One patient with glioblastoma still alive nine years later
by SarahGrey on Mon Apr 15, 2013 01:26 AM
It was a looong day for us in the ER. My husband had a severe headache this morning and actually wanted to go to the ER. (he never complains - ever). Turns out he has fluid around the brain - NOT in it. The ER doc was very specific. I asked what causes it and he kinda mumbled something - he clearly had NO clue. Sheesh. Our NO read the CT Scan and said my husband was good to go home and to follow up tomorrow.
Curious - has anyone else had this and... what happened? Was it bad, no big deal, did you need a shunt or?...
Thankfully, my husband's headache went away after a few hours and we're home resting now.
by bpp30m on Mon Apr 15, 2013 01:55 AM
Well thats kinda confusing to me because im thinking the fluid around your brain also travels through the ventricles too. So technically the fluid is not IN your brain but runs through it... hope somebody corrects me if im wrong. If its elevated pressure in the csf then it can cause all kind of havoc. They did a procedure called a third ventriculostmy on my son about a year ago. Its where they drill a burr hole thru the ventricle to get the fluid flowing and get the pressure down. Not sure if thats the same thing wrong with your hubby or not but sounds familiar. Our neurosurgeon said that there was a good possibility that the burr hole would "heal itself" and close back up in which case he would have to have a shunt put in but because the doc did not want to unless he had to e decided to take our chances on the 3rd vent procedure. I dont know how to spell the name of the MRI that specifically looks at the ventriclar flow but its sounds something like a sinni MRI or maybe scinti Mri. We unfortunately are at a point where my son will have to have the shunt and an ommaya reservoir put in.
Hope this helps
by Glitzy1294 on Mon Apr 15, 2013 02:38 AM
This happened once to my husband in the hospital and they were going to end up drilling a hole or putting in a shunt. I signd the release but then we ended up not needing it because somehow it took care of itself.
Sorry that it was such a long day. Keep us posted with what happens tomorrow.
by Kjohnchas on Mon Apr 15, 2013 10:00 AM
by SarahGrey on Mon Apr 15, 2013 11:17 PM
The ER was actually at the same hospital as the Cancer Center we go to and so our Neuro-Onc could look at my husband's scan and tests. So that was nice and easy. :)
I called my husband's NO office today and got more information. The neuro-onc looked at the scan and somehow it's just one area around the brain that has fluid accumulating. It's not bad enough to do anything about and my husband should just take Tylenol and see if that helps. (it did somewhat - I then gave him some CBD drops and the pain/pressure went away) ;)
However, my husband seems a bit "out of it" and this is all very frustrating... For every step forward, we seem to take three stumbles backwards... :(
Anyway, the nurse told me that unless my husband gets much worse then he is ok just to wait a few days til his scheduled regular appointment. Sigh. Sooo... We wait.
I realized yesterday, that something likely happened when my husband had a fall last week. :( Hopefully it was just minimal and since the doctor didn't make a big deal of the scan, I pray my husband will just heal (as Glitzy's husband did) and things will get better...
I'll keep you posted - thanks!
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