A couple months ago I made a post about my upcoming craniotomy. Thankfully my AVM did not rupture prior and the surgery went smoothly on July 26th. My AVM was angiographically obliterated and I was discharged from hospital the following week. My surgery was performed by Dr. Ivan Radovanovic at Toronto Western Hospital.
I’m left with a large a large scar running from the top of my head straight down to the base of my right ear. I’ve also had frequent pulsing sensations, pressure, and headaches on the right side of my head, particularly when moving around. One of the headaches even came on one with an aura where it felt like my peripherals were getting darker.
Overall though I realize I’m lucky because I know the prognosis can be much worse than I’ve experienced.
Has anyone else experienced these symptoms post craniotomy - particularly pulsing headaches? Did they resolve for you and if so in what timeframe?
Great to hear all went as well as it did! I didn’t have a craniotomy, but did have a bleed and gamma so don’t want to compare you to me. I can say a month out from surgery is not long at all. I hate to refer to surgery as trauma, but that is a lot to recover from! I’ll leave it up to other craniotomy folks but in my best guess, you will likely see these effects subside with time. Take Care, and thanks for the update! John
Hi Matt!
Happy to hear you passed this terrible procedure successfully and almost 1 month post crani!
I had my craniotomy on July 28, just 2 days later than you I spent 3 days at the hospital and after physical and cognitive exams I was released. My first 2 weeks were awful in terms of dizziness, weakness and terrible (!!) headaches. I had dural AFV on the left side and it was also unruptured. I couldn’t sleep at night trying to find the best position for my poor head, but in vain. Painkillers helped for a while. Headaches are getting better day by day and can sleep these days, waking up in the middle of the night and then going back to sleep. My incision area is still numb, I can’t feel that part of my head. Sometimes during the day I feel like my head is placed in the iron mask and pressed tight from every side of it ((((. I’m trying to stay positive and I’m thankful to my neuro Dr.Chen (she is amazing doctor!) and the whole medical staff at Harborview Medical Center. I’m trying to do some meditation during the day, it helps me at some point, planning to do yoga or some light workouts so I can go back to normal, be the person I was before craniotomy. I do hope I will be the same again sometimes ((
Hope my experience helps you, let’s keep in touch !
Best wishes,
Jenny
While you’ve been through a lot, I’d say there’s still lots of getting better time to be had.
I “only” had a single embolisation procedure for my dural arteriovenous fistula about 6 years ago. Immediately post op, I felt a lot less well than I expected and I’d gone from no real headaches but quite significant dizziness and a pulsatile tinnitus pre op to decent headache, loud pulsing sounds and what sounds like very similar odd pressure sensations in my head. Even brushing my hair, walking or being driven in the car would give me these weird sensations. The pulsatile tinnitus went, though!
So I worried about all this stuff in much the same way as you. I think I stayed on paracetamol / Tylenol for at least a month and tapered off after that. I also had some visual aura – scintillating scotomas – that I’d never had before, though these also faded in frequency over 2-3 months.
The weirdness of the pressures in my head didn’t seem to fade but I’d say I got used to them over a 1-2 year period. I’d say today everything does feel normal to me.
I had a regular checkup at about 8-9 weeks post op and the doc couldn’t see anything amiss. His conclusion? “You’ve had your plumbing in your head redone.” Areas that were lower pressure than they should be are suddenly up to where they’ve not been for a long time (if ever) and areas that have been high pressure for a long time are back to what they’re designed for. It’s a big change.
Always talk to the doc about your concerns and if anything sudden or significant goes on, go to the ER but hopefully the sensations you’re going through are very much like mine and it’s to do with the sudden rewiring of everything back to how it’s supposed to be.
I’m 99% back to normal. I do still get infrequent headaches or mild pressure sensations. But nothing that prevents me from living a totally normal life. My neurosurgeon at Toronto Western was exceptional.
Great to hear the surgery went smoothly & you are here to share your story… I had weird sensations, eye migraines, headaches etc that lasted months, however over time anything different becomes normal & you don’t even realise it anymore… I suffered from headaches for a while after surgery, however wasn’t concerned as my neurosurgeon had instilled in me that if taking paracetamol etc helps the headaches, then don’t stress as you need to remember you’ve had one of the biggest surgeries anyone could have.
I accept we had brain surgery & that in itself is huge… we are survivors & anything that comes along with being AVM free is accepted in my books… God bless!
I spent 3 days at the hospital and after physical and cognitive exams I was released. My first 2 weeks were awful in terms of dizziness, weakness and terrible (!!) headaches. I had dural AFV on the left side and it was also unruptured. I couldn’t sleep at night trying to find the best position for my poor head, but in vain. Painkillers helped for a while. Headaches are getting better day by day and can sleep these days, waking up in the middle of the night and then going back to sleep. My incision area is still numb, I can’t feel that part of my head. Sometimes during the day I feel like my head is placed in the iron mask and pressed tight from every side of it ((((. I’m trying to stay positive and I’m thankful to my neuro Dr.Chen (she is amazing doctor!) and the whole medical staff at Harborview Medical Center. I’m trying to do some meditation during the day, it helps me at some point, planning to do yoga or some light workouts so I can go back to normal, be the person I was before craniotomy. I do hope I will be the same again sometimes ((