All Journal Entries Journals

Life after brain tumor surgery

Nov 19, 2008 - 31 comments
Tags:

brain tumors

,

surgerys

,

dizzy

,

head

,

Headache

,

Pain



Im sorry  for not getting back to all of you I had a bad week. I was referred to a new Dr as mine was retiring and this Dr doesnt believe in Narcotics so I was taken off the vicodin--cold turkey. this Dr would not even give me enough to taper off. The only thing that works for the pain but what was worse was the withdrawls for 3 days. Needless to say I am seeing a new Dr this week.
To me there is a diffference between head pain where your whole head hurts to touch and a 24/7 headache (sometimes cluster headaches). I dont know what to say about recovery time abd what to expect. I wasnt told anything so I am learning as I go. Sometimes my speech is either slow (when I cant remember the words) or I stammer. I cant concentrate, and still get dizzy or off balance.
I cant walk toofast for fear of falling over. I havent slept on my left side in 6 mos because the pressure makes my scar or head hurt (i do have a plate also).I have to write down everything so I wont forget. sometimes I see things all scrambled and numbers, counting cash is very hard for me. People seem to think IM OK they say you seem pretty sharp, I think to myself because I am responsive and not drooling they think Im OK. I cry alot mostly out of frustration but every day I know I am and will get better - just believe, and I hope this helps most of your questions.you know where to find me if you have questions - sorry this was so long guess I need to vent also.

Comments
Post a Comment
Avatar_f_tn
by HelpMe23777, Nov 20, 2008
Hey, I am sorry you have to deal with all of this. That doctor that doesn't believe in narcotics and wouldn't even give you enough to taper off doesn't seem like a good doc, he could have at least let you taper. Hopefully your new doc better suits your needs. If you need to talk, or vent somemore I am here to listen ok? Take care and I hope you feel better.

Michelle

327385_tn?1378364331
by brainpain, Nov 20, 2008
i know how you feel. i had the crainotomy in 06,22mm pit tumor.i have daily headaches and get migraines so bad about 3 times month. my head hurts to the point my left side hurts to the touch for about a week. have you found out why your head hurts to the touch? i have asked so many docs and never get answers. i have screws in my head and i can feel one and a plate to.i went threw the memory loss and frustration and dizzyness and just plan mad at the world for about a 11/2. i would call things the wrong things. but it did get better with time. i still feel alot of pressure and i have a spot on my scar that stays tender and ozzes sometimes. i went threw the same thing ,because i looked ok there wasent anything wrong,. i felt alone and cryed alot to. i have been to neuros and they wont give me even 5min and leave full of tears. i havent got any help with my headaches but told if it gets to bad go to the er. the only thing helped me was vicodin and i woul save them back for the big ones.i have  the nasil spray zomig,it helps but not long. does you eye and temple ever swell? mine does and then my head is so sore i cant wash or hardly brush my hair for a week or more. i have asked my headache doc about having the cluster migraines and she said that was a mans headache. keep you head up and take care of yourself. i wanted to share my story with you . we are going threw the same thing.

541953_tn?1262589826
by scaredmom330, Nov 20, 2008
I don't have a brain tumor but have chiara malformation, my brain stem is too long and my brain sit on it instead of floating around, I am telling you this because I get migraines from it and suffered a headache everyday for 2 years. it is so frustrating dealing with new doctors. They seem to think you don't need the medication just to survive.  I end up in the hospital every year at about the same time to have spinal fluid drained off. I am now on mscotin for the pain, which I hate the way it makes me feel. sorry will get off my soap box just wanted to share with you and let you know I understand how you feel. please pm me if you want to talk.


Hugs
Karen

Avatar_n_tn
by kathleen2boyz, Dec 06, 2008
i had craniotomy march 2007.  titanium plates and screws.  my head hurts 24/7 and sometimes the pain worsens to the point of vomitting.  narcotics do nothing for the pain.  i am fatigued even after 8 hours of sleep.  but sleep is difficult because it hurts to lay my head down.  i have had xrays ct scans mri's bonescan--all "normal" for post craniotomy.  doctors wish me well and tell me good luck as they walk away.  one neuro actually commented in his report that he thought i was "unstable".  nice.  through my journey of research i believe my body is rejecting the titanium.  an allergy? i don't know.  what i do know is that the source of all this leads to the plates and screws.  the swelling the red blotching and sometime scabbing the pain all stem from the areas of plates and screws.  since my skull has healed and boneflap has fused i am having the titanium removed.  i hate the idea of having my head shaved and my scar reopened and post surgical pain but i can not go on living the way i currently am.

Avatar_n_tn
by jaffer123, Jan 31, 2009
Hello - I just ran across your posts.. I can totally relate to what you are all going thru and am really surprised to see other people with such a similar problem.  I am sorry that you are all going thru this.
I had a craniotomy 3 years ago for a brain tumor -  the incision is above my right temple.  About 2 years ago I started to get horrible shooting pain right above my right eye.  Sometimes I cannot even touch my skin there it hurts SO much.  If I touch my skin it is soo painful.  It can feel like someone is either stabbing me in the temple, or sometimes as if someone is trying to pull a piece of string out of my head.  I can also feel the mesh and screws.    I went to a neurologist and he told me it was a migraine.  My husband swears that it is from the surgery.   I feel like it must be as well. I never had this type of pain in my life.  

Once the headaches start - it can last for days where if I touch my eyes I get a sharp pain. or if I smile or make a quick facial expression. Like squint if it is too sunny out.   It is really horrible - I almost cannot function when it starts up.  I have to sit there and make no expressions.  

All I am doing now is taking some left over vicodin (which helps but I think that is just because it is a narcostic).  I am going to call the neurologist next week again to see what else can be done.

I am curious about allergy to the titanium?    Sometimes I think - if I could just use botox to freeze that part of my head when they start up?  Has anyone given you any ideas on how to treat it?




Avatar_n_tn
by debbiej701, Sep 17, 2009
I had surgery in Sept 08 for trigeminal neuralgia.  It's called a Microvascular Decompression or MVD.  The incision starts behind my right ear and goes just a little over the top of it.  Not a long incision, but the pain is starting.  It's actually sore, not a nerve type of pain as with the neuralgia.  If I rub it, it hurts.  Sometimes it even hurts to comb my hair.Hard to sleep on that side sometimes.  Sometimes I get shooting pains on that side of my head too.  

I'm thinking it's the titanium also.  I was just thinking that all on my own until I saw these posts about the same thing.  Trying to find a way to get relief too.  

Avatar_n_tn
by nymeria, Nov 25, 2009
My daughter had a craniotomy/ left temporal lobectomy surgery on 1/27/09. She has less severe seizures less often now, so that is great.

Unfortunately, in June, the pain began. She has stabbing head pains which stab (like a pulse?) for 1-3 minutes at a time, ALL DAY AND NIGHT. When it's not stabbing, it just aches. We're going on what, 6 months of head pain now?!  The drs say they've never had a patient report this!? Sounds like it's more common than we thought...Has anyone found any relief yet? Is there a name for this?

Any information is GREATLY appreciated.



1393751_tn?1280200858
by Maddcap, Jul 26, 2010
  I had a lobectomy on the left temporal lobe in March of 2000.  Ever since about the summer of 2002 these headaches are getting worse and worse.  I have researched everything and tried it all but the most encouragement I get is one from God and my family and two, reading these posts knowing I am not alone.  I had grand malls quite often pre-opp, now I don't, but these headaches are kicking my tale.  Nonstop, 24/7 like a volume that goes up and down constant.  Sometimes I can work and ignore but sometimes I go home have a drink and take a narcotic just to put me in a zone or knock me out for a few hours.  Liquor, vicadin, marijuana, none of these even touch my headache pain. I have and incredible wife and kids that love me and help, but I cannot do these for another 30 years.  I am 34 and want answers.  You name a test or procedure and I have probably done it.  I am open for suggestions.

Avatar_n_tn
by grannyg8754, Aug 31, 2010
I'm 56 but 1997 Dr. found a Pituitary Tumor. Went to so many Dr.s over the years even Mayo Clinic said it was nothing. Then 2 yrs ago started intermittant dizzy spells and left eye vision disturbances.Aug '09 finally found a neurosurgeon to take it out last Sept.He miss diagnosed me, shoves a VP shunt back'n forth in my brain and I have a stroke! Found a new neurosurgeon at Barrows Neuro in Phoenix who said all this should have never happened and is taking out the shunt and retesting my CSF pressure.He'll put shunt in my back if he finds I really need one. The first surgeon dropped me in February!! I keep having episodes terrible dehibilitating; lose control of my left side and it get all numb and can't walk or speak well;get very clumsy.I was an office manager at a Dr.ofc for 5 yr. & 9 months before the first surgery and now having a hard time getting my disability. My PCP told my husband the other day "she's clearly disabled"!!But he won't write the same comments to the disability board. New surgeries sched. Sept. 14 & 16th...

Avatar_n_tn
by Livingafter23, Oct 02, 2010
This for for the person who wrote Life after brain tumor surgery, I also had a brain tumor about 18 year old ago. I have headachs just about everyday, back, arm, and leg pain. Sometimes it's also hard for me to count cash, but I really don't tell people that, it's kind of hard telling people that. My hearing is bad as well as my eyes. Finishing school was real hard but I did it.

Avatar_n_tn
by beth7439, Oct 19, 2010
I had a meningioma removed 02/22/10.  I have pain in the left ear and behind it.  I had a craniectomy.  The place where my skull is depressed is very tender or even painful to the touch.  I was told it was scalp nerves.  I am beginning to wonder.  Sometimes the pain is unbearable.  I have not been given anything for the pain.  I took Vicodin for the first couple of weeks after surgery but nothing since.  Sometimes the pain is as if someone has a knive going through my ear into my head.  What should I do?

Avatar_n_tn
by tiredofpain2006, Jan 17, 2011
wow, so glad i 'm not the only one; was recently dianogosed w Meniere's disease following a meninigioma removed 4 years ago.  migraines 3-4 times a month. my skull hurts so badly in the cold, i sometimes have to wear hats indoors. NOTHING helps. my scalp was hurts to the touch, can't sleep on the surgical side and the vertigo is unbearable. just trying to survive each day without a vertigo attack or migraine. 1 day at a time. on days that the pain is less , I thank God.  Yes, People say ,"oh u look good, ur fine" if they only knew. PAIN every day. No sense complaining to people, then u'd find urself standing alone.
Going to a specialist for Meniere's ,hopefully more answers that questions.

1981170_tn?1326303440
by Debbieaz, Jan 11, 2012
Hi I had a shunt put in in July 2010 & my brain tumor (Meninigomia) removal was in Nov. 2010.  I ahv hed issues with my eyes  I see double but also mt left side is a little numb & my leg is very ainful when walking (which I just dont understand)  I have told the drs. but they said that side is weaker so the oxygen doesnt get there like the rest of my body  Just wondering if any of u have the same issues

Avatar_n_tn
by taz1949, Feb 02, 2012
Taz1949 February 2, 2012
I too, had a tumor taken out on May 25, 2010.  Nobody told me about the hell I was about to go through.  All this time, all they've been saying, is how great I'm doing.  I get pains so strong and so fast, it's like someone has just rammed a lance through my head.  I have tears rolling down my cheeks before I even realize that I'm crying.  Sometimes it feels like a circle saw going through my head from back to front, via my temple and left eye.  My eyesight will up and get blury, my arms and hands will go numb, I get vertigo, dizzy and shakey.  I can't remember what I'm doing, let alone where I'm going or why.  I can't remember simple words when I'm talking and that makes me feel stupid.  My head will swell up with the pain and my skin feels so tight and tender,I can't touch it, without adding to the pain.  I have one spot that is always tender and painfull.  I have too many days when it hurts just to move my hair back and forth, let alone comb it.  And then I have times when the left side of my head will just fire up like a furnace and the whole left side of my head will be in unreal pain.  I have Vicodin, for my back-I also have degenerative disk disease, but I end up using that for my head.  I'm very lucky in that respect.  But it's not enough.  Not by a long shot.  So, I finally listened to friends and family, and have applied(and been accepted) for medical marijuana.  With all my heart, I hope this works.  If it does, I will let you know.  I stumbled across this page,and I want you to know that I just sat here and cried, because I thought this was all just me and that I was all alone in this.  Even my husband, was supprised at how many people were going through this.  The Drs. don't tell you anything.  But God Bless all of you, and I hope you find your way through this.  Whatever way that may be.  And thank you for sharing this with the rest of us.  And one more thing, I am also going through herb books, to see if there's some help there.  One herb or a combination of more than one.

1981170_tn?1326303440
by Debbieaz, Feb 06, 2012
My surgery was 22 hrs. long, well what I didnt mention is the tumor was so large & wrapped around my facial nerves, they werent able to get it all, so my MRI is coming up on Sat. Feb. 11.  I have been going for these every 6 mths. to make sure it doesnt grow back.   I dont know how long I have to do this.  My ear rings all the time too.  they had to go thru  my ear canal, so I am permantly deaf in my right ear & I was told a hearing aid would be useless.  I would have to have a transplant in my ear which I wont do. enough is enough.

Avatar_f_tn
by tawnie75, Aug 08, 2012
I can relate so much to you all. I myself had a terrible accident on a scooter. I hit the ground do hard my jaw bone broke...but only on the right side. The left side of my jaw did not break but dislocated into my skull. Shattering my skull from the inside. Luckily my jaw was about .5 millimeters from my brain and did not cause immediate death on impact. Doctors had never seen this before and had to call in surgeons pit of state to come up with a stratigy for what they could do to help me.
30% chance of making it out of surgery. Well, here I am writing this. I now have 3 titanium plates, and screws right by my left temple. I feel all of your pain. I have headaches 24/7 myself. This has been going on since 03. Memory problems I to have to write things down.(even the smallest of things I forget) I have severe migraines at least 3 times a month. Those have improved through the years. Right after the accident I had up to 9 a month. I get dizzy and stumble alot too. Light bothers me very much and so does temperature. I would love to say it gets better but some times it doesn't seem like much of an improvement. I used to love reading books. It now is a bother for me to pick up a book. I forget what I just read. I haven't found a specialist who seems to know muc about my type of injury. Or is even caring enough to listen. I feel shewd aaway by all but my family practice Dr. And although he is great. He doesn't deal with these types of injuries. But he's great for a cold or the flu. I feel very misunderstood when people look at me (the scars are down my forehead on the side through my hair line and down my ear) they see no scars unless they look very close. They seem to think "everything is fine" nut they don't have to try to remember such things as the name of that thing you eat cereal with.....oh yeah a spoon!  It seems as if words get stuck between my brain and my mouth. I tend to trip over my tongue alot. And forget things. People can be cruel because they see a pretty lady without scars and think everything is fine. And i must just be an aurhead. But they are wrong....everything is not ok on the inside. It makes me cry to. I get so very frustrated! And the headaches....o man do those hurt. I as of this moment an recovering from one of the worse ones yet. Had a CT scan and spinal tap. Now I have a spinal puncture head ache but at least that relived by lying down. I don't know what caused that headache itself. But it was much more intense then ly normal migraine. That's why I am on the internet. Trying to figure. It out. Does anyone know what could cause this? The pain was localized to my plate and screw area and felt like I was being stabbed. Any web sites or help you all might have I would be happy to hear it. Thank you.

Avatar_n_tn
by Zisselhinda, Aug 30, 2012
I am sad to see that there are so many other people going through this. I am 22 years old and have had brain surgery three times. I was born with a beneign brain tumor that caused petite mal seizures and had a right temporal lobectomy at age 5. This fixed the problem and I was fine until age 16 when I started having pure amnestic seizures and hallucinations, very unpleasant things that haunted me. The seizures are memory lapses only. I will forget any time between five seconds and the last time that I had deep sleep. I have determined that if I don't sleep six hours, I might forget more than one day. This is fun of course. I constantly have no idea what day of the week it is or what I have done throughout the day. I tend to spend my day crocheting because the amount my project has grown since I last remember it from the seizure shows very clearly the amount of time that has been forgotten. I have been making my way through school and am in community college, learning American Sign Language. I somehow find it way more comfortable to speak in sign than speaking aloud. I hope I can improve enough to work with deaf children. I can completely function through a seizure. I can continue playing an instrument or driving a car through a seizure. After starting at Standford and finally ending up at UCSF, I was given two surgeries at age 19. First, they put a grid of electrodes across my right side, and drilled a hole into the left side to insert an electrode for a control. Watching/controlling my brain waves was cool. They then left me for a week, and went back in to remove the electrodes and a piece of scar tissue that might have been causing the problem. The surgeries fixed the hallucinations, but did not fix the memory lapse seizures. These second two surgeries left me with SUPER intense pain. Along the backward question mark on the right side of my head, there are multiple places that have spurts of pain that feels like someone is stabbing a knife through my head at my pulse or a multiple of my pulse. Sometimes it feels like someone is stabbing me from outside, and sometimes like they are inside trying to escape. I also have the feeling that someone is pulling a string out of my head. I find pulling on my hair to not lessen the pain, but spread it to not be quite as direct. The pain last between 2 seconds and 10 minutes. Some day I have very little pain, but most days, I spend the day in pain, off and on. I have very recently been to a plastic surgeon who touch my head like no one else seemed to, and made me melt in tons of stabbing pain. When this happened, he said "there is something there." I have now been told that there are titanium plates in the places that I can point to that have pain that can bring me to the floor. I have found that acupuncture is a HUGE relief. The second he puts a needle in the right place in my right hand or left foot, the pain stops. He called me a sensitive responder, 1 out of every 10,000 people. I can completely trace the line of how the pin is stopping the pain from my hand or foot to head. I have also found that runners high completely stops the pain. It used to take 17 to 18 miles of running to get runners high, but now that I am more in shape, I get it after 3 or 4 miles. I tend to play tennis, go to martial arts training, and/or run 2 to 12 miles per day, or night, if I can't sleep. Marijuana, I have found, doesn't really help the level of pain, but the amount of time it hurts.
This pain is different than the pain in the place that my jaw was cut through. I hope they are related because I will be getting the plates removed very soon. The jaw has times it is stabbing, but also more like a hammer hitting it. Acupuncture is incredible relief for this too. I have sorta decided that eating is really worth the pain and have lost about 30 lbs. I have tried many of the different seizure meds, which didn't work, and refuse to take hard core pain killers. I will let you all know what it is like when the plates are removed. Happy to answer any question I can to help someone else who is suffering too.

Avatar_n_tn
by Unbeleeevable, Dec 13, 2012
My husband had a mass removed from his right temple, they put in a titanium plate/screws..he complains none of the pain pills help not even the morphine given while hospitalized..he had the staples removed a couple of days ago, but no post op CT or MRI, his DR who scheduled the appt. wasn't there and another doctor refused to see him, so a resident DR who was present during surgery spoke with him, but all they did was take the staples out, and said his DR would call to schedule an appt, I'm not holding my breath..today he is in a lot of pain, he said his whole head hurts and feels cold where the plate is..I've given him 4mg of dillaudid, he ate and now is sitting alone away from our 3 yr old twin boys who don't understand Papi's head hurts and they need to be quiet. I think we will be making another trip to the ER, I don't know what to do for him..and I am worried bc he has not received an MRI or CT since surgery, I thought that's routine. & although the staple are out, I don't know that he should be lifting things, he is not the type to lay around and do nothing, he keeps telling me he wants to go back to work..it's Christmas time and we have no money to buy our children anything and the hospital bills keep rolling in, he has no insurance whatsoever and is ineligible for any type of medicade..I feel really sad and helpless, I don't know what to do for him..surprisingly neuro just called and set an appt for 6 weeks from now, I told them that he's experiencing a high level of pain and his head feels cold and they(probably a secretary) said that's unheard of, that he should only have a slight headache and asked well is he not taking the pain meds and I told her yes but the pain meds aren't working..I asked should I take him to the ER and she said no that's not necessary X2, I said well he said his pain is at a 10 and she said yes take him that he should not be in that much pain. I just called his brother to ask if he would sit with the kids while I take him to the ER..this all seems so surreal my husband was perfectly healthy a month ago.

Avatar_n_tn
by acny, Dec 27, 2012
i had a craniotomy in 2005. Ever since i have been constantly aware of the presence of plates and screws, i feel like i am wearing a hat I have a large indentation and one of the screw is obvious. I have 4 plates with 7 screws each as 1/4 of my skull was lifted due to an excessively bleeding subdural hematoma. head pain occurs every day, worse when it is cold i take neurontin to manage it along with vimpat for the seizure disorder i now have. Some grand mals but 'occurrences' or petit mals when i am asleep(24 hour E E G) and sometimes during the day when i seem to lose time. I try to work but began to realize i was having these and making mistakes.
I am regularly exhausted which i put down to medication as i also take Klonopin for anxiety attacks, It is very difficult at times and i panic. I have an awareness of time management i never had before- had been warned about this. It took me 4 years to accept things would be different but i do my best to get on with it. Having cut back my lifestyle so much I am beginning to realize i may have to further. I went back to work at a new job 2 weeks after being released from 5 1/2 weeks in hospital, seizure the first day,  then started again as a full time consultant with 2 other companies. But i had to be honest with clients and realized it was beyond me to give the 11/seven sometimes expected and i could not be traveling to asia.During that time i had another episode when i must have fallen on my head and had another bleed, hospital for 2 weeks and home for two weeks Now I consult when i can get work and regarded myself at 50 as semi retired. Almost like a 12 step program you take one day at a time and never expect things would be as they were before. It is hard to accept for a professional who has worked 30 years in his field but then I'd rather live than fall and have a third hematoma.
I get regular CT scans as i feel things have moved, but i never bring it up- i just forget get on, but it scares me almost every day

Avatar_n_tn
by acny, Dec 27, 2012
one other thing, my metal is titanium too, also i found to manage the screaching head pain was oxycodone but i cut it out after related surgery on my arm and realized how addictive that it was. I went to the ER once with such bad pain in my head they gave me just one! and i had to see the neurosurgeon the following day who i knew was concerned about my growing dependence.

Avatar_n_tn
by Wiccanvix, Jan 07, 2013
This is amazing. I feel as if I was the only one who is still suffering from surgery. I diagnosed with glioma removed back in 2010. I cannot lay on my right side because it hurts when I get up in the morning and if I do I have to set up a pillow just right. I deal with the pain on a daily basis the smaller pain does not bother me, but there are times when it feels like bone pain where the plates and screws are. The doctors said there is no way I could still have been. I guess they never had the experience of what I did.

Avatar_n_tn
by 3839ferg, Feb 01, 2013
Hello to all I read forum but hadn't responsed. I hoped everyone was exaggerating the pain or that since i have a HUGE history of pain problems it wouldn't be so bad for me. The surgery March 2012  removed a frontal tumor was worse than my worst nightmares/fears. The MD didn't believe much in pain relief. I have A 2 inch hole in my head and two bifold (at least) 4 inch plates. The pain   never ends. All of you should check with a good pain management physician. Ultram (Tramadol) is a mild analgesic but contains properties that make it work better on nerve pain (most of which we have) than Vicodan. Nothing is better than the oxycodone but no one will prescribe it, it is addictive, and I can't even get it on black market for emergencies. I also have prescribed pain rubs which are made to interupt pain nerve transmission which work a little but mostly i live on ice packs Any bumping (like walking at the mall) or riding in a car set it off.
I am an RN and yesterday (as I was having bilateral breast biopsies) the jolts of head pain made me jump. the screws and plates are  actually loosening so I am really in fear of repeated surgery.
TRY TO FIND PAIN MANAGEMENT MD as there are such things as nerve blocks with might help some of you. God Bless you all.

Avatar_n_tn
by shmell1980, Feb 04, 2013
In 1996 had brain tumor removed. Was opened up from Neck to top of skull. Lots a little screws to put it back together. I can remember In 3 days after that surgery I was just fine. No ache or pains. Now fall 2012 had lots of pain everywhere. They found a large cyst in the location I had the tumor 17yr before. Now Just had surgery 6 days ago. they opened up the same spot as 17yrs ago. surgery relieved all the pain I had. But know ,I'm foggy, have severe pain around the scare and have a tin/ metal feeling head that aches. non stop.. I feel for all you, this *****. You all tell me to shut it, probably. Its been one week.  MRI is clean, Docs swear it will go away in about 4 weeks.
Can anyone shed some happy lite on this subject.

Now I seen someone mention they were get there plates and screw removed, how long do you have to wait. before the skull heals completely?

Avatar_f_tn
by Melboy68, May 04, 2013
It is nice to realize that I am not alone- like I thought I was after brain tumor craniotomy. Everyone has posted there problems- but has anyone found solutions? I am so tired of the constant headaches and docs assuring you that everything is ok- when it is not! The numb/tingle/ creepy crawling feelings can't be normal. Eagerly waiting for responses with solutions!!

Avatar_n_tn
by lrm100, Jun 05, 2013
Hello all,
I am post-crainiotomy for meningioma (2010), and like so many of you, acquired migraine (with aura) in place of the seizures I had before.  Especially around the surgery site, along with shooting/stabbing pain at titanium screws and plates.
The truth is that even the best neurologist (including mine at Johns Hopkins) don't really understand everything the happens in the brain after it has suffered the trauma of surgery.  I think the more of us that post consistent stories on boards such as these, the more likely these will evolve from "anectodotal" to "worthy of controlled study" and finally into the medical books.

I agree with something 3839ferg noted above--it is important to find the pain management solution that can help you.  I would, however, suggest that Tramadol is likely not the best choice for many on this board, due to its tendency to lower the seizure threshold. (I found that out the hard way, when taking it for by back pain post-crainiotomy, mydoctors attributed it with the first grand mal I'd experienced after my tumor was removed). If you are seizure-prone, you'll want to consider avoiding it.

Best of luck to you all!

L

Avatar_f_tn
by Mglez, Sep 24, 2013
Hi, my name is Martha. I had a craniotomy surgery on August 22,2013 to remove a brain tumor.  I want to share my experience with you guys and to tell you that it hasn't been easy. Some days the pain is worst than others. I had to go to the E.R One week after surgery because the pain became unbearable. I felt contractions in my head and the pills I was taking did not ease the pain what so ever. The doctors performed an MRI and everything looked normal aside from the spot where the surgery was performed. I was sent home with nothing but the headache that wouldn't go away. . One thing I do want you all to know is that with all my pain I have faith that I will get better and that we only have to ask our god to help us. you know what has helped me a lot? Prayer, and to leave everything to god.  From all my heart I share this with you. Lets have faith and believe that we will pass through this together.

Avatar_n_tn
by Dulsa, Feb 08, 2014
Hi, my name is Dawn. I had a craniotomy in May of 2005 for a meningioma. I agree that there should be a "controlled study" for those of us who suffer from such severe, debilitating pain. I think the extreme cold winter weather we are having this year is a major factor in what is causing my head to hurt so badly. I woke up at 2:30 this morning (as I often do) guessing it must real (REAL) cold out because of the severity of my head hurting...again. Sure enough...it's -15 outside! My neurologist has given me some new pain meds to try but so far it just takes the edge off. The pain is hard to describe...feels like my head is in vice with pulsing throbs throughout the skull...unlike a typical headache. Hopefully many of you know what I'm trying to describe...sometimes a heating pad alleviates some of the pain...they need to find something...very thankful for my life ...still want to enjoy much more...With prayer and faith I also believe we will get through this.


Avatar_n_tn
by charliephony, Feb 20, 2014
hi my name is arlene, i had a major stroke in 2012. i had to have a crainotomy because my brain was swelling, the pressure had to be released.however, i have my own bone put back in my head, held together by a couple of screws, but the pain is horrible, if i sneeze, cough or laugh i cant put my head down, coming up from the down position hurts, i have had a ct scan couple of months ago, everything is ok, because i was convinced something was not put back properly on my skull, like all of you i am trusting God and that in time it will get better, thank God i dont have constant headaches, i can sometimes hear like bones are cracking in my head.

Avatar_n_tn
by charliephony, Feb 20, 2014
i am so glad to have come across this page because i have been googling  trying to find answers, just trying to know if what i am experiencing is normal because i would hate to know that this is unusual and that they might have to go back in my head, still recovering from my stroke my left side is still weak, typing with one hand.

Avatar_f_tn
by imasr5r, Jun 19, 2014
after a craneotomy in January 2004 for a benign meningioma, I have been struggling with what my neurologist is calling "zingers" - sharp/shooting/stabbing pains at the site of my incision.  In the past couple of days, they have become so frequent that I have been afraid of driving, since the pain is so severe, I can't function except to throw my head back and hold the back of my head.  I am so glad I am not alone.  My screws are titanium as well.  If anyone joins a control group study for us, please include me!  I'm also a breast cancer survivor, and have been learning about an incredible link between breast cancer and brain tumors.  There is ALWAYS hope, unfortunately, sometimes it comes with pain.

Avatar_n_tn
by selarue13, Jul 12, 2014
Wow I never imagined that I would see all of these posts!! I understand and feel for all of you. I am 53 and in 2005 I had a stroke. After being in the hospital for a week and having every test  in the world they found that I had an AVM an arterial vascular malformation. Basically I had two veins pooling into one spot and they had to cut them out and rewire or I would have an. Aneurysm. After this was done I noticed that my glasses didn't fit my head and kept making behind my ear bleed so I asked the surgeon why and he said oh because that whole side of my head is titanium. Never knew that before. I guess I wouldn't  be told. I started to have seizures because of the surgery and the rewiring. I had been an Account Manager for a courier service and now it is hard for me to work with numbers and some days and can't find the words to complete my sentence at all and I cry a lot. Everyone says I look great how can there be anything wrong with me? I have these headaches just about everyday that feel like my head is in a metal trash can and someone is hitting it with a hammer. I have to grit my teeth. For the seizures I have an implant in my chest like a pacemaker that scents shocks to my brain to try to intercept the seizures. If I am tired or sick I have more seizures which makes me more tired and sick. The meds have gone around and around. Now I am on a beta blocker and Opana for pain and have been doing better than I have in many years.  Some days I stand before the mirror and ask my self if this is a day that I really need to go outside and push myself to do things because no matter how "good" we look. We can only take so much.

Post a Comment