Last week my 9 yo son had a endoscopic fenestration of a large arachnoid cyst. The surgeon enlarged a previous hole (1996) in the rt ventricle, into the cyst, and then into the left ventricle. When they entered the left ventricle there was some bleeding. A temporary shunt was placed until the fluid ran clear and trickled to nothing. He was transfered to a regular floor. BP was up. No fever. Major headaches. He was released. A day later he started to vomit with the headache. We were readmitted for a day.
The problem is this - He has major headaches almost constantly. This is the first he has stayed awake for any length of time (4 hrs out of 11). He can't eat anymore than a few bites without feeling nauseated. Most of the time he doesn't like to drink (except for a couple of days where he craved fluids).
Is this normal after this type of surgery?
What can we do to help him with it?
I just read an article about slit ventricles. (I don't know that this is the problem. I do know they reduced the size of his ventricles, tho.) Have we possibly sentenced our son to a life of severe headaches instead of small nightly ones?
I really need help here. I don't know what to do. His surgeon says that there is nothing surgically to be done because the re-admit CTscan did not show a difference over the post-surgery CTscan.
If this is a case of the brain readjusting to the new pressure status - we will adjust, too. That is temporary. However, what is the chance that we have , in the interest of helping, introduced a greater disability into his life? Will these crippling headaches last indefinitely? Will his lethargy decrease? How can I get some food into him so that he doesn't become malnourished? He's lost quite a bit of weight.
Sorry if I sound a bit frantic, but I am.
Arachnoid cysts are anomalies that occur during development that can range
from small and insignificant to quite large, causing weakness and headaches.
Similarly the treatment for arachnoid cysts depends on their symptomatic
nature. When surgery is considered there are a few options. Fenestration
involves poking holes in the cyst walls so it can drain into the regular
spinal fluid channels - the ventricles. If fenestration of the cyst fails,
about 40% of the time, the surgeon may consider a shunt to decompress the cyst.
Your son may have continued problems from the arachnoid cyst reaccumulating.
One would need to look at the CT scans that were done in relation to the
symptoms your son is having and the prior surgeries. If the symptoms improved
after the previous surgeries and have since gotten progressively worse, a
shunt may be a good option.
You should discuss these issues with your neurosurgeon for some clear answers.
If you do not get good answers, seek another opinion.
You may choose a consultation at the Cleveland Clinic by calling the Neurosurgery
desk at 216-444-5672.
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