Psuedo Tumor Cerebri

[Wayde]

My daughter is 21 and she has PTC. They have started medication and did surgery on the eye called optic nerve fenestration and now one week after the surgery her grew worse and she now has a masular fold. They did spinal tap to relieve pressure yestersay and the pressure is down to 50 from 55 because the eye surgery. She was pregant when this all began and she had miscarriage. They are talking about shunt now.
How many people lose their eye site and is the shunt something that will be permanant.
Thanks for info.

[donnadolittle]

Hey wayde, was just wondering again if we could get a update on your daughter. God Bless

[ladymyles]

dear wayde, i was diagnosised with PTC in 2001, I loss over 85% of my vision  and control over my eyes for 6 months, The only thing my Doctor would do was, increase my dosage of diamox and weekly lumbars,by the time my eyes sight was restored i was taking 2500mg of diamox a day I couldn't move or left my head up. Just continue to pray and God will see you daughter thru. After 4 yrs of no symtoms i'm starting to have the headache and blurred vision but i know i will be ok and your daughter will be also                      

[donnadolittle]

Thankyou so much for the update. I will be praying for her. My vision has pretty much returned to normal. I also have glaucoma, so, my peripheral vision is compromised already. However, I was told during my surgery that having glaucoma was actually a blessing in disguise due to the opposite directions of the pressure on the optic nerve. The Lord works in mysterious ways. You guys stay encouraged and I will look forward to more updates...God Bless You too

[Wayde]

Thanks for asking. When they were preparing her for shunt surgery they found blood clot on the brain. They went through the groin up through the heart to the brain and installed a stent. They said they don't know which came first the PTC or the clot. They think the blood clot was there from birth but just don't know for sure. It was a nine hour operation.
She went home the next day and was walking at the mall with when I visited about ten days later. Her vision is improving. The only concern right now is will her peripheral vision improve enough so they don't have to declare her legally blind. She can read and watch TV with no problem but her side vision needs to improve so she can continue to drive.
They will do spinal tap after she comes off blood thinner in a month or so. The spinal tap will obviously be final test. But the eye doctor is monitoring her sight and it is improving so there are very good signs all around.

Thanks again for asking

God Bless

[donnadolittle]

Hi Wayde..I was just wondering if maybe you could give us an update of your daughter.

[donnadolittle]

Hi Wayde, I too, am very sorry about your daughter. I was diagnosed w/ PTC back in '06 and the first thing it effected was my vision. I had already went legally blind in my right eye. I have had two shunts placed and am now much better. The shunt typically is permanent but, is well worth the benifits. I can't say that it's a bed of roses but, when it comes to a persons eye sight and the pain that PTC causes when untreated, the shunt is well worth it. I hope the best for your daughter

[Anant10]

Hi Wayde, sorry to know about your daughter's condition. The exact incidence of vision loss in this condition is not exactly known, but it is a well known complication of Psuedo Tumor Cerebri. Yes, in most cases the shut placed is permanent.