Since my diagnosis in 2013 and decompression surgery my symptoms have been gradually returning.
My normal body temp runs around 97.2-97.4 deg. I have noticed over the years when I have been working and doing manual lifting and get exhausted I will run a low grade fever. Normally will last through the evening and will be gone by morning. I’m posting because it is happening tonight and running 100.5 with no other symptoms. Has anyone else ever experienced this ?
Hey Edwin,
I’d be recommending you speak with your surgeon.
I’ve had massive temperature issues post neurosurgery. Initially they thought that I may have an infection circulating through the CSF, they did a lumber puncture, took a sample of the fluid but no infection was found. Due to my surgeries they have inserted a shunt to drain and regulate CSF pressure within my skull and in doing so damaged my hypothalamus. This has contributed to my whole system going haywire. I sweat when I get too cold and the heat really knocks me around something terrible. I have to keep my temp within a narrow temperature band or my symptoms explode. For example, I’m in Australia, today we’ve got 104F and today, I hibernate inside under refrigerated a/c.
There can also be some blood tests that can be done to check specific levels of hormones and elements within the blood. It was via such tests that it was identified I was low in Vitamin D and calcium, for which I now take supplements. Now I must admit the supplements have not fixed my temp issues, but my ‘D’ is getting back up.
Merl from the Modsupport Team
Thank you for the information. I had never heard of this until 2013 and now I am hearing of it a lot. I have also hear horror stories about the shunt and troubles during the installation or the shunt clogging for some reason.
When I feel the pressure building I can tilt my head back and move it from side to side and it sounds like
liquid squirting back and forth, squishy noise. If that makes sense.
Hey Edwin,
I had that "squishy noise’ just after the craniotomy as the seal had been broken, I could hear the fluid squirting out around the edges of the craniotomy bone flap. I was told by the surgeon that eventually the bone would heal, sealing up the holes, which it did. Now, in saying all of this, also having a laminectomy may alter the fluid flow and retention. This too could cause temp fluctuations.
Yes, shunts do have their own issues. I’ve had blockages and breakages. At one point the dr’s decided to block it all off overnight to see if I still required the shunt. I was told they’d block it off for 8hrs, but within 4 hrs I was symptomatic, by the 6th hour I was violently ill. Seems it was shown that the shunt is still needed.
Merl from the Modsupport Team
Thank you for the information. My decompression surgery was in 2013 and all should be healed. My surgeon didn’t do the duraplasty because he saw fluid flowing great once the skull was opened up. He did remove the bone from top vertebrae. This disease is so crazy and so many different symptoms. Fatigue has been horrible lately on top of the headaches.
2013 was my last neurosurgery too, I actually had 3 brain surgeries that year. I too should be all healed but still today I find I’m on a bit of a see-saw of symptoms and some are just NASTY. One of the test they did was to inject a radioactive dye whilst I was having a scan, they then followed the dye to see the CSF flow, where it flowed and where there may be a blockage or a flow issue.
“This disease is so crazy and so many different symptoms.”
OHH YEA, but let’s face it, all of the information our body sends us has to travel via the spine and that’s all been disturbed, no wonder there’s many differing symptoms.
“Fatigue has been horrible lately on top of the headaches.”
And I find they feed off of each other. The headaches drain me which adds to the fatigue, increasing the headache, adding to the fatigue… It’s a never ending battle that I have to carefully manage. I know if I do too much today, I can be bedbound tomorrow. Pushing self only makes things worse.
Merl from the Modsupport Team
Agreed. When the pressure starts rising it is like a big black cloud on top of my head pushing down.
Weather also kills me as well. I’m praying it gets more attention in the medical field and newer techniques may come along. I also had an MRI with the contrast so they could watch the flow. I’ve been running a low grade fever on and off since Thursday. No other symptoms so I figure it is the Chiari.
Weather is a common issue for many people with neuro issues. I have asked the dr’s about atmospheric pressures and it’s influence. I can tell when it’s coming in heavy, because my head gets ‘heavy’, but I get this ‘look’, like I’m crazy, most have denied any correlation at all. But I’m almost as good as a barometer 
A big issue with neuro is the variability, be that with symptoms or influences or triggers or effects. I am yet to hear of a 2 patients having exactly the same route on this neuro journey, even in my own case where I’ve needed multiple neurosurgeries, none of them have been the same in recovery, some people can come through it all with very little to no side effects and yet for others… …OMG, it’s endless.
But If you’re ever concerned, go get it checked out. Look, they could do a scan and come back saying ‘It’s all fine’, but by the same accord if you ignore things (Like I did) and there is something amiss, you could do yourself more harm than good in waiting. You will learn your own signs of what is ‘normal’(as if any of it is ‘normal’) and what is an ‘act now’ symptom/side effect. And if you’re not sure, get it checked out anyway.
Merl from the Modsupport Team
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