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Pseudotumor Cerebri | Ashley's Story

After visiting 30+ physicians, Ashley was identified with the uncommon situation referred to as pseudotumor cerebri. She and her household turned to the specialists at Johns Hopkins who labored as a staff to implant a stent, a brand new method to treating this situation that’s sometimes handled with a shunt. Discover out extra about our specialists at

For appointments, Maryland residents ought to name 410-550-1470, and out-of-state residents ought to contact 1-855-884-6754.


View Comments (20)

  • I have this same conversation had my shunt placed 2005 and im so blessed and rhankful God has blessed me to be here today

  • Ick, i had this my last year of highschool. It was taken care of with a few spinal taps and some diuretics, I am so glad my mom kept taking me back to the hospital and advocating for me.

  • I have vision loss in my right eye and see bright white small dots that flash seldomly. In the deep right side of my right eye is darkness and I cannot see anything. Currently attending college. graduating this December and soon doing an internship. Its been a going diagnosis since March 2020. I'm on lisinopril 20mg once daily and Topomax or topiramate 25mg twice daily now once daily. Happened after a car wreck, went to a lawyer, went to a chiropractionioner then had two epidural steroid injections. After those injections was when I started seeing huge black objects, white flashes in both eyes, and EXTREME MIGRAINES EXTREMELY PAINFUL..........all while in college.
    Didn't complain about 2 nobodies. Handle my sh*t. I'm hoping people would respond on here and be more vocal. Does this count as a disability? Started with Papilledema, then pseudotumor (fake tumor) but gotta do another MRI to see if the vessels in my brain are not narrow or possibly the eye based on what they've been telling me. I was taking Aleve it would help then suddenly the pain went away so no more migraines.

  • On a early morning I woke up with severe eye pain, I work with ophthalmologists so I decided to get my eyes checked. After all the tests we noticed that my optic nerve was swollen, got sent for a MRI. I was completely scared the doctor wanted to know what was going in my brain & what was putting pressure on my optic nerves. Long story short 2 days before I was supposed to go in for the MRI I had a TIA (small stroke) got rushed to the hospital, turns out the TIA was caused by all of this 😓. Got sent for the MRI at the emergency room, later diagnosed with pseudotumor cerebri (IIH) at the age of 22!. Got a lumbar puncture with a pressure level of 38. I’ve currently lost 30lbs & doing much better 🙏🏻 GOD IS GOOD

  • I was diagnosed with this disease in 2013 and had a lumbar shunt placed in 2013 due the the medications not working. I am now getting a revision done but this time they are doing the vp shunt.

  • i was diagnosed in the summer of 2015, and let me tell you it was the worst pain i have ever felt.

  • This video was posted 8 years ago. Is there any update? Are these non-surgical procedures common place now? My wife suffers from Pseudotumor cerebri we are looking for job-surgical options. Any advice would be appreciated.