My doctor called today to schedule my craniotomy for early August. I'm concerned that I will not be healthy enough for the surgery because I have come down with a severe case of chicken-out-itis. Has anyone else had this problem? Are there any known treatments for chicken-out-itis?
More seriously, to those that have had a craniotomy, how much does it hurt post-op? Were you on pain killers and if so, for how long? How long does it take before you can resume normal activities (I'm talking about just from the craniotomy itself, not effects of the AVM)? My doctor said that CSF leakage is a possibility. Has anyone experienced this and what was done about it?
Thanks in advance for all your support.
I had a craniotomy on my 40th birthday, in August of 2013. Other than the AVM I was in good physical condition at the time...with a fairly consistent weekly exercise routine. It took me less than a week to begin walking again (around the house) with no walker and I was back to normal work duties within one month.
As far as pain goes, it was not too bad. I was surprised when I woke up and was unable to move my limbs or sit-up on my own, but within 3 days I was getting around with a walker. I was not told to expect that in-mobility so I want to make sure you are aware just in case.
Best of luck!
I just had a craniotomy done on June 12th. I have been trying to post updates since the procedure every 4 weeks and will be posting my next one later this afternoon.
To answer your questions, the procedure does hurt post op, but your health team will do their best to bring down the pain. In my particular case I was on a variety of painkillers the first few days before they figured out that tylenol and ibuprofen did the work. in the early stages drugs such as hydrocodone can sometimes not work, this is according to the neurosurgeons extremely common. later on i switch to a hydrocodone, tylenol, and ibuprofen combo to help me sleep through the night. today 4 weeks post op in I take tylenol at night to help me sleep, but have hydrocondone at hand in case I have a surge in pain (haven't had to use it for the last 3 nights or so). I have a pretty low key job in a laboratory, so I was able to resume activities 3 weeks after surgery. I mostly sit at work and look at cells - I don't feel 100 percent recovered but to me resuming my normal activities makes me feel healthier plus it occupies my mind with other things. keep in mind that everyone is different, and other people take longer to recover, it all depends on the case. 2 of the neurosurgeons said that it would take me between 3 to 6 months to recover fully. CSF leakage is a possibility any time you access the brain or spine. If you do have CSF leakage it can manifest itself as a really runny nose follow by a huge headache when you stand up. I hope this helps. Stay positive, I remember feeling very afraid before going in to the surgery as well - it is normal they are opening up your brain.
Anytime I spoke with a loved one about the AVM and the procedure they would always reassure me that I would be fine. Sometimes that can make you feel more uncomfortable than safe. It is hard to fathom what you will go through, but that is what groups like this are great for. We been through similar things, so don't be afraid. Feel free to message me if you have any specific questions.
Hello, it is not uncommon to go through CHICKEN-OUT-ITI...... Anytime you go through a surgery we all have concerns. When it happened to me (3/2010)I was very scared, but knew that the GOOD LORD was with me. After I woke up from the 9 hour surgery, I know it was a new beginning for me. Post OP is always difficult, but they kept me on good pain killers. I was determined to get out of the hospital ASAP, so I did whatever they asked wanted me to do and got out 2 days after my surgery. They will keep you on the pain killers until you decide you don't need them anymore.
We are all praying for you, so keep a positive outlook and we expect to hear back from you SOON after your successful surgery.
I was TERRIFIED, but said nothing to anybody. In reality, it was almost a piece of cake..........almost. I woke up in the mini ICU th enext morning starving and asking for a menu. 39 staples across the top of my head and a black eye did not stop me from wanting to eat. I had no pain, only itching from the healing that started right away. I was sent home with some heavy pain killers, and only used Tylenol a couple of times. This was so much easier than the rupture which kept me in the hospital for 16 days, much of which being sedated. I was discharged from the craniotomy within 50 hours, and was restricted until the staples were out and there was no sign of infection or complications. I was released to go back to work about 6 weeks later. The scary part is knowing that they are going to cuty your skull open, and there's nothing that can be done to relieve those fears, but the process of recovery is so much easier than getting past a rupture. YOU CAN DO THIS!!!!!!!
In my case, there was no choice. The AVM burst on my cerebellum, and the craniotomy had to happen. I was unconscious when the decision was made, and I did not wake up until after it was over. The actual craniotomy was no problem for me. A big piece of bone was removed, and I am left with a scar and a depression in the skull on the back of my head. This was four years ago, now. I don't remember any pain or discomfort from the actual surgery. In retrospect, that surprises me. I believe they gave me painkillers, and I'm not sure how long I took them for. I remember running my hand up and down the bandaging on the back of head and thinking, "Did this really happen?" The after-effects of the AVM burst was another matter, but the craniotomy was no problem. The difference with your situation is that you have time to dwell on the surgery before it happens. You won't "chicken out"---Believe me, you do not want to go through an AVM bursting in your brain. If the craniotomy will keep that from happening, it is worth going through. So, is not a matter of chickening out, it is apprehension over the operation, which any human being would feel. Best wishes on your procedure, and keep us posted!
i had one. im not gonna lie. the suck. but go in with a positive attitude and it makes it better.Post ppt really didn't hurt me. it was the preparing for it. I was on pain killers for my stomach cause that's were they put your skull. It took me about 6 to 9 months.Im not sure what a csf leakage is so I don't know about that.
ok i just looked up the csf. i had brain bleeds so Im not sure about that one still. they may put a shunt in your head.
I agree with the post from the member who compared recovery for a rupture with recovery from a craniotomy. Almost 2 years later, my husband is still trying to recover from a rupture. Praise God he’s come miraculously far. He still has a long way to go. If only he’d have known so he could have had The craniotomy before having a rupture. Will pray for you.
Also my husband had the leakage, he had a shunt placed about a year ago to drain the fluid and hasn’t had any problems with it this far
I have had two craniotomies. Surprisingly there is very little pain associated with the surgery. I had 55 staples on the last surgery. They sent me home with a bottle of oxicodone that I only used for a few days. There may be other problems but pain from the surgery shouldn’t be a bother. Good luck.
Next month is my 10th anniversary since having my AVM removed from between my frontal and parietal lobes. It was just a bit bigger than a golf ball. The surgery? Recovery was a breeze. I don't know about other people but I had little to no pain from the incision and staples. Just a lot of itching. My medication of choice was Ibuprofen for the little discomfort I did have.
I decided to have the surgery because I didn't want the AVM to just kill me whenever it might rupture. That was my personal perspective and choice.
It is hard to define the aftermath of the removal from the brain because we all have our AVMs in different locations. So, that means the results will be different for each person. All I can tell you is that I had to deal with some serious limitations initially but I was back to work within 6 weeks. The limitations are not painful, just frustrating. Over the last 10 years the limitations have become less. The doctors tend to tell you that what you are able do do after a year is about the best you can ever expect. Well, I can tell you that I had continued improvement in my limitations each year for the last 10 years.
Whatever choice you make DO NOT GIVE UP! I hope you are stubborn like I am and just don't let anyone limit you in any way.
Now I was a kid when my then unknown AVM bled. I can't help with chickening out, because I had no choice. The only thing they could do back then was a craniotomy. I do not recall hurting while healing. I do remember horrible headaches when I was finished getting a barbaric test done prior to the surgery. I don't know how fast you bounce back as an adult after an AVM experience either. I do know I succeeded a lot during my life, even though I lost vision, and there was no rehab I did then. You will do well.
let us know.
I had an emergency craniotomy 21 years ago when my AVM burst and we had no idea I had it. I was 29 at the time and in really good health. I honestly don't remember much, I didn't get a chance to hold off on my surgery. I did have a pretty funky haircut for a while, but it saved my life, so I can't complain! I say if it is what the doctor recommends, and you trust the doctor, then it will probably be what is best. What are the consequences if they don't do it? Of course everyone's situation is different. I come from a medical background which has helped quite a bit, and had a great support group of friends and co-workers that helped tremendously! There was a lot of joking around and my nickname from my co-workers was "Fawn-eurism"!! Haha! That's the kind of humor that helped me when things got too serious. Surround yourself with great support, and when you are having one of those days, find that special friend to talk it through, or professional help to talk it through, either way. And of course we are all here for you! I have much experience with this, so I have had all the after surgery thoughts and concerns that come with it. Let me know if I can help!
I had a craniotomy less than a month ago. Back in January I had a bleed and the best option was the surgery to prevent not happening again.
after 9 hours operation the doctor manage to remove the AVM completely.
I didn’t feel any pain after the surgery, I was on a painkillers for a week. After 5 days I was discharged from the hospital, 7 days after the surgery I had the clips removed from the head and I am recovering now very well.
The only pain I have now is my left hand and the left side of my chest becouse Of the position of my body during the surgery.
Don’t worry think positively and everything will be fine.
I am 4 years post crainiotomy a 15 hour surgery. My scar still hurts to touch and feels good to massage it. My skull is full of drill holes, lumps, bumps, plates and screws. Does this pain when touching it, ever go away? I am so glad to hear there will still be improvement. I am having a hard time accepting this "new me." I can no longer drive, the fact that I am still here is a miracle, but another miracle would be if my hemionopia improved! A girl ccan hope and pray!
Susan, sounds very similar to my surgery! Mine was after the AVM burst, so headaches from the aneurism were bad. The sensitivity did go away for me, other than lots of bumps and a flattened area on my skull, I have no more sensitivity. It takes time, and my hemiionpsia improved to where I only have a small part in the lower left of both eyes that are still affected, but not noticeable to me. Coming from a physical therapy background, hair pulling and desensitization techniques are really good to work on, I have to do that for patients on other body parts, but it really helped me. I'm 21 years post-op, but it's been a long time since I've really felt anything consistently, once in a while here and there, but otherwise good to go!! Keep hoping!! I'm doing activities now that I never did before this happened!
Today a craniotomy is so much less invasive than it was in 1997 when I had mine. I lost consciousness following a sudden Gran Mal seizure so had no choice about surgery. I remember very little pain but I did have a lot of changes in my life. I used to speak 5 languages fluently and lost them because of my brain surgery. I had to learn to walk and talk all over again. My surgery was in the Left Temporal and Parietal lobes. It took time to accept the "new me" but am so grateful that I have gained new strengths and experiences. I just wrote a book about my life including my Bipolar and AVM.
I don't want to scare you as people today very rarely go through the extent of recovery that I did back then. I have 3 drill holes in my head but it makes me open minded...LOL
I definitely had a case of chicken-out-itis before my first embolisation. At that point I had a real choice because I had no severe symptoms at the time. I had headaches but they were not severe, but regular. I had no bleed, except possibly before I was born, no emergency, I was opting for surgery to prevent any future bleed. I was a scardey cat. I remember sitting in an office at the hospital crying. by that stage though I had weighed up that my AVM could bleed at any time (or never), I’d have no idea, might be anywhere. Here I had the best care possible, time to prepare for afterwards, family with me, a hospital full of equipment if there was a problem.
The embolisations after that were ok, not fun, but known quantities.
I had another bout of chicken-out-itis before my craniotomy because I was frightened. I just reminded myself that I was with people I trusted. It also helped that point I didn’t really have a choice because a half treated AVM was more dangerous - the plan before the whole thing started was always for 2-4 embolisations then craniotomy.
I find it hard to say what the craniotomy was actually like. I had a lot of headaches and they would only give me paracetamol (Tylenol) so they could monitor me - I think those protocols may have changed as well.) I think I was in hospital about five days. It took me a while to recover because I needed a further embolisation a few days after I got home (the reason I had the headaches during recovery). Certainly after the extra embolisation I didn’t need many painkillers.
I never had CSF leakage so not sure about that.
I’d be more worried if you didn’t have chicken-out-it’s (for those of us fortunate enough to have had a choice rather than an emergency).
I agree with the others the scar/staples were itchy. One thing I hadn’t bargained on was needing lie on my right side or flat post op, not sure what techniques they have now but I had this squishy ring to protect my right ear or back of my head from getting sore.
My recovery was pretty quick, but I did get tired, and not realise till after I’d done the activity.
My crainiotomy was in February 2015. I think the pain and recovery process depends on the person, how big the incision is, and how extensive the surgery would need to be.
I have a twelve inch scar and they put me back together with 50 staples. I know this sounds scary but I’m cured and I survived!!! I can’t tell you the tremendous amount of relief I feel at not having to worry about that AVM ever again.
It was with the battle scar and 8 weeks of recovery.
Best of luck to you. Be brave and surround yourself with people who lift you up. This is a great place to start.