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 am now up to 6 hours a day with no low pressure headaches. It has been since January that I have been able to stay up this long! Today I walked 7 blocks up to the hospital and then the 7 blocks back, I almost cryed, I am so happy to finally be on the mend. I am off my post op instructions of lifting no more then 10 pounds, viva la vacuum cleaner here I come!
My NS said I only had 1 more space to move up if I wanted another adjustment done, but since I incresed from 5 to 6 hours of being able to be up, I decided to wait until I plateu. He said that it can take quite awhile esp. for a chronic condition like mine, but couldn't give me an estimate, says it is diff for everyone.
All I can say, is thank God for programmble LP shunts, I couldn't have gone through all of this without all your support, there were days when I did't think I could go on and you all gave me strength, thank you, thank you! :) Jazzy
My NS said I only had 1 more space to move up if I wanted another adjustment done, but since I incresed from 5 to 6 hours of being able to be up, I decided to wait until I plateu. He said that it can take quite awhile esp. for a chronic condition like mine, but couldn't give me an estimate, says it is diff for everyone.
All I can say, is thank God for programmble LP shunts, I couldn't have gone through all of this without all your support, there were days when I did't think I could go on and you all gave me strength, thank you, thank you! :) Jazzy
Glad your feeling better and the surgery has paid off.
Take Care,
Angie
Glad to hear the programmable shunt is working out. Boy I hope you start getting no low pressure HAs real soon. I can't imagine only 6 hours of no low press HA.......ugh.
As for taking time, for me after a LP it would take 2-4 weeks for my pressure to equalize so it took about the same for me to feel the shunt change although I only had one before things went bad. Did you get any relief form LPs? Does that make sense?
TJ
Hi TJ, 6 hours is actually a miracle for me. I guess we all think we couldn't deal with something until it happens to ourselves. I am so grateful that at least I have the 6 hours and not 1 or 2 hours like before.
An LP only lasted 12 hours for me. I was told that it takes about 6 weeks after a shunt to for the body to get accustomed to the new CSF levels, but it is diff.for everyone...some shorter, some longer (from a diff. NS). I'm thinking positively and trying not to focus on what I can't do but what I can right now. Jazzy
I had an adjustment done a couple of days ago, and today I have no headache whatsoever. It's such a relief! It seems like it's been forever since I was headache free.
Angie, I had to chuckle about the vaccuming. It's driving me crazy because the floors here really need a good going over. But I am being good, and will try to look the other way.
TJ, when I was having LP's, they always gave me relief soon afterwards. I would get to the point where I actually looked forward to one, knowing that relief would come. I always dreaded the thought of a shunt, but with scar tissue and my spine getting bad, I finally reached the point where I was willing to have one put in. And thank heavens I got a programmable one!
And I am thankful to have found this place. I do not feel so alone now with the PC.
Best wishes to everyone!
I am so happy for you. Who knew vacuuming could be so much fun? Isn't it funny how much the healthy world takes for granted? You don't know what you miss until it's gone. I pray that your hours get longer and longer and longer and soon your adjustments won't be necessary any more because life will just be perfect. And, if ever there comes a day when things aren't perfect just call me and I'll come vacuum for you.
MM3
Yes, amazing isn't it how an adjustment is so easy and can make such a big diff..am so,so, happy you are headache free. I know it is very tempting to overdo it, but after so many surgeries I have learned to take it slow and not mess around getting complications from overdoing it..tomorrow I'm cleaning the kitchen floor, ha. I pray that you have con't headache free health.
Hi MM3, you can come over anytime you want! Yes, so true, how the most simpilest of tasks can be taken for granted, after working with pt's who have had major strokes, just putting on pants can be such a chore...but until it happens to you, you don't really realize how much we take our health and what we can do for granted.
I actually was able to stay up 6 1/2 hours today...and that is even with vacuuming! My husband helps with the vacuuming but OMG, the dust balls almost over took me, lol.
you are my true sister Angel and hope you are feeling better, Jazzy
I am having some other post op problems though, but hopefully those will resolve soon.
I've been being good. My backside is well acquainted with my recliner!
Take care and have a blessed day!
Liz