Chiari Online Support Group

Three weeks post Op and bad headaches


#1

It’s been three weeks since my decompression and I’m suddenly getting headaches like I was the first couple of days. Percocet will not work. It’s only ever caused nausea and vomiting since the surgery. I do have Valium for muscle spasms which makes it tolerable for about an hour but then it’s back to the pain. I’ve called my doc and left a message this morning but it always takes a long time for them to get back to me. So any advice is greatly appreciated thank you.


#2

Get anti-neasua on board ASAP. The last thing you want to be doing is throwing up from headache pain (been there, done that, don’t suggest it).

If Valium works you may want to look at using a muscle relaxant in the short term, taking it on a daily basis to stop it from starting rather than treating it after it’s started. The biggest trick to headaches is preventation rather than treatment.

I dunno about the timing, I’m coming at this from a migraine perspective, not a post-surgery perspective. I’m not particuarly surprised you’re getting headaches post-op, that makes a horrible kind of sense that you would get a headache as part of healing, afterall, you had brain surgery and although the brain had no pain sensors the rest of your head and neck certainly does.

The fact that muscle relaxant works tells me the headache is tension-type and starting in your muscles, probably the neck. Try heating pads on your neck and shoulders to loosen the tension.

azurelle


#3

I would give consideration to the fact that it could be the meds themselves and also that you could be building fluid on the brain. It was hydrocephalus that landed me back in intensive care a little over a week after my decompression.

I am not certain if you have been overly active since your surgery; if so, quiet time is important. Also remember the old-time remedies such as cool compresses and elevation of the head.

Stay the course with your concerns as headaches tend to be ignored by the medical profession. Those of us at this Website know that we are paving paths every time we walk into the wall of non-compassionate medical care.


#4

I must agree with both Azurelle and 9years.
The tension within your neck and shoulders may be playing a major role in your pain. I also MUST agree with Az in regard to throwing up, she says “… don’t suggest it” I’m telling you, avoid it like the plague. It is only going to exacerbate any head pain to the extreme.
Reporting symptoms verbally can be very discouraging when the medicos minimise your concerns. I’d recommend you keep some sort of diary of activity, meds and headaches. This can show a pattern where verbal can be seen as anecdotal. It can also show that you are being proactive in managing the best way you can. Some medicos can say "Ohh it’s because you are doing too much’ or ‘it’s because you are taking too much medication causing rebound headaches’. Often medicos can interpret ‘headaches’ as ‘normal’ considering you’ve just had surgery. For this reason I don’t call them simply headaches (Some medicos see this as ‘well, we all get headaches…’), these are mind numbing explosions of agony.
I also have to agree with 9years “…quiet time is important…” This was very difficult for me. Prior to surgery I had 2 speeds, Full tilt and stopped. That thing called ‘pacing’ was foreign but I soon learnt, slowly, slowly is the only way to do this thing called recovery.
Finally (From my experience) this thing called recovery is a marathon, not a sprint. I tried to do the sprint and fried myself as a result, doing myself more harm than good, my recommendation… ….ahhh don’t do that.

Merl from the Moderator Support Team


#5

Oh, I’ve thrown up… both before and after decompression. It’s the worst feeling in the world. I tried taking Valium ahead of time but it didn’t work. I’m going to have to stick to ice packs until my doc gets back to me. He’s really experienced in chiari which is lucky so I’m sure he can help me in some way. Thank you all for you replies. I’m trying to take it easy but my father seems to think that just because I’m no longer in the hospital, I must be well enough to do household chores. So far he’s had me empty and refill the dishwasher and sweep and mop. If I refuse he throws a tantrum. I can’t win.


#6

I have a question about your hydrocephalus. Ever since I woke up from the surgery I’ve been experiencing random shudders. Everyone gets them once in a while but they’ve been frequent since I woke up and they seem to be happening more often lately. Did you experience that as a symptom of hydrocephalus? My NS wasn’t actually sure. We figured it could be because of my csf adjusting but I’m beginning to suspect it’s something else…


#7

Ice packs seem to help well enough. Especially if I’m lying in my room with all the lights out. Hoping the doctor calls back tomorrow.


#8

Hello again. Sorry for the late response I have been away.

The shudders you have mentioned I had much later after my surgery and they happened most often when I had agitated my system in some way; I had ridden bike aggressively and on a hot day, I had taken an nutrient supplement that had ridiculously high amount of each nutrient and niacin was one and that bothers me significantly (causes vassal dilation).

I found out at the Mayo Clinic 2018 that I have a disconnect with my motor functions because my brain’s sensory system is malfunctioning-Chiari related. They can do nothing about it and I am to stay away from strenuous exercise. I am also now taking Duloxetine (generic for Cymbalta) for pain management and it gave me feeling back in the lower half of my body.
Shudders are scary, but mine were spaced out in between and I have not had one in the last year.
Good luck. In time you will find you will have to come to know your body and the symptoms it can present over and over. I will become an automatic habit.