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,
Came home from surgery on my second shunt revision for low pressure headaches last Friday (May 27). So Yesterday (Wed) I got a severe low pressure headache after 3 1/2 hours of being up (which was better than before the surgery, since I was getting them after 2 hours of being up).
Today I got it after 4 hours of being up. So a little better.
Has anyone had this surgery and had something similiar or did your low pressure headaches stop immediatly after they revised your shunt?
Thanks, Jazzy
Came home from surgery on my second shunt revision for low pressure headaches last Friday (May 27). So Yesterday (Wed) I got a severe low pressure headache after 3 1/2 hours of being up (which was better than before the surgery, since I was getting them after 2 hours of being up).
Today I got it after 4 hours of being up. So a little better.
Has anyone had this surgery and had something similiar or did your low pressure headaches stop immediatly after they revised your shunt?
Thanks, Jazzy
Prior to the surgery I had two shunts and a resevoir. Now all I have is one shunt and a resevoir. I'm so depressed that this might not have worked. I actually was going to try and take a saturday class at the junior college and now I can't take the chance. Just when I think I'm going to get better it seems to not happen.
Sorry for being so down just sometimes it gets to me.
Thanks for listening.
Jazzy
I have never known anyone who had too much drainage til this list, most shunt failures I had read about on other boards had been from blockages, mine just quit altogether (and was removed instead of revised), sorry I can't be of more help...hope someone can be of assistance.
Big Brat
I asked my NS if it is common for what is occuring to me and he said he doesn't know (great) and he won't do anything for a couple of weeks to see if it resolves on its own. He said the only other option is another (which would be my third) shunt revision.
I did read a research article that looked at a lot of LP shunts and said that the main reason for revision is that the shunt is draining too much fluid from the brain.
thanks and blessings, Jazzy
Good news is you are not alone. I will tell you I hate when I hear "wait a couple weeks to see what happens".
My research agrees with yours about over drainage being a primary problem. That is the #1 reason I will not accept anything other than a programmable shunt when I get mine. And #1 fear of someday ending up with an Aquired Chiari. Everyone is different. Diamox works differently with everyone. They do an educated guess at a shunt pressure range, put it in and then send you home. Things change, you stop Diamox, you change other habits and the next thing you know the shunt aint doing the right thing anymore so time for a revision. I want the revision to be pushing a magnet against my body and turning it to a different setting rather than general anesthesia and weeks of recovery. My first NS consult the guy said no need for a programmable cuz revisions are easy. BULLSHIT. Maybe for him, but not for us. Anyway I am getting cranky which is good cuz that means I might be able to sleep soon.
Good night. Hope things take a turn for the better real soon.
TJ
you are so right, and thank you for that comment about the magnent, its one point I will have to ask from my other post.
I have had the complications on the other end so, NO a revision is not always a simple procedure.
Its not something that should ever be looked at as something well when it fails we can just fix it later...
I don't get why they plan to fail...
When I worked in an office, we had a sign that read Failure to plan was Planning to Fail, and it seems thats what they are doing to us now. They just plan to revise it, well what happens when the revision doesn't work, other options aren't necessarily better either.
Sorry I am having a bad day and I have yelled at lots of docs over the last 3 days, and more to come....my temper is coming out, and that does NOT help my pressures stay down.
Charlotte
My 1st LP shunt resulted in 8 days of horrific pain in the fetal position in the hospital b/c my pressure was too low. Also contributing was the fact that my idiot NS tried to take me from a 40 pressure to a 7-10 pressure and I just couldn't handle the quick change. I had a revision to bring the pressure range up to 17-20 which helped but I went home to six weeks of headaches through the recovery. I know we are all sick of the "let's wait a few weeks and see what happens" but I eventually did adjust somewhat to the 17-20ish pressure. That was six weeks I would not wish on anyone. My suggestion is to make sure you are dealing with a NS that you trust and have confidence in - which is not always easy to find. If you are continuing with the low pressure headaches go back in and talk to your docs again. They should be able to do something for you other if this is still going on. Best of luck.
Bianca
thanks, it helps to know someone who went through what I did, though I wish no one ever has/had to go through with this stuff. You also gave me some ideas of good questions to ask my new NS.
I just got my paperwork to a new NS but he is out of town for 2 weeks, so will make an appt. with him when he gets back.
After you said that you had to wait 6 weeks, it dawned on me before this last revision that my NS waited 6 weeks before he did the last revision.
I'm at about 4-5 hours before I have to lie down right away from the Low pressure headaches. Ok, I'm having a brain fart and lost what I was going to say, lol.
thanks again, Jazzy