Post craniotomy healing / normal recovery

I noticed I have been adding a lot of stories about my day to day happenings since surgery and thought I would just give you a list of what I am figuring as normal healing post Craniotomy surgery.

Just after surgery: I only remember 10 days post surgery because of the steroid induced psychosis. When I got home from the hospital.

Tightness in the skull: from the plates and screws holding the bone flap. It feels very tight like your skull is ridged instead of fluid feeling. (hard to explain but it almost feels like your skull and skin should have movement but does not)

Pain: The pain in manageable with the pain Meds I was down to 1/2 tablet every 4-6 hours. Helpful hint is a very soft pillow for the head. Sleep on your back with the head elevated with pillows or have blankets put either under you mattress to elevate the whole bed or under your billows to make a prop that is not easily moved.

Fatigue: You feel drained like you have been up for days fatigue. I found that every 3-4 hours I would get this fatigue and then sleep for a few hours. It is like your internal body clock is rest and every 3-4 hours is being awake for a whole day. I could fall asleep just about anywhere. You want to just lay flat. It helps with the headaches as well.

Headaches: these are similar to the low CSF type headaches laying flat really helped me relieve the pain. They would go from 0-6 on the pain scale.

Numbness: from where the skin was lifted from the skull. You can’t really feel where you are touching or scratching.

Stitches: Just like with any healing wound would will have itchiness. I found rubbing the hair that is growing a relief just did not push down to where I was touching the incision. Ask your Dr. If you should be using an ointment on you incision to keep it from drying out. I found out from the surgeon 20 days post surgery I should have been putting ointment on the incision to keep it from drying up.

Plates and screws: mild to moderate shooting type pains where the screws and plates meet the skin. They come and go quickly.

Head pin sores: After they put you to sleep for the craniotomy your head is placed in to a holder that usually has 3 pins they are like a sharp screw that holds your head still during surgery. I had one about 3 inches above my left ear, one just behind my ear and one on my right forehead just above the outside edge of the eye brow. They are basically like a small round stab wound. The area of bone and skin will have small scabs that will twinge with pain then itch and then the scab will fall off. You will be able to feel the indents in the bone until the bone fills in. No really too painful just kinda there.

Large dandruff flakes: for the first mont I had the worst dandruff. It is actually your skin rejuvenating from the trauma of having the skin peeled from the bone, and from not being able to scrub your head when showering or brushing your hair. Ask the Dr BEFORE you use any dandruff type shampoo.

Nausea: it is normal to feel queasy after they do brain surgery. They give you Meds for this. Should go away about 2 weeks post surgery.

Constipation: take your stool softeners folks. The drugs that they give you during surgery are hefty drugs and they will stop you like the hover dam. Any straining and your head feels like it will explode. Same with coughing and sneezing, just try not to cough or sneeze.

Memory / brain function: this will be different for everyone. I have what I have started calling brain farts. They are actual brain pauses. I have trouble with finding the right word when having a conversation. I will be mid sentence and will not for the life of me be able to pull the right word. Example I wanted the word fireworks I could see the actual fireworks In my thought but substituted the word bomb because i could not come up with fireworks.

1month post surgery

Pain: surgical pain should be just about be gone. Should is the key word hear. As long as you are using ointment on the incision, resting, and have no infections they incision should be on the mend.

Numbness: still there, nerves should be starting to heal. You will feel these as quick shooting type pains they come quick and leave quickly.more of a nuisance than actually something to worry about.

Headaches: they are still there just not as intense as they were last month. Laying down does make the go away.

Fatigue: you should feel like you have a little bit more energy. Just don’t over do it. Naps are still your best friend

Incision: you should be healing up great by now. I found that I was always touching it and the short hair around it. FYI if you rub the incision you will cause yourself unneeded pain. Those nerves are just firing away every time you touch it.

2nd month post craniotomy

Plates and screws: your skin should now be back to normal over the plates. You will actually be able to feel the plates and screws. Just remember that your nerves are still growing back so their might be pain when you play with them.

Memory brain function: still having the issue with finding the right words and replacing them with similar words. Also I just pause, find the right word then continue with the conversation. Example I needed skier, in my head I saw the skier going down the hill and had to go through a complete explanation to the person I was talking to saying “you know the guy going down the hill, snow, poles, things on his feet” they gave me the word and I kept going on with the conversation. Frustrating and not very entertaining.

Headaches: deep twinges inside the head. I assume that since my CT scan is clear that this is just my. Rain healing from the surgeons lifting up the brain. More nerves type thing.

Numbness: still there

Itchy scalp: when the nerves are firing off trying to heal themselves it is on the crown of the scalp. Doc said this could take a while to go away.

I am going on my 3rd full month post surgery on the 31st of the month. I have almost my full energy back. The headaches come and go. Mostly I forget I have had the surgery until about 3 pm everyday then the headaches come (these headaches might be from a small continued CSF leak that we are currently investigating. I will be updating the blog after we figure this out)

So I hope in the future that these notes can help someone else out. After a craniotomy you tend to think every little pain is a major concern (at least I do sometimes) your surgeon will give you instructions about when to call them with a concern.

Right now my post surgical instructions are if I get a really bad headache and a stiff neck is to call them and then go to the ER. So for now I am just dealing with the small stuff.

Good luck with your journey. God Bless.

About Just Jules

USCG Vet, wife, daughter, recently blimded in one eye from brain surgery, using my passion for 3Gun as my rehab.
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312 Responses to Post craniotomy healing / normal recovery

  1. Mary Lou says:

    Thanks everybody for writing parts of my story. It does feel better to know that others are going thru some of this too.

  2. Angela says:

    My son 22yrs of age was shot in the back of the head back in October he is home and doing awesome but they had to remove part of his skull and it is still missing. My son has this thing about going on rides in amusement parks does anyone have any advice on what to do?! Does or has anyone gone on any rides with a piece of his or her skull missing?!

  3. I just want to thank you for writing this, I worry about whats normal and whats not :( I havent had a full craniotomy yet, im awaiting a new skull then they will put it back in but I am experiencing a lot of what you have written about x

  4. Eileen Leach says:

    iv had two crainiotamys two weeks apart from each other right side n left side, after having a fit and learning with a brain scan i had two brain anyeursms, i would just like to say if you go into theatre strong minded and positive you will recover much easier, i read everything i could read on how its done beforehand and also read alot on my surgeon and how good he was, i was in hospital a week after the first op but only because i was scheduled to have 2nd op a week after and doctors wanted to monitor how i recovered for my 2nd op, unfortunately there was no hdu bed available for me the following week so i was allowed home for another week, i then returned for my 2nd op and was only in for three days, i recoverd both very well , its almost a year on and the only after affect is tiredness..

  5. Ana Antunes says:

    Thank you for this information. It was helpfull. From Portugal

  6. Donna says:

    Question… I’ve written here before, but it has been about 15 months or so since my craniotomy for subdural. I’ve noticed over the last month that my scar has become really different than it was. It’s like the skull parts have pulled away from each other and left a ‘valley’ of sorts between them. Has anyone else had this? I suppose it is normal, it’s just kind of disconcerting. Also, the scar is kind of created a radiating pain down into my jaw where it feels like dental pain, but if I massage under my jaw, it leads up to the scar around my ear. Just wondering if anyone had any thoughts on that. Hope you’re all doing okay out there. Donna

    • Judith says:

      Hi Donna – mine changes all the time. Sometimes up and then sometimes down. I also get pain from ear to jaw-line. I think that is because they cut all the muscles of your jaw when taking care of the aneurysm. Mine hurts off and on and I have fake teeth my neuro guy says it will get better overtime. Mine was done on February 14, 2014. Good luck with everything……..we are such a strong bunch!

      • Donna says:

        Hey Judith, thanks for the words. I just wondered if my skull plate they cut was shrinking away, it was such a growing gap. My how time has flown and what all has happened since this. Best wishes to you and to all that have written here.

    • Ana alves says:

      I have the same feeling in my a ” valley ” and the parts of the skull going out. I went to the doctor and he saids that is normal but i don’t feel very well.

      • Judith Harris says:

        Ana, thanks for sharing with us. I really do think it is normal (as normal as we are) but I also think you should get some follow-up. I suffer with acute PTSD and every time I feel bad I just know my head is bleeding or something to that effect. I take meds to help manage my PTSD and other medical side effects, but sometimes it helps to go back to your neurologist and tell him/her you just do not feel well, Each time I have done that he does a CT scan and then I am reassured that life will continue. We are all such brave souls and I hope we are so proud of who and what we have become.

      • I have that same valley and at times and in places it seems wider than usual. I also have a place that has a bump and it hurts if you press on it. Almost like a painful pimple! Of course buried in my hair, I can’t see it. I am 2 years old from my meningioma surgery Sept. 2015 and I am doing pretty good, but sometimes get an almost vacant feeling in my head – frequently have to just stop and think is that my brain or is my blood sugar dropping/rising (I’m diabetic). Just thankful it was not any more serious than it was but some days this is hard.

  7. Judy says:

    This was a life saver. I just had a middle fossel crainiotomy. I am on my ninth week out. Still tired and getting headaches. I had a cranial fluid leak on the right side of the brain. That heaven for great caregivers.

  8. Emilie says:

    This was incredibly helpful! I have one question about your recovery: how long did you have fluid? I had my craniotomy done three weeks ago and there’s still a ton of fluid and my eye is still droopy. Did yours go away quickly or did it take a long time?

    Thanks for all of your help!

  9. Subdural Guy says:

    two weeks in after my subdural craniotomy and i still have lots of fluid outise of the skull..

  10. Bianka says:

    3 weeks after craneoctomy for 5 cm manengioma…. learning about fellow sufferers. Thank you all For helping me.
    i had an amazing team and hospital but not much information for aftercate….everyone is different they say….your doing amazing they say… see you in 2 years they say… in the mean time no manual on HOW do I get back to my normal self?… how does my family heal from the trauma I caused them.
    rough road for all emotional roller-coaster

    • Bianka says:

      hope everyone is doing gr8 and battling on.
      i was lucky it seems .. The tumor that I had was about 5x5cm situated on left back of head and between the lining of the brain and the scalp. I Was hospitalized in intensive care the same day that my MRI result csme to my GP who called me to come in asap we hich I did within 30 minutes. He explained the result Whoch basically meant that my tumor was now nlocking the cranesl fluid drainage snd that that was a concern and his reccommendation was to go to hospitaland be seen by the neurosurgeon and to perhaps take a few things with me…. just in case.
      Well lo and behold… i didn’t go home that day but was admitted immediately and was told that I was a ticking time bomb.
      PRE MRI i was having few bad migranes with bouts of vomiting but it was the crooked walking and pulling as if tipsy that took me to doctor. After the fact Rielieization of many other little pointers of My condition whuch I ignored. I was operated on 5 days later.. and the worst thing was that gor those 5 days pre opp I felt like an imposter in the hospital among sick people and I was well. I lapped up and appreciated the hard work of the hospital staff and the sincronized army style running of the hospital. Once admitted I was amazed by it all and how you as a person just become like a cog in a well oiled machine. Lucky I like hospital food so feeling good meant I was in holiday mode…. all inclusive service….
      The professor told me he expects post opp capabilities to be like pre opp since I didn’t present with a trauma from the fluid build up in the head.
      It is week 3 post opp and I’m home 2 out, itchy head, numbness, I have a flu which is getting ok. I am teary and emotional easily which is unusual but that’s coming a bit better now.
      moving around ok But I do get tired.
      Found family is stressed and they are handling the brunt of the ditistion even though I believe that I’m not demanding but just seeing me not active and not in control is stressful for them….as if I ever was lying down during day time the family knew I wasn’t well which rarely happened …and now I was not moving from recliner and being on my but for days on end…..just chilled snd taking paracetamol every 4 hours …
      so far it seems I am lucky to be alive. …….for the fiture…I’m told I dont need other treatment…I pray for my recovery to continue smooth as I see things can change even when you least expect.
      It ain’t Over till its over…..

  11. ana57paula says:

    Thank you for this blog. It help me a lot.

  12. Carmel says:

    This post was so helpful to read. Before my right craniotomy to biopsy my tumor, I wasn’t told much of anything to expect. I’m two months post surgery, and your list is pretty much what I experienced as well. It’s nice to read that these things are normal cause after a while you get tired of asking the docs lame questions. Hope you are doing well! And know that you have helped people with your blog.

  13. Trying says:

    Anyone noticed their flap moving slightly under the scalp skin (although the plates are there in place – as you tilt your head in one direction or another)?
    If you experienced this, did it eventually go away? Will bone eventually regrow and close the gap between the bone flap and the rest of the skull, and stop the flap movement?

    • irishmom0563 says:

      I don’t have a flap…. but I can feel like a valley… between my surgery. I talk to the doctor and told me everything is ok. I also feel the clips? Or metal clip that they use to keep the skull in place. It feels so weird. I had my surgery Oct 15 2013. I do have a hard time with cold weather. So I just put a soft cap on. I am sorry, I do hope I helped you in some way.

      • My Dr. told me they used titanium screws in my skull and since the tumor was located in left frontal area and looking at MRI at the black hole left (filled with fluid), I sometimes rub my left forehead and then my right forehead near my hairline and I swear I can feel those screws through the skin on the left side – the right side is smooth as can be the other not so much. I also have areas in the surgical incision area that are hardly detectable and other that are deep and very groovy – my sister a surgical nurse says that is just scalp (thick) and due to staples being used instead of stitches and not to worry, but I find myself rubbing that area sometimes. One spot in particular is sometimes very sore, almost like a sore pimple is there, but through the hair, no one can see anything. It will be 2 years this Labor Day. I still have a partially calcified small tumor on back of head that they did radiation on in February of 2014 that we will watch for a period of at least 5 years through MRI to be sure it never grows. Otherwise, I’m doing pretty good. Had a strange episode last December, not a seizure, but unable to function. Didn’t lose conscience, could speak some, could understand, could remain standing, just couldn’t function, very, very scary. Neurologist though it was a precursor to a seizure so I am now on seizure meds for life as a precaution, no recurrence. Words still sometimes escape me and I find myself wanting a word, but changing it in the middle of a sentence because it won’t come out of my head. Oh well. Doing wonderful in so many way. Thank you God.

  14. irishmom0563 says:

    Oh I also could move my plate…. but I don’t do that😞 I don’t want to hurt anything in my brain.

  15. A.A says:

    Hi I am now 7 months post craniotomy for sundural heamatoma. I still get the extremely sore headaches but just occasionally. My word choice, memory and concentration still slip up and cause me problems. I sadly had my first seizure too which they did warn me about. That’s just set me right back though. Had a brain MRI which was the scariest feeling ever despite having 9 CAT scans in last few months

    • Donna says:

      A.A., I also had a subdural and craniotomy. I then had seizures and still continue on a lot of antiseizure meds. My headaches are better, but I also have problems with word choice, memory and concentration, which is very frustrating. They say it is a problem with ‘working memory’ and other things. I am about 16 months postop. The MRIs are very weird and awful, aren’t they? I have a question, do they ever say they can see damage on your MRIs? You are the closest to my situation, so I would like to hear more of your experience.

  16. I am 3 weeks out of surgery to remove a 4 and a half cm benign menengioma from the left frontal lobe. Mine was also in the mengies and not inside the brain thank god.. My insicion goes ear to ear as well.. I hope everyone has healed well. I’m lucky to be alive, I had no idea anything was wrong with me. Used to get major headaches daily, but never thought much of it. Came in from work one day went to bed that night, woke up in hospital after having several siezures I don’t remember.. 2 days later was having surgery to remove..

  17. Manju says:

    Thank you

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