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Pseudotumor cerebri/vision loss

Posted by @ashleykay in Brain & Nervous System, Sep 6, 2012

I was diagnosed with the pseudo tumor cerebri, my vision started being blurred so I seen my eye dr and he referred me to a neurologist then I had a spinal tap and my opening pressure was 33 and they took 30 cc's of fluid off, two weeks after the tap I couldn't pass my vision field test and things got worse, my neuro then sent me to an eye surgeon and I had the optic nerve fennentration(sp?) surgery the day after my appt now a week out of surgery I have not regained my vision in my right eye, went back today and he said my nerve had died from too much trama...I can see out of my peripheral vision a little, so that confuses me he didn't tell me why, on top of this I am on Coumadin for dvt, and pulmonary embolism and factor 5. I am so lost and upset...has anyone else had anything like this happen? Hopefully I can get an appt with mayo soon

Tags: eye


Posted by @mouser, Sep 10, 2012

It's likely that the entire optic nerve was not affected and that is why you have a small part of your vision.


Posted by @piglit, Sep 10, 2012

Hi ashleykay, So sorry that you are having so many problems, You need to ask your specialist about the ongoing issues with your vision. I am also sorry about the dvt, pe and Factor v as I am also on comaudin for the problems that have occured with you. I too have felt lost and upset it can be really overwhelming at times. I know how you are feeling and am always here if you need to talk anytime Take care Piglit


Posted by @joyschance, Oct 2, 2012

My son has been dealing with it since he was 9 years old. Dr. Sean Donahue is an awesome eye specialist. He is with Vanderbilt. He is truly amazing. We are trying to find help as well for issue he is having. He needs surgery for a cyst on his jaw and doctors are afraid to use anesthesia on him due to his Pseudotumor cerebri. His case is unusual because he does not fit the mold. It happens to females of child bearing age. Not skinny 9 year old boys. I"ve seen his spinal pressure so high it literally splattered on the ceiling. He had hemorrhaging around the optic disc. Diamox made him extremely sick. He is grown now. All we have ever heard is "how unusual, this has not ever happened that we know of to a skinny 9 year old boy."


Posted by @alexsimon, Oct 3, 2012

Dear Ashleykay -
Mayo Clinic has some info available here:

Also, if you have havent already requested an appointment, you can do so by clicking on the "Request an Appointment" button on the upper right hand corner of the screen.


Posted by @yusofa, Oct 9, 2012

One in our group has same thing. Her optic nerve looked like spaghetti and pressure from LP was high. Every month she had a LP to keep pressure down to avoid head pressure from damaging optic nerve more. Because of other medical problem she could not any more taps, thus, if you do not know the pressure, it is too dangerous to operate on head. However, right after the last tap to make pressure normal, she had them put in a shunt between head and to drain the extra fluid down to abdominal cavity to keep fluid in head normal and pressure on nerve normal. So far so good. Her sight has remained the same since the shunt was put in. It is the same type of shunt that they use for children born with open spine. Sometimes the tubing will clog, but it is cleaned out regularly. She lost a lot of peripheral vision to start with, but as a writer, she uses "Dragon" speech software to turn her speech into hard copy. Have you ever asked why you got a DVI? Also, why on thinner still? I had one from flying regular airlines, another from driving 4 hrs without getting out and walking. People do get them from sitting or laying down too much, too much Vit. K or not enough liquids, etc. there are so many reasons out there. I am now on small aspirin and thank God, no new clot for 4 yrs or since last long road trip. Dr. Oz recommends writing down all drugs, food, over the counter stuff, alternative stuff, including essential oils, skin patches, even birth control methods. Check with some apps out there, or talk with druggist to see if there are any interactions or drugs with black boxes or adverse effects. Nellie says there is new laser surgery out there for intracranial hypertension (PTC), as you have. Nellie started here in NY with one of the great experts in this area--so there are some great people determined to keep people seeing. I wish you luck.

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