i... i have PTC. It began when I was 18 yo and at that time I had 6 lumbar-peritoneal shunts in and out for the next three years. Bad time to be out of commission - supposed to be having fun - not headaches and surgeries. I had over 100 spinal taps at that time as well. My initial opening could not be measured. The fluid flew out the end of the syringe and over the doctor's head! I had papelidema, and an actual hemorrhage of my optic nerve. I also had 7th palsy... I think that is what # it is. I was double visioned. It all went away and I only have a small blind spot from the hemorrhage. So, trying to control it, we did two taps a day while I was in the hospital. I got pretty good at it and used to let residents practice on me. LOL. NOT ANY MORE! Anyhow, it absolutely went away for nearly 25 years! One day about three years ago I bent down in my garden and felt that dreaded rush of fluid to my head. I hadn't even seen a neuro in 25 years.
After talking with my Family Physician, I went to see a neuro-ophthalomologist. (Not many in the country. I am VERY lucky I have one here where I live and he is absolutely the nicest, smartest, most compassionate doctor!) I had no papilladema and my opening pressure was only slightly high. It was an absolutely horrific tap. A resident did it and I warned him - "I have had 6 surgeries and over 200 spinal taps and there is significant scar tissue". They thought they were "all that" and that they would have no problem. It was awful.
After some consultation, it was decided that they would remove my old shunt of 25 years and put in a new one. OMG. They could not get the old one out. The shunt was so old that it crumbled everytime they touched it to try and remove it. They eventually left it in and put a new one in. Guess what? Well, the OLD SHUNT decided it was going to work and was "free flowing" all my spinal fluid right out of my head! OUCH! So, they went back in and removed the old one and made sure the new one was working right. about three weeks later I was preparing to return to work and it was just before a three day weekend. My incision site began getting large, larger... and looking kinda yellowish. I KNEW something was wrong. (Come on, you don't have 9 shunt surgeries and NOT know when something is wrong). I went to the ER and the neurosurgery resident told me it was a "fat pad". What a *&%)! she did no tests, just gave me a shot of morphine for my headache and sent me home. I had to wait three days to talk with my doctor because he was away. (we did not have a very good dr-pt relationship either). While I was on hold on the phone with my neurosurgeon, the incision in my gut burst upen and spinal fluid began leaking out. Great, huh? OMG. I had to go back in for emergency surgery. I was absolutely miserable and I was mad as hell.
To end this part of my post, my doctor had to go to review because of all the repeated surgeries and he didn't like me either... so he dismissed me from his practice with no other to care for me! LOL! Can you believe that?
I have a shunt that has a gauge on it that can be changed externally, which is very cool. They do an x-ray and read the # on it - the pressure at which it is set, and if it has moved, they can change it with an electronic magnetic kind of thing that they just lay over the gauge. (Yeah, but try to get a neurosurgeon to do it, my name is dirt). Luckily, my Neuro-ophth has a good relationship with the neurosurg residents and he can usually get one of them to do it for me on the sly.
Now onto the Barometric Pressure and Headaches! What a disaster! I live in the NE and we have had nothing but high and low pressures barrelling through here every day, sometimes twice, thrice! My headache NEVER stops. I want to know how many of you out there experience the headaches with the increase/decrease in barometric pressures... and do you think they are migraine or is it actually increased/decreased intracranial pressure?
I'm counting on you all to answer! My doc would love to do a study on this but well, who cares about headaches? There's no grant money. Let's do our own!
By the way... I spent the last 10 months in NC and GA and my headaches were GREAT...I mean, I didn't have any! I've been back in NY for about 7 weeks and life here is awful. My head hurts ALL THE TIME!