Hello
Last year i wrote Around this time regarding optic nerve sheath surgery to save vision. Well lost vision in the left and i am currently recovering from a vp shunt to stabilize the right eye. I had the sheath surgery last year march and in December was informed the left eye suffered optic nerve pallor or atrophy so no hope there of regaining vision. Doctors do not understands why when its supposed to work because that's the standard and it was textbook surgery. Shunt surgery was the 15th of this month so less than a week ago and i am scared i may end up blind because vision is still blurry. I don't want to be a burden on family and i am applying for short term disability through work because I've been there less than a year and SSA. I am stressed scared and i feel alone. This is tough to experience. No one understands my hesitation working at my driving intensive job when i am cleared to go back to work but no one seems to understand that
I can't perform like before. I wish there was some certainty. I don't want to seem like i want a handout but i want to be Prepared if things go south. My depression is worsening and its hard to see the positive or go by faith because I lost one eye to this. Any advice?

I am so sorry this is happening to you!  the surgeries should have helped.  I would recommend getting evaluated for obstructive sleep apnea which can make all of this worse, and might have been missed last year.  also, I would apply now for SSDI.  if your vision is going, you can't be working at a job that requires you to drive.  don't feel bad about this, a great many of us with IIH are on disability, even without being blind.  and the rest of us ought to be on it but can't qualify somehow.
Deb

I'm so sorry that the treatments don't seem to be working! There are odd cases that seem resistant and usually a secondary cause involved, like sleep apnea. I would suggest contacting Intracranial Hypertension Resource Foundation (http://ihrfoundation.org/) to see if they have resources or suggestions for treatment..maybe even specialists in your area.

I hope the VP Shunt starts helping soon. Take care, and keep us posted!

Julie

Thank you both for your support and advice. I am just at my breaking point with this disease. I know and understand others may have it worse and have struggled a lot longer. I guess its a combination of fear, grief, anxiety, and depression.
My follow up is this week so I'll ask more questions and see where it all goes.
Thank you both again.
Trae

Trae, we definitely understand all of those feelings. The process of finding an appropriate diagnosis and treatment can be grueling..we’ve all been there! And sure, there are people who may “have it worse” in some capacity, but that doesn’t mean that you’re not suffering or diminish your experience in any way. We all struggle at times, especially when we’re in the midst of a crisis like symptoms returning. I hope you find relief soon, but, if not, reach out to IHRF and see what they recommend.