Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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NiNaBooSKi 04/27/2011

In Aug. 1994 after not being able to see clearly in my right eye I went to the acute care clinic at UCSF at the time it was discovered I had ESRD and would have to go on Dialysis. During the next few weeks my vision started to declined ( I was waiting for an appointment w/optomology) I started having neck pain, headaches, nausea, and vomiting. Finally I get may appointment and as soon as the Dr looked in my eye she saw the damage to my optic nervres and she felt like it was PTC . The next day or two I was at the neurologist for a an LP for the diagnosis my pressure was so high it did not even register. This was my first relief in weeks when some of the spinal fluid is drained off. A week later I meet the Dr. Who save my life. An Optomologist who would preform an optical sheth finastaion (I know that not spelled right..but that how it sounds) on my right eye and 3 months later my left. Basically he made a slit behind my eye so that the spinal fluid would drain back into my body. And that was it! my pressure has never gone back up all the pain stopped. I did loose a significant amount of my eye sight. I was cured! I've never meet or heard of anyone else having this procedure. And ppl seem to suffer with symptoms for so long. Oh and I as on Diamox after the diagnosis (one of the worst experiences of my life-uggggggh). Anyone else heard of this procedure?

deleted_user 04/27/2011

My 12 year old daughter had this procedure done in Dec/2010 and so far we think it has helped. She can't tell us much as to how her vision is since she's Autistic, but the Optho says her eyes are much better. She went blind from the pressure last July and her opening pressure was 76! This is when we discovered there was something wrong. Needless to say, the damage was done. She did recover most of her sight over the next couple of weeks but only has central vision. She still bumps into doorways and coffee tables and stairs since she can't see around her. The surgery saved her from losing what she had left. I am so thankful for that! We otherwise may not have noticed them getting worse again.

Her pressure is still up, 30.5 as of last week, and she started having daily seizures 4 weeks ago and her protein levels in her CSF are still elevated. So back to the drawing board to figure out if something else is causing this.

I am glad to hear that this surgery did wonders for you!! Hopefully, it will stay that way!

Cheers,

Darlyn

NiNaBooSKi 04/27/2011

Thanks for the reply.. I didn't know young girls had to deal with PTC. Hope things workout for her I also have significant vision loss and am always bumping things and ppl...smh. I didn't see this procedure as one of the treatments and I was wondering why it was not used more??? Just wondering???

deleted_user 04/27/2011

I think it's not used more because it doesn't always work to alleviate the other symptoms that some IHers get, such as elevated pressure, headache, dizziness, whoosing in ears etc. The eye surgery is meant to mostly save vision and does help some people with lowering pressure as well. For my daugther, it has only helped with the vision and she still has elevated pressure and headaches, and is quite wobbly when walking.

I may be wrong but I think that when most people with this condition are on medication, it at least helps somewhat with the paps and vision issues, but they seem to still need something for the actual intracranial hypertension, which seems to lead alot of them to VP or LP shunts. I think this is where my daughter is headed as well.

Yes, there are children that suffer from this terrible condition too, poor kids. She is 12, almost 5 feet tall and only 98 pounds.

deleted_user 04/27/2011

Hello, I had this done to my eight eye in oct, and will be having my left done in a few months. You are a lucky one, I was told that there was a chance this would " cure " me as it did you, but unfortunately it didn't. You are the first person I've ever heard of this happening to. I'm very happy for you :) I hope you this was a permanent fix for you. Best of luck!!!

Hopeforretta

deleted_user 04/27/2011

Yes, it is called ONSF, or Optic Nerve Sheath Fenestration. I had it done to my left optic nerve in Aug of 2010. We tried that surgery first, but it did not work well enough, so I had a VP shunt put in in January.

NiNaBooSKi 04/29/2011

@ dardue, I had just assumed It would work for everyone wow I have new appreciation for how lucky I was. Thanks @ hopeforretta Thank you. This forum has given me a new understanding of PTC hope things workout with the left...;9)....@ EEmerson Thanks for the info!

deleted_user 04/30/2011

NiNaBooSKi did you have the whooshing in your ear before the eye surgery?

NiNaBooSKi 05/01/2011

@ brandyK no. No sounds in my ears at all.

deleted_user 05/01/2011

I just wanted to share with dardue that my daughter who is a freshman in high school has a friend named Nichole and Nichole was shunted when she was around 5, she is a small framed girl of normal weight now, not sure what weight was back then. On a positive note she is wonderful and you wouldn't know she had it, if she didn't share it with people, now she can't do sports and other physical stuff like the other kids. She told my daughter she had to have about 3 surgeries as she grew, because for a child they have to keep adding more of the catheter as they grow. I hate to see any child with this, but so wonderful that she is doing so well. I hope this helps you some as a mother if and when you have to make the shunt decision. Best of luck to your daughter, and what a awesome mom you are!!!

Hopeforretta

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