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Life after brain tumor surgery

Nov 19, 2008 - 45 comments

brain tumors











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 know where to find me if you have questions - sorry this was so long guess I need to vent also.

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Avatar universal
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.


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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.

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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.


Avatar universal
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 universal
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 universal
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 universal
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.

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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 universal
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 universal
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 universal
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 universal
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.

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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 universal
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.

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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 universal
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 universal
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 universal
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 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'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 universal
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 universal
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 universal
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 universal
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 universal
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 universal
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 universal
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!


Avatar universal
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 universal
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'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.

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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.

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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.

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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.

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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.

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by todsurvivor, Dec 05, 2014
I am very moved by your stories! My heart goes out to you all for your ongoing pain and suffering, yet, at the same time I am very inspired by your courage and perseverance.

In December 20012, I had a life-threatening, ping-pong ball sized, benign meningioma removed from my foramen magnum (the hole at the bottom of your skull where the brain stem goes through to become the spinal cord.) It was adhered to my spinal cord, vertebral artery, and dura matter, so it had to be scraped off those structures with a scalpel, putting me at risk of bleeding to death, having a stroke, being left paralyzed, having a trachiostomy, or having seizures. Addtionally, the nerve that controls my tongue was inside the tumor, so it had to be carefully protected as they resected the tumor. They think the tumor was growing there for 15 years!

Thank God for the amazingly skilled surgeon and his team who were successful in removing the tumor completely. There is a 10% chance of it regrowing, so I have annual MRIs. I am having this year's MRI next week, and I am already getting nervous about finding something.

Consequently, I have large titanium plate on the left back of my skull where they went in. The plate is held in place by several screws, including one behind my ear and one in the center back of my skull on the occipital prominence. My tongue is also paralyzed on the left side, which makes speech and chewing quite an effort.

For many months after surgery, the left back of my scalp was numb, except for occasional shooting burning pain that seemed to be nerve-related, as well as pain in my scalp on top of the screws. Gradually, over many months, the sensation has returned to my scalp, and the burning all but disappeared. However, the screws still cause pain in my scalp when I lie on my back or left side. I have back and hip pain that prevent me from sleeping on my back or right side very long, so I toss all night.

I contacted my neurosurgeon who is 3 hours way, and he said I couldn't possibly feel the screws because they are "too small"! How ridiculous; anyone who touches my head can feel the screws! He is "willing" to see me since no neurosurgeon in my area will touch his former surgical patient.

However, after reading your posts, I am more inclined to see a pain management specialist. I know I can't take Ultram because of another med I am on.  However, I would like to hear about other options that might help me get comfortable and sleep better. I have tried many pillows hot and cold gel packs, cold rice bags, etc. Next, I am going to research whether there is a silicone pillow insert out there I could try.

Thank you for sharing your stories with me! It is very powerful to connect with others who have experienced similarly major and traumatic brain surgeries. I can really relate to those of you who have said that you are often told that you look and seem great and/or normal. No one can see my scar or screws under my hair, and I have had enough speech therapy that people who didn't know me before do not usually notice my difficulty. However they are a constant reminder of what I went through.

Please feel free to email me at ***@****

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by AMK4200, Dec 11, 2014
God bless to All of you. We seem too be in a unique, but not wanted club. I'm a 48 yr old single mom on 2 young boys. I'm 6 months post surgery from having an acoustic neuroma removed (most of it). It left me deaf in my left ear. I'm still off work, cause I am still dizzy, headaches and get tired do quickly. Depression is huge. I get confused and fustrated so easily now. My kids are the only thing getting me through this period. It's soar like a hidden disease, you look fine on the outside, so just suck it up right? It's a lot tougher than I thought.  Thanks for letting me vent. Anne from Canada

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by wisdomword, Jan 04, 2015
OMG I CAN'T believe that I am not  alone on this  journey i am post 2009 thanking god that I am alive had a brain hemangioma in right side of cerebellum removed had it since birth I didn't find out until 40something years later after surgery pain in back of head all the time mild to severe in 2014 I can feel my surgery site bulge outward one side of back of head behind ear is bigger than other side for some take the edge off local pain relief cream use capsaicin cream I had to go to the ER to get an injection of steroid to get some relief that helps some along with narcotics but I am in pain every day in the back of skull can't hardly lay on head and don't let it turn cold inside or outside OMG I have to wear a hat inside the house but I have tremors brain fog and het extra tired all the time if I don't rest my body through out the day these symptoms get worse including my vertigo and I get really off balance on a regular basis I got to be careful how I hold my head I will fall over and I can't control it I injury myself alot from falling and being off balance I walk like I am drunk when I am tired or have any pain reliever that control or make me relaxed that ***** but we have to keep the faith and ask god for guidance and healing to get through this because other just don't understand what we are going through even when we tell them they think its not that bad because we smile but that's what keep us going and our front because the feeling is awful hang in there guy best of faith.

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by LittleMissSweetie, Aug 28, 2015
Hi :-)

I came across your posts whilst trying to find answers to my tiredness, 18 months post brain surgery to remove a 4cm benign brain tumour.  Reading all your heart wrenching, stories has reinforced how lucky I am that I only have a low level of pain and discomfort, around the incision site, when I am tired.  

I hope you are all feeling a  lot better since your last posts.  I would like to say to anyone who has been affected by 'vertigo' (my tumour was apparently pressing on my vision/balance/breathing part of my brain) following brain surgery, that two sessions of the Epley Maneuver has transformed my life.  The procedure was performed in a specialist hearing unit at my local NHS hospital. It is noninvasive and painless. They explained that the dizziness may not have been only related to the tumour but caused by little crystals, which had formed in by ear canal and were free floating. Afterwards, for about a week, I felt 'spaced out' but gradually my balance returned and with it my confidence. Prior to this, a consultant, under my surgeon, suggested I get a walking stick!  I am only 53 and never go out in anything less than 21/2" heels and full make up! I now wear heels again and although I can only go out for short periods of time, due to tiredness after working a 45hr week, the dizziness has disappeared.  The procedure is best performed at a specialist unit, rather than your GP, as it needs two trained staff to manipulate your head and position you.

Hope this helps and wishing you continued improvement in your health :-)

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by songbird_cutie, Dec 22, 2015
I'm 36, I've had a craniotomy to remove a large benign tumor a couple of years ago. Two months later i had to have two more brain surgeries due to a subdural hematoma that caused me to out of the blue slur my speech and lose sensation in various parts of my body. It was very traumatizing and caused me to have panic attacks for a while. also had depression from the anti seizure meds. luckily i was on them for only 6 months and as soon as i tapered off them i started to feel like i was waking up to life again. After a year i started feeling like my old self. i never thought i would. I'm so thankful. Now the only daily reminder of this crazy ride is the discomfort from the screws and plates on my scull. Its not so bad most of the time but each month there are at least a few days when those areas become really tender. Sleeping on my right side always gets uncomfortable after a while. It makes me wonder whats going on.. why is it still hurting after two years... why some days it's more tender than others...   but after reading everyone's stories it seems like i have it pretty good since my pain is pretty tolerable. I would say it's more of a discomfort. Small price to pay for being tumor free, i guess. Whenever i experience headaches I feel like they are mostly triggered by a knot in my neck or shoulders. It's amazing how its all connected. A massage usually does the trick. Its worth a shot. Thank you all for sharing and I wish you all the best of luck with easing your pain.

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by Beec, Jan 04, 2016
I had my craniotomy for a large plum sized benign meningioma 6 years ago.  I have screws in my head a whole bunch of divets that my hair covers.  I have experienced several horrible bouts of what i thought was vertigo during these last 6 years.  About 6 months ago an Ear Nose and throat doctor did a cat scan on my sinus's and found that the large frontal sinus directly behind my left eye, (where the tumor grew) had not completely closed ( supposed to be a closed area).  He felt that maybe it was collecting matter and that was why I was getting dizzy...not vertigo I was told.  He put me on prednisone (poison) after i told him that truly the worse part of my whole surgical procedure was the steroids..He also put me on a heavy dosage of an antibiotic.  I was on these for no more than 4 days when I took myself off of them as I was feeling worse than when I went to see him.  Now I am not sure that he was wrong about the unclosed sinus, but I definitely cannot and will not do prednisone again.  As a side note...I live is warm Florida... about three days ago I started to get a mild headache ( kind of like the ones when you need caffeine) and the nooks and crannies of my scars have been hurting.  I've been taking motrin.. My husband said that maybe it was the weather change, as we have had a cold front come through....I don't know.  I also seem to forget words.  frustrating... I'll be 60 in June....-Beth

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by Starla1234567, Jan 09, 2016
Hi I'm 34 years old
I had gotten hit over the head with a baseball bath from two punk lil kids . That does not know what life is . I ran out cause I heard them coming after my son
I'm glad it was me . N not my son , I'm going threw a lot like what if we wouldn't of known n he would of been dead on the floor. My husband saved us . He got hit as well but thank god it was his elbow n he coverdhis head . They ran after my husband came out .
This was a nightmare my life is not the same
I had a cratiotomy surgery as well with a titanium plate .
I had a seizure by the time I got in hospital n don't remember anything else until I got up after everything was over . Then I could not see out of my left eye . My brain was swollen ,I had bleeding on the brain . N broken skull .
Everyone thinks your fine once your home
Well it's the hardest thing I ever had to go threw
I suffer everyday I get seizure after seizure
Forget things can life can't bend n I'm very weak
I'm going To beat this
But family members put more stress on me n my husband n children .
I think everyone is selfish
My husband has to make a wedding for his daughter which is wonderful she's is getting married. She been with the kid I think a year . Even lived with him a while .But emitional n physical this was a bad time n he does not like it one bit he tells me all the time why why why would someone call us now . He loves his daughter n so do I .
But if I'm not better he stopping it .
Everyone else in the family think it is so crazy very selfish .
But like he says I come first right now I need to get better . We love all our children but without me how does my children n my husband live . I'm their Rock .
I'm very depressed I'm in fear of everything  I'm scared of certain people that end up looking like these kids I have a fear there going to hurt us again
The cops got them they been in jail
I hope we get our justice
My life with my husband is gone as of now
He became my caretaker but I love him to death
My kids also became my caretakers other then my kids
I don't have the same bonding like we all did
We do when I'm better it's all there still
Just gotta get better
Thanks I wish everyone health luck n happiness on here
Xo best wishes
And watch out for crazy people watch your children it's best to keep them home limit friends
Watch who they date . This girl had a boyfriend n my son seen her once n I'm hurt because of a 14 year old girl going out with an 18 year old lil boy because he's not a man in my eyes that brang a 24 year old with a bat over a girl that my son didn't even like . N he didn't even know these kids

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by Missdebz, Feb 12, 2016
Hi I'm 31 years old. I had a benign meningioma tumor taken out on January 12, 2016. As some of you know or have had that tumor it is very a very rare tumor, if anyone should get it, the age group is between 40-70 years old. I asked one of my doctors at the follow up appointment after he took out the staples, if I was going to get it again, he said he has no idea! That's a scary thought. So I will be monitored every 6 months. I found out June 2015 when I was hospitalized from bell's palsy, which the doctors then didn't know how I got that either, but we were all glad I got it because that's how we found the tumor, by taking a CT scan and mri. I was hospitalized then for 3 days. I couldn't go to work for a month and had to quit school for a semester of college. Then in December 2015 the 6 month MRI check up showed the tumor grew a little but not by much so my Dr asked me what I wanted to do at that point because it wasn't really bothering me. Since I'm young and can heal faster, do I want to take it out? I said yes. So we scheduled it. I took numerous pre op tests, including a special imaging mri on January 4, 2016. The day of the surgery, the surgeon came to me and told me devastating news that the tumor grew tremendously but thank God that I was already in the hospital about to remove it. My tumor started the size of a kidney beans to a size of golf ball that was sitting on my motor track the entire time. That goodness it never affected my eye sight or hearing though! Now I'm at home recovering until March 11, 2016.  

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by fanna07, Feb 17, 2016
Hi my name is Joanna, I am 38 years old. Almost 9 years ago I had a craniotomy performed for a tumor that had bled and I had an avm at same site (cerebellum/brain stem area). I did fine for first three years after surgery. It has been after that time I started experiencing headaches and times of confusion, disorientation, vision problems, slurred speech. I have had nerve blocks done, when that didnt work I had my greater occipital nerve on left side of head removed. I have been on numerous antidepressants, anti-seizure medications, high blood pressure medicines. right now I am feeling lost and unsure of what to do with myself. I live in pain and then I have these what I call spells of the other symptoms. It is getting harder to hold down my job and raise my 9 yer old son. If anyone is going through these same symptoms please let me know. I feel like I am going crazy.

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by rdbcoffee, Dec 21, 2016
So I just had brain surgery in July.  I just want to know when I will feel normal again.  Right now I have a head cold and the whole side of my head where I had the surgery is swollen.  I am so sick of feeling this way.  What is worse is I am so sick of dealing with people that don't get it.  That think I should be fine by now.  Just looking to talk to people that understand and have been through what I have been through.  Thanks for reading.  

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by 1Jodiegirl, Mar 05, 2017
Hi my name is Jodie I am 57 years old and had a benign meniginoma tumor that laid on balance,hearing,and facial nerves going into brain removed 3 years ago at Barrows Neurological Institute. The Drs told me they had to scrape the tumor off the 3 nerves and cut it out of the brain. They didn't think Id lose my hearing on that side but I did Im totally deaf in right ear my balance was off and continues to be off and some twitching in right side of face. After returning home 5 days after surgery I received a CHF leak where brain fluid drained out my nose. I was admitted back into ICU to have a LP shunt placed in lower back. Ive had terrible back pain and go to pain management for injections very 2-3 months  I went back to work in 6 months still balance off  walking into the walls at work. Girls joking with me watch out theres a wall there or a doorway there. I don't like pain meds but sister made me take them when i got home from hospital for a few days  My point is about 2 1/2 years later I started falling and pain in head where incision is sometimes shooting down neck  Im most the time numb on right side of face.  I fell at work and broke my dominant right little finger in which Ive had 4 surgeries on at Mayo Clinic and as i speak I have 2 pins in bone attacked to a straightening appliance called a Didget widget  but back about 9 months ago started with dizziness, vertigo, nausea, depression,panic attacks . Ive had a MRI once a year and the Surgeon said I have a piece of tumor either left or returned. Just watching it for now  My boss won't let me come back to work until Im 100% hmmm pretty sure Im not gonna ever be 100% worked 22 years for him by the way.  I know it was hard after the surgery for months but even worse when you think your through it all and symptoms start up  I walk with 2 hiking sticks and go to Vestibular therapy 2 times a week. I can't even walk my dogs my husband has to do it   Yes some days are better than others but still hard. Some people don't understand how I can still have problems I was sent to a counselor to talk about it and she understands most people are understanding. See I've had several things Aortic aneurysm 10 years ago  open heart surgery, Ive had cancer, and brain surgery and this darn hand for 1 year now Im pretty sure Ive had my share My faith in God has gotten me through a lot of this   Ive applied for SSDI  social security but was denied. Im liability to my boss from the falling aspect. I was sent to at psychologist  social security set me up with  and guess I did to well answering my questions honestly. I have a lot of imbalance and head pain and Chronic low back pain from LP shunt. Don't understand after all Im going through why they denied I am appealing it but in the meantime whats a person to do about money for a living in between workers comp and knowing if your going to get through SSDI. Ive called the surgeon to let them know about my pain in right side of head so they moved my MRI up to this coming week. Pray that it didn't grow more. Cant say Im glad to see theres other people out there like me cause I don't wish this upon anyone but to also to read I'm not alone kinda helps.  Thank You for reading any  suggestions Im open for discussion

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by Abigail36, Apr 02, 2017
Hi my name is Abigail, I am turning 37 this week and 10 weeks post crainiotomy.  It was discovered just before Christmas 2016 via an MRI scan that I had a mass/tuour on the right temporal lobe side of the brain and that it was operable which was a positive of course.
The surgeon and his team were amazing and removed or debulked the whole thing at the UCLH Queens Square London but unfortuntaley it was a Grade 3  tumourso I am currently undergoing 6 weeks radio theraphy and TMZ for 42 days with a plan for higher dose for 3 months with scans to follow.  
I feel lucky in many ways as I am still able to function using my arms, legs, just having to take a slower pace at 20mph instead of Abby 80mph. The tumour was pressing right on the Optic Nerve and thankfully I havnt lost any of my peripherall vision and after 3 weeks of fairly intense pain as you all have experienced I was able to finally rest back on the right side with plenty of cheek cusioning.  
The scar itself and my physical health in general maybe due to age has been fairly ok.  Its the emotional side that I have ups and downs with but behind closed doors with my husband in the evening and when my two munchkins are sound asleep in bed.
The tiredness and not being able to drive is the biggest thing I am trying to overcome at the moment but gernerally I am a glass half full person but being on anti seizure meds can cause mood swings so I am hoping that its only a temporary thing and having to swallow being chaperoned alot but still so grateful that hubs can bring me along to the school run which sad I know I love and can carry on as normal as possible if thats possible.
I havnt taken any pain killers since after 4 weeks post operation as yet as I think the mild steriod I am on is reducing the swelling pressure so maybe its too early post operation to tell about the pain and recovery time as I havnt even seen my Nerosurgeon post 3 month appoinment yet.
I have been experiencing stinging pains in my rght eye lid, cheek,  nostrel and numbness on the right side of my face and its slightly swollen but again something that I am just seeing how it goes day by day. I do sometimes feel dizzy and have a constant bitter taste in my mouth which isnt nice atall and when talking I always lose my train of thought. I also get confused doing what I used to do best which was multi task so I have to mentally adjust to this being the new me....
I have become more Spititual since this which runs along side my RC Faith but feel each day is a blessing and I am trying to enjoy every drop of the day even though I am ready to collapse by 7pm.  
I hope that there is more research done into Brain Tumours as When? How?and Why? are all the questions that cannot be answered and for our little ones and their futures we can move forward with the incredible research and tech that is being developed year after year along side the fantastic surgeons and their teams.
Where there is Life, there is Hope!
I know lots of posts are a while ago but would be great to hear of good recovery stories too :)

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by HannahMoll, Nov 10, 2017
Hi my name is Hannah, I am 21 and I had a benign meningioma brain tumor, the size of an orange, removed 7 months ago (April 2017). I had only been married three months before they found the tumor ( talk about marriage bootcamp). They found the tumor on April 1st and it was out on the 4th. No one told me anything about what recovery would look like or what I could expect. After reading through all of these posts I couldn't stop crying because I thought I was alone on this journey. It is a relief to know I am not the only one, but my heart goes out to everyone who is going through this hell. I live with 24/7 headaches, I complained so much that I got sick of the sound of my own voice. I can't describe my pain to anyone, they just don't get it when I say that my brain feels like it's pulsing and hitting my skull, my scars will feel like they're on fire and that I ahem migraines every day. No one understands what it's like and that is the worst; because I can walk and talk they think I'm alright. My pain is mostly throbbing, but it can feel like a knife is going straight through my brain. I have to decide each day if I am going to be in pain or high from the pain killers. I suffer from short term memory loss which is frustrating and embarrassing. Trying to carry a conversation and forgetting what was just said; not being able to remember what I did an hour ago, if I took my pills or not, if I ate or not; it can be extremely frustrating. I found that setting alarms on my phone helped.  Since the surgery I get petite seizures on a daily basis, they are "stress induced full body convulsions", apparently my brain can't process stress or anxiety very well. The smallest things will make me dizzy and I live with constant fatigue. My balance is not so hot and if I get the slightest bit bumped, I fall. I say all of this to let you know that you're not alone. These 7 months have been the worst 7 months of my life but God is getting me through this trial and He will continue to heal me and He can do the same for you. I am praying for you all. Keep fighting

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by gitardiva15, Jul 19, 2020
I am so sorry for all of you. It's painful to read your suffering. I had brain surgery in 2015. I don't know the type because I had it while I was in jail for flipping out on someone at work. A few weeks after I was arrested while waiting for court I began suffering tremors. Eventually they took over my whole body and I was diagnosed by the doctor in jail with Parkinson's. One of the nurses saw me returning to the clinic nearly every day and asked for the nearby hospital to examine me but they refused and sent her tests to give me. After giving me the tests I was taken to the Men's Jail Urgent Care to have a CT Scan and they found a tumor but there was so much blood they didn't know where the root was. Blood was pooling in my ears that they thought initially was ear wax. They rushed me to the hospital that day and I was on meds for two weeks to reduce the swelling. My neurosurgeon never consulted with me before or after so I didn't know what to expect. I never received any therapy. I suffered memory issues, speech issues either stammering when I spoke or slurring my words. Shortly after my surgery I was returned to jail. My case had been put on hold for 6 months while I recovered. I bumped the top of my head a few times on the upper metal bunk but they wouldn't check the area or take me to the hospital for an MRI to check the area. While in recovery a big spot on my head became infected and they had a hard time getting rid of it. It took months and I lost a big patch of hair that won't grow back. A few weeks later when I had the staples removed during my first Neuro consult I found out that they didn't get it all and I still have a golf ball sized tumor in my left brain because they couldn't take it out for fear of causing more damage. Between the time I waited to go to court to have my case heard, the time my case was put on hold for my surgery, and the amount of time I was in recovery, I was locked up for 15 months because I suffered bizarre behavior that I wasn't even aware I was doing. Six months after my release I went for a consult and the doctor didn't even spend 5 minutes with me. This was 5 years ago and I still don't know to this day the type of plate that's in my head. I don't know what I should or should not do. I have asked questions and haven't gotten answers. I thought that it was just my doctor. I'm so surprised to know that there are many who don't take the time with their patients. I suffer tenderness and pain in the area of my plate. I still have speech issues and memory problems. I've lost a lifetime of memories. I've lived in the same apartment for over a year and still walk in the kitchen and have to think about where something is, or I'll open the freezer for the pepper. I thank God that I have never had to take any meds other than Keppra. Before my surgery I was one of those people who wouldn't even take aspirin if I was sick. They have offered me pain meds, even the night of my surgery, but I refused them. I do have headaches but as I said I'm thankful that they have been mild and seldom so far. The first 2-3 years after my surgery I never had one so that fact that I have them even occasionally tells me that they will get worse eventually. I am so sorry for all of you who suffer so much with no hope. I know that it's just a matter of time before it starts for me as well. I can only pray that it happens when I'm close to death. I can't imagine having to live without a life.
God Bless everyone in this thread!

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