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.
my CSF Rhinorrhea Journey 
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
thanks Donna I am almost 1 month and was wondering also when these weird feelings will go away was getting worried
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!
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.
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.
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!
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!
I’ve had four brain surgeries since 2010 but the last one I have is 3 years ago ever since then it feels like it’s a screw or something poking me every time I lay down and now there’s like three of them what that mean and it’s and I’m pretty sure I’m 100% right that my head is caving in up there while having surgery but my doctors and all them denied but I got disagree with them all my head I know what’s been there and what’s not you know hello
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
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
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 !
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
It does! Hang in there
Takes time.
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
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.
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.
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?
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.
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?
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
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?
Did you get that checked out? Just reading on March 29th… I wouldn’t know, but it doesn’t sound right to me.
That doesn’t sound right Michael. Please get that checked out as soon as possible.
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
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
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!
Hi Natasha, That was 2 years ago. How did the riding go? I m 6 mos. post op and will get on a horse for the first time this week. i can use any advice you can give me. I have a new snug helmet.
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.
I failed to mention I had a crainontomy on Right Temporal Parietal area for an AVM
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.
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
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!
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.
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
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
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!
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
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
So glad things went well and prayers with you on the hopefully last one!
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
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
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
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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!
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.
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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.
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?.
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.
Thanks,no.incomecoming.
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
Thanks im having sime of the symptom now driving me crazy checking other site
I HAVE BEEN SO DEPRESSED NOW POST-OP 1/2017 I DON’T WANT TO GO ANYWHERE OR DO ANYTHING, TALK ON THE PHONE, ETC……WHAT’S WRONG WITH ME?
I had a craniotomy non cancerous meningioma on August 8 so far my recovery is almost exactly like yours except I still have fluid (swishy type) around where they took the scull piece out my inflammatory was 7 from my last blood test 20 being severe I’m waiting for it to go away I wish it would
I will be able to drive on Feb 8 yahoo and I am glad to be still here
My bi-frontal crainiotomy was in Nov 2013 for a meningiomma. Still working on things like memory, loss of words, the “valley & dips” of the scar has changed over the years. Still have problems in hot & cold temps with the brackets and screws.
Found out in my routine yearly MRI that I have an acoustic neuroma, luckily small. But growing into my ear canal. I already have a condition that is causing me to lose hearing. I currently wear a hearing aide. Close to facial nerves & brain stem so surgery is not a great choice. I’ll be undergoing “Gamma Knife” radiation next week. They say one treatment should do it. It should slowly shrink over a period of months. I’ll have the “Halo” we all had mounted to my head again, except I’ll be awake this time. Side effects aren’t pleasant, I’m hoping for an easier time then before. No anesthesia, No stitches, no actual surgery. Has anyone had any experience with this? Would be interested in knowing how it went for you??
Continued recovery and best wishes to all & a blessed 2018!!
Hello~ I underwent a surgery for a trigeminal AVM with aneurysm on Nov. 1 2017. Today is Jan.26, 2018 and I am still numb and deaf on the left side. The surgery was a success as far as all are concerned and hopefully the numbness and deafness will diminish in time. I do experience headaches mostly later in the day as well as jabbing quick pains to my eye and nose after eating meals. If I have chatted too much during the day I find it hard to open my mouth wide enough to chew. My jaw is misaligned as a result of the surgery so that the teeth on my left side do not close together. By evening I feel some swelling around the jaw and eye area after chewing and talking. There is a constant hum in my ear as well. Is any of this normal?
I had my left lobe crainotomy one year ago Dec.2017. Slot of the symptoms you are having I evperience as well. I have the constant ringing, which I had pre surgery. The headaches have gotten better, and the numbness comes and goes. Some days are harder than others, but my physical therapist treats me at least once a month. Maybe you should seek one! Good luck the healing process takes time!
Thank you Kathleen! I do go to PT/Speech and that has been helpful. I live in rural Maine where this type of surgery is not seen very often. I had my surgery in Boston after being Lifeflighted to Brigham and Williams. My “brain attack” occurred on a Friday evening and I was take to the local hospital where CT scans revealed the AVM with aneurysms that were leaking. So that is why the Lifeflight was called. The numbness and deafness all happened during the “brain attack” not the surgery. I wish people would understand that you just don’t get over this in a hurry. The life changing stages are so difficult to go through. You are so right when you say some days are harder than others. I have days I just do not want to see or talk to anyone and would rather sleep so I do not have to deal. I was a former light smoker and I was smoke free for 10 weeks after surgery. I found an old pack of cigarettes in a jacket pocket and was having one a day for about 4 days. My husband caught me and today I am tossing out the few that are left and starting that struggle all over again. What an idiot I was to think I would not get hooked again. Thanks for reading my jibberish. Hang in there.
Congrats on tossing the Cigs! I had u surgery for woileptic seizures, that had been occurring for years. I had convulsive seizures as a child then they went dormant for years. Suffered psycho motor seizures for years that kept progressing. A small part of my brain had died and was removed. Since my crainotomy, I have been seizure free. All the after affects have been reminiscing slowly. Good luck!
I am 6 months and 1 week post op craniotomy to remove my benign meningioma and I can now drive I still have headaches not as severe and I have a real dent on the top of my forehead where they cut the scalp nearly from ear to ear I hope it fills in other than that I feel relatively normal but I guess there is always the fear of getting hit in the head I use to surf but am scared to take it up again. I am grateful to be alive. I wish everybody well.
I am 3 months post surgery for a trigeminal AVM with aneurysm. When this event happened I felt a sharp pain in my left eye and the left side of my head, face and neck went numb. The AVM had wrapped itself around the nerve. My face is still numb but my neck and back of my head on the left feel normal again. The shooting eye pain, slight swelling along the jaw line near my ear is most annoying as I cannot open my mouth very wide to brush or eat. Any movement of the mouth causes this swelling. I do not feel sick just numb and dizzy due to the deafness in my left ear. PT has helped. I am now taking oxcarbenpine for the nerve pain. It is helping somewhat so far. My dentist thinks my jaw is out of alignment. I will see an oral surgeon for this. I have an eye appt. to check my left eye and a hearing appt to see if my hearing will come back. So many issues to contend with but all doable with patience and medication. This is a rough journey to say the least. So glad we can all share our experiences. It helps me understand that some of these sensations are just part of the journey. Best wishes to all.
I’m a little late to your post but I have had four surgeries to repair my csf leak and still leak intermittently
20 surgeries in total which stemmed from a car accident where I fell asleep at the wheel omw home from work. Craniotomies, three cranioplasty procedures, etc… Im five weeks out from my last surgery. How are you doing now?
Well done Lindsey, that all sounds horrendous. I’m 11 weeks post surgery for Craniotomy for Grade 1 meningioma. I was doing really well, all the usual effects, but energy coming back and doing lots of walking and yoga and about to return to work then 2 weeks ago my wound started leaking yellow fluid. Got back to the surgeon, put on antibiotics and had area sutured. This seemed to be the answer and it dried up. Came off antibiotics and 2 weeks later same thing in area next to suture. I wonder if I’ve just overdone it with my activity (walked 7 miles one day). Another CT scan showed no infection and surgeon said no more antibiotics and come back in a weeks time unless it gets much worse. I’m feeling very tired and cold inside my body. Feel like I’ve gone back to the beginning again. Any ideas anyone? Except go back to hospital of course.
Thank you so much for sharing im heading to my 6th week. I’m so tired irritable and dizzy at times my arm mucks up cant see a neurologist until June 3 months away so seeing this info was great. Thank you
NAT
I had menongmia removed 2 years ago on right side. I still have burning sensations and pain. If I look down for long periods at an iPad or reading it makes my head hurt and burn. I still have to sleep elevated. Sleeping flat also makes head hurt. Still to this day if I pick up something to heavy I feel like water is dripping in my head. It took me a year before I even wanted to drive. I didn’t want to go anywhere . I was nervous and scared always. I gained 40 pounds and still trying to get back to normal weight . 20 more to go! I have trouble with floursent lights,they are my worst enemy. I still can’t bent completely without it hurting my head. Noise still bothers me. I have been fortunate enough to be able to stay home. I don’t know how anyone can go back to normal work after 6 to 8 weeks. Walking is my best medicine. It helps. I still have panic attacks, my glasses hurt my head also. I had an MRI last wk get results tomorrow. It is an ongoing part of life, people who can go on to normal life I applaud you! My main reason for so much input is after two years people think you should be normal, they don’t understand what our brain has gone through. Prayer and patients! I used to farm for a living, my whole life has changed, I can’t stand any vibration or shaking, I told my husband I feel like I am someone in someone else’s body. I was used to working 10 to 12 hrs a day. I am thankful for my recovery ,but it takes time and patients! My family has had to adjust also, so don’t forget it’s toll on them.Good luck to everyone on your recovery! Don’t forget to pray and thank the good lord for all things!
Take heart it may be awhile yet but I’m sure you will be all right in the long run Lynn Wade
Sent from my iPhone
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Hi Deb! I had a Grade 1 Meningioma Surgery on the left side on 8/24/2018. I never felt one ounce of pain. I was amazed at how good I felt following the surgery. Mine had bled inside of itself. They said it was the size of a large man’s fist and that I had to have had it for years. No symptoms whatsoever except 2 months prior the top of my arm went numb and started I sweating profusely. Lost my words and speech. This spell didn’t last but about 10 minutes. When it really surfaced it was bad. Vomiting, loss bladder control, couldn’t speak etc. Needless to say I was rushed by ambulance to the hospital ER. The thing that bugs me now is my scalp on that side will feel as though it is slipping. I went to my hairdresser and she even felt and heard it. Does anyone else have this? IT IS WEIRD. My hairdresser said it felt like a bubble wrap pop. Prior to this happening my scalp feels super tight and I can manipulate this with my hand. I hope someone can help with this. I worry that this isn’t normal.
I had my crainiotomy in early Dec 2017, so I am about 7 months recovered. I experienced the itch iness on the incision and the quick flashes of nerve pain, but the nerve pain is only occasional now. Mostly what worries me is that I have a large dent near my left eye, between my eye socket and my hairline. It is deep and is getting deeper. I will be seeing my surgeon next month, I just wondered if anyone else had issues with large dents? Other than that, aside from the occasional nerve pain, and sometimes not being able to come up with a word that I need, I think my head is healing okay. I am very glad I found this site, it is greatly helpful to read other’s experiences. Thankful to still be alive!
Hi there I am 10 months post craniotomy
and I do have a large dent from 2 ” above my left ear to my right ear 2″ above it is quite deep in centre of head and seems to be getting deeper I have my final consult at 12 months post in August so I will ask I think this is just a time factor thing and over much time will or I hope will close over I will let you know my results Grateful that I am alive and well
My operation was April 2016, and I have large dents, too, that seem to have gotten deeper over the months. My surgeon didn’t say too much about them last September. I am grateful to have hair to cover them — and hope that there won’t be any long-term effects.
At what point do you begin normal sleep again? I am 10 months post craniotomy and have a lemon size hole in the my right frontal lobe. Not sure if that affects my sleep issues but nothing seems to work anymore. Just want to sleep. Not sure what is going to help again. Any advice?
I too am 10 months out from AVM and aneurysm surgery. I have a kiwi size hole behind my left ear about 2 inches in toward the back of my head. It was a trigeminal AVM with aneurysm. Very difficult surgery and not many have been done. Lost my hearing on the left. face is totally numb on the left including my eye, tongue, nostril, lip chin and part of my ear. Very strange feeling. My teeth and jaw are also out of alignment due to the 12 + hour surgery to unwrap all the veins that wrapped around the 3 branches of the nerve. I have some spotty feelings in various small places on my face which give me hope. Seeing a jaw specialist in Boston ( I live in Maine) for my jaw and teeth on August 29th. Okay, now that I have somewhat explained my condition, I too have trouble sleeping and take one tylenol p.m. to help me sleep and it works. Give it a try!
Has anyone had an incident of passing out. I had an ruptured aneurysm clipped. I’m 7 weeks post op. Was taken via ambulance to hospital where I had ct scan but showed nothing. Doctors are unsure as to why it happened. Was not dehydrated, had eastern, just happened out of nowhere.
I had my 12 month check up in mid August every thing seems normal and no recurring of mengeanoma some very small shooting pain nerve reattaching but yes I have the dent from left ear to just above right ear apparently this is what happens there is no filler in the scalp to make it normal I too have hair covering it thank goodness but most of all I am well and great ful to be alive I hope everyone has good recoveries and remember to just take it easy and cruise. God bless you all
Lynn,
It’s now been a little over a year for you (5 weeks for me) have you noticed any filling/smoothing out over your scar line or is it all still very peaks & valleys like mine?
My surgery was more than three years ago, and the peaks and valleys are very pronounced. I try to be careful. I don’t want to have surgery to fix them, even if it’s possible.
9 week post surgery had forhead removed put back in loss my sense of smell but can smell funny smell like medicine nothing else but that still swollen has any one else loss there sense of smell Doctor not sure if it will ever come back but that funny smell always there can taste a little but not everything has loss some eye sight before surgery and seem to getting a lot of it back thank goodness I am very blessed
I’m sorry, my surgery was not in forehead but in front of left ear up for craniotomy. Vasculitis was left side above left ear. No loss of smell.
Surgeons and doctors were excellent here. They used titanium mini plates and screws. Finally had last 7 stitches removed yesterday after 6 weeks due to slow healing. I started chemo last week. All went well. Another check up in 2 weeks for fluid leakage inside. Forgot some words and speaking correct sentences but still good in math. Retention of simple more than 3 word sentences is a challenge for me but working through that with therapists. I ice left side of my head daily for pain.
I had a bi-frontal crainiotomy with plate removed from my forehead, put back back with titanium plates & screws. Scar goes ear to ear. For a Meningioma. I lost my sense of smell & taste. Periodically I get “phantom smells” bleach, garage, iodine etc. I was told in advance my sense of smell would be gone. But it was mostly gone already. I’m told “sense memory” is why I think I smell those things. Would be nice if it were something pleasant for a change, but never has been. That was 5 yrs ago. I sincerely hope yours returns & wish you all the best!! 🙂
Good morning. I stumbled across this site and wanted to thank everyone that has commented this in the past. I’m currently at 6 week post op and found many of your experiences beneficial.
Thank you,
Stephen
Good morning ~ I am at 1 yr. PO and still having some issues. I had a trigeminal AVM with two aneurysms and was airflighted from Maine to B&W in Boston. Spinal tap, CT-scan and MRI showed this condition. All started with severe pain and numbness to the left side of my head. Rushed to ER where debate was if I could be treated in state. Decided to ship me to Boston. Excellent care and surgical results . There are some issues that have not resolved. Numbness to left side of face/head, CFS leak – now resolved, Inability to open my mouth enough to chew, deaf on the left side – surgery for this on Dec 6th. I am fine cognitively and mentally. I do get dizzy if I bend forward and my face swells. Good luck with your recovery. It is truly a journey. We are blessed that we are still on this side of the grass. Wishing you a Merry Christmas.
Thank You so much, I had a craniotomy Dual aneurysm clipped 12/18/18 NY. Absolutely amazing how these great Dr. Nurses, and all staff do this almost daily, THANK YOU ! My TMJ hurt for 1st week, almost all gone by 3rd. week. Scar and itch flaking dry scalp causing grief using coconut oil. No dents yet……..short term memory comes and goes, pain comes and goes, off all meds except asprin, BP, cholesterol, and Tylenol. Following close thank you all.
Thank you for this great summary. I had a craniotomy in September and everything you described is exactly what I experienced. I still have some pain at the incision site and this helped give me comfort that it is the normal part of healing. Thanks again!
I had microvascular decompression for trigeminal neuralgia 3 years ago. After a week I developed meningitis and CSF. They readmitted me and inserted a lumber drain until the source of the leak could be identified. After a month in ICU, many tests, a procedure and heavy pain meds, the source of the leak was discovered. A second surgery in which fat was used to stop the leak was was required. A titanium plate was used to close the brain flap. I was left with the loss of hearing, sight and balance on my right side. I was the released to a nursing facility where I stayed for 10 days and then on to an assisted living situation for another 22 days. The headaches, numbness, fatigue, electric like feelings, and the sensations of having a huge metal plate in the back of my head never went away. I am now experiencing more pain where the titanium plate is attached to my cranium. I can feel the screws through my scalp. Apparently, they are working their way out. I have to go see the neurosurgeon to discuss my options. I am so worried that I may need to have another surgery. Has anyone else experienced this and what was one about it?
I’m sorry, you have been through quite the ordeal! Our plates and titanium screws are in different locations. Mine are in my forehead, but you can see & feel my screws if I lift my bangs. They are backing out, only way to change it I’m told is another surgery. It’s been 5 yrs they’ve essentially done the job, they could be taken out. I won’t go through anything like that again!! I deal with weather problems…if its to hot my forehead heats up, to cold it’s quite cold. Have to be careful with blow dryer. I don’t know if it would work the same for you, but I botox for Migraines. It has helped a lot with the pain in that area as well. I know they do the forehead, over both ears, neck & back of head (some), and down the traps. It lasts 3 months at a time. Maybe something to check in to? All the best to you!!
I am 5 weeks post-OP. I had a meningioma removed that was about the size of a golf ball. I really appreciated reading this because it’s all exceptionally familiar- ESPECIALLY the difficulties finding the right words, I really struggle with that and I never have before surgery. My doctor used plates, screws, and closed with no shortage of staples. Still getting headaches and random stabbing pain from the nerves which comes and goes. I still have lumps and divots in my scalp that I’d really prefer to be smoothing out more.
This was very helpful. I am 2 months post op and was wondering about everything you just touched base on. The headaches, numbness etc…. So thank you very much
I meant I am 1 month post op
Hello everyone, life update. Finally remembered I had this blog😂 well I will update quickly here and will hopefully get a post going again.
I’m alive and well, going in my 8 year anniversary. Life has settled in and I hardly notice I’m blind in one eye and had to o go through this…
Well except for one screw that hold my plate is loose and it wiggles up every once in a while and push it back down (under the skin) want to freak people out have them feel your plate and tell them to press in the lump. I is funny to see there expression. Covid 19 is in full swing around the world and I have noticed the no touch infrared scanners don’t work on my forehead. It’s funny to watch people and doctors offices think that their scanner is broken. But that’s just me I find the funny things to laugh about.
Is the blindness from the surgery?
I had a craniotomy 5 weeks ago and have experienced everything you mentioned in your blog. I vacuumed today and then had to take a nap afterwards because I was worn out! I am feeling pretty much back to normal I go back to work this week. I still have the numbness and my incision is itchy. I’m hoping my hair grows back!
i had a brain bleed on Dec 6, 2020 and had to have emergent craniotomy to drain the blood. Ended up w bilateral incisions. Still feeling weird. Everything you mentioned is happening. I still get extremely fatigued, but i am back to work.
I’ve had four brain surgeries since 2010 but the last one I have is 3 years ago ever since then it feels like it’s a screw or something poking me every time I lay down and now there’s like three of them what that mean and it’s like my head is caving in up there too