I was diagnosed in 2013 and had decompression surgery late 2013. For the first couple of months I felt like an entirely different person. Even the first 6-7 years were much better than before my surgery. Over the last 3-4 years my symptoms have been returning but not as bad as before surgery. I am curious about hearing music when all that is on at night is a fan. It sounds like the big band music played during some of the Looney Tunes cartoons, sounds weird I know. The other issue I’ve been dealing with over the last year is that after I eat and get full my ears start hurting and popping like my cranial pressure has risen. Has anyone else encountered this?
Hey Edwin,
I’m Merl from the Modsupport Team.
I had a VP shunt installed to manage my pressures and all of my senses went haywire. My hearing, my sight, smells, my sense of touch all changed. They all seemed to go into overdrive. My wife would touch me unannounced, and it was like a 240volt current passing through me. Previously pleasant smells seemed suddenly acrid. As for my hearing, with every step it was like I was wearing wet shoes, with a slosh, slosh, slosh with each step. Just weird. Now, for me this was considered by the medicos as ‘just recovery symptoms’. I had the medicos telling me “Well, that just can’t be happening…” with the surgeon saying “I didn’t go anywhere near those regions of the brain…” Over time this seemed to normalise, or my body adjusted somewhat to these weird and wonderful sensations. I’m more than 10yrs on since my last neurosurgery and still today I get some of those same symptoms. I got frustrated with the medicos and gave up on getting answers. They’d do a scan saying “The pictures look good, so all is good…” My symptoms say otherwise, but “The pictures look good…”
So, here’s what I do. Each year I go and have a scan, just to keep an eye on it all. If there’s no discernible change noted in the report, I leave it at that. I’ve turned up at A&E reporting an increase in my symptoms but if “The pictures look good…” I’ve been sent on my way. What I look out for now is a progression of symptoms. A headache for me is ‘normal’, even a bad one. But if that headache turns into visual distortions and numbness in my extremities (hands and feet) that’s a bit more concerning. If that then progresses to nausea, for me, that’s a clear sign of “ACT NOW!!!”. These are my signs, but it took me years to establish what was ‘normal’ (as if any of it is normal) and what was an “ACT NOW!!!”, with many false alarms along the way.
I’ve often explained neurosurgery like opening your computer case and throwing in a handful of aluminium foil flakes. If you did that, you’d have short-circuits all over the computer system. The surgeon has opened your skull and disturbed those microfine neurocircuitries and the outcomes can be numerous, and the medicos don’t always know why.
My recommendation: Go and get a scan, just to check. But don’t be expecting any great answers. If the scans look OK, it’s easier to accept and move forward sometimes. In the past I’ve queried/questioned the medicos, as my symptoms are far from OK, but have found they do not like being questioned. Some actually get a bit anti about being questioned.
Hope it helps
Merl from the Modsupport Team