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
Thank you for sharing that. My senses have been hyper my entire life, I have lots of the Asperger’s traits. This weekend 1/11-1/12 I’ve had a severe headache the entire time. I have taken my Rizatriptan which dulls it somewhat but limited to two pills in a 24 hour period. I do need to schedule a new MRI to see if something has changed. Haven’t had a scan in 10 years.
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Hey @Edwin_K ,
I was trialled on a number of differing triptan meds. For me, I found that whilst the triptans did have ‘some’ benefits, my body quickly built a tolerance to these meds and the break through headaches seemed to increase, both in frequency and severity. I’ve often compared headache management to juggling bowling balls, I just know that at some point one of those balls is going to smack me in the head.
I make a point of having a CT scan annually. If there’s any change reported, then I’ll escalate it and get an appointment with a neuro, but otherwise I manage the best way I can.
Merl from the Modsupport Team
I am in the hospital now due to dizziness. I got up yesterday morning to get ready for work and as soon as I stood my world was spinning so badly I started heaving within 30 seconds. I stumbled down our hallway and got to my wife who was in the kitchen and I was trying to tell her something was wrong and started heaving again. Well now that I’ve been in the hospital for 30 hours, 2 CT scans and 1 MRI later they won’t even listen to me about my Chiari. I tried to tell them I needed a special MRI that measures CSF flow but refused to order it. Well a new neurologist came on shift and has dealt with this and ordered the special MRI immediately. Hope to get some answers soon.
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Hey @Edwin_K
Did you get any answers??
Yes, that’s correct. It’s a 3T or 3 Teslas of magnets (A tesla is measure of magnetism). It was explained to me that they can take the images between heartbeats with a 3T MRI and it shows the flow of fluid with our pulse. IMHO it’s a waste of time for me to have anything less than a 3T scan. I have to travel into the city to obtain the scan as locally 3T is not available, but that’s what I need.
Merl from the Modsupport Team
They finally got the CINE MRI scan done last Wednesday. They had to bring 2 people in from the local college that teaches the radiology/nuclear medicine courses to perform the scan. Long story short is I have 3 cervical disc damaged and putting pressure on my spinal cord and nerve roots. C5/C6 has broad based posterior protrusion causing moderate central canal stenosis. So this is creating the same type of symptoms as the Chiari, the blockage is just a few inches lower.
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Hey @Edwin_K
“…causing moderate central canal stenosis”. Ahh, right. I have aqueductal stenosis, so above the spine.
Is there a plan to manage it or is it better left alone?
Merl
I do not know yet. Have to set an appointment with a pain management Dr. and then a surgeon to weigh my options. As of now I am using my inversion table and limiting it to 45 deg and using a traction device that I can add 1 to 8 pounds to it to gently rehydrate my disc and allow them to heal/reabsorb the nucleus of the disc. I’m actually feeling better this week that I have in a couple of months.