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 recently had the bilateral optic nerve sheath decompression surgery to treat my Pseudotumor Cerebri symptoms (Dec 30). Well, I had my first lumbar puncture in September 2008 and my level was 38 (21 was the normal range). Before the surgery, I tried the Diamox and my body couldn't handle it and my doctor said I was considered a "medication failure" and I couldn't take the medicine usually given to those with this condition. I went back to my surgeon last week for my six week check up and he now wants me to get another lumbar puncture because he said that my optic nerve is not as flat as he would expect it to be right now and it hadn't changed since the one week post-op visit?? I'm confused.. I also starting having neckaches again and a little bit of splotches in my right eye again. He said he wants another LP done because that is the only way they can check my pressure which I know is true. I just didn't think it would be so soon....I am really dreading the LP, especially since I ended up having to have a blood patch done the last time I had it done...I am so nervous...and I am so tired of having to deal with this...I was originally diagnosed in July 2008...
See if they can figure that one out. I agree with Duchess. Did you get the NONONONONONONONONONONO......NO part? Actually also if you are taking diamox you should not take any thing with asprin even Exedrine (SP)since it has asprin in it.
Yes mine is this Friday too but I am a California boy now so we will have to compare notes on Saturday. I must confess though that I have never asked about closing pressure but definately will this time.
Good luck. If you are like me you will be feeling pretty good by the end of the weekend.
It is almost LP day. are we excited or scared? Should be looking forward to that sweet nectar some of us call relief no matter how long it last. Well I am getting a little antsy about my neuro-surg appt on friday. I can't see this happening but I worry that the doctor is going to say you are not a good candidate for some reason or the surgery will be scheduled the second tueday of next week( did u get that)? Or he will be so booked up they will tell me ok we can get you done April 18th. OMG OMG I am making myself a hot mess and I woke up with 4 messages which made me smile feeling good with sleep now I am...shoot I don't even know what I am but I need to stop it. Must take break for ciggy treat and another cup of coffee will be back...
Not excited or scared, but just like you. I want to know what the plan is and when are we going to get it done. I want a schedule, I want commitments, I want the plan laid out so I know what to expect for recovery. Show me pictures with cirles and arrows and a paragraph on the back of each one explaining exactly what you plan to do to me. And make sure HOUSE is looking over your shoulder as I want to feel like I am the most important patient in the world for those few precious hours, days or however long it takes to make me whole again.
Other than that I am a pretty basic guy who isn't really that demanding.
Sorry I missed you last night. Hope you got some sleep.
TJ
those are my exact thoughts for my neuro-surg appt tommorrow. Give it to me give to me straight be ready to answer all my questions. Because this is like a MAJOR job interview cause this shunt surgery cost well above $30,000. You better be close to kissing my booty. Did you get sleep? I got about 4-5 hrs now I am fighting it off again but I think I'll take a nap while I can. Stay away from my OXY while I am sleeping. see you guys in a couple hours.
And to Duchess on her nero surgeon appt. let me know how that turns out. If you have any questions let me know.
this is seriously turning out to be a huge LP party so maybe we should get some more of you to sign up and we can rock this group! So far in attendance are:
Greenbay fan (won't hold it against you)
Pam Smith (yes we forgot her on another post)
TJRasta (but only TJ and not his cat Rasta)
Last chance, going once, twice, closed! no more subjects needed.
Good Luck All!
Duchess - I hope your appointment goes well and you get all your questions answered, etc.
Viking Fan - I hope your LP goes well too.
I will let you all know how my LP went as soon as I can.
Ugh...two hours to go before I have to go to the hospital..