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 food as my rehab.
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232 Responses to Post craniotomy healing / normal recovery

  1. Bobbi says:

    I’m 7 weeks out from a bi-frontal craniotomy to remove a tumor that was pressing on my frontal lobes & I was told you to have the surgery or lose my life.
    Mine was done temple to temple..& my recovery has been slow! I have had PT, OT, And nursing All at home which is been great. I still have a lot of headaches fatigue nausea

    I still have quite a few headaches, Fatigue is absolutely still there

    • Just Jules says:

      Hang in there. It does get better, it just takes time. Some more then others. Rest and the headaches will get better. If the are getting worse or concerning contact your doctor.

      Our brains get ticked off when someone has put their fingers where they done belong. And believe me when I say the brain has its own agenda when it comes to healing. Take your time and you will get better.

      • Anonymous says:

        Thank you so much for your blog! I am a week out of surgery. And with your blog I feel I understand more of whats happening! Jb

      • Just Jules says:

        Welcome to the club. It does get better. Hope you start feeling better soon. Remember sleep and rest are you friends right now! The rest of the world can wait a few weeks.

  2. Bobbi says:

    Sorry, Started repeating I need to get some sleep will finish later….

  3. Lulu says:

    Thank you for these notes. I’m at about 7 days post surgery and can manage to type! I’m definitely having trouble with finding the right words, last night I was looking for “Maid” and couldn’t figure it out. Weirdness. Best of luck with your continued healing. It’s a long process and I’ve a long ways to go before I get back to what was normal for me last year. :)

    • Just Jules says:

      Lulu – yes you are at the beginning, and trying to find word you know how to spell, can be very frustrating. I still have those days when nothing comes out right. Make sure you rest as much as you can. It really does help. Take care of yourself.

  4. Betsy says:

    My 10 year old son had encepholocele craniotomy 9 days ago. Scary stuff. He is sleeping a lot and barely eating. Drinking some and has intermittent severe headaches. Blogs help more then talking to drs.

    • Just Jules says:

      Sending prayers your way. Kids bounce back quickly from these things. Sleep is his friend right now. My body clock would rest every few hours.

      Just don’t let him over due too much until he is cleared by the doc’s.

    • Just Jules says:

      The barely eating might be because he can taste much if the damaged his olfactory nerves. I had the same issue.

      • mary says:

        I have a question for you. You speak of olfactory nerves being damaged. I had a menigioma taken out in January that was on top of my olfactory nerves. The one set of nerves was completely demolished and the other set was badly damaged. I still cannot smell (though I have what could be called ‘phantom smells’) and the surgeon said that I more than likely will not smell again. But the taste is also affected. I cannot taste many food items now. If this is similar for you or anyone, I would like to know please if it (taste) comes back over time and if not, how are you coping with the limited taste issue. Thank you and good wishes for everyone.

      • Just Jules says:

        Yes it sucks not having the sense of smell. Ok so I can smell bacon sometimes so there are a few little nerves that get me excited because everyone in a while I smell bacon!!!

        Lol, ok so yes I have had issues with the food taste as well. Our tongues only get salt sweet sour fat, it does not get the slight favors that comes from the nerves that go from the olfactory down behind your nose area to get the aroma from biting Into something and sending those smells up to the brain.

        There are some times I have a craving but can not satisfy it. Period. I get pissed off and frustrated. But there is nothing I can do to change that.

        What I have learned is this:
        All Processed foods all taste like cardboard.
        The closer you get to the farm the better chance of you tasting something, it won’t be bold flavor but you will get something.

        So when I really want something I can taste I will go to the farmers market buy the freshest ingredients available then cook them with fresh herbs, onions and garlic. For me one clove of garlic will add no flavor but 4 or 5 I get some flavor. I also have found that the farm to table restaurants are the best, because they are shopping at the farmers market and making everything from scratch.

        Then there are those few days that everything taste like cardboard so I grab a doughnut and go on with my life. I can taste sweet so it works. Remember vinegar will taste like lemons. F you go out to dinner and the place heavily salts their food, you are going to get the salt taste. So I try and use my memory on what it should taste like and go with that.

        I also will eat things the husband will put his nose up too because of his taste buds are working just fine and the combination to me taste great because it must have either garlic, ginger, vinegar or lemon in it because I can taste it.

        Wish I could be more of a help here. The craving for something new never leaves. Unfortunately I have not found any way to satisfy that craving. It sucks.

        I do find my self making the statement yum, or this tastes good, mostly because it has something I got a flavor of or the texture is perfect. So it is the little things I compliment when everyone else is Raving about how wonderful the food is. Let me know if you find something you can taste and I will try it. Oh and don’t forget about bacon I can taste that.

  5. Anonymous says:

    I’m post two craniotomy surgery August 12, 2013 & September 12, 2013, I still get lots of headaches and my balance is off at times. I’ve also developed this really bad case of dry, itching, dandruff scalp…very frustrating case didn’t have this problem before

  6. Cora Davis says:

    I’m post two craniotomy surgery August 12, 2013 & September 12, 2013, I still get lots of headaches and my balance is off at times. I’ve also developed this really bad case of dry, itching, dandruff scalp…very frustrating case didn’t have this problem before

    • Just Jules says:

      Welcome, sorry you are having issues. Talk to the doc about the scalp. They might prescribe something for that.

      • Patricia A. Retherford says:

        Read on another site that the “dandruff scalp” I had two patches of cradle cap looking and feeling places. It’s the skin healing after being lifted from the skull – anyway, my hair dresser recommend then gave me a cup of something to put on after 2 or 3 x’s a day and it’s clearing up. Tea Tree Oil will work too. Ask a hairdresser.

    • Donna says:

      Boy, I hear you on the headaches, balance and scalp issues. Every evening, my scalp starts hurting to the point I pull on my hair to try to relieve the pain (actually, I read once that is a medical practice in Taiwan). I don’t do it because I’ve heard of it, I do it because it feels so painful and it seems like it might help. It really just aggravates the nerves more and makes everything hurt worse – which makes you wonder why I do it. I am almost 4 months out from crani and am going back to physical therapy to help with balance issues. I have gotten worse in a lot of things in the last month, but hopefully some therapy will help. I think I am having vision issues in my left eye, too. Well, on we go… some days are fully of self-pity, but the parties usually only last a few minutes or hours, then I’m okay again.

      • Just Jules says:

        Ohhh that sounds painful. I found in the early stages of this surgery hot water worked the best to sooth the scalp pain. S even now when I have those twinges I will climb into the shower with the water as hot as I can stand it and let it run over my scalp until it is gone.

      • Julie Grant says:

        Am sorry to hear you have pain i can honestly say iv never felt any pain of any kind just itchy when my scar and bone was healing which is completely normal i only had a small csf leak then had a lumbar drain fitted which did the trick and that hurt like mad getting a lumbar puncture but my head has never hurt to which i am really glad its been six months today since my surgery and life has never been better

      • Tracey says:

        Hi Donna,
        I had my crani in May 2013. I have struggled with the pain & discomfort of nerve damage since then, but it is getting better with time. I found that by wearing a hat it would make my head feel much better. It’s been over a year now, & most days I still end up with a hat or cap on my head at some point. Good thing they are fashionable right now! I wish you well!

      • Patricia A. Retherford says:

        I find that there are still times almost one year after surgery that a cap at night = knit and snug makes my scalp feel better. It’s not pain as I think of pain, just irritating? can’t really express how it actually feels.

  7. Julie Grant says:

    I had a temporol lobe lobectomy done on the 12th december last year and omg i had a csf leak then i was sick for seven weeks due to gastric problems but my head and scar have never been sore even when it was first done i was amazed at that i still am really week when i stand for any length of time still of work i am able to do housework and cook so i guess its a start it has completely zapped my energy big time on the other hand i was having trouble sleeping but after a week on sleeping tablets all is good just waiting on my hair growing in has i have long hair i will be waiting a while i hope to get back to work sometime

    • Christina says:

      Good Luck Julie. I had my brain surgery in oct.11 2012.. I am still waiting for my hair to grow back. Now I look like a punk rocker… I had it done on the frontal part of my brain…no offence to punk rockers!!! I have long hair too….I hope you feel better!

  8. Christina says:

    hi I just got one question… I had a cavernous malformation in the frontal lobe of my brain in October 11.2012. Now, I feel around and my forehead feels different. Is this normal? I had a scan of my brain..everything is fine. I havent went back to the doctor. Is it like a old house…it just settles a little?

    • Christina says:

      sorry I got the year mixed up 2013

    • Just Jules says:

      I think you pegged it with the settling in. I am going on almost 2 years and yes my forehead feels weird.

      • irishmom0563 says:

        🎇Thank you so much! I do pray for everyone going through these tough times. I know its not easy! I hope very is getting better! And thank you all for you insight and experiences … the doctor doesn’t tell you much after the surgery. I really don’t know what to expect. Thank you all for all your help…🎇

  9. Melissa Collins says:

    I had a craniotomy Jan. 3rd 2014 after discovering a small tumor on my right side behind my ear. Turns out it was a GBM but they managed to get it out and I’m on both radiation and chemo (day 20 today!) Healing has been well but I occasionally leak from my incision since my bone flap wasn’t put back in. Lol So I have this funny soft spot that’s currently filled with CSF , gross huh? I spring random small leaks lol Good to see I’m not the only one getting brain Farts! Lol I also forget where I put stuff easily haha the fatigue is still there especially with treatments hahao guess I’m thankful bdont really get any headaches but boy is my scalp sensitive! Especially the area around where I was stitched up. I have lost ny hair due to treatments so it’s even more irritating to have that plus sensitivity haha I’m only bald on my right side too.

    • Just Jules says:

      At least you have the right attitude. You have been through the wringer. We will just call you leaky (joking) I hope they get you skull back on soon. It will make your life a lot easier.

  10. michael says:

    I don’t want to be rude or lack compassion as everyones surgery is different and craneoplasty’s are a huge thing.. But I just found this a bit exaggerated. I don’t know if it was a larger skull area or a different type of craneo than what I had, but I felt virtually none of this. I felt in pain and nauseous for the first TWO days, then I felt fine. I’m a week out now and still have the staples in, I feel no pain or headaches except i do feel a little sick – very manageable though.

    • Just Jules says:

      Sorry you feel that my surgery and complications are over exaggerated. Like I aside everyone is different. Glad that you are doing so well and have no issues.

      Unfortunately this is my true story. If you read it you would understand what I have been through.

      • michael says:

        yeah i know, sorry if it sounded harsh. It’s just that I read this before my craneoplasty and was really nervous and scared. Seeing as this post comes up quite a lot when you search for recovery after craneoplasty, maybe it’s an idea to include something saying that some people are fine after it. With dealing with brain injury and a major surgery it’s not nice to get the added nervousness from this post.

  11. Anonymous says:

    Thanks for the blog really has helped more than you will ever know! The pain is the worst cant describe but I know it will go. Thanks again Blessings to you!

  12. lucky girl says:

    I had 4 brain surgeries in oct 2012 and my head where my temple is on the left side is still numb… anyone else have this

  13. irishmom0563 says:

    🎇Thank you so much! I do pray for everyone going through these tough times. I know its not easy! I hope very is getting better! And thank you all for you insight and experiences … the doctor doesn’t tell you much after the surgery. I really don’t know what to expect. Thank you all for all your help…🎇

    • irishmom0563 says:

      I hope everyone is getting better…I just fix my typo

    • Just Jules says:

      Irish Mom you are welcome and thank you for your prayers for all of us. We all have been through something we should never have to go through. Yes doc’s never tell us what to expect because unless they have been thought it they do no understand.

      Thanks for stopping by, feel free to ask any questions if I have not been through it I am sure someone else will be along to answer your questions.

      God bless and hope you are feeling better.

  14. Julie Grant says:

    I had a temporol lobe lobectomy done in december last year i did have a small csf leak which stopped after five minutes so i had to endure the pain of getting a lumbar drain fitted and low pressure headaches they were so sore and i was sick for seven weeks after it i cldnt eat a thing but nearly four months on things couldnt be better plus my hair is growing slowly still not back at work and need a rest if i stand for too long but its getting better i can walk a good bit

    • Just Jules says:

      Thanks for your update. I know your pain regarding the low pressure headaches, they are the worst!

      • Julie Grant says:

        As of today i am eating normally the bowels move hahaha the head is itchy in the inside so i think thats it healing up i am walking normal pace and length the only problem being i cant stand up long i get tired quick am ok if i keep on the move as for my massive scar its fadin everyday thanks to bio-oil its a big c shape that goes from my head all the way round and past my ear its huge takes up all the side of my head the best bit is i have had no seizures since november and that was the whole idea of this surgery should done it years agi

  15. Bobbie says:

    I just had a middle fossa crainotomy to my left side. I have psedu tumor cerbri and a CSF leak. The doctors found a whole in my skull and dura. I ended up having some of my brain come out and was behind my ear. The doctor fixed the whole in my skull, dura and had to cut off the bad part of the brain. I also had a shunt put in at the end of Jan to help with any pressure.

    I have a tremor and weekness on my right side and a lot of pain where they cut me open. I also have some speach issues. Went to the ER last night and had some CSF drained via a spinal tap since I was having vision issues. I am so tired all the time. The medicines are many. I was taking flexril that we stoped since it was causing more pain then helping with my jaw. They cut into it during this surgery.

    This friday it will be 2 weeks since this surgery. I have a nurse, PT and OT comming to the house. There was no way I was going to go to a rehab facility, I wanted to be in my home.
    The other post here are familiar. Bits and pieces from all of them sound like what I am experencing.

    Thanks for letting me read your post and posting my story. Im sure my spelling and sentence structure is off but its the best I can do right now.

    • Just Jules says:

      Bobbie, wow, you have been through a lot of pain and suffering. I too had brain removed because it was in my sinus. Just remember you are at the beginning of this journey. Keep up the positive attitude. Look at me under 2 years and I am dealing with my thought pauses, speech pauses and blind in one eye.

      I have started competitive shooting and getting ready for my First Nation match in May of this year!

      You got this. Just give yourself time to heal. Our brains get ticked off when surgeons put their fingers where they don’t belong and cause us all of these other issues. You will get through it. By week 2 I was barley able to stay out of bed for more then a few hours. Baby steps, and I know you will make a full recovery, it just takes time. <<<ok I hated it when my father who had a stroke in 2010 and was blinded on the left vision of both eyes kept telling me I just takes time. I did not want to hear that, I wanted it NOW dang it! Well guess what dad was right it takes time to figure out our new normal and adjust to it not let it get us down.

      Stop by anytime you want to talk.

      • Bobbi says:

        I completely understand I want it now thing! I’m just short of for months I bi frontal craniotomy & still can’t figure out why I have such bad fatigue and such brain fog ( I call it Swiss cheese brain). Then I’ll have periods of rapid memory rush is that come back. I’ve been losing bits of time so an EEG Was done. DR. Says I have postoperative epilepsy…I didn’t even know that was a possibility? Going to do a 72 hour EEG (Annuity) Has anyone else said anything like this? I hope all of your feeling well thanks for your time God Bless!

      • Bobbi says:

        I completely understand I want it now thing! I’m just short of for months I bi frontal craniotomy & still can’t figure out why I have such bad fatigue and such brain fog ( I call it Swiss cheese brain). Then I’ll have periods of rapid memory rush is that come back. I’ve been losing bits of time so an EEG Was done. DR. Says I have postoperative epilepsy…I didn’t even know that was a possibility? Going to do a 72 hour EEG (Ambulatory) Has anyone else said anything like this? I hope all of your feeling well thanks for your time God Bless!

    • Donna says:

      Bobbie, I had a large subdural hematoma and it was evacuated by a craniotomy back in early February. I did not know that I was having seizure auras before the accident as far as phantosmias, but the surgery set everything off and I apparently had bad seizures after the actual surgery. Now the puzzle comes together. They did the 77 hour EEG on me in ICU and now I am diagnosed with ‘epilepsy’ and taking strong antiseizure meds. I have the severe fatigue often and brain fog you talked about, balance issues, and vision decrease in his my left eye – actually an area of peripheral vision loss. I get discouraged, but things are starting to get some better – depending on the day you ask me, ha. I had a deep vein clot, so was put on warfarin, and that was just stopped last week, yay! I also am weaning off Dilantin, but increasing on Keppra, and I can’t decide if this is helping my symptoms yet. These are important milestones in my recovery. I am not a patient woman, so I am having to learn that patience like Jules says. She speaks positive words into our lives, and I used to feel that way, but life has been kind of rough recently with this and other things. When I get this way, I try to remember my trips to Africa and seeing how a lot of the rest of the world lives and know that I would be dead if this had happened to me there. It’s all about perspective, I guess. Thanks for letting me share… not so many people are in this club. Hang in there. I have a feeling I am about to see a major change in the way I feel, and I bet you will too in time.

      • Bobbi says:

        I am just now realizing this may have been in response to a post I did…Either way Thank you! Alot of things are similar for me, After my Crainiotomy in Nov. 13 I now have post-op epilepsy, multiple vision changes ( peripheral loss in 1 eye) . But checking on Fri. To see about wearing. Contacts against! Yay! For my migraines/light sensitivity the tint by Axonoptics is a God Send!! Weaning off Dilantin slowly, and Topamax is a 1-2 punch for seizures & migraines @ proper dose! Some days are better then others, but still moving forward & Thankful to all of you here for sharing, support, & strength! Keep on & God Bless!

      • Bobbi says:

        Donna, Just checking in…hopefully things are going well for you? Thanks so much for sharing your journey..I have read it many times since posted. I don’t always reply, but from this site I always know I’m not alone!! Take care, Bobbi

  16. Patricia A. Retherford says:

    I had a craniotomy on September 2, 2013 for a meningioma, left front frontal lobe. It became symptomatic on Sept. 1 – and I went immediately to ER because strokes always do better if treated immediately and since I was experiencing aphasia (word scramble) etc. I thought that might be a stroke. CT scan diagnosed 2 meningiomas – frontal lobe and one on the lower back of my head right side. 1 hr from University Hospital, sent there via ambulance and had surgery at 8 a.m. next day! I had a very uneventful recovery. No pain meds other than Tylenol – no physical effects or mental effects from surgery. D/C home from Neurosurgery ICU on 4th day. Now 6 months post op I find that I have about controlled the “dandruff” type of flaking – the hair or scalp on my crown, left side, feels kinda of numb or more like my hair hurts. I did have all my hair shaved and think maybe on reflection I am happier with that than trying to have longer hair and then no hair in certain areas. Older women might understand more if I say it feels like when we used to put our hair up at night on brush rollers and the discomfort from that to your head . I am off all drugs associated with surgery – antiseizure etc. My only real complaint is that I am very tired by midafternoon and the more I try to ignore that the more I realize I still have some recovery to see through. I am a 71 year old woman and am very active and thank God for the recovery I have experienced to date. Good site – was wondering about discomfort in crown of head and “dandruff” and tiredness – thanks for the answers.

    • Patricia A. Retherford says:

      clarification – the second tumor on back of right side of head – was very small and they didn’t operate on that one. They did however, did radiosurgery – radiation – in February of this year.

    • Just Jules says:

      Glad I could help, wow you had a very quick decision time for your craniotomy. Glad you are doing great. Yep I still get tired. I a, approaching my 2 year anniversary. Hair is back to a length past my shoulders now. I have had in total about 6 inches cut off in the past 2 years.

      I understand what you mean by hair pain. Now that my hair is long I put it up in a pony tail and wowie pin for Bout 4 hours after I took it down, I could not even touch my head where my scar is.

      Good luck on the recovery glad my experiences has helped you in your recover.

      • Julie Grant says:

        I had a temporol lobe lobectomy done in december 2013 it still feels funny on one side but i am religous in rubbing in bio oil for scars and today its doesnt even look like anything went on except short hair i still dont like the feel of a brush on that side its not normal yet health wise i have had a few blips just very weak and shaky legs but that was part of my seizures hope you are getting better i no it takes a while to get better but all we can do is hang on in there as it will get better

      • Just Jules says:

        You have the right attitude. Keep it up.

      • Patricia A. Retherford says:

        Just Jules, yes it was quick, just overnight. I will continue to listen to my body and rest when I need to. Crown of head feels better than even a week ago, I think it is that answer I got on line about scalp regenerating, same with dandruff like places. The scar is like a grove in my scalp that you can lay your finger in, fortunately my hair is starting to grow and it doesn’t show, just feels strange to have this big groove in my head. Thanks for the answers and the encouragement.

      • Just Jules says:

        Yes, have that same grove, except mine now has bumps on the grove. Not sure if it is scar tissue over the grove? Only bugs me (just like the plates) when I run my hand through my hair. The plates well they bug me when I wash my face. I think because I forget they are then then bam I feel them again. They feel like little bruises with a lump under the skin that just won’t ever go away.

      • Tracey says:

        This site makes me realize I’m truly not alone!! It’s been over a year for me & I STILL feel worn out so much of the time (only 51 years old & fairly active). At times I wonder if my energy levels will ever increase. By the time I work all day & get home about 6 at night, all I want to do is prop my feet up & rest. Ugh. Thanks for a great site & the encouragement!

    • Mary lynn neesvig says:

      Patricia, I had craniotomy 9/13 for mengioma. I am 6 months out from surgery, still have tenderness in skull. Where did you have your procedure, mine was at UW Madison.

      • Just Jules says:

        In Southern California

      • Patricia A. Retherford says:

        I had mine at the University of Florida in Gainesville. I find my scalp itches something fierce at times and my scar is very depressed in areas – but otherwise I feel i’m doing great! I still get very very tired at times and need a nap still in afternoon.

      • Julie Grant says:

        I had a right sided craniotomy done last december that six months exactly this thursday and i have never ever felt pain in my head even when i had staples in i was lying on it from day one all thanks to the brilliant neurosurgeon.

      • Just Jules says:

        Wow that is great news. No pain would be a blessing. Congratulations! It is nice to hear from others who had not complications no issues. Every experience is different. Mine unfortunately was not an easy surgery. I think with the eye blindness and the brain they had to remove and the dura issues I had caused my issues to be extended.

  17. Bobbi says:

    Just got my latest MRI back Thursday, had the craniotomy to remove a tumor (knew I still had a small one w/a “dural tale) to watch that was asymptomatic. Now another has shown up…My body seems to develop random tumors when it wants! Have had removed from both hips, both wrists, & back of hand also brain!
    Told my Doc I feel like a tree, just
    keep hacking @ limbs (side issues) but never get to the
    trunk (main problem). Sometimes its hard to keep telling everyone I’m fine! Just one of those days! Sorry, hope you all are doing well!

    • Just Jules says:

      Bobby, hang in there, sooner or later they will figure it out, have faith. I understand the “tell everyone your fine” When you really feel like telling the truth that you are sick of being sick.

      Brain surgery sucks. But you are a tough and strong individual and will make it through this. Sending prayers for a complete recover and tumors to stop and go away.

  18. P.M. says:

    Today is my 2nd month post craniotomy. What a journey this has been. I’m so glad and grateful to have made it this far. Please pray for me and I’ll be praying for you ( alongh all the people I met in during my hospitalisation

  19. Anna says:

    Hi, my mum had a craniotomy (2nd Jan 2014) after she had a stroke while undergoing clipping surgery for an anyuerism. This all occurred on the left side of the brain so she is currently paralysed on the right side and is unable to speak. Does any one know if things may improve for her once she has a plate put in to replace the skull? Thanks

    • Just Jules says:

      It takes time. Yes I would suspect that she will start doing better after they have her skull back in place. My farther had a stroke, they aid that 2 years before you know the full extent of recovery. Sending prayers your way.

  20. Susan says:

    Hi everyone, I had a crainiotomy for an unruptured aneurysm in Oct ’13. Still tired, head throbbing at bedtime, trouble with words. Happy to be alive & had a wonderful surgeon. But today started having horrible sharp pains by incision on top of head. Is this normal after 6 months? Mid left temporal site. Any info appreciated! Thanks.

    • Bobbi says:

      My surgery was Nov’ 13 for tumor removal. Still Having a lot of trouble with fatigue and word recall/memory. Can’t speak to headaches as I have severe migraine always have. As far as the other, I have right sided temporal incision pain ( sometimes dull but can be sharp many times, especially during weather or if it gets bumped). I always think I’m feeling a screw through that spot! :) from my understanding it will get better it just takes quite a while… I hope this helps! Best wishes!”

      • Susan says:

        Thanks for replying! I have looked in several medical sites with no luck in finding a general timeline for recovery from headaches due to the incision. I guess all of us have to leave it up to time. Oh, well! Best to you!

      • Just Jules says:

        Best of luck to you. It gets better. Everyone is different. I never found a timeline either before my craniotomy that was the reason I started this blog. Sorry it took me a few days to respond.

        I have gone a few months with out a headache and then bam it’s back. Enough that I have lost all my energy, I have slept more in the past week then I think I have in the past month. It is annoying

      • Just Jules says:

        Spot on. I am coming up on my 2 year anniversary for my craniotomy. The plates and screws will remind you they are there at the most unusual times.

        At 1.5 years I had the worst incision pain to the point I could not touch my scalp for about 5-6 hours. All because I had a pony tail type hair do that day. Nothing seems to amaze me anymore after this surgery.

        I still have issues with the word finding but not as bad. Also I am to the point I can cover it up from others noticing.

    • Just Jules says:

      I have had this! not sure what causes this. To the point where pain was a bug concern. I tell everyone, if it is concerning you contact the doctor. Boy oh boy did my doctors have a lot of emails and phone calls from me.

    • Judith (J) says:

      Hi Susan – i had the same thing on Valentines day this year. My stabbing pains are rarely around anymore. I have to sleep on my right side as it does get painful if I lay where they did the surgery. Only problem now is I seem to gravitate toward the right…like I have had one too many! it does not happen all the time but I will have a neurologist check it out. I had my surgeon write me an RX for a wig. As a professor I have to be in front of folks all the time and he thought it would be a great idea. Well, it is spectacular…..I have decided to continue wearing it for quite sometime. It was professionally ,measured and attached to my skin. I look better than I did before I went in. I keep the scar area totally shaved so I do not have any itching problems to deal with. Good luck on your journey – it is VERY cool to be alive!!!!

  21. Donna says:

    I am 10 weeks out from my ‘frontotemporoparietal craniotomy’ due to an acute/subacute subdural hematoma. I hit my head on a kitchen cabinet the end of December and the headaches started the end of January. My doc and I thought sinuses were a problem and attacked the coughing issue, but the next day after getting antibiotics, I could keep nothing down and headache was more excruciating, so hubby took me to the ER. Once they saw me and did a CT, the neurosurgeon was there in minutes and taking me to surgery. So, they took the blood clots out, and then I developed intractable seizures, the records say. I don’t remember anything much from the day my husband took me to the ER until about 10 days later. Was put into a coma because of the seizures. We heard over and over how ‘lucky’ we were that the particular neurosurgeon was on call that evening, as he is felt to be the best in this whole region. Amazingly, I am doing really good, but there are things going on just like you stated in your story, word finding, pain and pressure with the scar, fatigue, etc. I felt like your story of post-crani symptoms almost perfectly described what I’ve been feeling. However, if I get a deep headache, I get slightly panicked because I don’t trust my body anymore to tell me when it’s in trouble. It’s a bizarre case and people seem stunned to find out all this happened because of a hard bump on the kitchen cabinet. After researching things and seeing my records, I feel more frightened about the seizure issue than the hematoma, and they have me scheduled to see an epileptologist next week. I am thankful to be alive, but I saw above where one guy kind of criticized you for posting your experiences and he was doing just great. I think there can be a little euphoria, and possibly denial, after something like this and you find you are alive. I don’t remember his story, but for me, I tend to minimize everything and want everyone to think I am some miracle… which I am, of course, LOL… Not everything presents itself in the first 2 weeks after a major surgery. There are a lot of sensations going on in my head right now and not everything feels just right, but anyway… thanks for sharing, and sorry this is so long. I am a medical transcriptionist and educator by trade and fortunately my higher functions seem to be intact. When I try to verbalize things, though, I’m just like you were… can’t find the word I need. If I’m tired, things really go to pot. It’s much harder to talk than to type for some reason. The brain is a mysterious thing. Thanks for letting me share.

    • Just Jules says:

      Woe wow woos you have really been through the wringer. Hang tight it is a joy ride but you are over the major hump.

      I have been testing my IQ since brain surgery. Before I usually ran in the high 130’s just after I was in the 80’s now I am getting in the low 120’s so there is hope. Math, spelling and punctuation skills are lacking. But that too is getting better.

      Year typing for me was easier when the words just would
      Not flow. I still had thought pauses as well as changing what I was going to say be because I could not even get close to spelling a word. Spell check even had a hard time with me there for awhile. Lol

      Never apologize for long post in here. Your story might just save someone’s life.

      • Anonymous says:

        I am in my 37 days post craniotomy. I am healing well and my headaches are decreasing. My pronounciation has improved but I continue to have trouble with spelling. I have returned to work and as long as I take it easy I feel good. I still have sharp pains and numbness from the plate and the flap. I started walking on the treadmill 4 days ago for 30 minutes. The evenings are not good all of the time. The pain at that time can be intense. But l listen to my body and it lets me know if I am doing too much. Unfortunately I have gained weight from the steroids. Any one out there with weight gain and weight loss advise?

      • Julie Grant says:

        About your weight gain and loss iv been on 5mg of steroid for 14 yrs and iv gained weight but jst recently lost 4stone so it can be done i think you must be on a high dose of steroid for it too make a difference in your weight your face will have seen the difference it goes kinda round but if you lose weight it will come of your face as well

  22. Terri Houldsworth says:

    This is an amazing blog site! Thank you Jules.
    My daughter (21) had a juvenile pilocytic astrocytoma removed from the 4th ventricle 6 months ago. It took 8hrs to remove, the surgeon said it was similar to running two full marathons back to back. The recovery has been ongoing, she had bad double vision, slurred speach and balance problems for 2 to 3 months. the steriods gave her acne and she put on weight but 6 months down the line she is back to part-time work and her double vision has gone and she is just left with focusing problems when she turns her head but can deal with it. She rides her horse and is happy and getting her confidence back. The surgeon said it would probably take 1 year to fully recover.
    Anyone who goes through brain surgery and a craniotomy is very very brave and I wish you all the luck with your revoveries! This site has been so enlightening and helpful. THANK YOU.

  23. Nina says:

    Thanks everyone for sharing your experience. I had a craniotomy for clipping of unruptured aneurysms, and had five aneurysms clipped, 7 weeks ago, that is on March 24th. My surgery went well. I’ve been dealing with a cervical fluid leak which seems mostly resolved. Just still get a bit of facial swelling on the side of the surgery after laying down. I have my post surgery checkup this week, so this will be discussed. I sometimes feel a heaviness behind eyes probably due to the clips inside (I think), and also on top of the head. Have numbness on top of skull, which I hope to regain more feeling there with time. If I’m not mistaken, it seems feeling is kind of coming back. Headaches are mild, and Tylenol is sufficient. Plates and screws bother me when I lay my head on my right side. I will discuss with my surgeon about having them removed, and see pros and cons. I still need an afternoon nap. I am a stay-at-home mom of 3 kids, 10 and under, and homeschooling as well. A supportive husband, and many helpful friends, and prayers on my behalf have made a world of difference. At this point, I think the hardest days are behind me. Getting used to the “new you” is a process (scar, dent on on side of face/head, numbness on skull, etc.), and it takes time, and healing is not complete for me yet, so patience is a must. I can be thankful that my aneurysms were diagnosed, and hemorrhages could be prevented. God bless!

    • Donna says:

      Nina, I am now 3 months from crani with evacuation of acute/subacute subdural hematomas. My blessing is that my children are grown and I do not have that stress added to my plate (which I can’t even imagine at this point). Actually, though, our lives were turned upside down by this and our lease was up on our winter rental in a new town, and this left us in a pinch. Our kids invited us to stay with them until we figure out what we’re doing, and our only granddaughter who is 3 years old has a partial deletion of the 18th chromosome with severe disabilities. Times have been tough, but in the last week she has really taken to her grandma, and she is just now finally sitting up for a few minutes on her own. I think we have an unusual connection. She has seizures and is on a ketogenic diet for that, and I developed status epilepticus after my surgery. I don’t understand the meaning of all this, but am trying to find that meaning. If it means some special connection to a little girl who otherwise does not connect to anyone in a meaningful way, then I will have found it. I have all the “new you” things you mentioned above. I also need a nap or naps on most days, the numbness on the skull and some dagger-like pains in the scar, but it is nice to see in a forum that others have the same symptoms so you don’t freak out on these things. My hair came back all silvery white and is getting close to the point where I may dye it a platinum blonde and have a really cute short cut, but at this point I do not want to do anything to my head that might affect my symptoms or my scar. Everyone is so nice to say that they like my new ‘do’, so I’m hanging in with it for now. Thanks to you for writing, and you hang in there. God bless you for having to deal with this while your kids are young. Hopefully, it will mean a lot to your family as you all realize how fragile and important life and love are.

      • Nina says:

        Donna, I appreciate you writing me, and sharing your unique story. I hope you get better, and find relief from seizures, but can say you certainly have the right attitude in trying to see the good that can come out of your situation. (Romans 8:28) Our outlook makes a big difference. Again, thanks for your kind words to me, and for writing. Sincerely,

      • Just Jules says:

        Donna, glad that you have made that connection with your grand baby. My friend just lost her newborn 3 months old grandson to tristomy18 (sp?).

        If you little one is is that category you are a special special grandmother.

    • Just Jules says:

      Nina welcome to the blog. Glad that you found us, sorry you have to go through this.

      The pain and numbness goes away. It takes awhile. I am coming up on my 2 year anniversary at the end of the month. I am happy to be alive and kicking.

      The tiredness will subside. If you ha e any of the foggy thoughts and speech pauses or as I call them no brain farts. They get fewer and farther apart.

      For me challenging myself to over come the hurdles has been my Maine focus. I can finally start a book read a chapter put it down and then pick it back up with out having to start from the beginning again. It now only takes me about 3-5 paragraphs to pick up where I left off. Not the best memory but it is better then feeling like you are in that movie groundhogs day.

      Please let me know if you have any questions for me.

  24. Donna says:

    Jules, Sorry to hear about your friend’s loss. There seems to always be something so much worse than what we go through, and we have to keep our perspective. It sounds like you were referring to trisomy-18? Our granddaughter has 18p-, but does not have the outward features that you see when you look it up and go to their site. She is quite beautiful with big blue eyes, but it has seemed like her brain was just random synapses and once she got to 3 months, she just quit developing. It turns out my son has the same deletion, and I wonder about me and how far it goes back. My son is functional, but we had some questions when he was young. The registry records only 150 cases reported so far, so it may be quite rare. Thanks to all of you who are sharing your feelings. Sometimes you really need someone who has experienced things to really understand – just not wanting to worry everyone around you.

  25. Corrine says:

    Jules, thank you for this post. My mother had a severe stroke 4 months ago resulting in a hemicraniectomy. She is scheduled for cranioplasty at the end of this month. While being scared for all of the normal reasons, she really wants to know if she will look normal after getting the prosthetic skull piece put in. If you have any input/advice I would greatly appreciate it. Thank you so much for sharing your story here. All the best to you.

  26. J says:

    Thank you for this wonderful site. I had a left frontal aneurysm it had not broken but there was blood in my head. It was done on Valentines day this year. My recovery has been remarkable – back at work and feeling okay. My head has started to hurt more, is that the nerves coming back? my problem is PTSD I am taking anxiety meds and have to see a neuropsychologist. I am so afraid something else will happen to me that sometimes the fear is unbelievable. Has anyone else had those fears????

    • Just Jules says:

      Wow, sorry you had to go through this. I would suspect that the nerves are still growing back. I had external and internal pain.

      Try hard to distinguish if it is near your scar is it I thermal or external pain. Most likely It is external pain and yes those nerves take months to reconnect. If it is a dull throbbing pain it might be internal which you need to call the doctor on.

      I am coming up on my 2 years and every once in a while I still get scar pain and temple pain both external pains.

      Good luck hope someone else chimes in for you.

      • J says:

        Thank you Jules, I am so excited to have a forum like this. Fear is debilitating and I just want my life truly back. You are a gem and bless you for this forum.

    • Bobbi says:

      Its sounds like your recovery has went pretty well. I’m 6 Mon. Post bi-frontal craini. My head still numb, but nerves coming back make me think I have deep itch in different spots, but scratching never helps! I started w/psych. 1 1/2 months ago, The anxiety, fear, overwhelming feelings I’m told aren’t abnormal!! Believe me I thought I was! Taking Med for anxiety & currently working on why I feel “scared” & “guarded” re: my health…I just thought once you start healing physically, it was all good…I’m finding that my expectations both physically & mentally weren’t on point! Maybe this will help you, I hope so! I know just reading even when I don’t comment this blog really helps!

      • J says:

        Bobbi, thank you so much for that. I am terrified and seem to cry more than usual. I am a professor so it is hard to keep all that in. I also see an hypnotist and that has been wonderful. I listen to his CD when I need too. I never knew PTSD was so bad and so scary. My son is in the army and now I have a much deeper appreciation of what he goes through. I just don’t want to die. That aneurysm had been in me for a very long time. Anyway, bless you for responding to me. I hope all goes well with you. I will keep you posted.

      • Bobbi says:

        J, You are very welcome! I find I cry @ things that seem odd to me right now…a cute cat commercial, songs (both sad & happy), my wierdest I think is messages on my answering machine that even say “have a nice day” :) I know the fear/anxiety is so overwhelming…I have to tell my family “I don’t understand it I don’t expect you to”. I also have OCD, so add all this & I can’t keep my life straight…but my house is clean! Lol! I was told I’m strong, to get thru this far. so are you!! Just know you aren’t alone,we on here are all part of this club that nobody wants an invite to…Bless you & your family (Please thank your son for his service!) & to the others on here!

  27. Kay says:

    Is it “normal” to have craters and bumps on my scalp. No pain! Had my surgery in September 2012. Also itchy scalp.

    • Bobbi says:

      I have what I call “divets & bumps” all along both sides of my scar. My surgery was Nov 2013. The scalp itching (not like dandruff) feels inside…I have been told both are “normal”. The bumpiness may smooth out in time (I’m still waiting). And the itching can be the nerves regeneration process…As long as its not affecting the scalp (flaky, dry, etc.) Mine tends to feel like an itch you can’t scratch! Hope this helps & God Bless!

      • Patricia A. Retherford says:

        Hi, I have those same craters and bumps and one spot that when I touch it firmly, because it does feel kinda pimply” it does hurt – My surgery was Sept 2 2013 so not quite a year. My sister who is a surgical tech and has worked over 28 years in surgery in a major hospital in Indianapolis says the craters and uneveness of the scar line is because they used staples to close the scalp. There used to be a big bump, I could not lay on it to sleep at all, just over my left ear where the scar stopped – probably a tying off of the under skin sutures – they have dissolved and that doesn’t bother me any more. BUT in Feb 2014 I had radiosurgery on a small meningioma on the back right of my brain and they put a head ring on for that procedure. Those spots on the back of my skull where they screwed the head ring in and still sensitive and laying on the back of my head to sleep is sometimes uncomfortable. Anyone else have that problem with a headring – the forehead doesn’t hurt or have any ill effects from the ring.

    • Just Jules says:

      Yes, I still have lumps and bumps. I have been told and tend to believe it, they are the stitches under the skin. I was told that these stitches well always be there. They should smooth out however in just over 2 years I still have them and even this morning I had one lump bump felt like a pimple. Yes I scratched it no it did not move/rupture/scalp. It is the exact same stitch that like to bug me everyone in awhile.

  28. christina brown says:

    I am officially 3 months post csf leak treatment craniotomy. I am doing about the same as you were. I was and still and a big girl (330 lbs) I am trying to loose weight and my head isn’t responding well to light cardio. Had to stop after 2 weeks can’t take the headaches. I do hope you are doing well. Csf leaks are terrible.

  29. Jen's Mom says:

    Thank you so much for this blog, I ran across it as I was looking for info for my daughter, who in Nov of 2013 had Third Ventricular surgery for hydrocephalus, and in Dec of 2013 had MVD surgery for Trigeminal Neuralgia, she’s 23, but has begun having pressure, tingly itching, and sometimes the shooting pains that come and go quickly, from this blog it sounds perfectly normal. I hope everyone is doing ok. have a nice summer :)

    • Just Jules says:

      Jen’s mom. Welcome, sorry to hear about your daughter. My recommendation is to always ask the doctor if things seem different.

      I started this to just log my journey and maybe answer a few questions people run into along their journey.

      If things change it is always a good idea to just verify. Every case is different. The pains that come and go for me are from the plates and screws, the scar tissue also itches sometimes, I have lumps and bumps so yea, it is different.

      Pressure is the key word that makes me state verify with the doctor. Sometime it is normal sometimes it is NOT normal.

      • Jen's Mom says:

        Thank you Just Jules, I talked to my DD and she told me it’s not so much ‘pressure’ as it is just a ‘weirdness’ she relented that if it keeps up over the next few weeks or gets ANY worse or changes in anyway, we will go back to the neurosurgeon.

  30. Donna says:

    Just reporting in now almost 6 months after my craniotomy for subdural and then seizure problems. I am feeling better. A couple of months ago, I started Cymbalta (duloxetine), and it improved my mood, anxiety, shooting pains in the scar, scalp itching, tingling, various headaches. It delivered about everything the doctor said it would, so I was surprised. Still doing goofy things sometimes. One day I picked up a paper and put it to my ear for a phone (thank goodness, I don’t do that very often!) Another time I told my husband to make sure and get the phone, but I was talking in it to someone at the time and we were leaving the house. My mind is not organized and sometimes it feels like a blank screen comes up and I wonder where the information is. Have to say I am concerned about the mental faculties in the future. On the other hand, I can hold a somewhat intelligent-sounding conversation most of the time and people would not know. I’ve seen these kind of people in nursing homes, so it’s a little scary. But… for now, just doing okay and feeling better. Best wishes to all of you out there. Hope you make good recoveries and stay sane while you do it!

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