Has Any Heard of This Condition???

My Ladies,
My daughter 9 years old was diagnosed 2 months ago with a neuro condition called Pseudo tumor Cerbri. Your brain believes it has a large tumor and is producing more spinal fluid to compensate, which causes to much pressure on the brain.

A little of the history is ...

Kylie's school called and said she might have a vision problem, she was seeing double. So the following day I took her to our pedi for a sinus infection, asked the pedi to check her eyes. When the nurse returned she said Kylie bombed the test. Ok ... well ummmm. Kylie has had her eyes tested since she school started and never any problems. I got her in 2 days later which was last Thursday, Oct. 30. Kylie was having headaches, BUT Kylie has serious allergies and was squinting to see, so a headache was not out of the normal. At the eye doc things seemed strange being that I have needed glasses and/or contacts since I was in kinder. They doc seemed out of the normal. Running test I have never done and asking weird questions. Just had a look about her. As a mom in the pit of my stomach I was worried ... I didn't know why or what but something was preparing me for the news. She was in the room with the eye doc for 1hour and 15 min. When the eye doc was done we went out to check out the cool new glasses. well... the doc pulled me aside and said that in Kylie's left eye her optical nerve was swollen. The right was pointing down but no swelling. The left was a very small amount of swelling. She said I am going to call a surgeon and consult with him if you don't mind waiting. Crazy lady say WHAT?? She came out to discuss what he said and what she found and she said there is NO need for alarm and the surgeon and I agree this is minor swelling in only one eye. He will take a look at her eye for you, just pictures and measuring so if it ever increases we will have good numbers. Ok not the best news, well it got worse they explained what caused it to be constricted, it takes surgery to fix and she has a 50/50 chance of loosing all her vision. BLIND? Yes OK - well I talked to the surgeon. They got me in Monday morning at 7 to run tests. While there at the surgeon office, same thing, people seemed scared. Nurses were calling others for codes, checks, and I don't even know what else. They did a total of 40 different test, they said there was no other test they could perform on the eye. The doc comes in and said both nerves were extremely swollen, there was NO constriction. This he said was not what we wanted to see. If there is no constriction, but there was swelling, the swelling was coming from something putting pressure on the back of her eye. Ok I might not be a doc but I do know what is behind the eye. The brain. Right? He ask for our pedi # , asked me to call my husband, and walked out of the room. Before he came back in, our pedi was calling my cell. The pedi said K. this is very serious! I want to call an ambulance to pick her up and I still had no idea why, he said papilledema (swelling of the optic nerve) is caused from pressure in the brain, which is caused from brain tumors or pseudo tumors which is hypertension in the brain. She needs an MRI right now. Ok .... well I didn't want her to know until she had her daddy. I asked him to please let me drive her. He complied. I put her in the car, turned on a movie for her, put in her head phones fighting back a flood of emotion trying to not show her anything was wrong. I shut that door and yelled, cried, threw up, begged for God to help me tell Josh, my husband. I got a hold of Josh I told him. He was strong, and on his way! I drove as fast as I could with Casting Crowns "I will praise you in this storm" blaring. At Children's We walked in straight to a room they had called ahead for her. When the doc came in she said it is one of 2 things that causes papilledema (swelling of the optic nerve), brain tumors or pseudo tumors. They did the MRI and we waited. They came in and said it was normal! Awesome no brain tumors on to the next, Pseudo tumors. That takes a spinal tap, ok no .. the pressure in her spine is normal. PRAISE GOD!! BUT......where do we go from here If there were only 2 things??? Yes we have the faith God healed her from the 2 things. But as of last night, the headaches where more serve, From Thursday to Monday she lost more vision, and the swelling got 4 times worse and now in both eyes. She had to take 2 rounds of morphine, toradol, and Motrin within 2 hours to relieve any of the headache and get out of the fetal position. She hurt so bad. They sent us home. The next day our pedi said NO way, go back I am admitting her for further testing. They did more test all clear. But the symptoms where worsening but the day. And she was getting new ones. Keep us a few days. Then 3 days later back to er in extreme pain. Did another spinal tap. At that point they diagnosed her with the psuedo tumor cerbri. Now we are on meds for it and try to manage the pain.

So I was wondering if there where any other mom that have faced this and can share any imput. I fell like I am drowning and I cant understand everything they are doing and scared of the medicanes they are wanting to put in my baby. SHe is having 2-3 headaches a day.

Also our neuro is Dr. Kane does anyone know if he is good or should I get a second opinoin?