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...
I went to see my neuro-opth today for my two month appt. Well, my left optic nerve is completely back to normal (happy dance)! My right optic nerve is still swollen, but nothing like what it was back in December when I had to have emergency optic nerve decompression surgery on both eyes. My right optic nerve was practically bulging back then. As I mentioned in previous posts, my lumbar puncture most recently is 31. Even though I still have about three bad headaches a month and just started experiencing "splotchy" vision in the right, he still wants to keep close tabs on me. He gave me three options...one, do a "wait and see" if it gets better/worse; two, have a shunt put in; or three, have the decompression surgery done again in my right eye....He told me to think about it and pray or meditate about it and call him back within a week or two with a decision...Anyone have suggestions??
My husband and I really are against the shunt idea because it is so invasive....
Decisions, decisions....ugh
Hope you all have a great day!
My husband and I really are against the shunt idea because it is so invasive....
Decisions, decisions....ugh
Hope you all have a great day!
Congrats on the good news regarding your left eye.
I'm sorry to hear that your right optic nerve isn't doing so well.
This topic interests me because I have just had my first decompression surgeries within om March 25th and April 1st.
I have read that decompression surgeries sometimes need to be repeated, and that some patients have them done roughly every 2-5 years. How long ago did you have your 1st decompression surgeries?
Personally, I found the decompression surgery to be less horrible than I thought it would be and the recovery time was pretty quick for me, so for me, if the decompressions work for 3 or 4 years, I would rather repeat the decompressions than have a shunt. But, that is just my opinion...everyone is different and has different needs.
My opinion is only that since I don't have any expereince with either but based on what Lucy went thru (and you b4) and how much it hurt just to have a sensor put in my head, my vote would be to try the optic nerve surgery done again. Everything points to shunt as last resort. I got pretty close but glad for now that I didn't.
TJ
I have had both a shunt and the Optic Nerve Fenestration, my recovery from the ONSF was significantly easier and no complications (and I am going on 11 years after that.
The Shunt failed after 3 years and I had revision issues and now am back to the same boat headache wise, except my vision is stable now and this week we discovered that my PTC is secondary not primary...thats why the vision issues did not come back the second and third time around.
Charlotte
I have never had the decompression surgery but it sounds much less invasive....and from what other people have said it sounds like a much better option than a shunt. I would prob. wait and see rather than go into surgery right away but it depends on if you are losing vision in that eye.
Congrats on the left optic nerve being back to normal!
Jazzy
ps...I was wondering with the decompression surgery is that the same as optic nerve fenestration (sp?).
When I had mine done, the doc would only do one eye every 3 months, to see if one helped the other go down, he specialized almost exclusively in PTC research back then...so I only needed the right eye done, and my nerves are still stable 11 years later.