keeps close tabs on their progress, with regular clinic follow-ups and email correspondence. “We don’t know how long the effect of the stent will last. It’s only been about 10 or 15 years since we started putting stents in brain, so the concrete data we have is limited,” says Liu. “I hope they last for the rest of their lives.”"
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