Hey guys! i was diagnosed with IIh/BIH/PTc/ICP - whatever you want to call it- in 2009, after 3 years of constant headaches. I was treated with acetozolamide and regular lumbar punctures for 6 months. the headaches never eased tho and my pressures remained in the 30's. Drs decided i was having migraines and treated me for those, without success. You don't wanna know what hell that put me through!! Last august i had a worsening headache with visual problems and went to see a new GP. she looked in my eyes and sent me immediately to the ED. About 10 drs marvelled at the back of my eyes and then did an LP. my pressure was 17....wtf??? i obviously had papillodaema in both eyes but low pressure..... YES THEY MADE A MISTAKE! That was the closing pressure...... Any way after 7 weeks in hospital, 13 LPs, and 4 grams a day of diamox, my pressure still rose every 24 hours to over 30... At one point it hit 80 and they packed me into a plane flew me to a major city hospital.... Any way i had an LP shunt inserted in October. Headaches improved but not my vision. After 4 weeks i felt really crook and went to dr who discovered my shunt had popped out of my abdomen.... explained my swollen belly! It was revised and for past 5 months i've been headache free. My vision stabilised but my right eye is permanently damaged and does not focus. My major problem is the shunt placement in my spine. I've had incredible pain since the revision and have developed lots of problems. My legs are weak and i often fall down; i get numb legs and excruciating pain from my back to my feet. And, this weekend, i think the shunt has again popped out of my abdomenal cavity as my belly has started to swell again. swear i look 9 months pregnant with quads by bed time!! so its off for more tests tomorrow....
Sooooooo, would i have the shunt surgery again, if i could go back? Yes.... the headaches made my life hell for years. i was in hopsital more times than i can count, i lost my speech, my vision, my ability to use my left side, my sanity, my job and my life. Now i feel well, although i am in pain it is manageable. the most frustrating thing is that i feel well and i'm now limited as to what i can do physically.... If i need to have the shunt revised again i'll ask the surgeon to move it in my spine i fpossible. might help with the problems.
If you ever need to vent then feel free to vent at me... I'll probably jooin in.
hope you are on the improve