Omg! You poor thing! I don't know how something like that could happen! How long has it been since the surgery? Have you been to a neuro optho?

I don't even know what say. I'm so sorry this has happened to you. And that is so scary. I hope you get some answers. Please keep us updated when you can.
Big hug
Amy

My Gosh, I'm so sorry to hear this! I definitely have to second the advice Amy gave you and look into seeing a neuro optho ASAP, someone has to look into this further. So not cool and what really bothers me is how could something as serious as this not cause all the doctors to rush together and find an answer, a connection, a possibility...something.

As far as what could be going on, I have never heard of such a thing and certainly not when the eyes weren't even involved. Since one of your physicians said he doesn't think your vision will ever come back, did he explain why he felt that way? I'm wondering what did he see in your eyes that would make him lean towards thinking it would be permanent vs something temporary that could be causing it to happen and finding a solution...or something. Although I am completely puzzled, I'm sure someone here may have information that can help you. I'm so sorry this has happened to you and maybe this is just a temporary thing and as your body heals, it will get better. You are certainly in my thoughts and prayers!

Big hugs to you!

Thanks guys.

Yeah it has definitely been crazy. I had the surgery 3 weeks ago. So I have been without sight since then. Well let me clarify. When I came out of surgery it was pure black. After a day or so it started that I could see shapes and figures but when its really bright out I can't see anything and when its dark I can't see anything. So for 3 weeks now its just been shapes and stuff. They said I am legally blind in it. Which sucks.

I have been to the neurologist, NS, and a Neuro Optho.... no one knows. Its just annoying definitely. They said that they can't see any damage to the eye but they have all said that sometimes the optic nerve will show no damage.

Thanks for the support guys!

I had swollen optic nerves and went legally blind it took a few weeks to get my sight back after getting a shunt so be patient I have some issues in my left eye from nerve damage the doctors also told me I would never see again but I can see now just takes time for your eyes to heal I was told it could take 6 months for my vision to come back at all so give it time it could come back but if it gets worse go see a neuro opthimologist

That must be very scary for you. I want to offer a bit of hope as well, because my left eye was almost completely gone too. I could see the big E, but not faces or details of anything. My sight in my left eye gradually came back. It was over several months and little by little I started feeling like more light was coming in. My NO says there is no way you can tell what a nerve will do. It heals at its own pace and the amount of damage is extremely hard to tell. I will send positive thoughts your way that you are doing better soon.

Oh I am so sorry! I was hoping there was someone else who could offer a solution. One thing that stood out to me was the fact that you can have serious problems with your eyes without having physical signs of swelling and damage. I'm glad you made that clear because it is certainly true. I've heard on this board time and time again that a few doctors have been telling people here that they don't even have this disease because of the lack of paps or optic disc swelling, etc.

I do have paps in a very bad way and I often wonder what type of damage I'm experiencing with a serious and prolonged episode of it going on for a year strong? They have finally authorized me to see a neuro surgeon at a university hospital out of my immediate area, so I'm praying he will know how to help me better than my neuro. My neuro wants to send me to get an LP shunt but I disagree with all that I've learned in my research.

You are still in my thoughts and prayers and heres to a speedy recovery for you.

Was your shunt an LP shunt, because if so then that would explain the higher pressure during surgery. Being tilted like that would affect the shunt's draining, since lumbar shunts rely on gravity to drain. So you had reverse gravity, so the shunt wasn't draining at all during the whole time you were tilted on your head. And that could have caused the damage to your optic nerve that may not be reversable. I am so sorry that they did this to you!!

I'm so sorry! I hope it comes back.