My follow up is on Monday the 28th but I’m curious. Has anyone experienced that random shivering sensation a lot after their surgery. I got the operation on the 10th so about two weeks ago. I’ve been experiencing that shivering ever since. I plan to ask my surgeon on Monday but I was wondering if anyone else has experienced this.
Edit: it’s a shudder. Shudder is the word I was looking for.
Yes, folks can have problems regulating their body temperature. You’ll have to let us know what you hear. Do you want to know what causes it or what to do about it? I found out some info a while back.
It isn’t that I’m cold but rather that random shiver you get every now and then. Some people use the expression “your grave’s been walked on”. I saw my surgeon yesterday and we both figure it’s because of the adjusting flow of csf.
Shivering can also be a reaction to the anthethetic. General school of thought is it lasts about a day but anthesthetic can take 2+ weeks to get out of your system so, from a lay person logic standpoint I don’t see why one day is the current stanard for shivering, unless it’s violent shivering and no one is tracking the more mild random shivering you’re talking about.
I can also tell you my mom had random shivers for at least a month after one surgery but not after a different one.
I have a feeling it’s all about the anestheic.
azurelle
That’s a funny brush off. Sounds made up and he doesn’t really know! Given that you say it is not temperature I have to agree with azurelle. Good luck with it resolving over time.
My neurologist says it is the pressure - where your brain is protruding out of your skull at the back of your neck - she she says this is your sleep pattern/ temperature etc
The word I’m looking for is “shudder”. Everyone gets that random shudder from time to time but it’s happening daily since my decompression. It’s starting to become more frequent too… at first it was once a day, then a couple times and now it’s happening at least five times a day. I’m beginning to get concerned. I’ve also had headaches non stop since Wednesday (Jan. 30) and nothing is helping. The hospital I went to is fantastic but it’s really hard to get a hold of them. I always have to leave a message and hope they’ll get back to me…
Hey Geo,
This is something I have had way too much experience with. I also get ‘shudders’ but as part of my surgeries they have gone down through my hypothalamus, the body’s temperature control unit. My body temp is all over the place. I have a tendency to sweat when I’m cold and REALLY overheat when it’s hot, being in a hot country like Australia this can be real difficult to manage around. I have a woollen underlay on my bed. My side of the underlay is breaking down from the sweat, whilst my wife’s side seems fine. Depending on which specialist I have spoken to about it (And there has been a few Dr’s) I get a whole lot of differing views.
The surgeons view was ‘it will take time to adjust’ to the change in CSF flow. Time has not helped. Another suggested it was damage to the hypothalamus that was the issue. But the surgeon will not entertain nor even consider this idea at all, rather pointing at diet as the cause ie I’m having a reaction to foods. The surgeon also suggested that if it was due to hypothalamus damage, other hormonal issues would also impacted as the hypothalamus controls a few differing functions.
One dr also suggested an infection elsewhere in the body, but if an infection lasted this long it would involve sepsis by now. One suggested it maybe a medication issue and ran me through a whole heap of variant trials of meds, these didn’t help. In fact some of the meds had exaggerated side effects elsewhere.
So as much as I tried to get answers and find remedies, I was unsuccessful and learnt to manage the best way I could ie ice packs/heat pads and hydrotherapy. For me it’s all become a case of self management.
It will be interesting to hear what suggestions you dr’s make, so please do keep us informed.
Merl from the Moderator Support Team
It has occurred to me that in terms of temp control I have vaguely the same thing – I had very serious heat stroke about 25 years ago and at the time I was I told I would never feel temperature, especially heat, the same, which at the time I disregarded as crazy, but it’s been true.
When I get hot (any outside temp over about 80 degrees) I get HOT. I’m always in danger of heat stroke again and have to be aware of my surroundings. I also don’t feel cold as I should, just the other day when we were having a Polar Vortex in my area and the wind chill was negative 70 I gave myself a spot of frostbite on the tip of my finger getting gas. Stupid. But I never noticed the cold.
So, the fact that I have these issues from a non-invasive event makes me thing temp control issues after an invasive event would not be unusual.
At the end of the day we simply don’t understand how the brain works.
As Merl mentioned, I think your best bet is going to be self-management. And do, please, take it seriously, take it VERY seriously if you ever get hot enough to stop sweating as that’s the early sign of heat stroke – and heat stroke really has very little to do with external heat, it’s how you body is processing the heat internally.
azurelle
I spoke with a knowledgeable man at the last course I went to. He uses aggressive, end range and whole body neurodynamics to address body temperature regulation difficulties in people with concussion/brain injuries. I have started up. I should know if it works for me in about three months. Wish me luck!
Just thought I’d update ya’ll. I’m still shivering but now I actually get cold just before it happens. This is such a weird condition lol
I’ve had shivering (I would say chills) since surgery last month and last week I started checking temps. I’m having temps of 101-102 F multiple times daily.
New neurosurgeon thinks I’m having an ongoing chemical meningitis. Thinks it’s related to dura that was used.
My story:
I have another surgery scheduled for March 5th (next week).
I’ve had a decompression surgery on 11/29/18, then had CSF leak (between sutures; like a faucet) which resulted in another surgery for REVISION on 1/3/19. Then developed a huge pseudomeningiocele and was convinced a VP shunt would take care of it. So I had shunt placed 1/31/19.
I’m in much worse condition than I started. I had headaches with straining (tussive headaches), constant heaviness of head/neck, and fatigue. Now after the surgeries, I have constant headaches, tussive headaches, nausea, fever, chills and extreme fatigue.
My surgeries were done with a neurosurgeon who now I know is not a chiari expert (has barely done any chiari surgeries). I had only gone to him to review my MRIs as he was available the soonest but when I was there he said I need to be in CCU immediately due to severity of my condition (per MRI images). I got scared, got admitted and had surgery. I had an appointment with a chiari expert a few days later but couldn’t go there as apparently I needed to be in CCU with neurochecks every hour.
My surgery next week is with Dr Frim who’s considered an expert at these surgeries and I’m praying for better results.
Oh my! I’m sorry you’ve had to go through that. I hope all goes well with this new surgeon!