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.

Advertisements

About Just Jules

USCG Vet, wife, daughter, recently blimded in one eye from brain surgery, using my passion for 3Gun as my rehab.
This entry was posted in Uncategorized and tagged . Bookmark the permalink.

452 Responses to Post craniotomy healing / normal recovery

  1. Donna says:

    I am three months post up from Microvascular Decompression.
    My head is still numb, incision is still sensitive to touch and is not completely stabbed over yet. Also when it’s going to rain and snow I have a tremendous amount of pressure…..to the point I have to lay down and take Benadryl. I’m getting headaches, which just started.
    Would you consider this normal??
    Thank you for any advice…..it’s much appreciated!
    Donna

    • Linda Gullotto says:

      thanks Donna I am almost 1 month and was wondering also when these weird feelings will go away was getting worried

    • Sarah says:

      I had Occipital Nerve Decompression (which is very similar). I’m 3 years into having it done. The surgery took place at the base of my skull, where a tangled web of nerves and arteries were. Surgery itself was successful and helped me. However, I have never gained feeling back into the back of skull, neck, 1 shoulder, and I canning bow my head to pray at church. I DO think it was worth losing those feelings in order to lead a more normal life. Ps. I have to be extremely careful in sun & snow, as I don’t have sensation and can easily harm my area. Best wishes!

  2. Kendra B says:

    I am so happy I ran across your post. I was researching to see how long my scalp would be number following for craniotomy for a skull tumor. It was an added bonus to read about the “brain farts”. I was beginning to become depressed because I was having difficulty finishing a sentence and “losing my words”.
    Today makes 30 days since my surgery. Everything you have described is what I am experiencing. Trying to scratch a itchy scalp that is numb is the worse feeling in the world. I can’t describe it but I guess I’ll have to learn to deal with it.
    I’m happy to say I was able to return back to work already. Other than scalp numbness and brain facts, I have no other lingering effects.

    • Donna Hill says:

      To all you girls writing your experiences all I can say is that all the scalp symptoms, memory confusion is common, annoying, and worrisome, but you will lkely get through it in time. It takes a lot of time to truly heal, so be patient. In some ways I am finally feeling great and things are going to be okay, after all. Modafenil made a difference for me in the last few months, but it has been 3 years for me.

      • Donna Hill says:

        Funny, I don’t even remember writing what I wrote above…. I guess that’s not good, huh? All those other symptoms, though, the scalp and not being able to think properly does get better…. hang in there!

    • Anonymous says:

      Wow!!! This is me too!! Im 13 weeks post op… numbness on the top of my head drives me crazy, however my Husband massages it and it does really help!

  3. Rose Myatt says:

    Thank you so much your post has helped me so much everything you have described is slowly me ! I had my surgery on 24th January so 3 weeks post opp now.

    Yours gratefully
    Rose xx

    • Linda Gullotto says:

      Rose mine was Jan 26th and I have good days and bad days like yesterday and today it feels really weird i just cant wait until i can sleep on that side of my head i guess i am healing that is why all these weird feelings i dont like them especially trying to itch the numb parts hope you heal well

      • Kathleen says:

        My surgery was Dec. 16, reason was left lobe crainotomy to eliminate epileptic seizures. The surgery has been a success for I have been seizure free since and I have gone back to work and am driving. The downside of the surgery is the excruciating burning sensation around the incision. Hopefully this will get better in time. I feel blessed !

  4. Linda Gullotto says:

    thank you for this i have a neurosurgeon who told me nothing about what to expect it will be almost 1 month my head itches and like everyone says trying to itch a numb head is crazy weird little feelings to they had to cut my jaw muscle so i am still getting pain there how long before the pain goes away i have good days and bad days though sometimes it feels like little bugs crawling to the top of my head, muscle spasms all kinds of weird feeling just tell me it gets better please

    • Donna Hill says:

      It does! Hang in there
      Takes time.

      • Tish says:

        Hi Donna, I am 18 months today, I really don’t know where the time has gone. This site has helped me and alot of other people over the time I have been watching. My scar and head are still not completed back to normal still have little ants running all over the place at times. The scar does tend to get lumpy and very dry as it is in the hair. Stay strong it does get better but just remember it does take time and take the time to heal properly. I was back at work after 7 weeks and looking back probably should of taken a few extra weeks. Stay strong

    • Natasha Biddle says:

      Hi Linda, I’m four months now and they had to cut through my jaw muscle. I was able to eat a banana last week without my jaw hurting when I opened my mouth…it’s getting so much better.

  5. Lynn K says:

    I’m exactly 3 weeks today post op from a craniotomy. Thanks for blogging your experience. It was so very helpful and meaningful to me.

    • Anonymous says:

      I am 6 weeks post op from a cranioplasty and still swollen on the right side of my face. I also am swollen where the incision is. It feels like air from in a balloon. Did anyone else have this?

      • Linda says:

        I did, but it was on the left side. Get it checked out ,as my swelling turned out to be an infection. It has been almost 3 months and I am still on antibiotics. I still need surg. to put a plate over the hole.

      • Kathleen says:

        I had a left lobe crainotomy back in Dec. June 16 will make 6 mos.. I have been seizure free, the reason for the surgery, but my head burns constantly. I am concerned that this has not subsided and my scull feels sunken in around the incision. Does this make sense?

    • Kathleen says:

      I feel the same way! I’am 6 mos into mine and other than the burning sensation around the incision, I am feeling like a whole person again

  6. Michael D. Waltz says:

    I had a tumor removed from my right frontal lobe two months ago. I am still leaking spinal fluid. My forehead looks like a balloon. Is this normal?

    • Donna Hill says:

      Did you get that checked out? Just reading on March 29th… I wouldn’t know, but it doesn’t sound right to me.

  7. Natasha Biddle says:

    Hi, just wondering if anyone knows if your skull re-fuses back together after surgery? I am four months after my surgery. I have horses and I need to put a riding hat on. I have plates and screws and one of them is directly on my forehead where the hat would fit. My concern is if I was to fall off, would the riding hat have a detrimental effect, pushing against the plate and screws on my forehead? If the skull re-fuses, how long does it take please? Thank you

    • Sue says:

      I had my frontal surgery 3 yrs ago had infection the first time then removed my frontal bone flap for 18 months and i had to wear helmet its not easy it heavy itchy and my forehead is sunken. When i had a titanium replacement a year ago i was advised to be alert of my head as my mesh is visible thin in my skin that is very delicate that the neuros would says its a big no to be cut again. Which on my part i think i will not survive it. As i had multiple head surgeries gall bladder and other issues after all those surgeries i had severe bursitis that i cant lift my arms normally. So i guess what i can say is that give yourself a break and dont push yourself to be what you are before. Lucky that we survive the ordeal. All the best. Sue

    • Kathleen says:

      My skull is primarily in the same condition as yours. My problem is it still burns constantly and my glasses Africa tells it as well. I had my surgery 6 months ago and I’am considering lazier surgery to elucidate the pain that I think will take awhile to heal. The glasses are not helping the healing process. Good luck!

  8. Sarah says:

    Well said! I’m 8 years of having a 4-inch titanium plate with 3 screws. One year into having it done, I still had difficulty with my jaw opening to eat. Right after surgery, I had to pinch food because chewing was cumbersome. Trying to blow dry my hair on plate side causes my scalp to burn. Went to Disney World, rode a ride and caused one screw to pop out. lol SERIOUSLY! Migraines like crazy, ended up having my body fight the cauterized artery (AMV), and now struggle with Pseudotumor Cerebri. I was having spinal taps every month, then moved to occipital nerve blocks which could last up to 2 months. Finally, after exhausting all meds and conservative treatments, I went for Occipital Nerve Decompression. It helped tremendously, however, I’m 3 years post op on it–no feeling in back of neck, on 1 shoulder, and can’t bend neck down like I used to.

    • Sarah says:

      I failed to mention I had a crainontomy on Right Temporal Parietal area for an AVM

      • Anonymous says:

        How big was the AVM? I ask because my sister has a large one at the base of her skull, and no neurologist will touch it. Her pulse can be heard in her head constantly.

      • Linda says:

        My twin sister has the exact situation with an AVM . located in the same place and also hears her pulse constantly. She has been seen by many neuros and they all say that it is inoperable

  9. Anonymous says:

    I just had craniotomy number two 4 weeks ago yesterday for the removal of a benign tumor that grew back 5 years after my first craniotomy. I am lucky and happy to say I had no issues other than a provoked (lack of sleep, not on meds, and of course that little thing called brain surgery) full on seizure the day after surgery. I had never had one before and I am nervous about having another even though I am on meds, haven’t had one since the surgery and I have been given the ok to drive by my neurosurgeon. I think it is just a psychological thing but was curious if anyone else obsesses over this…I am going back to work next Tuesday and am slightly worried about it. I am feeling better every day but still have days when I feel on edge that I will have a seizure…I am pretty familiar with all the other side effects everyone else is talking about and with this being my 2nd, can assure you it does get better. With that being said, even though I have gone through this before the nervousness doesn’t just go away. I still worry about lifting too much, sneezing, and all those other fun things. I am stressed about sneezing this morning and now have a worse than normal headache…yes, I know, silly…as if its unusual to have a headache after a piece of my head was removed then put back with screws… Again, I feel extremely fortunate for my situation…I know it could be so much worse so I am not complaining…just wondering about others experiences!

    • Kathleen says:

      Having read your experience, I too have gone back to work after four months and have been given permission to drive. Dec. 16, 2016 I had a left lobe crainotomy for seizures and have not had a seizure since. Yet I still have the burning sensation every day. I am 6 months post op.

  10. Anonymous says:

    I had a craniotomy in Dec. 2016, and am going into my fifth mo. of healing. I’am glad to have come across this information. All the issues mentioned I have gone through and your story confirms a successful heal. I have been concerned with the pain around the incision and now know it will subside with time. Thank you for sharing

    • Kathleen says:

      Your story is so similar to mine, had my surgery 6 mos. ago and all is well except the constant burning around my insicion. Your healing process has given me hope! Thanks

  11. Kathleen says:

    I am having some difficulties that I trust will subside soon. The most important thing I must say is I am seizure free since the surgery!

  12. Harrison says:

    Hi, thanks for this I had a large portion of skull removed around 6-7 months ago. I’m currently waiting for a date to have my plate put in. What should I expect after the operation? Thanks

    • joebike2013 says:

      That is just about the time frame I had for my prosthetic ( titanium). My surgery went well and I was pleasantly surprised that post op I had no dizziness at all. This was my 3rd craniotomy for the same injury. After the initial surgery (with my own skull flap replaced) I contracted a MRSA infection in the hospital requiring an emergency surgery to remove the infected bone. Seven months later the 3rd surgery closed things up though I still needed months of IV antibiotics.

      Again the prosthetic replacement procedure went very well and I am now 3 1/2 years post surgery with no ill effects ( other than a slightly lumpy skull!).

      Good luck

  13. Diane says:

    Hello ,I have been reading these posts and it helps to know that lots of things are the same for most on here .I had posterially / superiorially frontal lobe tumor removed . Since stopping steroids I feel I have very little energy and get light headed often. After I got back to the ward my left arm was hanging and while trying to get it working it seems it may not get back to normal.. any one know if thisis some thing that improves with time ? . Diane

  14. Anonymous says:

    I develope phantom pain pain/ itch

    pitches like a streaker in an insulation factory.
    Need help to stop
    The itch and protect it from coming b
    Ack

  15. Anonymous says:

    I had a craniotomy bypass surgery for moyamoya disease. I had the right side of my brain done first and the healing and scar have been great. I got the left side done recently and the incision seemed a little more inflamed and i also have fluid which i just have to wait and hope it absorbs quickly. I feel like the fluid seeps threw the incision all day a little bit. I feel like the headaches are bad because of the fluid. My first surgery the headaches subsided very quickly. This time around I wake with headaches everyday before i sleep i take a headache pill because I will wake up from the pain if I don’t take something

  16. BretX says:

    I see your website needs some fresh content. Writing manually takes a lot
    of time, but there is tool for this boring task, search for:
    unlimited content Wrastain’s tools

  17. Kathleen says:

    Thank you for the interesting story, I can relate to all you experience. I had my left lobe crainotomy in Dec. and have had minor issues with the healing process. Happy healing!

  18. Tiffany says:

    Thank you very much for this article. I had the cranioplasty done in May 2017. They put a 3 D engineered plastic bone after craniotomy in march 2016. I have these large dandruff like stuff always make my scalp itchy and I still feel the numbness and itchyness not so much on my incision rather on the scalp where they lefties it off. Sometimes I get these sharp pain in my heads. They come and go. They don’t usually last long. I really hope I’ll heal completely and be healthy. I have another check up of the AVM in September and seeing my surgeons next week.

  19. 86Adrian says:

    I have noticed you don’t monetize your blog, don’t waste your traffic, you can earn extra bucks every month because
    you’ve got high quality content. If you want to know how to make
    extra money, search for: best adsense alternative Wrastain’s tools

  20. Anonymous says:

    I am 3 Years post op after having my 4th neurosurgery. I have have the nerve twitches and deep throbs. Very short and quick, however.

  21. BARBARA ANN WEAVER says:

    4 mths out post surgery from subdural bleed .Having issues when I do activity or read get lightheaded ,also forgetting to be able to name objects or names,,saw md thinks it could be seizures or maybe TIAs, Do not sleep at night even though being tired .headaches come and go.I live alone and support miyself Try to stay positive but this stinks! My nursing career is at stake, and applying for disability stinks for I think they feel I am making it up. The worse part is that no one really knows what caused this , no head injury,When will I get better?.

    • Bobbi says:

      I’m 4 yrs post bi frontal crainiotomy on Nov 21st. Just had my my 2nd hospitalization for syncope (with no warning). And still go to Speech Therapy for memory issues. I also live alone, my kids are grown and out of the house. Taking an anti seizure med (because they can’t rule that out) but it also helps withs migraines. I had to go the disability route, simple tasks take me so much longer then they used to. I don’t want to sound like things won’t get any better. I am better then 3 yrs ago. But I wonder if I will ever be the “old me” again. Be patient, stress doesn’t help. I do cognition exercises daily, even if its just simple word association. I also found a great therapist I see weekly, just to help me work through all of confusion, anger etc. I feel.
      I don’t know if any of this helped, but your not alone. I wish you all the best.

      • BARBARA ANN WEAVER says:

        Thanks,no.incomecoming.

      • Anonymous says:

        Thank you for responding to me it does it it becomes discouraging when you’re unable to work yet and your disability check hasn’t been in the mail yet it’s been 4 months since I’ve been at work and now they told me that my job is gone what else and no one to talk to but thanks for listening

  22. Bevwrly Brewer says:

    Thanks im having sime of the symptom now driving me crazy checking other site

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s