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, just had my shunt tested, it seems like there is a leak or a disconnection of the tubing from my shunt valve, so that is why, even though my NS just tied of my shunt, I'm still having low pressure headaches/nausea/vomiting.
Am scheduled next week for a new shunt revision (don't know the exact date yet). I really like my NS, he is very honest, open to suggestions, and a great NS...but saying all that I still had to suggest this test be done, which he gave me all the credit for (ha).
So another surgery, I am so hoping this will do the trick and I can get back to at least getting out of bed longer than an hour a day before throwing up!
Everyone here has helped me so much, when I'm at the hospital or having a procedure I think of everyone and it gives me strength!
Luv, Jazzy
Am scheduled next week for a new shunt revision (don't know the exact date yet). I really like my NS, he is very honest, open to suggestions, and a great NS...but saying all that I still had to suggest this test be done, which he gave me all the credit for (ha).
So another surgery, I am so hoping this will do the trick and I can get back to at least getting out of bed longer than an hour a day before throwing up!
Everyone here has helped me so much, when I'm at the hospital or having a procedure I think of everyone and it gives me strength!
Luv, Jazzy
Keep us posted.
Hope
Fingers will be crossed all next week for you. Let us know how you get on ok? Best of luck! Cath
This will be my sixth shunt revision. Have you ever thought to yourself "I never thought my life would turn out like this"? Seems to come up a lot for me lately.
The shunt test wasn't that bad, except the Dr. hit my spinal nerve two times when doing the spinal tap, so now I know what it feels like to be electrocuted (onlhy on my left leg) but it resolved right away.
I've had so many emotional up's and down's. Thank you all for puttiing up with me.
I totally hear you about thinking "I never thought I would be in this position", was in denial about it for the past year and am only starting to admit to myself how much I am suffering and struggling. It's exhausting, but I know we can all do this! Especially with the wonderful support I have found here :)
Mary
Hello, Did the shunt function study go as I said? Other than them zinging your nerve? I hate that! Sorry to hear about your needing a revision. I am also waiting to be scheduled for surgery. Neuro Surg said he will try to unplug my VP shunt but that there will be a high chance of hemmorage. I wish I had a good Dr. like yours. Best of luck to you. God bless. Amy
Hi Hannnnah, I can go through the 5 stages of grief multiples times in a day, ha. I'm more now in the space of "it is what it is", which doesn't mean I have given up, I still research as much as I can and ask questions about what I find to my NS. I know that if I can just let myself feel whatever I feel it will usually pass pretty quickly. That is what I love about this support group, you all understand what is it to deal with this stuff.
Yes, it did. The zinging of the nerve wasn't too bad because it stopped right away. I've had a diff Dr. actually hit my nerve and I suffered with pain for weeks after.
It was pretty easy, my NS took out about 1cc of CSF and put in 1cc of isotope dye so I didn't have to lie flat for two hours after. Instead of a CT scan the hospital had a machine that reads gamma rays, the tech told me it was less radiation than a CT scan. It was pretty cool to see a movie being done of my CSF flow. Like you said, the nice part is that if I had to go in the next day for more pictures they wouldn't have to do another spinal tap since the isotope stays in your system about 2 days. The machine rotated around me and I did two sets of 20 mins just lying on the gurney. Thank you for calming my nerves by telling me how it was!
I'm sorry to hear you have a plugged VP. Will your Dr. just put in a new VP? It really sucks but I know that we can do this. Keep us updated-when will your surgery be?
God Bless you too, Jazzy