Hi everyone - I am new to this forum. I have a lot of questions but I will try to be brief. I had my decompression surgery in October of 2010. The surgery went well but I did wind up with a decent sized pseduomeningocele that I still have to this day. For about 2-3 months post surgery I seemed fine but then I began to struggle with headaches again. Not "our" typical chiari headaches but more "pressure" type headaches. I went back to my neurologist and we began treating me for possible intracranial hypertension although I did not present with the typical symptoms. I've been taking Zonengran for about the last 6 months. I had a spinal tap about 4 months ago with a pressure of 23 and since then with her advice have increased the Zonegran and have lost about 45 pounds which if it truly is the hypertension - the headaches should have decreased.
I had another spinal tap 2 weeks ago and the pressure is lower - down to 17 but.... headaches are no better. Had another brain MRI and thought maybe we had found something - sphenoid sinus disease showed up but that turned up to be mild and the ENT said couldn't be causing my severe headaches.
So.... I'm back to square one and thinking that possibly its this damn pseduomeningocele which is still there and which I can still feel. If I press on it, I get the strangest sensation - those of you that have had it understand - its a very "liquidy" sensation that I can feel almost all the way to the front of my face - its all very odd. I still cannot lay back on anything hard. I continue to have horrible neck pain - almost like my neck never healed properly - possibly because of the pseudo. I don't know. I'm at a total loss. I do have an appointment on the 22nd with Dr. Miller at Hopkins so I'm hoping he might have some answers. I also have been diagnosed with EDS so might that have something to do with all of this as well? Any advice would be most appreciated. thank you so much, Lori
Lori, is Dr. Miller at Hopkins a NS? I think you must be a saint to put up with a pseudo this long, many NS will treat or repair this much earlier post-op. Sounds like your NS and NL are ignoring the obvious as pseudo can cause the symptoms you describe. I had a large pseudo after surgery and NS instructed to remain upright (even while sleeping), it seems to be resolving slowly now @ 8 wks post-op. I sure hope you'll get some answers at JHopkins, take care.