Hi everyone, (posted here and in the Hydrocephalus forum)...
I am on the hunt for answers to why I cannot shake these symptoms that are so negatively impacting my life.
Constant headache, pain, pressure, swooshing sounds, tingling sensations and dizziness rule my day.
I also experience short-term memory issues and trouble stringing thoughts and tasks together.
7 months ago I had an endoscopic third ventriculostomy to address aqueductal stenosis. I have a
2.1 cm posterior fossa arachnoid cyst, about which there has been much debate with respect to it's role in
my symptoms. There has also been an opinion of a Chiari-like scenario due to the cyst crowding things, although
MRI shows no herniation. The cyst was left alone, as my surgeon felt the ETV was the appropriate action at that time.
Since the ETV surgery I have had increasing pressure feeling inside my head, like someone is in there pushing
and trying to get out. The pain knocks me out, and I feel like I have a 20-pound weight on my head. The
swooshing sound is new since the surgery, and it gets so loud in one ear that I can hardly focus on anything else,
especially in the latter part of the day and all night. Standard tylenol and 800MG ibuprofen do nothing.
Gabapentin does nothing. Endocet works for about an hour.
My neurologist has set me up to have a lumbar puncture to measure intracranial pressure, and says that will help him know
which direction to head in next. Latest MRI and CSF CINE flow study reports say the ETV is good (patent) and flow is "adequate". But I
still see little flow in & out & around the 3rd & 4th ventricles. My neurosurgeon even cancelled a check-up appointment on me, saying
that the MRI shows my brain is "anatomically correct" and there's nothing else he can do.
I feel I have an "ok" set of docs to work with, but long waits for appointments and procedures have me trying to find out all I can on my own.
Any input or feedback shared would be greatly appreciated.