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Headaches 5 weeks post craniotomy


#1

Hey, I had a craniotomy on my right frontal lobe 5 weeks ago-
Ever since the op I have had a constant migraine, dizziness an extreme fatigue.
I have called the neuro nurses on the ward a few times and they keep saying that it is all normal. At a week post-op I had awful migraines with aura’s- none since!
I feel like before my operation the surgeon would call me anytime about any concerns now he’s done the operation he doesn’t seem to care.

I am exhausted from these symptoms, they have not got any better- if not a bit worse. Is this normal?

Thanks
Natalie


#2

Hi Natalie. So sorry for all of your post surgery woes.
My son is a week post op and his pain is finally manageable. His sodium was a lil low and that can cause headaches and fatigue. Are you on anti seizure meds because that can cause fatigue too and maybe headaches.
Prayers for you and I do hope it gets better soon.
Lisa


#3

Hey Natalie,
“Is this normal?” What is normal? I’m at 5yrs since my last surgery and I still have those symptoms, I admit not as a constant anymore, but still daily. 5weeks post surgery is still fairly early in your recovery. Your body is still making adjustments to its new reality and although the theory is ‘6-8weeks and the body has healed’ when it comes to the brain 6-8weeks is only the start of your recovery.

I was seeing a pcp and his view was “They operated, they fixed…” But this is far from fixed. I am now seeing a different pcp, one who comprehends this reality.
The surgeon’s view is that I’m over reacting ‘cos it can’t be THAT bad’ but, man this is just so exhausting. I even had one neuro tell me I just simply had a low tolerance to pain. No, I have a low tolerance to idiot dr’s who think they know it all. They don’t. Only those of us who have been here, been living this reality will ever know the true extent. I often explain it like this. When you hurt your arm, it’s your arm that affected. But when it’s your brain it affects EVERYTHING. Others don’t seem to comprehend this at all.

Because everything is affected we now have to adjust everything. Our ‘normal’ is no longer. Our ‘normal’ tolerances are no longer. I have learnt my body’s new signals but it has taken years. My initial thought was I needed to push through my pain to build stamina, to build new tolerances. But although I could push past my limits I paid dearly for that the following day. Now I have to listen to my body because it does tell me “Laydown or I’ll put you down” and if I don’t listen or ignore those signals it does put me down and sometimes this can mean days in bed in a darkened, silent room. Any stimuli and my head is banging to the point it feels like my eyeballs are going to explode from my skull.

Is this normal? I have lost all reference to what is ‘normal’. I now have to manage the reality of today. I can’t plan for tomorrow with any surety, I can make plans but I never know what tomorrow will bring. If I can function, well, that’s a bonus but I can never be sure.

I’m sorry, this probably isn’t what you want to hear, (nor do I), but this is my reality. Now in saying all of this I’ve had a few neurosurgeries (6 so far) and each one has knocked me a bit more, with the last operation knocking me out of commission permanently. After some time you may recover a bit more, but no one can say how much nor how far that recovery will go, imo least of all the medical fraternity.

Natalie, I do wish you the best of luck in your recovery and do hope that things do get better, but just know that if they don’t you are not the only one in this awful position. Some of the medicos make out we are in this position by choice, but who the hell would want to choose this? Not me that’s for damn sure.

Merl from the Moderator Support Team


#4

Yes, very normal, 5 weeks is a short time, your still healing, you’ve been through a lot and it is a stress and shock to the body, (head). Just try to take it easy, don’t stress, give yourself time to heal, your nuero has probably moved on to other surgery’s so try not to take it personally, if you have questions or concerns don’t hesitate to contact him but at this point your probably gonna get assistants relaying info for him, if your really concerned schedule a follow appt, but this all sounds normal at this point, its going to take some time, take care,


#5

Natalie,

I’m sure a craniotomy is a massive assault on your brain, so I’m sure it needs lots of time. I had an embolization in April last year and I’d say definitely it took 6 months of getting better. I then had some apparent degradation and again recently I feel better. So I am sure a craniotomy takes a lot longer than you’ve had to feel good again.

I am busy reading Lisa’s story about her son and your story and Merl and others and getting the bigger picture that a craniotomy is not that straightforward a fix. That Lisa’s son is on keppra, for example, and some people stay on keppra forever indicates to me that craniotomy is a big deal.

Be positive, be determined. You will get better than now and I hope you’ll get back to a good normal. I’m sure positivity has a great role to play, too.

Very best wishes,

Richard


#6

Hey all,

Thank you for your replies. I am realising too how bigger deal a craniotomy is- my neurosurgeon made it sound like it’s not much, although saying that some people I speak to are a few weeks post op an feel amazing!

I am not on any anti-seizure meds, I am the only person that I know of that’s not… I get funny smells which they believe could be epilesy but they haven’t mentioned any medications, maybe because I’ve never had a seizure…

I hope this isn’t my new new normal- I want my life back!!! I am seeing a fatigue specialist soon, I doubt they can help but my doctor has referred me to one

Lisa, I am so glad to hear that your son has had his op and it was successful :smiley:

Thanks all
Natalie


#7

Hey Natalie,
I did the same thing as it sounds you have. I compared my situation to others. ‘Some feel great 2 weeks post op. Why aren’t I???’ There are just too many variables is the answer. That thing inside your skull, your brain, controls EVERYTHING. Damage, either by a bleed or by surgery, a few millimetres left or right can have life altering consequences. That is anything from paralysis to a mild headache. ANY intracranial surgery MUST have an effect, its just how big that effect is that is the question that no one can answer. No 2 brains are wired exactly the same way. 2 people can have exactly the same injury/surgery but have vastly differing results.
I too want/wanted my old life back and it has been absolutely soul destroying to realize, then accept that my life as I once knew it is no longer. I had studied, got myself a qualification and worked for years in my chosen field, building up networks of people to achieve a desired outcome. That has all gone and that has been a torment for me to accept, but the reality is I don’t have a choice.

Merl from the Moderator Support Team


#8

I’m sure it is just going to take time. Look after yourself and be patient.