I had my craniotomy on Thursday. It was a rough surgery. After the initial cut they did an angiogram and a new fistula showed. I lost a lot of blood. It was a rough night I threw up a lot and not I keep hearing a clicking sound in my head. But I’m feeling better today.
Great to see your update and have you stop by so soon. That is awesome, and really good news! The secret will be to take it easy and have patience, which is difficult for most of us. I had gamma knife so completely different but struggled post bleed to realize the need to slow down. Listen to my body and in that case my brain. It clearly told me when to slow down and rest. Take Care, John
I too have had a craniotomy and I MUST agree with JD 100%.
“The secret will be to take it easy and have patience” and if you are anything like me, that ain’t easy to do. I wanted it right and I wanted it right bloody now and I pushed myself to try and achieve it. BIG MISTAKE. Do not be pushing your recovery. Recovery can be a slowly, slowly process for some. I pushed too hard, too soon, doing myself an even greater injury. So…ahhh…my advice…Don’t be doing that.
For some people recovery can be a breeze. My first neurosurgery was a breeze, well, maybe not a breeze, but a lot easier than any of the others. I thought the 2nd operation would go much like the first only it didn’t. I became frustrated with myself because I wasn’t meeting my own recovery goals, so I pushed harder, doing myself a major injury.
So, PLEASE listen to the advice given by JD “Listen to your body” it will tell you when enough is enough, but only if you read the signs.
Merl from the Moderator Support Team
So glad the surgery is behind you. I agree with the other posts, do what you can but rest when needed. I slept a lot at first, and that’s totally normal. Your brain needs time to heal.
I was overwhelmed by my inability to do the things I used to do and felt like my world had come to an end. It did get much better, but it’s slow. Patience is the name of the game for sure.
Hang in there
It’s very good to hear from you, though it seems very soon after your operation, especially if it was a bit of a mare! Hopefully, the really hard part is done and all you need to do for a while is catch up with yourself and get better. I haven’t had a craniotomy but I always look upon it as a major assault to your head and it really does need care to take the time to get better.
Really good to hear from you!
Very best wishes for a full recovery: do stay in touch.
Patience is the key or your brain will remind you to slow down on its terms. stay strong and take it step by step.
There’s a post on this site called a letter from your brain that I always found helpful.
I’m having a hard emotional time today. My vision is so messed up and I know they didn’t get it all. Check up in 6 months. I’m tired and weak and on so many drugs. kepra, steroids, no heavy pain meds thank goodness. I’m not used to taking any meds. I just feel
Like my whole life is over as I knew it. I know things will even out and I will feel better soon but today… today is not that day.
This thing is an exercise in patience like you wouldn’t believe. I just think it is good that you recognise that you’re in a difficult place but it will come out better soon.
I have to say that I came round from my embolisation, convinced that I was not fixed because I could hear a massive pulse and my head obviously felt like minced beef but actually, patience and time were my healers (I wasn’t actually patient, by the way ). So I hope you are worrying more than you need, too.
Just hang in there!
Very best wishes,
Patience…it took me months to get used to Keppra…still got tired and a little foggy 30 minutes after I take it; you will get there…slowly…
Patience is a virtue I lack. Lol I hope it is over. The doctor said there is another vein that was filling but she hoped it would go away. Is he said it was all more extensive than they expected.
Well, fingers crossed!
This is great that it is now hopefully behind you for good and the journey to recovery begins… I have been there and it is a long road and journey, but well worth it after all the years… keep us updated and rest and get better… God bless!
I had so many days where I felt like my life was over. It takes a long time and it’s slow but I am doing better now than I ever could have imagined right after the surgery (or even a year ago). A friend sent me a card that I still have up in my house “small steps every day”
Small steps. I like that.
I hope you are doing a little better today and that you are safely at home recovering.
I had steroids for about a week after craniotomy, but never got put on Kepra. My surgery was 13 months ago.
I know you are disappointed that it’s not completely over, but you are on a journey and you have made extensive progress in that journey. You are several steps ahead of where you used to be. Give yourself some time to grieve over the disappointment though. Some days it’s ok not to be ok. We are only human, and we are on a road we never imagined we would be on.
I am feeling better. Stronger but still weak. I think if my vision was good I would feel 100 times better. It is dim and blurry and I’m having headaches, a few visual twirly lights. But so far I’m just sticking with Tylenol. I have been off and on depressed but I do feel lucky to have my mom here taking such good care of me.
When you pushed yourself how did you injure yourself more if you don’t mind me asking.
“…how did you injure yourself…”
I pushed myself beyond my body’s ‘new’ limits. I told myself I was building stamina by pushing. Initially the signs were subtle, visual disturbances, odd sweats, slight jaw pain and these signs increased. It wasn’t painful… …initially, so I kept pushing. Then I got some neck pain and decided to slow down for the day. But the pains kept increasing, the jaw pain and neck pain became chronic. I laid down in a darkened room, which can often help, but in this case it didn’t. Then came the nausea and I started vomiting. This forced more blood to me head, it was like my skull was going to explode. The pressure was HUGE.
My wife called an ambulance and I was shot off to hospital, after a scan they came back with ‘We need to operate again’. My wife came out with “You over did it AGAIN. I told you so…” (Don’t you just love it when they are right? NOT ) but, damn it, I have to agree.
My body was giving me signs, I just didn’t listen. She who must be obeyed (my wife) was giving me signs but again I didn’t listen. I call this "My arrogant male’ side, “I’m stronger than that, I can push through…” “I use to be able to do this, so I still can…” only I couldn’t.
PLEASE, PLEASE, do not follow my example. LISTEN TO YOUR BODY’S SIGNS. Those signs may be subtle, but subtle warnings can only progress in one direction and if you don’t listen the consequences can be life changing.
Now, these were my signs and not everybody is going to have the same signals. But if something seems ‘Off’ ask yourself why and if it progresses in any way…STOP!!
Merl from the Moderator Support Team
Yes that ego can be troublesome; I didn’t listen to my wife or the signs and pushed myself too far and ended up with visual hallucinations and then a seizure… needless to say that in the ambulance I got that stare from my wife that basically says you do this again to yourself and not listen to your body or me I will finish you myself…
yea, that’s the look somewhere between pleased you’re still here but unimpressed with the result, on a sliding scale.
And when we over do it, don’t they just love to remind us… …ie ‘Remember the last time you did THAT…’ TSK. I mean, in all honesty, she’s probably right but it’s the last thing I want to hear. Those looks or stares have a communication all of their own don’t they Not a word is spoken, but volumes are heard
Merl from the Moderator Support Team