[Wench]

miracles DO happen

[vagabond]

Damn- I'm sorry you have to go thru this. I hope you get some relief and regain some of your eyesight. You are a strong woman. Thanks for sharing this with us.

[hardy-harr]

thats intense

[kellyhound]

now that's some impressing forehead zipper
thanks for sharing, wish you all the best

[I'm a sicko]

Vision is now about 90% recovered in right eye but I have NP periferal vision in left eye and am still at about 40% of what my vision was. Slowly getting better but the optic nerves were damaged so it may never be 100%.

[I'm a sicko]

Sorry, no, not np

[I'm a sicko]

More about the condition:

Formerly known as pseudotumor cerebri, it causes blindness and severe migraines. There is no known cause, but it is more common in women of child bearing age and the overweight, I'm both.

The cerebral/spinal fluid builds up in the ventricles in the brain, causing intense pressure. The blindness is caused by that fluid entering the optic nerve sheath and compressing the optic nerves. That is what happened to me.

My journal with IH started this May, when I went to the emergency room three times in a week for severe migraines. After doing a lumbar puncture the headache went away, which is how I was diagnosed. I was doing okay on just medication but then one morning I literally woke up and couldn't see a damn thing.

I went to the doctor, they sent me to the Moran Eye Center here in Salt Lake, and I was scheduled for emergency surgery. The optic nerve sheath fenestration is basically poking holes in the tube, or sheath, that surrounds the optic nerve. This allowed the fluid built up to escape and relieve some of the pressure. This worked for about a week and a half before the vision decreased again, although I had only started to see vague shapes again.

I was admitted to the ICU at the University of Utah hospital for a lumbar drain. This is a lot like a lumbar puncture, but they leave a catheter in the spine to continue to allow fluid to drain. I had the drain in my spine for 48 hours, and each hour I drained 10 cc's of spinal fluid. This helped my headaches a lot, but not so much the vision. Due to the success they decided to do a shunt.

The shunt I got was similar to the video above, but mine was bilateral. That means I was split from temple to behind my opposite ear. They drilled two holes in my skull, instead of one. The device I have under my skin is digital and can be adjusted, to help prevent surgery in the future. They catheters run behind my right ear and down the right side of my neck, down the center of my chest, and into my abdomen. The fluid is released at a constant rate and then absorbed by my intestines.

So, now my hair is finally growing back, and my eyes are very slowly improving. I still have daily migraines, but they are very easy to treat. I can get through each day pretty well, but lots of loud noises, heat and light, set of migraines.

So, thanks for listening!

[I'm a sicko]

Oh, one last thing. The pressure built up by the fluid can be measured during a lumbar puncture. Normal pressure is in the single digits, my pressure was hovering in the 40's. So, my fluid was putting 4X as much pressure on my brain and optic nerves as it was supposed to.

[ralucagymnast]

Oh my Goodness, you poor woman. I hope you recover completely from this, good luck and thank you for sharing this.

[LadyCPlum]

Thank you for sharing your story with us.