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...
Hi, I'm pretty new to the group and am glad I found this site....anyway, I'm having my second LP shunt revision this coming Thursday (March 26). My first LP shunt didn't take enough fluid off and my headaches actually got worse along with horrible tinnitus (constant ringing in my ears plus whooshing sounds, and everyone sounded like they had an echo). I ended up in the ER and was admitted for a shunt revision, in which my NS put in a second shunt with a resevoir (the resevoir is so I don't have to have any more LP's). He somehow connected the first shunt and the second shunt together, but I don't really understand it.
After that surgery about a week later I got sepsis and was hospitalized again...I had a 103 temp and convulsions.
Then I started having low pressure headaches, which are the worst headaches I've ever had. I can stay up for about 2 hours and then have to lie down for about 3-4 hours. If I don't lie down right away then I get migraine like headaches and throw up. I've been dealing with this for over a month.
My upcoming surgery, my NS is going to clamp shut my first shunt and keep the second shunt with the resevoir.
I'm really scared/nervous about this third surgery. I think I'm scared that I will get sepsis again or have some complication. I am so tired of having surgeries and keep thinking, "what if this one doesn't work"? I'm trying to stay positive but for some reason this next surgery has got me rattled.
Sorry this is such a long rant.
After that surgery about a week later I got sepsis and was hospitalized again...I had a 103 temp and convulsions.
Then I started having low pressure headaches, which are the worst headaches I've ever had. I can stay up for about 2 hours and then have to lie down for about 3-4 hours. If I don't lie down right away then I get migraine like headaches and throw up. I've been dealing with this for over a month.
My upcoming surgery, my NS is going to clamp shut my first shunt and keep the second shunt with the resevoir.
I'm really scared/nervous about this third surgery. I think I'm scared that I will get sepsis again or have some complication. I am so tired of having surgeries and keep thinking, "what if this one doesn't work"? I'm trying to stay positive but for some reason this next surgery has got me rattled.
Sorry this is such a long rant.
There is just no easy way out of this mess, is there?
One of the articles in the IHR 08 conf notes the doctor states their goal is to put shunt surgeons out of business by finding ways to drain spinal fluid without mechanical shunts and valves but then he finishes with "I'm not sure that's in my life time but that is what we need to be focusing on."
Just my luck. Once again I was born in the wrong century. Being a pirate, living the good life and dieing young vs 21st century where every kid gets a gold star but 1 out of 100,000 gets screwed with IIH/PTC.........hmmmmmm.... I vote for Jimmy Buffet and being born 200 years too late, my ocupational hazard being my ocupations just not around........................
I like it, I like it. The heck with FDA approved hardware, we can just go over to Homedepot and pick and chose a nice pretty Delta or Moen or Kohler faucet. And OMG a plumber to hook it up has got to be a lot cheaper than a Neurosurgeon. We just need to make sure "Joe the plumber" uses silicone pipe dope to minimize the risk of infection and we are good to go.
Christie
Sorry to have crushed your dreams but the Orphan IIH Society has not yet created the Perfect Solutions Department so we are all forced to stand in line at the "you have what?" department. Not to be confused with the DMV where you stand in line to see what line you need to stand in. Should you have any complaint about this issue please see your local congress person and demand a few hundred million in funding to allow research and the building of the Perfect Solutions Department.
Welcome to the group. We hope you find the support you are looking for and have a little fun along the way.
TJ
I feel so bad that you think we crushed your dreams? It helps to remember that most people who have successful shunts don't post or come to these support groups/sites. Before I had my kidney transplant I read so much that terrified me, but now, almost 4 years later my new kidney is still working beautifully. Jazzy
Thanks for bringing us back to reality. You are 100+% on target with that. And it is good to have some positive shunt experience in the group. It is just like everything else in life. Not as many customers take the time to call or write about positive experiences as they do about complaints.
TJ