Post Crainiotomy Pressure Headaches

I am 8 months post crainiotomy today for a rupture in my right temporal lobe. I was given an all clear diagnosis and have been back to working out, working 40+ hours per week and all my normal activities. However, as of late, I have been experiencing major pressure inside my head. I guess it could be classified as a pressure headache? It comes and goes and at times, I also feel really exhausted and like my arms and legs are heavy and could melt into the floor. Has anyone else experienced these same feelings post crainiotomy? I guess it just feels strange because I was making such significant strides, and now I’m having these dizzy, weak spells with head pressure off and on. I guess hearing others testimonials would provide some peace of mind…

1 Like

I had similar problems after my first surgery. I had my AVM rupture in between the left temporal lobe and left parietal lobe. My first surgery was to stop the bleeding. They then had to wait for the swelling in my brain to go down before my other surgery was done to remove the clot. Like you could feel a heartbeat inside my brain. It only kicked in during physical therapy. Some times I would feel exhausted and light headed for just a couple minute then after taking a break the headache would go away and felt perfectly normal. Hope things get better for you.

1 Like

Hello Danielle, yes I deal with same issues on a daily basis, good days/ bad days but over the years it has gotten progressively worse, We are all different so don’t be discourage, just se feed back to reassure you that you are not a lone, we are all here for each other so I wish you all the best in your AVM journey, be strong and stay positive, follow your heart, I will never fail you!!

2 Likes

I had AVM bleed and craniotomy almost 60 years ago. I was 8. I still have strange things happen or that I feel. I still take seizure meds for partial occipital seizures. I have dizziness at times, which they call vertigo when you get old. I get strange pains in odd places on my head.I have no dementia, but I have gotten myself lost in my neighborhood walking. I have a guide dog because I lost the left vision in both eyes from the AVM. I imagine you can have any number of strange feelings or symptoms afterwards, especially if it was a short time since any treatment. I heard the bruit or blood rushing in my brain before the obliteration. Not after. I used to get awful headaches after. Before and after I had/have times when it feels like the world is racing past me, while I am not moving. But because I was a kid, I never really worried about it then. I thought everyone saw the same as I did. NOT. If you are concerned, go see the neuro. They are there to help you not worry.

Hi Danielle, my AVM was asymptomatic. Was discovered after a head-on collision. You can read the details in my profile if you’re bored.

The AVM was in the posterior medial right parietal lobe. Surgery was successful. But it took nearly seventeen months to be completely recovered. I had headaches for a few years after. And I still get them occasionally.

They’re typically stress related and I do feel pressure as you do. But occasional back and neck adjustments by my Chiropactor help trememdously.

This along with proper diet, exercise, and overall healthy living help a GREAT deal.

Finally, going by your photo you look very young. This is an enormous advantage.

Be patient. Your brain was invaded. Give it some time to heal.

Reach out. We’re all here to help.

Bill

Thank you all so much for your responses. It’s comforting to have a community to turn to when you need some help along the way :slight_smile:

Hi Danielle,
I had my crainiotomy January 2012. I don’t consider mine headaches just pressure moreso when it rains or it’s very humid outside. There is no pain involved. Not sure if anyone else experiences this type of issue. I was lucky my aneurysm did not rupture. What few side effects I have post surgery I call them speedbumps… I hope uou find answers and that everything is better for you soon. :slight_smile:

2 Likes

Danielle,

I had an embolisation in April and I’m getting some unusual effects, including what feels like a pressurised head. As you say, not all the time, but definitely feels pressured. I’m going to see the neuro in early March and will ask about it then.

I kinda think I’ve got more than my one AVM going on. That having blocked off one area, something else has sprung up. On the other hand, the doc has effectively re-plumbed my brain, with higher pressure where I had low pressure before and low pressure where I had too high pressure before, so I don’t know what it is. I’m going to ask. I’ll try to remember to share what I find out.

Good luck with yours!

Richard

1 Like

I had my crainiotomy about 28 years ago. There were a lot of headaches and feeling the heartbeat before and after the surgery. There was gamma knife surgery about 6 months later to clean up the loose ends. I don’t have a good memory, but I thought the doctors said those were impossible, especially feeling the heartbeat. So, it actually makes me feel better to realize I’m not the only one and it was a real symptom. Both of those have virtually disappeared over the last ten years. Similar to Bill4, I found proper diet helped reduce these problems, so it might not have been just AVM for me.

Good luck, hang in there.

1 Like

Hi Danielle!
I have to say reading this was almost like I wrote it myself. I had my AVM in my left temporal lobe bleed and then got a crainiotomy just over 3 years ago. I still have constant pressure, sometimes so exhausting especially after I have worked all day. I feel like if there is too much going on or too many people talking my brain gets exhausted and shuts down. I won’t say that my pressure headaches have gotten worse though, definitely better than post surgery, I am just not sure that the pressure will ever be completely relieved. Weather is a huge cause as well as experiencing too much light and noise. Just wanted you to know you’re not alone and I’m sure you will find some relief, it seems like it slowly gets better. God bless.

3 Likes