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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392 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?!

    • Anonymous says:

      I would suggest he does not go on rides for a while if at all and I would defer to the advice of his neurosurgeon if he had a craniotomy. It is difficult to compare craniotomies as each are unique: 1. They may be for entirely different issues (for example your son’s was traumatic and most likely done to control pressure), other people have tumors and others have aneurysms, the list can continue. 2. You should ask your neurosurgeon! I personally always err on the side of caution. The protective layers that surround the brain help keep it from being jarred especially if he is has had issues (ex: a CSF leak). I hope this was helpful. I am not a physician nor does my advice substitute your physicians as I do not know your son’s case. I have 11 years as a critical care nurse (BSN, CCRN, CNRN).

  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..

    • Tish says:

      Congratulations on your recovery. I had a crainiotomy to clip a 13mm aneursym just under 3 months ago, had the greatest neurosurgeon & team in Australia. No question was to dum for them, the way they explained the process was amazing. A lot of these comments are helpful and does help when you experience new pains, feelings etc. I have another small aneursym on the right side and they will be monitoring this for years to come. It is scary but you have to have a positive frame of mind and you have to move on with life. I agree with you with the tiredness, I was back at work part time after 7 weeks and am now back full time in a stressful job (one would ask why, but I do enjoy it). I also take care of my 91 year old father who lives with us so I don’t really have much time to be negative about what happened. Just very lucky it was found and dealt with so we can enjoy the next stage of our lives.

      • Judith says:

        Thanks Tish, I too am back at work full time. However, I went for a check up after a 3 day trip to China and my neurologist did a CTA and found that I have nodules (many) on my thyroid. I have to have a needle biopsy next week and I am really afraid that now I have cancer as well as being post aneurysm. When does this all end???? I am trying to be strong but this is a real setback. has anyone out there had this added problem??

      • Nina says:

        Hi,
        I’m sorry for your new health concern. However, I’m writing to you because I certainly can relate. I am 1 year and 8 months post craniotomy for 5 aneurysms clipped, and I was just diagnosed with breast cancer. Being a born again believer helps me tremendously with what I am facing. My human self couldn’t help but struggle with this new challenge coming my way. I suffer from insomnia (total) since my craniotomy, and have sensitivy to light and sound, and don’t handle stress as well as before my aneurysm surgery. The first year of recovery from the brain aneurysm surgery was difficult emotionally, mentally, and physically because of the insomnia. I believe that all this added stress has helped contribute to the cancer. I have started on an alternative cancer treatment that has proven successful for many, and we’ll see how this goes. As for you, I hope you do not have cancer. Wishing you friends to be there to encourage you, and faith in God’s Word to give you hope and peace during this time of uncertainty and fear. Sincerely,

      • Tish says:

        Oh dear I am so sorry to hear about the latest news. One can only hope it is all benign and the result will be favourable. My husband had thyroid cancer 6 years ago which they successfully removed the thyroid completely. All is well and he doesn’t have any problems at all. Wishing you all the best, stay strong.

      • Judith says:

        Thank you Nina and Tish I really needed those kind words. I will keep you updated! we really are a strong bunch….thanks for sharing your strength with me.

      • Tish says:

        Judith, how did you go with your thyroid ?

      • Judith says:

        Hi Tish – thank you so much for thinking about me. It was horrible/painful and I never want
        to go through it again. I won’t get my results untill the weekend. I have no idea why they went to my lower neck as well as my thyroid. I will keep you posted. I do hope you are doing wel,l and are happy.
        Judith

    • michelle towers says:

      That’s fabulous. Just had my right temperal anyeursm clipped on dec 7th and home on the 9th. My question is how much longer do I have to sleep elevated? Its so uncomfortable, I hate it.

    • Anonymous says:

      Thanks, this was very helpful.

  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 skull..like 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.

      • deleted says:

        It is normal the portion of your skull is healing. Unfortunately our skull may never feel smooth again. Mine is sunk in and I don’t touch it because it is sensitive. The reason why it is uneven is as follows: In order to take off the skull a burr hole is drilled then the “window” of skull is drilled circumferentially. After the procedure is complete whether it is a resection (AVM- in my case) the dura is sealed, the bone is placed back with small flat flower looking metal waffers (plates) and screwed into the skull and the skin is closed. During the immediate postoperative period there is a lot of swelling and the bone regrowth is beginning. The skull grows amazingly quick however some sources state for complete recovery one should estimate approximately one year. I am not a physician nor does my advice substitute your physicians. I have 11 years as a critical care nurse (BSN, CCRN, CNRN) and I have always enjoyed educating my patient’s families. I hope this was helpful and I wish you all the best. Hopefully one day soon I can return to the caregiving side of neuroscience again as I have so much more insight having been a patient.

  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!

    • Trying says:

      my fluid was almost suddenly gone at around the 4 week mark

    • Nicole Brathwaite says:

      I’m guessing that everyone’s recovery is different. I was swollen for 2 days but I applied an ice pack to my eyes and face, and kept my head elevated above my heart as much as I could. It’s now 15 days post surgery and I have almost no pain. Energy still low so I rest as much as I can especially since sleeping at night is so uncomfortable. But so far I’m doing better than expected. Well I have my faith in my creator to thank for that.I believe that the one who created this human body will complete whatever he started. Happy I found this page. Good to know I’m not the only one going through this valley.

  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 weeks..staples 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…..

      • Lyn says:

        Hi your story is similar to mine. Had my op to remove the tumor off the right side. Was home 5 days post op but in horrible pain. I had the stitches removed 6 days later. I am weepy , moody and sore. I have been so worried something is wrong with me till i found this site. I go back again to see my doc in 2 weeks. Im terrified of going to work incase i damage something. I am in Zimbabwe , Africa.

    • Shelley says:

      I had my surgery on left side for aneurysm clipped. I found these story’s to be helpful but I don’t see any comments on long term status. I had mine almost six years ago. Last night I had a headache. This am my spot that has a deep dip and lump felt very weird. The lump feels a bit larger than normal. This whole brain surgery thing has always been a bit scary and I have always been aware of (stuff) going on there. Just wondering if anyone out there has had the same issue.

      • Judith says:

        Sorry Shelley, please go to the doc and have it checked out. I am 18mths out and I am still terrified. I hope it is nothing but please let us know how it goes. Judith

  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.

    • felicia says:

      I am glad to hear you are doing okay. I agree the blog helps to hear you are not alone. I am 4 months post op and still struggling some.

  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.

    • Anonymous says:

      How are you doing now? I had a Subdural Hematoma in February of 2016. I am doing pretty good. Some days I am just very tired. I have to sitdown and take breaks throughout the day. I’M Used to working out 6 days a week and lifting waits. I had to do a serious cut back. This is different for me.

  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

  18. Nancy Gibson says:

    Thanks so much for the info.. so much of what you described. ..I have…yesterday, was my 5th week since surgery. .omg, can’t believe how my brain-fog is just like yours…this article helped me SO MUCH!! Can’t thank you enough!!!

  19. Mary Palmer says:

    Hi I had a subdural Hematoma due a fall, I tripped and hit my right frontal lobe…. I am now at about 7 months since my craniotomy… I have not gone back to work yet. I’m still experiencing a lot of fatigue, shooting pains is the best i describe and headaches throughout the day, as well as a dull pain where the incision is at. I still have to take naps through out the day if i over do it or… I also have trouble sleeping at night i typically fall asleep from exhaustion, the oxycodone helps for about an hour . I had a stroke during the surgery that affected my left side and some patches of brain damage… I also have trouble with memory and remembering words or how to pronounce it correctly… Has anyone gone back to work yet… It is very frustrating because people look at me and think I am just fine.. I am on depression medications but doesn’t really seem to help… There are people like my mother-n-law even my nuerologists assistant think i should bein doing better by now they look at me as if I;m fakeing my symptons to not back to work even my aunt as welll… sometimes I think my husband the same… my Dr mother, sister are very supportive.. so is my husband as he wants to be with me for every appt… I just feel really alone sometimes and frustrated.. another very stressful factor for me recently is that my long term disability benefits were cut off completely because the assistant took the word can return to “sedentary work”… my dr discussed much later in the future when i still had a joband that was to start out part time.. I was laid off so that is not even an option based on the way it was filled out the benefits letter said i was released whivh is not the case so this has just caused more stress in my life… Am I being a baby about my symptons should i go back to work… it is difficukt for me not to take naps.. I’m tired all the time

    • Mary Palmer says:

      I also get very nautious from just being online and scrolling through pages as well as the glare from the screen… i just feel like a mess still..It is 4:30 am for me right now and still can’t get sleep

    • Anonymous says:

      I hit my head and had an acute on chronic subdural hematoma in Feb 2014. I am 19 months out and some of what you describe is just like me. People would think I am normal and don’t see the problems, except those close to me. Of course, most people I run into now don’t know I spent months in physical and cognitive therapy after the SDH and a coma.. According to a neuropsych test, I have about the same intelligence as I had before, but I have trouble with working memory and I forget (haha) the other 2 things they said. In short, I can’t remember things short-term and that is really a problem. I also can’t find the right words and exchange the wrong words in sentences or exchange syllables, and most of the time I don’t even know it until someone says something or I hear myself and realize after the fact. I have the shooting head pains which you can’t really describe as head”aches”, but I, too, often don’t feel that people really understand what I’m dealing with. Fortunately, I do have a very supportive and understanding husband. I have epilepsy and simple partial seizures that generalized after the surgery, and I was going to a general neurologist here in the state we moved to a few months after the whole thing. But I started going to an epileptologist at the University of Nebraska, and they take everything seriously and have told me much more than the general neurologist. I do tend to have breakthrough seizures when watching TV or computer for longer periods, and I’ve had to be tried on numerous anti-seizure drugs. The craniotomy symptoms lasted for quite a while. I do think I am somewhat better than a few months ago. I have not gone back to work and have applied for disability, but it remains to be seen. The neuropsych test showed that I could not return to the previous work I did for 28 years. I have so much fatigue with the antiseizure meds and the brain surgery, I’m not sure what I could do, and much less could not drive there. I will have to wait and see what they say. My best wishes to you and hope that you recover and figure out what to do. I guess you should get some help on an appeal, if you need to.

      • Mary Palmer says:

        Thank you so much for replying to me i have a Dr’s appt next week and he is ready to correct the last letter so hopefully the Long term disability goes through since social security disability is such a process… I too am not so sure what i could possibly go back to as well… my stroke during surgery left my some parallelization on my left side.. I cannot sleep comfortably on that side because i have a lot of pain, but then i cant sleep on the side of my incision it is very painful which also has to do with the lack of quality sleep i get or i wake up due to the pains in my head… do you have sensitivity with sleeping on the side where the made the incision? I have been scheduled for a psych eval as well which is kind of scary… so that is another long process I’m sure… fortunately i have not experienced any seizures…. I pray that they find the right drug for your seizures… I had to take some as well for about a month after the surgery.. thank you .. I pray that you recover as well… Thanks againπŸ™‚

    • Susan says:

      I can very well understand your situation. Its never easy I had been there too and still after my 3rd craniotomy. 2 years of my life had stopped I had complications first was infected then they removed my bone flap then 3 months ago they had it back and along the way I had my gall bladder removed, my liver had a mass because of the medication and I have adhesive capsulitis now both arms that I have limited movements. Sometimes with many complications I forgot to tell my neuro and gp. I am very positive when I go through my surgeries but there are times specially now that I feel disturbed and sad.

  20. Pat Michalski says:

    I am almost 6 months after surgery for an orange sized meninngioma. on the right side of my brain. I still get tired and wonder how long it takes to recover from such a large surgery. I also still have swelling around the ear where the staples were. Is this normal.

    • Allow yourself one year (yes one year) to feel yourself. Take that nap for an hour or so in the afternoon if your tired! And yes you will have some swelling and some changes around the staple area for some time also. But be thankful, they got it and you are home and o.k. Hope you had some Physical Therapy. I didn’t think I needed it, but I did!πŸ™‚. Just take your time, don’t be impatient. We are all different but that’s a big surgery. Rest when you’re tired.

  21. joebike2013 says:

    It has been nearly 2 1/2 years since my accident and about 2 years since I posted on this wonderful site. Had a craniotomy to relieve pressure and bleeding resulting from a nasty bicycle crash. Had 2 follow up skull openings to address an aggressive MRSA infection. As a result I have a nifty prosthetic plate that yes, sets off security at the airport!

    I have been extremely blessed and fortunate. First, I had great doctors, nurses and medical care. Second, I had great family supporting me. My wife carefully cleaning and treating my surgical wound that, thanks to the infection, refused to heal for months on end. My dad moving in with us to help take care of me so my wife could return to work and my daughter for always being there.

    I feel wonderful and though the injuries (fractured skull, broken neck, broken ribs – 5, broken clavicle and punctured lung) were significant, I healed up and am back to “normal”!

    I still am missing about 2 weeks of memory – from the crash forward even though I never lost consciousness. That won’t come back!

    Riding my bike again and will have logged about 7000 miles this year. Never thought I would say that again!

    This site helped me through some of the tough times and I thought you all might like to see some progress!

    Stay with it!

    • felicia says:

      Yeah I have 2 weeks of murky memories I call them murky hallucination

    • Karen says:

      Glad to hear you are doing so well. I have about three weeks of memory gap – I too had bleeding on the brain due to an accident that caused a broken pelvis. It is five months since my surgery, and in most ways, I am back to normal. I have a lot of skull numbness still and a couple of sore bumps now and then. Otherwise, I am all here except for fatigue now and then. I just had my second follow up CT today – waiting to hear from the neurologist about it.

  22. Donna says:

    I’m now I week post op on my 4th prosthetic, a result of an orange size meningioma 24yrs ago. I’ve had infections galore one being bacterial meningitis which has led to my now epilepsy. Needless to say this has been a nightmare but I’m always hopeful I am going to wake up from it. Question last night I started hearing a clicking in my head and I’m assuming this is the prosthetic settling and then this morning when getting up I felt and heard a sqeaky noise I’m thinking fluid. Anyone ever have this dieting the healing process? I go for follow up on in 2 days? I don’t want my new surgeons thinking I’m a lunatic 😦

    • Patti says:

      I have never heard of that myself and did not have any kind of prosthetic – but the symptoms are real because you have them. If the new surgeon thinks you are a lunatic you need a new surgeon. A doctor should always take your symptoms seriously and take the time to listen to what is happening to you. Who knows, other may have the same things and he may have an explanation for you.
      Good Luck Patti

    • Anonymous says:

      No the clicking in your head is the Decadron steroid they gave you and funny taste of food is the anesthesia.

  23. Felicia says:

    I had 2 craniotomy for tumor in cerebellar, pons and brain stem, in July 2015. Still off work and still healing. Surgical site close tired alot, walk funny, now diagnosis with ms. Didn’t think much as about craniotomy until recently when I am ready to return to work but can’t due to dizziness and inability to write and drive. Thought I would be better by now. But if someone goes digging in your brain, you never know what’s left afterwards. I guess as someone said earlier should be thankful just to be alive.

  24. Susan says:

    I had a craniotomy 3 months ago. A big chunk of my frontal flap had been removed after infection from first meningioma tumor. I am experiencing a headache still and a sharp pan on my head and cannot concentrate. Added to this is I had both arms frozen due to to previous surgeries. Its not easy as I cant do much now and I cant find good sleep at night. But I am so lucky to be alive enjoying my family.

    • Donna says:

      So sorry to hear of your surgery and all your symptoms with your arms. I’ve had problems with both arms and one of them froze. You are still early after your craniotomy. I am now getting close to 2 years out from a subdural hematoma and large craniotomy with evacuation. I found through my experience that I have probably had a form of epilepsy for many years, though they generalized after the surgery and I am being maintained on a regimen now after many trials of different combinations. I remember the headaches and sharp pains and so many symptoms after the craniotomy. My general neurologist put me on Cymbalta and told me it would cover SO MANY symptoms that I was having. It did help me with the head aches and sharp pains, wanting to pull my hair out but my hair itself hurting, crying and other problems. I still take it and hope not to have to change to something else. I wish you well and that time heals some of those symptoms. You’ve been through a lot!!! Try to keep your chin up! πŸ™‚

      • Susan says:

        Its always good to know that someone can do well relate. Yes been a tough journey for me 2 years of 3 major head surgeries not to think of removing my gallbladder along the way and side effect of the medications that at some point have to have my liver got affected – but that part is normalized now as its being monitored. I am having a high spirit all the way but there are times makes me down and now I much as I don’t want to take med my gp gave me valdoxan. Just few days ago I am experiencing sharp pain on top of my head and I feel so tired and nauseated but last night s I was touching the healed wound I noticed that there is a big gap now makes me really worried. I will see my doctor tomorrow ( kind of I do most of my learning online). I look healthy on the outside but have many issues I tried to enjoy each day that comes. I know I may never ne 100% the same and I try to accept that. A lovely sunday to you and all.

      • Anonymous says:

        You are still so early, and you have had multiple surgeries, bless your heart. It will take some time to feel better. You seem to have a normal attitude and healthy anxiety. Take heart and make sure you report the nausea. I hope they can help that. The gap in your skull sounds like mine… a huge gap in the scar of the craniotomy. It worried me a lot, but I think I’m stuck with it and it is normal.

  25. Heather says:

    Thank you so much for the month to updates about how you were doing after surgery. Very helpful. I thought I was the only one who was loss for words. I’m going on my 2nd month. I don’t feel so crazy now. What is a CSF leak?

  26. Sue says:

    I don’t know where you live, but do you have any trouble with cold weather.

  27. Jane Clarke says:

    I had a carotid aneurysm , left side, clipped just over three years ago. This site has shown me I am not alone in having a scar like a lumpy valley and sensitivity in my head in cold weather . Now if I cough I get a dull pain over the scar. Does anyone know if that is normal? I have another small aneurysm on the other side which is monitored but often wonder if you can get another in same place as last operation especially as scans don’t show anything as the metal just reflects shadow. We all try not to worry but it’s hard not to. Best wishes to everyone.

    • Cristie says:

      Hi Jane,

      I had a craniotomy to remove epilepsy I had for 20 years. Feeling any kind of pain over the scar such as coughing, yawning really wide-mouthed, sneezing, and just opening your mouth wide is normal even that long after the operation. Or so say my neurologist and neurosurgeon. No need to worry, everyone with the same/similar operation is most likely going through the same thing. Blessings!

  28. James says:

    Hi Judith, I hope that you have overcome the brain pauses issues on finding right words. How is it now? Please share me the experience to deal with that and return as normal if possible. Thank you!

    James

    • Judy says:

      I had CSF surgery March 14 and I’m still having a few of the pauses, especially under pressure. I just need to take my time and it comes to me. They stopped being so bad about 3 months after. At times I still have problems remembering what I walked into the room to do, I quit getting upset, I just start all over and it comes to me. Patience is a virtue with the brain.

    • Judith says:

      Hi James, I am not sure if you are asking Judy or Judith but I will respond anyway. I still have brain pauses and have learned how to use them to my advantage. I am a professor and also speak at many conferences. I can’t tell you how many times people have come up to me and said…”wow! Your pauses are so powerful”…ha ha ha if they only knew. So, use them if it happens, don’t fight them act is if they were meant to be. The only time I make a comment is to my colleagues – if it happens during our conversations I just say blah, blah, blah we laugh and move on. It will get better I promise you.
      Judith

  29. Hello-I had a Craniotomy on December 7, 2015. After having a sinus infection, I went to my ENT. She did a CT and discovered the lining of my brain on both sides was very very very thin. Far worse on the right side. My CSF was in danger of leaking from my eyes, ears, and nose. Even worse, I was in danger of getting Menningitis. All this was discovered in October 2015, and the surgery, on the right side, happened swiftly on dec 7th.
    In the hospital, Georgetown University, for 7 days. It was challenging. No appetite, medic making nauseous and constipation.

    When I came home, I felt as if I was in a fog. I took my doctors recommendation and slept, slept and slept some more. My head is still numb. When I touch it, it feels like someone else is touching it. I also had a lumbar drain, so go the back stitches out one month post surgery. They were killing me and I could only take showers, which made my skin even more dry.
    Today is about 6 weeks post surgery and Im feeling pretty good. Im still not back at work and I dont feel I am ready yet. My biggest issue is my vanity. My right side of my head is shaved and Ive tried many wigs, its just hard to look one way for 47 years and then look another. I am so grateful though. Still have a few scabs that have no fully healed, but I am coming along.

    I still feel overwhelmed by everything. It has been a wild ride…..

    #CraniotomyClub

    • Judy says:

      Forget the wig – I wore hats and never once felt weird in them. I had the fluid leaking out of my ear for almost 9 months. Very lucky I did not get Meningitis. 9 months out the the head at times still feels funny. I really don’t even remember the first 2 months but I was out walking 10,000 steps a day and then sleeping. We are alive and it gets better and better each day. Sometimes I just massage the area and that helps. Remember, just get a couple of good hats. I got mine from a store that also sells special bras but with the weather now you will find some nice ones. Be strong Be Proud – it grows back.

      • Judith says:

        You made my day!!!!!!!!!!!!! What an awesome comment. Thanks Judy

        Judith

      • Susan says:

        I had collected lots of hats when i had my 3 craniotomies and i do have wigs which i didnt use. Sadly one of my friend in the US recently had a stage 4 colon cancer and the best for me to do is send my used hats to her and share my health journey. I am on my 5th months after my last craniotomy and i have issues still and my stamina is not the same and many lapses of words and the depression. I thought i will never take anti depressant but i did as i cannot contain myself. I did not think of my vanity after my first surgery and even up to now. Gained weight and i am not ready to physically look good at the moment But just being alive is a greater blessing given to me. A very devoted husband and family.
        All of us surpass the big operation and God Bless us all!

    • Karen Beugelaar says:

      Hi Felicia, reading your experience is like reading mine, I went to my local hospital here in Perth , Australia, on sept 29th because I had a headache at the back of my head which i had for 3 weeks and it was getting worse, they sent me for a cat scan, next thing I know I am in a ambulance going to a big private hospital in the city because I have 3 brain tumours. Then in October came 11 days of radiotherepy, the meds from the radiotherepy where worse than the radio, Dexamethasone made me foggy, of balance and soooo tired. After another scan on dec 9th followed by surgery on dec 10th where the surgeon took out a 34mm tumour from the back of my head, the lesser tumour is 16mm but too deep for surgery and the other tumour is very small. now 6 weeks later I am weaning myself of the anti seizure medication, Lycra and levitiracetam. Depending on which doc I talk to, one doc, the surgeon says I can stop all medication now, my GP says I will be on this medication for life. No more work or driving? I am only 53yrs old. I told my GP I will prove him wrong and I WILL be going back to work. 10 days after surgery I went to my GP who took out all the staples. I am feeling pretty good right now, I still have daily naps, which I am trying to stop doing, if I nap during the day I don’t sleep at night. I have dropped the medication to once a day, but I am still waiting for my hair to come back. All my hair fell out after the radiotherepy. I hate looking in the mirror, so avoid it as much as possible. It certainly has been a whirlwind, on sep 28th I was working, I am a courier, so had a wonderful life and a amazing husband. the back of my head is still numb and I can feel the plate in my head. I don’t see a doc until April when I have my next scan to see if the tumours have grown. Things can only get better from here.

    • Karen says:

      I can sympathize with your hair problem. My head was completely shaved, and the hair growing back (about 2 and 1/2 inches long now) doesn’t look like me at all. It’s very hot here in the summer, and wigs are not comfortable. I’ve been wearing hats and trying not to think about it.πŸ™‚

  30. Angie says:

    Hi everyone. I have a meningioma. My neurologist wants to wait before he thinks about doing surgery. In the last year it has doubled in size. My only symptom so far is that my right eye gets blurry. I don’t want to wait till I start having seizures. I work in health care and I’ve seen lots of people have them. Any advice? Anyone have their meningioma taken out before severe side effects started?
    Thank you!

    • Patti says:

      Get a consult from a new Neurosurgeon! The fact that your eye gets blurry is a side effect. A neurologist might be more conservative in treatment modality. Get some good referrals perhaps from your primary care dr. or a University facility and see someone! You will feel better. I had a meningioma removed left frontal 2 1/2 years ago, left hospital in 4 days, had a good recovery and though I still get tired sometimes a nap takes care of that! I am 73 also so that might be why I get very tired sometimes! ha. See someone Angie, you will feel better!

      • Dave Leib says:

        I had blurred vision when I woke up one morning and at the end of the day my tumor was pressing on my optic nerve. I had a bifrontal craniotomy 2 months ago and hours after the surgery my vision was back.

  31. Sarah H says:

    I am now 23, had brain surgery to remove a benign tumor from the occipital lobe of my brain at the age of 11 (will be 12 years ago this may). My skull was not replaced or covered; i assume since I was a child with a head that still had a lot of growing to do.
    I have a gaping hole in the back of my skull, which has always been a source of anxiety for me, but for some reason has become more stressful as of late.
    I have never able to sleep flat on my back, as laying with my head flat like that for too long is extremely uncomfortable.
    When i exercise really hard or lift something very heavy at work, it throbs.
    I sometimes have nightMares of being accidentally stabbed, hit or sustaining injury to my head in some way, and dying or becoming permanently brain damaged!
    Is anyone else experiencing this?? I would like to know if it gets any better or less stressful!

    • Patti says:

      No I have not had an experience anything like that but I do have some advise. My brain surgery left my skull uneven, bumpy, and in one area it is painful to touch (why I don’t know) ,but I do have a skull so I would say see a neurologist or see a neurosurgeon about this “hole”. I would think they would be able to fill in with a material at this point in your life or give you some explanations as to why this is not dangerous for you. YOu are not being overly concerned. I think anyone would have those questions. So schedule an appointment and get answers and hopefully a solution!

    • Carmen says:

      Yes I had 2 crainotomies in 2005. Have holes in my head. Always afraid of hitting my head. Lately I’ve been having tenderness around openings and nerve pain. Lyrics not helping at all.

  32. christina says:

    Thank you for your knowage of this on im23 and bout to have this surgery done and am super scared this help we putmy mind to ease

  33. anonym says:

    had a open craniotomy 8 months ago now i have small bumps on my forehead not visible but i can feel it and im very upset. is this normal and just healings the nerves or is this a problem to have those bumpy feelings

    • Patti says:

      I’m 2 1/2 years post craniotomy, left frontal meningioma, and I have never seen this comment before! I too have a bumpy feeling near my hairline on my left forehead. Right forehead is smooth as can be so I know this is from my surgery and yes it does bother me when I rub my forehead just knowing it’s not smooth, but you can’t visibly see it – so I just try to keep my hands off of my left forehead. It has to be calcium deposits from the bone healing and so just be thankful it doesn’t show visibly! And that I am otherwise well and having no other problems. It was good to see that I wasn’t in this all by myself!πŸ™‚

    • Donna says:

      It’s not screws from titanium plates? Did they tell you if they left little plates and screws? Mine are sure bumpy, and start just in the hairline at the right temporal area. I had a big question-mark scar,on the right side. I am 2 years out and there are changes to my scalp and in the scar line, etc., but I think I have gotten pretty much used to it. They are here to stay, I guess.

      Wish you the best and strong healing. This stuff is sure not fun, is it? I’m doing fairly well, but it does change your life. Mine was a subdural hematoma and brain bleed, then seizure disorder. Again, best wishes to you.

    • Tish says:

      I am now 13 months post craniotomy but still have nerve damage, it may never repair 100% but certainly can live with it. When you go to your follow up CT or MRI, which ever one your doctor refers for you, ask if they can just do a normal X Ray, this will tell you were all the screws and plates are. Once your forehead and scalp repair after the nerves were cut at least this will let you know where everything is. I have 2 screws and a plate to the right side of my forehead and 9 screws and like little sputnik fasteners to the right side of my head. The X Ray also shows the aneursym clips inside. I have lumps and dumps and valleys where the skull was reattached and it does change over time. This site was certainly helpful to me post surgery and even now, continuing with life with what we have all survived. We are strong and above all else, we are here talking about it ……

  34. Anonymous says:

    I have a dip & lumpy feeling under the scar running from left eye to bottom of right ear, 7 months in and it is still very itchy at times and very sensitive whilst all the nerves are repairing. I have 6 screws (no plates), 2 are under the scar, one is on the side of my head which is annoying as it rubs on the pillows at night and the other 3 screws are right in the front of my forehead. Certain lights you can see them but I know they are there and are really annoying when you rub your forehead or if you accidentally head butt something. I see my surgeon next month for a follow up and will be asking him if I can get them taken out at some stage. Stay strong everyone and best wishes.

  35. Anonymous says:

    Thank you. Gives me a guide as to what to look for. Going through a lot of the same stuff now

  36. Cristie says:

    Hi there,

    I just had a craniotomy surgery in my left frontal lobe about 3 weeks ago to remove a piece of brain tissue where I had epilepsy/seizure causing brain cells for the past 20 years, finally 100% cured and seizure free. I just had the staples and stitches taken out of my head wound a couple days ago. Your article was very helpful and useful to read. So thank you so much for writing it. It’s also nice to see that there are plenty of other people who can relate with the same/similar experiences. I have a question… I just finished having to take the steroid, dexamethasone which was making me pretty moody and loopy like all the time to the point where I had to warn people that if I lash out at them or give them attitude, it is not all me and I am sorry and to just ignore anything mean I might say. I am still feeling the same way, not myself at all, and I have been off the medicine for almost a week already. Is that normal? I really hate the feeling including my mood swings because I am generally not an emotional and moody person, I am very zen and laid back. I can feel and see myself being annoying and rude but feel like I can’t really control it. Maybe it just isn’t all out of my system yet completely? What do you think?

    Thanks a billion!

    • MC says:

      I had a craniotomy two years ago, they cut through the right frontal lobe to get to a tumor in the center of my brain. I noticed some initial “impulse control” issues, saying/doing things before I had really decided to. It has gotten better over time. Hang in there!

  37. Karen Grohs says:

    Thanks. It was very helpful to read this. I am four weeks post op and getting my strength back. My brain function feels normal. I still have the tight scalp (you described it well) and the numbness. My follow up with the surgeon was earlier this week, and she was pleased.

  38. Ibrahim Balbaa says:

    I had my frontal craniotomy surgery 14 weeks ago to remove a large meningioma tumor. The neurosurgeon installed an artificial bone implant (PEEK material) attached to my skull via titanium plates and screws. In general all is well, except that I still have fluid (prbably CSF) appearing under my front-head skin after I wake up in the morning, but it disappears by 2 pm, every day. Is this normal? Any one had this occur? Thanks

  39. Joan says:

    Ibrahim my husband had brain surgery again after three years a month ago. Again to remove mengionimas . His plate was switched from titanium made bigger and replaced with plastic. He has so much fluid on the incision side and they keep saying its normal. We didn’t see that happening the first surgery three years ago . Wondering when it will go away

    • Ibrahim Balbaa says:

      Hi Joan,
      Thank you for your reply and sharing your husband’s experiences. I hope the fluid would go away ASAP. My next appointment with my neurosurgeon is at the end of September. Hopefully the fluid would diminish to minimal by then, or he would have to provide me with a reasonable explanation and/or some treatment. Wishing your husband all the best.

      • Anonymous says:

        Thanks Ibrahim my husband saw the
        Dr last week.again said it was normal and takes a long
        Time time to away. My husband wanted the dr to take a needle and remove fluid but he refused saying risk of infection. My husband is miserable says it feels like a balloon in his head and now he is having radiation and the pressure is painful when he lies back and has the mask screwed down. Dr asked to see him in 3 months hopefully it goes away by then. Good luck with your appt

      • Ibrahim Balbaa says:

        Yes, my dr said the same thing about the needle. I hope that it goes away sooner than later. It has been about 4 and 1/2 months since my surgery. I hope your hasband will get to the radiation therapy and would not feel the pressure any more. Best wishes. I will keep you posted with what my Dr would tell me. Regards

  40. Dave Leib says:

    I’m at month 2 and the numbness and pain is still quite strong. Is this common?

  41. Mary says:

    I’m glad I found your blog. I’m two months post surgery and experiencing many of the same things. Helps to not feel alone.

  42. Judith says:

    David & Mary I am 2 years out and believe me everything is the “new normal” This is such a strong group and always there when we need each other. Keep on writing and you will get replies. Remember how strong you both are!!!!!! this is not for the faint at heart. Tell yourself that each and every day!!!!

  43. Tony says:

    Thank you so much for putting this together. I am just starting my forth week of recovery from a clipped aneurysm craniotomy & found your words very informative & comforting is to what to expect as time passes with the recovery. It would be great if you continued, I am also thinking of doing one.
    Thank you & great respect.
    Tony

  44. Mara Rebekah says:

    Thanks for sharing… had my craniotomy a year ago and went through the same things. Not pleasant memories… but I still have bad dandruff particularly around the scarred area…

  45. Anonymous says:

    Wow I have been ignoring my experience and finally started Googling because I still have so many questions about my recovery. I thought I would be back to myself by now. 3 PM yep exhausted. Itchy scalp at the incision is maddening and the whole area is dry. I didn’t know I could use ointment, thank you. I had my surgery out of town, great job, but I’m on my own now. My local dermatologist said that I have stitches that are growing out. They feel like hard little bumps. Did you have those? Also, my left temple hurts. I didn’t know about the screws that held my head still. That makes sense. I wish I had some helpful info to share. Thank you for sharing. We survived!! All the best

  46. Tracey says:

    Thankyou I’m 6 weeks post op and this helped me a lot

  47. Terry Joy says:

    My sister is having this surgery next Tuesday for 1 of her aneurysms . I really appreciate your story. Trying to figure out what she is facing. GOD BLESS YOU

  48. Kelly says:

    Thank youπŸ˜€

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