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life after brain tumor surgery

Oct 08, 2008 - 96 comments
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surgerys

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brain tumor

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head

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nausea

,

Pain



Its been 4 months and I am still not well-at all. I have dizzeness, severe headaches and pain, and always feel like im under water or in a fog. Oh ya I stammer a lot and have memory loss and am so very tired and just wiped out. Sometimes I dont see things right. When will this all end? Can someone tell me what kind of meds works best for the pain in the head. I tried Vicodin but got tired of being nausea, Then I was on Butalbital and that was worse-didnt help the pain. Now I have pain on the right side (tumor was left frontal). I had to start the Vicodin again to ease the pain but have to tolerate the nausea. How do you know if your brain is swelling? So many questions and no answers....

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by Rezee, Oct 13, 2008
I have been waking lately up with my hands hurting like they are asleep,kind of tight and swollen. It hurts to make a fist. Goes away as the day goes on but always comes back when i am sleeping.

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by KJR03, Nov 16, 2008
Unfortunately no one prepares us for brain surgery.  I had a tumor removed 5 years ago and I still remember the trauma I experienced afterwards.  It took me a full six months to even feel somewhat normal and even now I am not the same. Memory loss is definetely a part of the post brain surgery symptoms as well as the fog.  I was sent home with Butalbital. I finally gave up and just stop taking everything.  I went to a neuro opthamologist and he put me on Neurotin which helped my pain I was having behind my eyes.  I went to the Neuro Opth. against my dr's advice because I was having trouble with my eyes.  It turned out that my eyes, becuase of the surgery was healing cross eyed.  I started eyes excersises too.  Your brain will swell for months, possibly 6 months and my dr had told me this but I experienced this for myself.  I still suffer from headaches they call cluster headaches.  I am fully recovered from the brain tumor except for the physcological effects they did not prepare me for.  I hope this helps some. Hang in there, brain surgery takes time to recover from; and if you are like me no one prepares you for the after effects.

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by DesperateDebbie, Nov 16, 2008
i feel exactly the same way. My mother was diagnosed with a glioblastoma on June 5th she had surgery the very next day, went through 33 treatments of radiation and was taking chemo pills. Again about 2 weeks ago, less than 5 months after the first diagnosis, she had a second tumor. She had surgery again. It has been about 3 weeks and she is still in a lot of pain, She is experiencing the same symptoms that she was when she had the tumors, maybe even worse. She is in the hospital right now becuase she has some type of infection. Doctors will do a spinal tap to drain the fluid to see what type of infection it is and how to treat it. But you r so right, so many questions, and absolutley no answers. i am sorry for what u r going through and i will pray for you. I wish you the best.

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by SpaGirl323, Jan 02, 2009
I'm recently out of a brain tumor..a pituitary tumor and mengianoma..I have stammering with my speech, foggy feeling, sometimes things feel surreal, I have weakness in my limbs at time.  Sometimes my tongue gets thick and I slur my words as if I'm drunk..it's very embarassing. I still have Horrific pain in the brain which runs down to what feels like the edge of my eardrum. My head was cut from ear to ear. I've had alot of weird things going on..I was not prepared for this mentally whatsoever. Could someone else tell me what type of psycological effects they are having or have had? I'm thankful I found this blog. I'm not alone. God Bless you all and I'll pray for everyone's speedy recovery..
My name is robin..you can email me at ***@****

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by maybepoet, Jan 22, 2009
If anyone has had a meningioma removed there is a website meningioma.co.uk run by a lovely understanding lady who has an inoperable meningioma. She offers support, info and advice for meningioma sufferers. It helped me and my wife.

Simon

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by maybepoet, Jan 22, 2009
meningiomauk.org is the correct address.

Sorry

Simon

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by Katie78, Jan 23, 2009
My daughter had a brain tumor removed in 2000 when she was 10.  Honestly speaking, I feel that we are on a constant merry go round. Some days she has head aches and sleeps practically all day.  She constantly daydreams and talks to herself.  She gets so caught up in her daydreams that she urinates on herself.  I thought she was having a seizure during the times she did this on herself, but she can explain to me where she was and what she may have been dreaming about.  She often accuses me of things that don't happen and talks about situations that have never occurred.  We are going to the hospital next month for a week long eeg/video, etc. to see if she is seizing-or what!  Has anyone else experienced any strange behaviors this long after tumor removal?

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by Hudgreg, Aug 31, 2009
I had brain tumor removed 11 years ago - at age 30 and still feel in a daze much of the time - two naps per day - headaches - foggy feelings and "sparking of neurons" I call it.   Sudden jolts of smells and colors.
But........the cancer is gone.
God bless your daughter and you.
***@****

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by Hudgreg, Aug 31, 2009
hudgreg.at.juno.com

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by 274, Dec 26, 2009
Its a illegal substance and very contravercial but canibis will help with the headaches, keep you calm and relax'd and help you deal with the mental side effects that you find disturbing.
Unsure? google it !

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by meredith899, May 05, 2010
i had a brain tumor when i was 9... i got it removed by surgery. some days i still have headaches and i get tired pretty easily... and i have memory loss some... but overall i feel fully recovered. i am 13 now and my doctor said i have definetly made a good recovery. i know now that i really HAVE made a good recovery, i mean after reading all the other comments.
god bless you all, ill be praying.
meredith.

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by levite, Jun 10, 2010
MY NAME IS BRUCE HARVEY AND I LIVE IN PHILADELPHIA, PENNSYLVANIA. BACK IN THE YEAR OF 2000 I HAD TO UNDER GO A BRAIN SURGERY TO REMOVE A TUMOR THAT WAS SAID TO HAVE BEEN PRESENT SENSE I WAS A LITTLE BOY. THE OPERATION WAS PERFORMED WHEN I WAS 49  YEARS OLD. NOW THAT I AM 59 YEARS OLD THAT ONLY THING THAT IS WRONG WITH MY MIND/BRAIN IS THE FRUSTRATION OR NOT KNOWING THE FACTS AND MY MEDICAL RECORDS. THE ONLY THING THAT KEEPS ME GOING IS MY FAITH IN GOD. I'VE FOUND OUT MAN DOES NOT ALWAYS HELP YOU NO MATTER HOW NICE YOU THINK YOU'VE BEEN TO PEOPLE. I HAVE BEEN FUNCTIONING ON MY OWN FOR YEARS NOW. BUT ALL THAT I KEEP HEARING IS THAT I HAVE A BRAIN INJURY OR EVEN BRAIN DAMAGE. IT WAS ONCE SAID THE MY COGNITIVE SKILLS WERE BAD. YET I LIVE IN THE BIG CITY OF PHILADELPHIA ON MY OWN. WHAT HURTS ME ALSO IS THE FACT THAT I AM A VIETNAM VETERAN AND I DON'T WON'T ANY SPECIAL TREATMENT ALL THAT I WANT IS MY LEGAL RIGHTS AS A AMERICAN CITIZEN!
THIS IS EXACTLY WHAT PEOPLE GO THROUGH WITH DISABILITIES. WHERE ARE OUR RIGHTS?

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by suzerenee, Jul 05, 2010
Hi, my name is Sue and I had a benign brain tumor 3yrs ago.  I don't remember the week prior to me ending up in the emergency room, or the week after my surgery!  Looking back to the month before my surgery, I had alot of minor problems.  By themselves they didn't mean much, but, looking back they were all classic symptoms.  Apparenty my tumor had been growing in my brain for 10-15yrs before rearing it's ugly head!   All of the tumor was removed luckily.  I was on anti-depressants for a while, then I took myself off them thinking I didn't need them...I survived a BRAIN TUMOR, I'm a tough gal!  I've tried to ignor the fact that I have memory loss; irratability;  short temper;  and depression...I just deal with the problems.  The depression is the hardest part of it all.  On the outside I seem like my normal, out-going self...my own parents don't even see any difference in me. Most people think that because it happened 3yrs ago, and I look, and talk normally, that I'm ok....but on the inside it's tough to get out of bed some days.  

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by Judy1960, Jul 16, 2010
Judy July 16, 2010
My husband had a seizer back in november 2009 we don't have any  insurance so it has been so hard.  We went to a hospital and were there for a week than they told us that it was a brain tumor and that we could go home. They recommed that we find a specialist.  The problem is the tumor is very deep in the brain and the complications or loss of memory or speech. I am so worry  ( can someone advice me what to do ?)  

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by ienger, Jul 23, 2010
If your husband is a veteran, go to one of there hospitals...super care he will receive!!!

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by jxeno, Aug 15, 2010
I'm Jay, I had a brain tumor removed 8 months ago. It took me a while to get back on track, I am still on my way. Somedays I get out of bed because I am simply tired of being in the same room. Some nights I go to sleep not giving a **** if I wake up the next morning.
Bad memory, fogginess, confusion, irritability, anger outbursts, panic attacks, double vision.. are still part of my 'usual' life. What drives me crazier is that I can't do anything about it. I try to seem calm, control it, but on the inside I am not the same person anymore.

I still feel grateful to be alive, despite all that. All these little challenges that might mean nothing to those around me always test me and keep me going. Nobody will ever get those feelings apart from other survivors or people who have been in similar situations.
It took me a couple of months to accept that.. nobody tells you about these things pre-surgery.
All of this has made me much more perceptive, I do daydream quite often, but having went through all that I think we all tend to change our outlook and insight.

bless you all
peace

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by Blanqui, Sep 16, 2010
I had  a benign brain tumor 15 years ago.  I always have numbness on the left side of my face, but no pain.  Lately, I am having pain and more numbness on the same side.  I went to a dentist and was told there was nothing wrong with my teeth.. I also had an MRI and was negative.  I do not know where to go or what to do to alleviate the pain.  Anybody has an idea?



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by Bleddy05, Nov 25, 2010
Hi my name is Chris I had a brain tumer removed 3 years ago this coming Jan 17th, and i have the tired  feeling alot and feel lightingting bolts as I call them to my right eye and right ear. My tumor was on the right front temperal and thank God was not cancerous.  Nobody does warn us the post effects of the surgery, and to teel u the truth, im not sure if they know or understand these problems.  The brain is one part of the body that we know little about, yet there seems to be little desire to study us after these surgeries!  Ive seen things that turn out wernt there, and the mental problems i assumed would come from this surgery, but alittle heads up would have been nice. Being the strong willed one of all my friends and family, some how it seems ive fooled them to thinking i still am, but im alittle weaker nowadays, and there is always the threat of another siesure.  before the tumor was removed i had anger problems start to develop, and after the surgery, my anger was back, and stayed untill i admitted to myself that I did have brain damage, and would have to think alot more than the average person before i responded to things that upset me.  The hardest part of all of this is the fact that part of the tumor was left inside my head, because it was attacted to the main artery in the brain. The doctors have no idea how long it will take to grow back, and start pushing the brain into my skull again. Live live like its last day with ur loved ones, and friends because if ur like me ur body will start to reject the siesure medicine, and then it gets even uglier, like the loss of bowl movements and even more memory loss and more siesures.

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by melissaNtenn, Dec 08, 2010
My mom had a tumor removed from her left temporal lobe 8 months ago, after 33 weeks of radiation she was doing fine.  8 weeks exactly after radiation was stopped she has totall gotten confused, memory loss, very agitated and cries alot.  The doctors have put her on aricept which has made it worse.  The confusion and the agitation is so bad I have decided to stop the aricept my self.  This has took her back to where she is a little girl.  My mom is 66 years old and she thinks she still loves at home with her parents who passed away 20 years ago.  Any one have any of these side effects?

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by mickeyling111, Dec 31, 2010
My friend had surgery to remove tumor in his brain. I haven't receive any news from him or his family member. Can anybody tell me what will happen to him? When he will basically will be normal? He's already 3 months after the surgery. Thanks.

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by DixieDixie, Dec 31, 2010
     My mom had a cancerous left temporal lobe tumor (3cm ball) removed 2 months ago. 3 months ago she had a radical change in personality (very flat affect), right facial droopiness, and right sided weakness. My husband took her to the doctor and was told that she had had a mini-stroke. She is 71 and was the healthiest person I knew.  A month later, I took her back and insisted that she have a cat scan. Lo and behold-its a tumor! Five days later it was removed. She has had very little pain. Prior to getting adequate levels of steroids in the blood, she was confused, and messing up her words. For example, she requested a tooth regulator and became incensed when we couldn't figure out what she wanted-she wanted a toothpick. She wanted us to call people who had been dead for twenty years. The steroids seemed to help tremendously with this though they generate their own problems...The flat affect has resolved. In its place is meanness, irritability, unreasonable stubbornness, distrustfulness, etc. She refuses radiation treatment, which I can understand.
     She has declared that she intends to make her children's lives miserable and has proceeded to do that in between bouts of very real weakness and dependency. She lives alone. One day she is doing great-able to cook, bathe, drive. The next day she can't make it to the restroom, light her cigarette, get to the kitchen to get herself something to eat. She has been off of dexamethazone (steroid) for 1 wk. Her face is puffy. She is messing up her words a little. She is more irritable. She has started to shake uncontrollably. The doctor has stated she has steroid induced diabetes but has no clue as to why she is shaking. She is running a fever and has been started on antibiotics. At this point the doctor has been unable to identify a source of infection.
     My overall impression is that the doctors don't really know what will happen with any given person.What damage is done by the surgery and what damage is done from the tumor is open to speculation. How much improvement can be obtained is equally obscure. The surgeon really doesn't seem to be interested in anything beyond the fact that he successfully removed the tumor, kept the patient alive, and all physical and mental abilities are proximate to previous levels. The oncologist is out of the scenario because my mother isn't going to take radiation treatment. Her "normal" doctor is the one who misdiagnosed her. I think any other doctor she sees wants to run in the other direction due to the complexity of everything and her nastiness of temperament.
     This may sound depressing to those of you facing this challenge yourself or through a loved one. I however always like to know what I am facing so that I can best plan how to handle a given situation. Since the doctors don't appear to really know, it is through message boards like these that people can contact others to see what has happened to them, what has helped, what might be expected etc. For each miserable day that passes, it is one more day that I have with my mom and is therefore precious to me. A good day is a treasure beyond worth.  Good luck all.

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by Mara0201, Feb 22, 2011
My father had a brain tumor removed two months ago. It was graded II, and told us that a radiation was not necessary. Now, after only two months we had done MRI and the tumor is bigger then before, bigger then an egg. My father is 56 year old, has the same symptoms as before, memory lost, he is very nervous, and sometimes disoriented. Could you please give me some advice. What is the next step. Another operation?
Thank you, and good luck to all of us    

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by SpaGirl323, Feb 23, 2011
For the lady who is asking about what's the best drug's to take for head pain. First off, I'd make an appointment to see a Pain Management Dr. ASAP! I would suggest getting placed on Methadone for the pain. I was very afraid of this drug in the very beginning but now I realize after all of this time it was the best. I could not imagine what life would be like without it. I have felt the pains in my head without methadone and it's not anything I'd like to feel 24-7. You do not feel high or intoxicated which is one of the thing's I love. It actually blocks the pain signlas in the brain. It's the perfect medication for your type of pain. Remember this pain will only worsen with time not get better. This I also know.  Get on the right medications ASAP by the proper Doctors. Don't listen to other's who have not endured what you have. Remember, everyone has an opinion.  I had a craniotomy for a brain tumor in 2005. I do feel all of your aches and pains. Having this type of tumor surgery is a long journey back to some normalcy. I can say, it's now 2-23-2011 and I'm beginning to get my memory and my life back in some order. It was just this year that I've been able to do this. I've had some tough bouts with my memory etc., since this surgery. Thing's your surgeon won't ever tell you or you would not have the surgery. I'd never thought it would be this long to recover fully and I don't feel I'm 100% at all. I've lost so much of my memory. I used to design Webster. I've lost all ability to recall any of that memory. I can no longer recall thing's on a whim that I could before. I'll tell you something even stranger I live in a 3800 sq. foot home alone. I spent well over 2 years in therapy because I was so disorganized and it had caused me to have panic, anxiety attacks. I can't tolerate clutter or a messy house. However I was unable to get my home together, so I went to therapy. Only until later discover not only did I own a 3800 sq. foot home I had a 2 car garage. Imagine how stupid I felt when I realized I had a 2 car garage and I could have very easily packed up these thing's cluttering my home and la bled them to place in the garage to take out at another date to sort and put in their place. I felt like the biggest dumb *** that's all I can say. The surgery causes these ah ha moments and it's quiet frankly very embarrassing. I needed speech therapy but due to the fact my grandmother was such a good English teacher I was able to school myself. I still have to have people to say a word and let me hear it so I can repeat it over & over to learn to properly pronounce it.  I used to could write so well and my spelling, punctuation and grammar was impeccable and I lost every memory of how to even structure a paragraph, sentence, when and where to put a period or a comma. It's so embarrassing but it is what it is. It's been a long road..and I'm still traveling the road.
I finally did get all of the clutter boxed, labeled, and placed in the garage I realized I had. Can you believe it?
Some thing's I have learned that have helped me;
1) Meditation
2) Writing, journal, making notes, keeping lists
3) Trying to remain calm so your blood pressure doesn't spike, getting you upset and maybe causing a anxiety attack or panic. Trying to stay calm is a hard job for me but it can be possible with practice.
4) Getting therapy to help you if you have the slightest problem

Don't ever be embarrassed because you didn't remember something you normally would. Please don't beat yourself up. I do this and it's hard not to.  After all not every day do people live through such a horrific surgery and live to tell.
5) be thankful you are ALIVE and celebrate it each and everyday
6) Sign up for websites that help to inspire you, make you feel good etc.

7) Also get yourself a little book at one of the dollar stores. Keep a list of every website you sign up for. Keep a listing of all your user names and password's (there is nothing worse than sitting for hours trying to beat yourself into submission trying to recall your user name and password) Simply keep this log until your memory returns and keep it close by so you don't forget where it is.
You can do little thing's to make your life more easier so you can transition back to the beautiful full of life and memory individual you were before your surgery.
My email address is: lawdog323 (AT) aol.com if you ever need to ask me anything please do. I am seen by some of the best doctors in this country at one of the Medical Center's. I've had a long, long, road of recovery, and this is not my first rodeo. I've got a lot of experience under my belt. If I can't help you. I can find someone who will. I have all of my specialist on speed-dial.
Bless you all. I hope all of you recover in the fastest most easiest way possible. I do feel your pain..
Robin D.

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by SpaGirl323, Feb 23, 2011
I read all of your posts after I wrote the above post about my journey after brain tumor surgery. Wow, I didn't realize we are all having so many side-effects. I too wake up @ times  with both hands feeling fully asleep and I can't move them. I have awakened and my arms would be so (I can only describe it as being fully asleep) that I would have to use my other arm to work my whole arm back and forth to get it to "wake-up" this is very weird and I felt it was from my spine as I have some tumors in the spine and I have not committed to what I will do about them. I have had a total personality change as well. I used to be a *** kicking SOB of a woman. My friend's used to call me, the real life Laura croft or G. I. Jane. Now I'm nothing but a doormat of the person I used to be. Don't get me wrong. I always used my very brave attitude to help other's and I never accepted no for an answer. Now I'm just a shell with this very large personality hidden some where deep inside. I know how "she" used to be but I can't get "her" to come alive.  

Also, I have been having periods of suddenly smelling and/tasting thing's out of the blue. Like the other day I was in an area where there was a bunch of stinking trash that had set out in the heat all day. It was awful. Suddenly I started smelling fresh baked cupcakes. WTF? How did this happen.

I also day dream a lot..and time is something I could care less about. I am so happy to be alive but honestly I've made peace with everything and everyone if I pass in the night! I could care less. This is not who I used to be.

I suffer from extreme chronic fatigue. I have my weeks where I can get up and work like a mad woman. Then I'll be back down in the bed for another 7 to 8 days, sometimes it's less 2-4 days never 1 day or more than 10. My energy comes in spurts and it's sporadic spurts. It's very frustrating because I can never fully commit to anything, any events.  I am up and down (physically able to get up and function) which drives me crazy. I have tried to journal these ups and downs with my physical issues but it's not a stable regimen. I will say this week for example. I slept til 3 PM yesterday (Tuesday) and I was back asleep at 10 PM. The day before I got up at 8 AM was up until 3 AM. I did nothing all day on Monday but lay in the bed I was exhausted. Exhausted even though I did absolutely nothing Sunday or Saturday but lay in the bed so tired I could not move.  Now, last Wednesday, I was outside digging up dead bushes out of my garden all day! 2 days prior I was in the bed for 3 days straight so fatigued. Nobody understands this, not even me.

Right before my surgery I had narcolepsy so severely I feel asleep 32 times during my admissions to the hospital. 32 TIMES??? that's pretty serious! I would go to sleep on Friday and sleep all weekend long and wake up on Sunday around 12. The only reason I know this is because my son was very concerned he went to work on Friday and stayed gone until Sunday. I was still lying in the same spot, wearing the same clothing, and he saw no signs of my being up and about (cooking)  I've had ZERO support from my direct family (sister's, brother's, father, mother). I'm basically alone in this journey. My precious son is in Afghanistan on his 3rd tour of duty and is now married with 2 little girls. When he's not in the war, he is living in Kansas.  The only one person who offer's a slight amount of support is a chronic complainer and has a host of medical issues in which I'm told about every time I see her. This drives me MAD! Often send's me into a internal rage. I can't tolerate hearing about it. I don't know why it bother's me so much. It's like they are the Debby Downer of my every day!

I am in a mental fog quiet often..But when I do feel good and I'm up and moving..I will work myself into a frenzy. I do talk to myself a lot and I also answer myself which is very bizarre. I used to talk to the TV before the surgery but on a quick witted comment or something snide about a news report. Never, ever to this degree. I have a full on dialogue with myself. Weird. I also know it's weird and not normal. I do have severe bouts with memory loss. if something traumatizes me I forget everything that surrounds it. I do have crying spells from time to time and I have compulsive/obessive thoughts about things at times which drives me batty..All of this happened AFTER the surgery. I never had these problems before.

One thing that has improved my mental state with having some physical energy maybe 12 days or less out of a 30 day period. I'm on new med's. Mind you, I HATE taking medications and prior to this I wasn't a person that would take an aspirin. I was very healthy and took good care of myself..Now I'm stuck on these med's so I make them work for me..
I take Methadone (chronic pain) with Adderall (Adult ADD), Effexor (PTSD and slight depressive disorder which is not what I call full blown depression but it helps), Xanax (severe anxiety attacks with agoraphobia), Celebrex (A vascular necrosis), Flexaril (muscle stiffness and pain ONLY when needed) I truly believe the methadone and the adderall compliment each other. The combo drugs are wonderful for your mental state and having more energy and thoughts of doing more. It does not SPEED you up whatsoever.

Once I started the adderall I could tell my entire attitude changed. I'm still the woman who is in this body after the brain surgery but she has much brighter days then before the med's change

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by hopeless210, Feb 28, 2011
ok my man is in prison due to be released in a couple of months he is going to have brain surgery in about a month and he is to be released in june 2011 he has been in prison for two years and he has been talking about getting brain surgery for a long time now so i have been doing alot of research on it today and i just read all of u guys post and it is very distressing because for the most part he will be out on parole so he will have on an ankle bracelet he, i am starting online school soon we also have 2 1/2 yr old twins which hes getting out to take care of them so i can do school and go back to work but after reading all the post and of the research it dosent look like i will be doing much of anything but taking care of him and taking care of my children which i have taking care of most of their time on this earth by myself i thought i would be getting a break and some help from him and im not i guess this seems selfish but he just lays this on me a couple days ago and has no info for me like what kinda tumor is it or anything nothing and we had all these plans and now everything seems to be going out the window im just fustrated as to why he has to have this done right now and why they didnt have this done a year ago why right now when he getting out of prison.??? what can i do does he need this surgery is it life or death he dosent know any answers to my questions what can i do????

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by sam281, Mar 02, 2011
my friend has tumer more than 5 years..however right now he knew that he have brain tumer..doctor advised him for surgery kindly tell me whether it is benificial or not?

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by kmacdonald, Mar 05, 2011
Wow I had brain surgery about 18months ago for the removal of a large cyst. They had to cut the muscle and nerve on my temple to get to the cyst. I have terrible headaches still, and my temple kills me some days. I did ask the surgeon who told me to ask the physio but she said what can she do about the pain on my temple it's not like you can exercise it. I feel a little better knowing it isn't just me. Sleeping is a nightmare, the pain on the side of my head and face if I fall asleep on that side is astounding. I know I am lucky but my husband and I sometimes wonder if the cure is worse than the problem. I feel like such a sook complaining about it, it seems so long ago but at least I know now its not just me.

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by IslandLady17, Apr 19, 2011
Oh my god!!  Where has this forum been!! I'm reading these posts and crying because I'm not alone!!! I feel like I've been going crazy since I had a benign brain tumor removed six months ago.The surgery went well but it is as though my body has been falling apart ever since!!  I was healthy before surgery, seldom had a cold! After: numerous bouts of sinusitis (treated with penicillin which I am post-surgery allergic), at my 3 month follow up they tell me I have diffuse sinus disease. The ENT I am referred to tells me it's all on the right side (where the tumor was) and yes, it's relayed to the tumor and/or surgery. He puts me on antibiotics and prednisone  and when I go back, no noticeable change. Candidate for surgery, but no dire rush. But he says "I don't know why you had such a severe case" - I say you told me it was related to the tumor and he looks at me as though I were crazy!! Meanwhile. My left arm hurts. Feels like someone punched me. FireRm starts to burn, hand tingled. Dr says peripheal neuropathy probably due to surgery. Puts me on Gabapetin which makes me loopy. Go see my regular Dr who says no, I pulled a muscle, wait a few weeks. It gets worse. I go back and he finally says physical therapy where she says I might have a torn rotator cuff. It's killing me and even though they say the only way they can tell for sure is an MRI but no one will authorize it. My head hurts where the incision was made;they cut nerves in my face when they dud it, so I'm very sensitive. My vision stops focusing after awhile. I still have headaches I mentioned depression and no one cares. I am so tired, I try to do cardio and afterwards feel horrible. I cannot sleep without a sleep aid. I am easily agitated which is so not me. I look on so it's like in fine to everyone else. I try talking to my husband, to family members, Drs, therapists, NO ONE GETS IT!!! Meanwhile I'm if work and keep getting mounds if paperwork to give to Drs re disability. It's never ending and they make me feel as though I am trying to milk the system. I find myself wishing I had a different result like terminal cancer so that I could go -- nothing makes me happy, I don't get excited about anything!! I feel like no one believes me!! I'm not suicidal as I could never do that to my kids, but I wish I were dead!! it's like someone said -- they worry about making the tumor go away, making you comfortable if you have cancer. But if it was benign, they don't care, you don't have a problem!! People care about the dying. They don't seem to care bout those of us that are living, or at least trying to!!! I wish I could go back and undo my surgery!! And there is no one to talk to!!!!


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by Dani_87, Apr 29, 2011
I don't know what to do anymore. My husband had brain surgery last year to have a benign tumor removed that was growing on his pituitary and he has not been the same since. He is angry all of the time, hes violent, and acts like he hates me. He is on a regimen of at least 6 different medications to help with his deficient hormones because his pituitary basically stopped functioning after the surgery. He says how much he hates how he is not normal anymore and he has to take pills to feel better. Some days we have good days, but there is at least 1 point in each day where I feel like I don't know who he is anymore. He can be happy and talking to me and I feel like we are in a good place and then literally 5 seconds later he will fly off the handle and start cursing and saying how stupid I am. Hes not sexually interested in me anymore as well as he wont kiss me or hug me on his own. I feel so alone. His doctors are no help. They just say these things take time to work themselves out but how long am I supposed to feel like this with no one helping me?? What do I do? I feel like he wouldn't even care if he lived or died anymore. He constantly tells me I never help him with any of his problems and I just don't care, when all I do is take care of him! Pretty much nobody in our family knows what is going on  because I pretend things are fine so we wont have an argument later. And then I just come home and cry. The worst part is we are only 24. He hasn't even finished college because of this. He can't focus on one thing long enough to finish it and keeps dropping classes. How is he going to be able to function in the real world when he finally does finish? Is he going to be able to hold a job? Is he going to get himself fired because of his anger? Are we going to be able to have a family? I feel like I need a support group to deal with this but don't know where to find one. I just don't know. Without me I know he won't be able to deal with this because he wont have insurance but how long am I supposed to live like this? Nobody really knows how depressed I am. I know he's depressed but he wont get help and every time I mention psychiatry he freaks out. somebody help me!!!

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by tejona, Aug 18, 2011
In september of this year it will be one year that my son who is 11 now had a brain tumor the size of a softball on his left side it was a very rocky in the beginng he had to be rushed back to kosairs childrens hospital to have fluids removed an now he still fights everyday to be able to use his right hand agian he still has problems with balance an here recent he has been complaining about his body hurting an he has had loss of appetite an he just wants to sleep what should i do ?

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by adelbassuony, Sep 11, 2011
My brother had a brain syrgery last week, they removed a huge tumor (germinoma) from the brain stem, since the operation he is DISORIENTED , see things never happens and cant remember at all.
  Could anybody tell me when this Disorientation will disappear ???

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by elisadrummer1, Nov 26, 2011
I have had two Brain Tumor surgeries and have trouble reasoning every day life. People don't make sense and it is hard to put a handle on it!! I just keep being me, but people don't want that it seems. They want me to be something I am not. They move food around on me, deny me a tv in my room for a year and act as though I am a nuisance being alive. Is sad but true! I am a almost 50 year old that is naive and has been used by a man too!! Am trying to press forward with bravery! I too have memory issues and people pre-determine me before they have even met me. I feel nauseated most of the time and have cold sweats at any moment. No appetite but for soup and the worst thing is. My family doesn't care nor want to hear of my ailments at all, ever. So I sit and stuff them and tonight am trying to go out and see if can make it? The tumor could not be removed and is still there on my artery of my brain. Had a stroke during the surgery and have to learn to walk, use a fork and so on all over again. still, there are no people out there that really care. That is the sad part...
Thanks for letting me share!
E

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by johndave77, Feb 16, 2012
I HAD BRAIN SURGERY FIVE YEARS AGO. MY SURGERY TOOK 12 HOURS, BECAUSE IT WAS HUGE AND HARD. I T WAS A MENINGIOMA(BENIGN),  WRAPPED AROUND CARODA ARTERY(MAIN ARTERY TO BRAIN) I HAD RADIATION TO DESOLVE OR TRY TO DESOLVE THE REST OF IT,(8 WEEK)  BECAUSE SURGERY COULD NOT GET TO CLOSE TO ARTERY. I AM 69YEARS OLD. I DO HAVE SOME MEMORY LOSS SOMETIMES. BUT, I DO THINK PEOPLE MY AGE HAVE MEMORY LOSS ...MY QUESTION IS HOW LONG DOES ONE LIVE WITH THE RADIATION THAT I HAD FOR 8 WEEKS?   IS THERE ANY ANSWERS OUT THERE? JANET

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by Debbieaz, Feb 26, 2012
hi janet  i too have to go for an mri every 6 mths  they had to leave part of my tumor in as it is wrapped around my facia nerves  i dont know how long i have to do this right now i have 1 set up march 10th   i aleady am over sdue  i was supposed to go in feb.  my surgery was 22hrs. long  they had to go thru my right ear canal  i am now permaantly deaf in this ear  they ttell me there isnt a hearing aid to help           just implants  i cant b bothered  mine is also benign thank God

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by Deedee_3, Mar 17, 2012
Searched for years -- was I alone after surgery to understand the immediate after affects .... 2008 was the year I had removal of a meningioma. To this day (Mar2012) - when I ask the question - "How long was I in the hospital - i have not gotten an answer from anyone in the family". After surgery i was in ICU - how long i don't know - running a fever. Woke up and was moved onto a bed - I saw people in there I did not know and what happened to me. What was that word on the board - TUESDAY - what did it mean - i was asked to read it ... day after day after day a new word - what did it mean - how do you read a clock. Who is that man sitting on the couch calling me Diana. Who is the oriental dr.?? Still don't know. I had therapy 4 months ... cognitive problems - memory loss - concentration - word searching to make sense or a sentence...fighting my mind to say what i wanted to say - come up with a word that didn't match when someone spoke to me - repeating words to hear if they were right or have i heard that word before - did I know it. Trying to match two sentences to make a thought. Couldn't drive so a friend at work and his wife took over so I could come and go to drs. and therapies. Couldn't remember to take medicine - what time to take it - had i already took it - what was it for - there was no order to anything in my life. I began to remember my family - not a lot of memories at first - it is coming along after years. Oh, there are times something will come into my mind for no reason - this one was embarrassing and demeaning - a few weeks ago - i had a visual of wearing a diaper ... and it hit me hard - i had not gotten up one time at the hospital to go to the bathroom - so, i came to terms with I had worn a diaper the whole time - i got up enough guts to ask my daughter - is this true ???? Did i not get up to go to the bathroom - wore a diaper????? She moved her head saying  yes - i cried. Yes memories jump into my mind and i deal with them - some funny - some exciting - some scarey - some alone.
BY THE WAY - I am in corporate communication/graphic design/web - had to relearn - but it worked out and was able to keep my job. Wonderful supporting boss and my intern handled all things well.  Yes, what you have read still occurs - but I have a better understanding and ability to handle it.
ONE MORE THING - both my younger daughter and I understand each other and I have been supportive to her aftermath - she had meningioma surgery 1 year ago this April. We are supportive to each other ... this have been a life changing moment for each other. God watches us.

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by Gambit4PM, Apr 04, 2012
Hi,

I had surgery to remove an angioma in my front right temporal lobe on 26th January 2012, which was diagnosed following the development of epilepsy at the age of 34, followed by a small brain haemorrhage in March 2011.

Waking up in recovery was amazing as I could remember the conversation I had with my anaethestist before he put me under. I was out of hospital 5 days later, having been caught by a nurse doing press-ups in my bathroom: it seemed unnecessary for me to stay in, despite the pain, so I requested a discharge. Oh yes, the pain is literally mind-blowing. I was on morphine, codeine, paracetamol and ibroprofen all at once, but to no avail so I went cold turkey after 4 days and just learned to take the pain instead. My right eye felt like is was going to explode, and they had sliced through my jaw muscles and tendons, which made eating tricky. Excercise has kept me going; whenever the pain is too bad, I go running, walking or climbing. I entered the Sport Relief Mile a couple of weeks ago and came first out of a group of 50.

However, despite fighting through the tiredness and short-term memory loss to regain my fitness, what I was not prepared for was the complete ignorance and prejudice exhibited by so-called friends and family towards anyone suffering a brain condition. The general consensus is that I must be mentally ill as a result of the tumour and/or surgery, though this has been completely refuted by my doctors. My in-laws refused to speak to me after I came out of hospital, on the grounds that they were 'too squeamish' to come near me or talk about it. My wife and mother-in-law complained that I was putting them off their food. My wife had moved out of our bedroom when I returned from hospital, ostensibly to give me recovery space. A month later she filed for divorce for reasons not yet fully explained, other than 'irretrievable breakdown of the marriage', which was news to me. I am now facing losing my home and my children, just two months after surgery. I have already lost my job, having sold my succesful business before surgery. My wife took all the money whilst I was in hospital, leaving me with nothing. This isn't meant to be a hard-luck story, simply an illustration of the incredible prejudices faced by anyone unlucky enough to have a brain tumour or any other trauma. As for God, my wife and her family profess themselves to be Christians, who will be attending Church this Easter - I think I'm a far better person for being an atheist!

Clearly my wife and her family would have preferred me to have quietly passed away on the operating table, to save them them from their 'squeamishness'. I can't help but observe that the Catholic Church was not exactly vocal in its opposition to Hitler's policies of consigning epileptics to the gas chambers either! So all those hypocrits going to Church this weekend can go to their personal vision of hell as far as I'm concerned. Judge people by their actions not their words or professed religious beliefs.

Having been brought back from the dead at least twice, I'm fairly confident that there's nothing there but infinite darkness...life after death is only possible when you carry on living in the memories of those left behind, so just make sure you fill your life with good deeds and help those more disadvantaged than you. Every second is precious, so don't waste it. Instead of assuaging your moral guilt by going to Church, get off your backsides and do something useful instead - forego your expensive Sunday lunch and donate the money to provide vaccinations to children in Africa! There's no such thing as God, but there are children dying unnecesarily in Africa every day...My highly skilled surgeon, not 'God', gave me a second chance in life and I will use that opportunity to give others a chance too.

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by raeraetreva, Jun 02, 2012
HELLO EVRI1, WOT A RELIEF 2 C A WEBSITE WHER I BELONG & 2 KNOW THE AFTER EFFECTS ARE QUITE COMMON & I'M NOT ALONE IN THIS, HOW ENCOURAGING....I HAD A SEIZURE FROM MY BENIGN TUMOR I DIDN'T KNOW I HAD,  (that i greatly regret my poor son had the horror of being there for, but i'm so grateful he was as he saved my life).  I HAD BEEN TRIPPING UP ALOT, DROPPING THINGS, BAD MEMORY LOSS, AFFECTED PERSONALITY, STRONG HEADACHES + EXPERIENCING STRANGE SMELLS + SEEING WEIRD COLOURS, BLURRY EYESIGHT AND CONSTANT EAR INFECTIONS....STRANGELY, I WAS WORKING SO MUCH I DIDN'T ADD IT ALL UP! ..... NOW AFTER THE OP. I STILL EXPERIENCE THE SAME THINGS, WITH A FEW EXTRA'S- TIRED QUITE A BIT, I FORCE MYSELF TO DO THINGS-only cause it's dead boring lying down alot- IT'S REALLY HARD TO READ AND FOCUS, TO WRITE OR EVEN THINK, I PERIODICALLY STUTTER: ESPECIALLY WHEN I'M TIRED OR AROUND A LOT OF PEOPLE, MY THINKING FLOATS OFF WHEN I'M AROUND OTHERS AND IT'S LIKE DAYDREAMING, I HAVE TO CONCENTRATE HARD TO FOCUS, I HAVE FOOT IN MOUTH SYNDROME, IRRITABILITY OVER NOTHING, DARK CIRCLES UNDER MY EYES AND I'M HARD OF HEARING NOW.....THE POSITIVES ARE THAT this has helped me to appreciate every day, keep my life simple, take it a day at a time, keep a 'cents' of humour when i stumble my words + mix up my spelling, use my deafness to my advantage when i'd rather ignore things, learn to ask for 'help' for once in my life, i don't let the little things get to me anymore, my foot in mouth is teaching me-not that i want to-to apologise and best of all....my no memory means i have no real stress cause i keep forgetting! Hehee...it's not all roses but i'm trying real hard to focus on the positive when i can.....plus i have a lot of admiration and thankfulness to read everyones stories + struggles....we can do it
...raeraetreva

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by KathyCole, Jun 19, 2012
my mom had surgery on May 5,2012 for a recurring meningioma on the frontal lobe.  She had the originally surgery back in 2008 and was in the hospital for 4 days.  This surgery has turned out quite differently.  She was in the hospital for 3 1/2 weeks.  Had a peg tube placed in her stomach and is now at a skilled nursing facility getting rehab.  She cannot speak, has difficulty moving her left side, cannot eat and cannot use the bathroom.  It is completely discouraging.  She seems completely aware of everything around her which can be even more discouraging.  It is like she is trapped in her own body.  has anyone else experience this and had a full recovery?  her therapists are negative about her recovering at all.

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by Richarddd, Jul 18, 2012
I had brain surgery back in nov. 28th of 2011 it is now July 19 2012 my vision is double with a large deviation in my left eye and my balance is good but bad, I still stumble alot. I'm actually a little slower. Can someone tell me how long until my balance comes back? I need answers. Or actually if itll even return... The doctor said that at the end of this year my balance should be up to 95% but idk.. Can someone please answers me some questions?

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by Richarddd, Jul 18, 2012
Oh my brain surgery was a cist growing on my brain stem on my cerebelum. It was completely removed:

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by elainerivera805, Jul 23, 2012

By:       ***@****                Well hi i just found out that i have a tumor  in my brain im 40 years old i first thought it was from being beat up by my x i thought it was still swollen cause my left cheek was swollen then my left eye was swollen, now it looks like my left eye is going to pop out and i have a abcess on my left cheek...well come find out its a tumor and not cancer-ous. I am scared i dont know whats going to happen after they take it out am i going to b able to talk and speak and the doctor tells me to do one thing at a time well how can i??? im the one that gets dizzy right now and hurts and worried.Can someone with the same or similar problem write me please my name is Elaine.              THANK YOU!!!!!!


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by wantoknow12, Jul 28, 2012
My fiancee had surgery to remove part of a tumor.  They could only remove about 2/3s of it.  Because of the area it is located they would not remove it completely.  He already was acting different,confused  before the surgery.  Doctors said it was probably due to the tumor growing and the swelling he had.  It has been a week and he doesn't seem to be improving memorywise.  In fact he might be worsening.  I'm afraid he has lost his memory and might not ever be himself. I know that everyone's recovery is different --as I've heard this I don't know how many times from doectors--- Has anyone experienced this?  I am trying to hope that his brain might still be healing and it is a mateer of time before he comes back.  His surgery was July 19th.  I'm wondering if I just need to have a little more patience.  He also had his hypocampus removed for prevention of seizures  Any info wuold help.  He has his good days and bad which in turn makes it the same for me.  I am torn.  I don't know whether to accept his memory loss and the fact that I have lost the person I knew or keep hoping for a miracle.  

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by frustrated4209, Aug 31, 2012
I had brain surgery To remove a benign tumor that the Neurologist stated had been there for several years. The Neurosurgeon told me before the operation it was in a place that might affect my memory and it scared me to death but after the surgery I could remember things in the past like it was yesterday so I thought it improved my memory but people would tell me I repeat stuff and I would forget appointments and have to write everything down also I was diagnosed with anxiety panic disorder when I was 22 and was put on a miracle drug called paxil that worked until they took the tumor out but then it stopped. Also my eye site used to be above normal and now I have trouble reading small print and have to use magnifying glasses. My hearing is not as good and now I can't work and social security denied my first apply. It was on my left frontal lobe. I can't work and I'm frustrated. I have worked all my life and have 23.5 yrs with the State government. Can anyone give me some advice? Also my emotions are up and down.



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by michelle302, Oct 04, 2012
I was diagnosed with brain cancer 12 years ago. I have had multiple health problems such as hoshimotos disease, hypothyroidism, high blood pressure, chronic migraines, sinusitis....not to mention chronic fatigue and fibromyalgia. I have been on every pain killer out their and it only seems to work for a short while :/.  I truly love and serve the Lord, but there are some days I have to litteraly pull myself out of bed and I look like I'm dead my circles are so dark. For all of you out there in the same boat ,keep your chins up, God has us here for a reason!

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by vjc80, Nov 07, 2012
Hi
I'm Valerie, Has anyone on this forum experienced an Oligodendronglioma....I have.   It's been 3 years since mine was completely removed, but it will be growing back, and when it does I'll need Radiation and Chemo therapy, so my doctor does an MRI every 6 mos. to make sure there's no "new" growth...........In the mean time over the past 3 years I've experienced LOTS of memory loss, personality changes, and MOOD swings. I feel as though I'm going out of my mind ! I'm thinking maybe it's hormonal... went to my GYN,(that's all good) or maybe I'm going through some mid-life crisis...my kids both hate me and I can't decide which man I really wanna be with (never been married) and I'm 43 years old.  NOone understands me, or what I've been through...They found the tumor(2 1/2 inches) in the frontal lobe, because while at work one day I had a seizure and rushed to the E.R., did an MRI and there it was...BRAIN CANCER. I was devistated to say the least. MY QUESTION IS.....will this ever end ?????
Will I ever be the same person I was before the tumor, they say it took like 10 even 20 years to grow like that but... DID it ??
Have I always been 1/2 out of my mind because of this mass on my brain ??? Open for any comment or enlightenment anyone can give...thank you  !!!

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by keepinittogether, Nov 23, 2012
By Keepingittogether, Nov 23, 2012

My husband found out he had a 6-7cm oligodendroglioma tumor Grade 2-3 in early Feb 2012. He was having many eye symtoms, headaches, memory and balance problems that were increasing in frequency leading him to emergenc surgery. Followed by 2nd surgery to remove more a week later. Dr. didn't remove enough to have treatment be successful so said 3rd surg needed. He was left with a numb left foot post 1st surg but no one can figure out why. We switched to Duke and had as successful awake surg as possible and removed all but 12%( rest is inoperable). Many lingering memory probs, balance prob, nighttime stuttering, stumbling, shakiness in hands and generally aches all different places in body. He keeps a good attitude in day but when falling asleep often mumbles about he would rather not live like this, and that he sees people in white. He never remembers what he says when he goes to sleep. I have never told him about the people in white but wonder what that means. He says he has aches all the time and now his eye where surgery(left frontal) was is hurting more now again only 4 mo after last surg. Not sure what that means. He gets MRI every 2 mo right now. and is on chemo for a yr orally.Not sure if that is going to help shrink it or not. He has spec chromosomes that are deleted that chemo is supposed to work well if that is deleted. He supposedly has 10 yr avg life expectancy but I think he could live longer. He says he won't. I wish he wouldn't talk like that around the kids but he does occasionally. Anyone suggesting radiation, please get 2nd opinion even if large hosp. We had a dr at a university hosp ready to radiate and then both Hopkins and Duke said no. Always get more opinions, its worth it!! If your insurance covers it go to out of town hosp. You must advocate for spouse and yourself!

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by BooBathy, Nov 25, 2012
Hello, I have been experiencing very awkward and uncomfortable feelings for about a month now. I've read up on a lot of different websites because I do not have insurance and refuse to go to a doctor to have them tell me nothing is wrong as that has happened before. After reading all these posts I realize a lot of my symptoms are the same as you guys that have had brain tumors. My limbs fall asleep at night, my brain feels swollen and I get very dizzy and lightheaded to the point I stumble when standing. When the pain in my head gets so bad my arms fly up and i feel like i may go into convulsions. My chest hurts and I have a very rapid heart beat most of the time. I have trouble focusing and have experienced hearing issues and memory loss. Yesterday i blacked out for about 10 seconds while walking in the mall. I am 28 years old and have also abused vicodin for over 2 years.  I did look into side effects for long term abuse and nothing matched this crazy feeling in my head. Someone please help me. I'm a bit scared and don't know what to do. Thank you!

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by SineadRoseanne, Dec 03, 2012
Heey im 18 years old and it has been a year since having an operation to remove a benign tumor on the brain. I found out about the tumor when I started having epileptic fits and finding myself waking up in hospital. It was a scary experience at the time but the fits saved my life basically. When I was younger I kept getting de ja vu like I felt like I had seen something before, i would get the shakes and get a weird smell. I would go unconcious for at least a minute and my speech would go slurred. I had never realized that this was happening due to a tumor. Since the removal of the tumor I do find life distressing at times as I am unable to concerntrate as much on my college work, due to being tired all of the time and bad tension headaches. I day dream a lot and can sleep for so long. My body goes numb a lot on the right side of my body which is on the same side of my tumor. There's times where I feel like giving up because i'll never be the same as what I was before the tumor. But then I thank my self lucky for been alive because in all honesty I never thought id make it to my 18th birthday when finding out about the tumor. The experience enabled me to become a stronger person and i tend to appreciate life a lot more. Just thought id let you all know about the experience :)

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by Foxhouse, Jan 25, 2013
Hello, My husband had brain tumor surgery 12-20-2012 a Craniopharyngioma. He is 56 years old. We where told  by the Nuerologist that this would be a fairly routine surgery. He would have a recovery time of about a week to one month, depending on how he felt after surgery. Before surgery he was having headaches, neck pain, and dizziness and breif moments of passing out. He was diagnosed 10-31-2012. This lasted for about two weeks and than he felt fine for two months before surgery to the point where he even thought wow did he really even need surgery? The day after surgery my husband was awake and up and about in the hospital. He had no idea who he was or what happened. Everyday for three days of his hospital stay he would wander around the hospital, looking for me.the only thing he did remember was that I was his wife. The nurses would complain to me that he almost escaped out of the hospital many times. On day three after surgery they released him, even though he had no idea what was going on or who he was. I have been taking care of him by myself now for 5 weeks. His family never visits and pretends he dosen't exist now. He  has no short term memory, is easy confused, frustrated, has loss of balance, cannot drive, loss of smell, and headaches. and insatiable hunger. The surgeon told us this confusion  should not have happened as they didn't remove any part of the brain that dealt with memory or learning. Still they don't help us at all or recommend anything. He is on prednisone, thyroid medicine, and kidney insipidious medicine. My husband was a gifted brilliant man before this surgery, a mechanic, and now he cannot even be left alone for two minutes on his own as he is more like a child now. I am so thankfull he is alive but our lives have changed so dramactically. I wonder if it would have been better to never have had surgery. I look up as much info as possible on the computer as our doctors don't provide any info or help. I have no idea now how long this will last. I hope and pray he will get better, but really have no clue now.

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by dotty58, Jan 30, 2013
My husband was told in September he had a tumor it was cancer right temp lobe giobla stage 4 next week he had surgery to remove tumor couldn't get it all went through 33 weeks of radiation and chemo now on a 5 day on trumbor and 23 days off, hes starting to get bad headaches again he had a MRI end of Dec showed cancer wasn't growing yet. Why is he getting such bad headaches.

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by jugbutt, Feb 15, 2013
I had a benign meningioma tumor removed nov. 2011.Here is what I notice about myself: depression, headaches off and on, dizzy spells on occasions, dream and sleep harder than ever, emotions like crying comes easy, I smell like the anti seizure pills, energy level has gone down quite a bit, when I sleep some times my hands and arms go numb or tingle. My look at the world is a lot different than the way I looked at it before, and family do not understand my ways of thinking. I am greatful for the V.A. they did the operation. I am 42 years old, worked all my life, cant really work. I never no when a head ache may occur, dizzy spells will happen, or when my emotions will kick in. I now go to college so things are starting to look up. Good luck, remember you are not alone.

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by KurtsBrain, Feb 21, 2013
Thank you everyone for sharing what you each have been through.  While we all are unique, we have many commonalities.  

Approaching 2 years (3/14/11) since having Type 2 (non-malignant) tumor removed from left temporal lobe.  Well, most of it removed anyway.  Tumor removed 5 days after being discovered on my MRI.  MRI happened because I began to have "seizures" which were mysterious smells that would come about for about 90 seconds and I was unable to speak during the seizure.  Every seizure identical.  

Post-surgery was on Keppra for about 6 months, but side effects, incliuding temper-related, where not worth it.  Scent seizures, incliuding light headedness, still occur about 3 times per month.  No chemo, radiation for remaining parts of non-cancerous tumor - but continued to get periodic MRIs to make sure it did not continue to grow.

Have been successful professional.  Returned to work 3 weeks after surgery.   Seems like things are catching up to me.  Had the typical memory lapses, both long and short term.  Attention span limited at times.  Feel like I am not doing good work, not as social in the work place.  

Recently had type of IQ test often conducted with brain tumor (especially chemo patients) to attempt to quantify where things are working/not working.  Again, memory seemed to be my major issue - but still awaiting the results.  Just looking for a solution.  Something to help me feel "normal".  Don't want to experience the seizures, don't want to feel light headed, want to have a memory.  

Very greatful things have not been worse - very lucky indeed.  

Wife also felt lucky, had affair 8 months after my surgery - going through divorce that essentially leaves me alone, get to enjoy my teenage kids on weekends.  Feel alone, but glad I discovered this MedHelp site to at least allow me to communicate with others.

Thank you!

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by shaz66, Mar 08, 2013
hi ,on dec 3 2013i had a massive seizure going in and out of it  lasting about 45 minutes. I have never had one before ,i had been having headaches forever,always had migraines as a child .so when i started to have headaches more often as an adult .I am 46 now ,i never thought nothing of them .   just always seemed to carry paracetamol with me not thinking anything  of it.  Had CT  scan it showed left frontal meningioma which i was devastated,dr said could of been there for at least 4 years,but thankfully it was  benign .It was removed 16 days later.And i was put on declamecazone steroid tablets ,to take swelling around it down.Was told i was lucky to have survived seizure,as i was put in resus for 2 hours ,and my family in  relatives room  ,the surgeon said ,it was the size of  an orange.   i agree i feel like the recovery is so hard to come  to terms with,i still cry everyday,cant get to grips as to whats happened to me,and feel like a kind  of isolation,where the only way i can  explain is, that i should be fine now ,and on the road to recovery,but actually i feel far from it,  im not alone but feel like no one understands who hasnt been through it ..........i mean someones actually messed with my brain..HOW ARE WE SUPPOSED TO FEEL  I.....well there  you go thats my moan for today.And id like to say i think the only reason i came on here is because i need someone to understand,and ive had a  really bad day today .does anyone know why i have the last few mornings, started to get the numbness in my hands ,like a couple of you said you have, I know god was looking down on me that day ,and I now go to church .        shaz66                                                                                        

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by obwan1, May 16, 2013
My husband is 71 years old, fit and an avid cyclist. He had brain surgery 5 weeks ago for the removal of a benign tumor the size of a lemon. Absolute shock to us as I came home from work to find him on the kitchen floor, blood all over as he had face-planted and split his nose open when he fell. He was unable to get up as his left side would not work. I got him to ER thinking he might have had a mini stroke. They did an EKG and Cat Scan since he hit his head within the first 30 minutes of us getting there. It was there they discovered the mass on his right side which the doctor feels has been there several years. Then MRIs and more testing.  He had surgery within 36 hours. 40 staples across his head. He had no headaches or any signs leading up to this.  He is doing fabulous. At 4 weeks he was back on his wind trainer in the garage and is up to an hour and half already. Scaring is almost invisible.We go to the neurosurgeon next week for his 6 week check up. I have no doubt that he will make a complete recovery.
I wanted to put this out there so someone who may be having surgery or knows someone who is will realize it does have good results as well. We have a good core group of friends and relatives that continue to visit and check on us.

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by cole5149, Jun 17, 2013
Hello Everyone,
I stumbled across this website because my hands were shaking.Its been 44 days since my brain surgery.I had meningloma. I found it by accident .I also had a angel. I had no symptoms. I was very blessed. So decided to have it removed by God from Jefferson Hospital in phila by Dr Judy.I cried the whole time before surgery and being a woman thinking about my hair.Well since God was taking it out he didn't have to shave my hair.How amazing is that. I'm getti g ready to go back to my second job Tomm selling cars I also own a cleaning service.After reading all the blogs I am very fortunate.Im extremely outgoing with a huge heart.Ive been a single mom for 22 years.I will say that going through this experience has given me a new lease on life. I realized really what's important. A man that I've been dating for 5 years I was always pushing him away thinking the grass was greener.Im here to say it isn't and we are more in love today then ever. He's got my back and loves me so much.So far I seem to be doing great the only symptom I have is my hands are shaking.My memory is good. It's been six weeks in recovery headaches and blurry vision but has all turned back to normal. I went to doctors last week and he gave me the okay to go back to normal living.Isnt this amazing brain surgery as big as a egg and 8 inch incision and life is grand.If I can be any help to anyone any time please contact me ***@**** I wish all a speedy recovery and bless you all
Nicole

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by Carol1011, Sep 04, 2013
Island lady, I know how you feel. I am 7 mos. post op for benign tumor on my cerebellum. It's true what you say about everyone (surgeon especially) thinking because your tumor was benign, you are just A-OK. I have dizzyness and nausea most all the time. My docs just keep giving me meds to offset other meds and I end up worse. I've pretty much stopped taking everything except my maintenance meds I was on before the surgery. Seems the less prescriptions I take the better I feel. But I can't beat the nausea (and dizzuness) which is the worst. I can't stand the constant nausea! I am also fighting the system ( in vain it seems) for disability. They don't seem to care that I am 60+ and have worked my whole life since I was 16! My husband was wonderful during and after my surgery but now gets so frustrated with me, he leaves the house for hours and hours at a time just to get away from me. You are right.....NO ONE UNDERSTANDS!

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by robin11one, Sep 11, 2013
Wow, I am reading this and feel so much compasion for all of you. I too had mengianoma. For 8 years I knew there was something wrong.  I'm artist and of course have no insurance so I was affraid to even look into it.  Untill I had an acident and I had to look. They gave me a scan in the emergency room and everyone was so concerned.  I was in so much denial. Even if there was a problem I couldnt pay any dr bills so I just ignored it... I was then lucky to get a job with insurance. I did my best to walk a straight line. To dress myself to get up in time to focus enough to acually be productive. Honestly, I don't know how I got to work.  I always feld like I was under water. Untill one day I fell on the bus. Another trip to the emergency room but this time I had insurance. I could get an MRI.  And there it was a walnut size tumor right on my brainstem. Wraping itself around all the nerves in my spine.  My eyes, my balance, walking ,speach and then swollowing was seriously being affected! I felt so trapped. My body was being takenover by this walnut.
On Jan 30 2011 I had it removed. 11 hrs in surgery. That was almost 2 yrs ago.  I still have dizziness, Electric jolts in my head.I feel like I stumble around like I'm drunk. Its hard to talk with my toung swollen and raw. I don't heal. My whole imune system is shot. I am on heavy narcodics. I feel tired. My hands hurt.  My Dr said it's a withdrawl symtom.  Thank God! I thought my muscles were messed up. Slowly I am feeling about 70 % myself.  I begining to think that thats as good as its going to get.  I still have severe pain without meds and am affraid I may be on them for who knows how long.  People are tired of hearing about it and so am I. I am so gratefull to find this blog.  My long time boyfriend is tired of it. He's been patient and paying my bills, but he is angry and feeling trapped. I really hate being so dependent. I have had no luck getting on dissability, yet.  Yup no one understands!  How can they. Life as we knew it had changed, maybe forever.My Dr Said I be back to normal in 3 months. That pisses me off! Good Dr. terrible human being.  I guess it was a trade off.
He said I would be in a wheel chair in a yr without the surgery. That makes me lucky, a sucsses  story. Right?
  

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by miracleman03, Nov 09, 2013
I am only 29 I found out back in March that I also had a meningioma benign brain tumor about the size of a baseball. By the time I had surgery I could no longer use my right arm and could barely walk I was so crippled. After surgery I was completely paralyzed on the right side of my body. Instead of getting down about it I became optimistic and kept pushing myself to keep getting better. I was able to get my arm back but I still have very little movement in my right leg I am able to walk using a cane and wearing a AFO brace. I just keep telling myself it could be a lot worst because 4 years earlier I was crushed between a pickup and a semi the doctors told me I was lucky to be walking let alone still alive. I am also having problems with partial seizures because of the brain surgery. My doctors have all told me that if I don't get the rest of the movement back in my leg by one year from the date of surgery that I should plan on being disabled the rest of my life. Just keep pushing yourselves and don't give up I am not gonna let this take me down. I figure if I can be crushed by a semi and walk away I will be able to come back from this too no matter what the doctors say.

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by LVGirlRN, Dec 17, 2013
PLEASE MAKE AN APPT AT A  PAIN DR OR PAIN MNGMNT CENTER. LOOK ON THE INTERNET OR CALL YOUR INSURANCE PROVIDER FOR A NAME OR LOCATION. You can also ask your neurosurgeon for meds for nausea. There are 2 choices, but ZOFRAN is the best and the most effective. It should entirely eliminate your problem and you can be comfortable! I also suffer from chronic pain. The meds do not give me nausea, luckily. I may have brain tumor surgery in my future... A lot of what you are experiencing is what I experience now.. so I know how you feel! Its very frustrating.. especially the stuttering and the word or name substitution for another that starts with same letter but its a different name or word. Ha! I asked for an ELEPHANT yesterday instead of an envelope

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by Sarah258, Jan 27, 2014
Hi everyone. Any advice,I would be most grateful, my daughter had a brain tumor removed in July 2013, she flew through the op and the recovery, unfortunatley she had to have another tumor removed 16 weeks later, this time her recovery is not so good,she's flying it most days but then there are bad days were she is just so sad, she can't understand herself what is wrong with her,it's been 9 weeks since her second op and I don't no what is wrong with her!!!! I'm beginning to think that she might be suffering from depression after the op, is this possible for a 10 year old.

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by sxubair, May 28, 2014
It is feeling lot of pain to write that my loving wife has been diagnosed as benign brain tumor in March 2014 after sudden seizure at 23rd March 2014 in night. Firstly she was given energy providing medicine to remove anxiety, but when I contacted to a neuro surgeon and getting couple of images of CT Scan and MRI then it was absolutely confirmed that she has benign brain tumor.
I had no life without my loving wife whenever I listened terrible statements of doctors, but I decided to relieve my wife from this painful life and taken decision for her operation.
After 1 month and 20 days later she was operated at Liaquat National Hospital Karachi and with lot of prayers from lot of people operation was successfully done.
But these 50 days were the worst days of my life. indeed I was forgotten even to smile and my daily intake badly reduced.
I lot of love to my wife and without her my life is colorless. May ALLAH SWT keep her happy without worries and without any painful and restless life.
Amber....................be happy party.
Syed Zubair Ali.


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by ridgestayer, Aug 01, 2014
I had brain surgery a year ago tomorrow. Surgeon thought it was a cancerous tumour but was benign. I went back to work after 4 weeks but took naps after work and slept most of the weekend. Just now feeling about normal and gaining energy day by day. Neuro says prozac helps with energy. Ithank God for all who were there for me and the blessings I received.  Bless you all and hope everything is as well for you during your time of sickness. I had swallowing problems, memory issues, migraines with visual spots and cranial pressure behind the eyes. I had gotten glasses and it just made me nauseated. I was ptesumed to be having panic attacks and switched doctors. It took a couple of years I thought I was beginning to think I was going out of my mind.


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by dreslady, Aug 06, 2014
Hello All,
I too, had a brain tumor removed on July 2,14. My tumor, as well, was benign. Then, on July 17,2014, I had to have another surgery, to drain the fluid off of my brain. SO, within the past month, I have went thru a lot. Yet, one thing, I can tell you is I am blessed! I started off having real bad headaches. I finally had a cat scan, which showed I had a golf size tumor on my right side. I have days Where I am fine, and then I have days were I get depressed.On my bad days, I just want to cry. No one really understands, what u are going thru. Going thru, all the motions and different feelings. It was Nice to read,  about others going Thru the same problems.  God bless u!

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by JayCeeVee, Aug 11, 2014
My daughter was admitted on emergency to a local hospital here in TN, June 13, 2013 after having a seizure at work.  She had another seizure in the ambulance, then a third in the ER. Diagnosis was  brain abscess in left parietal lobe with 48mm inflammation caused by step from unknown origin. After brain surgery, It has been a long road back, with pain in right arm and shoulder, extreme anxiety, and med reactions, and finally after many months the inflammation has dissipated. For the last month a so, she has truly gotten so much better. Sure, she still has headaches and some anxiety but we are feeling so fortunate to still have her in our lives.  Tomorrow is her 54th birthday, this angel is my only child and I am so thankful to God to see her happy again.  



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by lynz300000, Aug 20, 2014
Hello. I was really thankful for finding this website, i too, had a brain tumor. It was removed two months ago. And thankfully, the doctors said it was successful. Now, everything feels like normal again. I think i survived it because i have prayed to God to keep me better. And i praise and glorify him after the operation. I always thank God for giving me a normal life again. Truly, God always listens

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by Robinjr, Aug 25, 2014
I was happy to find this page too. I had a craniotomy 2 years ago. I had malt lymphoma around the brain and a tumor in the left frontal lobe. I had full head radiation. Two years after the surgery I am having short term memory loss, blurred vision at times, hyper sensitivity to sound and light. Sometimes trouble even writing my name. And I can take a nap anywhere. I quit taking all the Meds the Dr.s gave me. I only take gabepenton for pain when needed. I feel better without all the Meds. I think I will just have to learn to deal with the changes. I am happy to say I am cancer free and just blessed to be here. I wish everyone the best.

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by nitaboo72, Nov 01, 2014
  By  Nitaboo.,;          Hello ,my story is. The same yet different. In 42 years, Of age been having headaches

And fear for years itwasnt untill I loss my memory that I went to  
The Emergency room .I  was diagnosed with a bening tumor on my left side
.my tumour had been growing for ten years and was caused by depo-prevera
My surgery lasted 7 hours .my family was warned that thatmy central nerves symptom
Memory,along with the use of my right side.of my body .would have to be addressed
I would be in therapy for month .April 17th my surgery Praise GOD was a success all but 10% was removed
I never sleep I woke up minuets after being closed up,.began Radiation the next month 6 weeks
Now 7 months later my eyes are burning like fire ,my head hurts ,all day,Its hard to lift my right arm
I took my self off of keppra (don't like the psychosis ) The eye intitute won't call me back and because
I look healthy no one takes me serious .I mustsay I'm Blessed but,I'm in pain I live in Pittsburgh Pa the united State best medical place yet  I'm not rich I'm a Black single women ,.Maybe that's what makes my eye doctor not return my calls .and nobody has any real Answers I feel like a test dummy..That can't see nothing but GODS mercy and Grace...Thank you for listening. But .Honest,y I need a job .so very bad ..
If anyones out their from Pittsburgh Pa that knows of a pisition that dosent require to much reading,  lol

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by thehippmom, Nov 08, 2014
I had a craniotomy in January of 2014 to remove an angioma. The decision to remove it was made after it was varifief that the weird feelings I had been having for years were actually seizures. The episodes were getting more frequent and longer.
The surgery went well ant the only meds I have been on is a seizure med and an antidepressant.
The past several months things have really started to get bad. Some of the things I just attributed to surgery like, being tired, blurry eyes,
Forgetfulness,  were a problem, but I thought they'd get better. Not only are they not better, they are worse. I can't remember anything. I've written checks wrong, I can't remember how to cook things I've been making for years. I can't even follow a recipe that's in front of me. I am afraid I will loose my job, my memory is so bad.
I feel like I am no longer ME. My family is supportive but I don't want to scare my kids and worryy husband. I hoped it was a medicine side effect, but maybe it's from the surgery. I just feel so empty inside. Where did I go???

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by KDelphi, Nov 22, 2014
I am so nervous about this.....

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by akaPollyAnna, Nov 24, 2014
I had a benign tumor removed from my right temporal area July 31, 2014, so I'm approaching the 4-month mark.  I may ask about some other things later, but one of my first questions regards something I don't remember seeing anything about, either in professional publications or chat rooms.

My surgery was 8+hours, plus the 2 or so that I was in the OR before the surgery actually began.  The most pain I've ever experienced in my life was the cramps and pain in both legs for about 1-2 weeks, beginning the end of my second week post-op.  People seem surprised that this is what hurt ... or that my legs hurt so badly.  Has anyone else experienced that kind of pain?  I have thought (and still think) it had to be associated with the surgery.  Having been strapped to the OR table for such a long time?  Nerves misfiring as they try to talk to each other?  Or just me being my atypical self?

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by fabricguy, Nov 30, 2014
i had an 8 hr surgery over five years ago to remove a hemangioblastoma tumor...surgery went great, home in four days..back to work, etc...recently though, i am experiencing something i can only describe as my brain just wants to shut down and i have to close my eyes and nap...i experienced this for awhile after surgery, but mostly went away... but now, this sensation is back fairly regularly..wierd and annoying...anyone experience this? dr. just says "it can happen" and to rest when it comes on....anyone experience this?

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by Interestedco, Dec 11, 2014
Hey,  
My brother in law had a brain tumor removed last week and was fine.  Yesterday he had a seizure and fell.  Now he can't feel anything on his right side and they are doing another surgery today to remove the swelling in the brain.  Has anyone went through this?  Are the seizures a side effect of this surgery.

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by nomolos1974, Dec 31, 2014
Hi,

I have an oligodendroglioma grade 2.  What can I expect if it recurs symptom-wise?  Will it recur as same grade or higher.

Thanks

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by momplut, Jan 03, 2015
I had oligodendroglioma grade 2 removed in 2007.  I then had 13 rounds(months) of chemo(pills).  I went back to work less than 1 month after my second surgery in July 2007.  I was able to work for almost 5 years after my surgery.  The headaches, memory loss just became too much for me.  MRI's every 4-6 months after that.  I have my next MRI/checkup on Jan 13th and I , once again am afraid.  Was told that "as much of the tumor as possible" was removed from the right frontal lobe.  Stable evidently doesn't mean gone.



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by FluidMaster, Jan 07, 2015
Hi Momplut,

Our son (18 y.o.) has just had a grade 2 Oligodendroglioma removed from the Right Frontal as well. At first they said that they had removed all of the tumour, but later in the week they came back to say that they had found a microscopic "spec" on or near the artery. They now want to prep him now for radiotherapy to radiate the surrounding good cells "Just in case" (!!??), which we find disturbing because he has recovered quite well from the operation.
Did you have any radiotherapy as well as the chemo treatment or just the chemo? And what have been the most noticeable changes for you.
Best of luck to everyone's recovery.

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by lmlenz1, Jan 09, 2015
It's nice to know I'm not a crazy person! I had benign meningioma remove  3 years ago.  I have had a headache and neck tenderness ever since.  I still sometimes if I look up or turn my head too quickly get dizzy.  And yes I am different also.  My memory..short term..has definitely been affected.  When I've asked neurosurgeon. .I get the standard "it's all in your head" answer.  It is frustrating.  But I am here!  A year and 1/2 ago I had another surgery to replace/repair (not sure) the plate in my head.. so
I guess what I'd like to throw out to you folks..
it (the sight) seems to be acting up again.. I'm wondering if I could be allergic to the metal?  Everything I read says..highly unlikely.  But they say brain tumors are rare too.  I've learned..anything is a possibility.
God speed everyone in their recovery process!





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by BKanealy, Jan 23, 2015
All,

I had a meningioma tumor removed from my left frontal lobe on 4/24/2014. Ended up with a midline brain shift due to this crazy thing. I am doing much better, but right now 1/23/2015 my left frontal lobe feels weird. It's not painful, it just that it feels like it's "turning"? Post surgery I had a 1 centimeter gap between my brain and my skull. I haven't checked with my neurosurgeons office yet, but I'm wondering if it's my brain healing or what? If anyone has experienced the same thing please let me know. Thanks!!!

I hadn't heard of a craniotomy before they performed the procedure. For all who've had this affliction, please be strong.

Brian

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by shawhmarie36, Jan 26, 2015
Hello my name is heather i had cyst on my brain behind left ear. I had tp havr brain surgery to remove it and csf too. Cyst was 4.0comx2.2cmx 3.0 cm.i had surgery nov10th 214. I had a plate put there and titanium. Screws because thinning of my left side skull. I am still in pain my face swells cant feel my hands in morning. My legs are numb from above my knee caps and down. Shooting pain gowing oyut my feet. Cant move my neck. Still on meds nausea. And still serve spasm.no energry and gained 15 pounds ftom surgery cant hardly see still. Drive a forget were i have to go.  And. Cant remeber full details of anything. Cant climb stairs to well. Sleepies nites cant put pressurd on left side brain.loss focus no more mulit fuction. Snappy no.patience and cant handle big crowds to long cant stand long or lay to long cant soak bath feels like my head is gping to fall off my neck.irritable alot. I want my life back and cant go in big stores to hard physically shopping a nite mare for me . After shopping im laid out for days, tired akot bags under my eyes. Does anyone feel this way. Please need advice

s

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by shawhmarie36, Jan 26, 2015
And i still csf will always have and have to be continue monitor bu brain.aurgery for ever he said cause their is still fluid buolt up ans have to pay attention to look out for ceasers. So how long does this last i hope last forever need a life back.

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by KindnessforKay, Mar 14, 2015
My mom had kidney cancer and returned as a cancerous  tumor in her sinus, around her optic nerve and pressing on her brain. She had a brain surgery to remove the cancerous tumor in February 11, 2015, was in the hospital for 8 days and then came home. Was doing good and had a lot of energy until the steroids wore off. She then came down with an infection Feb. 28 and had to go thru another surgery to remove part of her skull plate and put on antibiotics for at least 6 weeks for the infection.  She now is weak in the knees at time, can be stubborn at times and not doing any of her exercises, or most tasks you asked of her. We also notice that at times she seems to be like normal and then like she has a fat tongue or drunkin, state. Is this normal? Will this to pass? Was the first surgery recovery masked by the steroids? Is this the real healing process for her? Thanks for any ensite.

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by beltone, Mar 24, 2015
HI my name is April I had a seizure the first week in December 2014  went to ER they did some tests and then an MRI Found a benign meningioma brain tumor. I went to the doctor the next day and he said yes I have a tumor that looks to be a slow growing one but has edema and swelling so needs to come out . So I got me insurance a week later then made my surgery appt on January 16th of 2015. I was in the hospital for 7 days then moved to a rehab for 7 more days then cried to go home I couldn't walk I was depressed I been on keppra since then. I went home and had in home nurse and therapy come twice a week but my nerves were not coming back I finally went from a wheelchair to a walker now I'm walking on my own but not right I walk with a limp I just started outpatient therapy and started back work which I sit at my desk so not much walking needed. I'm very depressed cant sleep my left leg nerves are not coming back and its really depressing me. Tomorrow I will take my last keppra pill bc I have been winging myself off of them for the past two weeks when I went back for my follow up I still had edema and bleeding on the brain from surgery I'm wondering if that has anything to do with my nerves not coming back yet..I'm still having headaches and vision and memory problems . Has anyone had the nerve problems with the left side from hip down? My tumor was front lobe tumor I had a lot of bleeding durning surgery. I go back in 7 weeks for my next Mri. Any information would be helpful thank you!!

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by taishap, Mar 31, 2015
I had a benign meningioma removed on 3/25/15 and now less than a week later i am having a lot of anxiety and my mind races.  I had experienced major personality and mood changes from the tumor itself because it was pressing on my frontal lobe but once it was removed my mind felt clear and i had this sense of pure happiness but the anxiety has been awful so far.  Anyone else have similar experience or know if this will go away over time and I will feel normal again?

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by Aditigarg, May 20, 2015
Plz help me my friend is suffering from brain tumor on craniophrayngimas I need best doctor for surgery plz help me


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by cruizer72, May 31, 2015
I found this because I still have pain on the back of my head and neck, I had an acoustic neuroma brain tumor removed in 2009.  After reading all the pain and problems you are having, my problems are not so bad. I wish that you all have healing and improvement in your symptoms.
I was told that "if you have to have a brain tumor, an acoustic neuroma is the best kind".  I think they may be right.  You are right that we are not told of the problems we may experience, maybe for life, after having a brain tumor removed.
An acoustic neuroma tumor is in the 8th cranium, which is your inner ear. I did lose my hearing, but at least I did not have paralysis is that side of my face. It was close as that nerve was squished flat like a ribbon, but it pealed off with damaging that nerve. I'll tell you what after effects that I still have. My right side of my head is half numb, a doctor stuck a big safety pin in it and I didn't feel it. Through the night I get pain on the back of my head and neck, it wakes me up. If I get through the night with minimal pain, I have it when I get up for the day.  If I cough a lot, or bend over a lot (cleaning or exercise), I get serious pain. After surgery I got migraines, but now only get a few a year.  Sometimes the pain is located in the hole in my skull where they went in, that pain is really bad.  Years ago I did have sacral cranial physical therapy and that really really helped with the pain.
I have balance issues, the tumor took all the balance on my right side, I couldn't walk after surgery, I had to relearn that.  I can't walk in the dark or if I can't see where my feet are going. I have nightlights everywhere and carry a flashlight at all times.  I also have ringing in that ear at all times but am lucky that I am able to forget about it most times.
If you have dizzy spells (I only had a couple of seconds that I felt loopy when on uneven ground) and sudden onset of ringing in your ear, you should get checked for an acoustic neuroma tumor. They say it grows slowly, but I found out about mine in September 2008 and didn't have it out until April 2009, and it grew quite a bit in that time. If I had gotten it out sooner, I probably would not have lost my hearing. I couldn't get it out sooner as my Dad got real sick and I was helping in his care, he passed 2 weeks before my surgery.
All in all, I'm glad to be alive and I have learned to live with my problems. My sincere wish for you is that everything gets better.

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by TRAXY_1968, Jun 21, 2015
My name is Tracey Hawksworth I was diagnosed with a brain tumour on 31st July 2013...I had it removed  on the  7th August 2013...mine was a benign grade 2 menigoma. ...I had to be followed up with 30 session's of radiotherapy. ..as it's a type  that is likely to  regrow with being a  grade 2...I was paralysed down my right side before and several weeks after my operation. ..I had to learn to walk. ...dress myself. ..and write  again...I had no headaches  after my surgery  and  did not need painkillers. ..I had 65 staples  in my  head. ..these were removed 9 days after my operation...it's been 22 months since the operation. ..my eyesight has started  to deteriate. ..and also I've started to have constant headaches. ..I'm just hoping  it's not coming back....the area where the operation site is feels like it's sinking into my brain. ..where  the insitions were made  seem to be getting  wider and deeper Is this normal????. ...they say time is a healer but is it. ..I never had counselling. ..as they say  it supposed  to help after traumatic  surgery iv never felt  the need for it...having my surgery has left me with a seizure disorder iv had 2 big seizures since my operation. ..The last seizure was in November 2014 ...I have what you call atomic seizures starts in my right leg and travels up the right side up into my brain...I'm concious throughout this and i feel zapped when the seizure has ended...now they upped my medication from 500mg of keppra twice a day to 750mg twice a day. ...Some days i feel depressed and seems like I cry for nothing ...The medication  can make you feel like  this...I know what people feel when they go through this ...now I take each day as it comes  and value life  to the full.

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by malzz, Jun 22, 2015
hi all, my mother had brain tumor taken out last year . 100% of it was taken out . But sadly, she is constantly fainting. Suum1 has to be with her 24 hrs cz we are afraid that she might faint... and whn she faints she jerks a bit.. unsure if  its a seizure or not. and worst case she has asthma too. my question is.. will she keep fainting 4ever? i pity my mother.. she has gone thru alot and then now this? sumbody advice pls

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by cristina_weena1979, Jul 06, 2015
How wonderful to stumble upon this forum!! I am 35 and had surgery to remove a benign meningioma in my right inner auditory canal in February 2015. It was a 12 hour surgery as my tumor was pushing up against 3 different nerves.  My vision, hearing and balance were the most affected by my tumor. I suffered from vertigo, nausea, severe anxiety, vision issues, panic, sensitivity to heat and several other odd symptoms. My surgery went well and I came out with minimal damage, some of which has gotten better with time. Unfortunately in my case my struggle was far from over.  I got an infection in the bone flap & hardware and had to have a 2nd surgery to remove it all.  The surgery went well and recovery wasn't as bad as the first time, but they put me on very strong antibiotics which ended up putting me back in the hospital for 10 days!! The recovery from that is still hard.  I am back to work now but I still have daily struggles and it is so nice to hear that I am not alone. I deal with anxiety on a daily basis, especially agoraphobia.  I often wake with the feeling of my hands being asleep.  I am almost always tired and in a fog, I forget things all the time and I have always had such a great memory. It is very difficult to deal with when everyone SEES you as back to normal - but on the inside you are not the same person.  You are now a brain tumor survivor who deals with daily struggle that they will never understand. Invisible issues that sometimes are more difficult to deal with than the brain tumor itself. It has taken me a long time, 5 months since my first surgery, to feel remotely normal and I am still so far from who I used to be.

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by Starmg3, Jul 17, 2015
This is the best site. Although I'm doing pretty ok compared to others I have been in search for answers for a very long time about after affects of brain surgery from a tumor. My tumor was 8cm in the center of my brain but mostly behind the frontal lobe. I had 18hrs of surgery. Ear to ear headband scar and a metal plate in my forehead. Thats the minor part to me. It took years for me to find myself again and its still very hard to accept the "new me." I look normal but on the inside I have to concentrate really hard and a lot of times my mind is blank. I tend to speak really fast and catch myself interrupting conversations so I wont forget what I have to say. If I wait I do forget and it doesn't come back to me. I exercise my brain with reading many books. It has taken years to recall things Ive read. TV is hard to concentrate on and I cant recall movies for very long. A lot of times I will think I never saw something and someone will tell me Ive seen it. These things are minor but become overwhelming. I do weird things that I dont realize Im doing until told I'm doing them. Such as staring off into space. Which is a minor seizure apparently. I forget the same things continuously.If people aren't in the same contexts as I met them I have no idea who they are and people think I'm rude. I dont remember names well at all even with strategies. Without my smart phone I'd be lost. I have insomnia at times and sleep alot other times. Depression is a huge factor but I deal with it. I have issues with social situations I have nothing to say a lot of the time. People dont understand and say oh your fine. My mom is the only one who sees I'm not the same. I'm irritable and sometimes just mean. I can smell things intensly some days and other days I cant smell. My senses suck. I have tingling on my fingers and cant feel warm or cold temps in my fingertips. I have headaches on my right side of my head all the time and still hear a whomping noise in my ear at times. When my period is here good lord stay clear. My Drs don't agree with one another and have had me on all different meds I took myself off of aricept and depression meds. I couldn't sleep. Ive drank to feel normal cuz drunk people seem like me in my brain. I listen to people talk and wonder why I don't have alot to say. Well I have alot to say when writing/texting thats easy. I have balance issues at times and my face droops on one side and the line in mt forehead becomes more prominent when I'm tired. Glad I have hair to hide my scar but I see it everyday. Glad to be alive but its a struggle everyday and its very lonely in this slowed thought processing brain. Kudos to all going through much worse. Its been 15 years and I fear getting dimentia from the surgery in my later years. I haven't found any studies on it but it makes sense. I try to eat brain foods and stay healthy but there's no after surgery fixes. Just have to deal with it and hope for the best. I feel smart but def can't do math well anymore it really hurts my brain. Stress makes things immensely worse. Im trying to pursue  career and its taken me 5yrs part time and alot of what Ive learned I see and think I never learned it util I go back and read. Repetition helps with use of all senses but its not easy. Ive repeated classes but so determined to be an OTA to help people. Hopefully I can do it...my boards exa is next Month and Ive been studying everyday and feel like I know nothing. At least Im trying and Im living. Could be alot worse but its a never ending road and this is only part of what I deal with. Much love to you all and sending good vibes to you all! Its not a tumor he said...dry humor...

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by Tatts123, Jul 25, 2015
Aditgarg - Only just seen this - I had a craniopharangioma removed January 19th 2015 by a top neuro-surgeon called Dr field in Orlando, FL. As I'm sure you know, they are pretty rare, and although traditionally considered slow growing, mine was fast growing. Along with a top ENT surgeon Dr Spector also at the Orlando hospital they removed it completely via the nose.  Amazing team, the care I received was second to none. Dr Field is the leading neurosurgeon and the Florida hospital in Orlando has the greatest sophisticated equipment available.  Dr Field is such an expert, he trains other surgeons.

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by Hartley73, Jul 26, 2015
Help!
i am going to have my meningioma removed on 5th August 2015. I am very lucky to say that yes it is benign. Unfortunately it has already stollen the hearibg from my left ear and causes virtigo and balance problems. I am of course nervous about the upcoming surgery but to not worry my friends and family I constantly repeat "it will be ok" ....but will it? After reading all the above posts I am not so sure. I would be so greatful of any words of advice x

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by Simone_25, Jul 27, 2015
Hartley73 - I wish you all the best and of course it's normal to be nervous but what helped me is to turn all those feelings into strength, courage and determination to get well :)

Hi my name is simone, I'm 25 years and was diagnosed with a medalablastoma last year so had to have an emergency operation due to having hydrochephalus then a week later had the tumour removed.. So it's been a year and the tumour showed it was growing back though it didn't give me the same troubles as the first time I still had it removed recently and its only been a week since the operation and even though I'm staring to do regular things Im still getting headaches and feel a little off balance more so than last time... So I just wanted to confirm that this is a normal reaction and be gentle and patient with yourself.



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by Hartley73, Jul 27, 2015
Thank you simone_25 its been a blessing to find this site at this time. You have been through so much and only one week later you are on here answereing my moan...puts things into perspective for me. I wish you a speedy recovery and you're right perhaps i need to be gentle and a little more patient.  X

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by prettyeyes96, Aug 03, 2015
Hi, my BF had his brain tumor removed July 22nd. This was his second surgery since they couldn't remove all of it almost a year ago. His cousin tells me the surgery was a success in removing it all. My boyfriend is in another country so I could not be there, and also I am caring for an ailing family member, so his cousin was keeping me updated. My BF told me before his surgery that his doctors told him that he would be in an induced coma and in intensive care for a few days so that he could be monitored. His cousin kept me updated regularly and always sent me msgs early in the day, But on the 25th of July only a few days after the surgery I didn't get an email from him by 8pm so I began to worry and panic that something may have went wrong. So I emailed his cousin  and asked him to not email me any more updates and that when my BF got better I knew he would contact me himself. I lost my grandma recently so I was just so afraid to hear bad news and was worried that his cousin didn't email me because something may have happened, so now I've heard nothing since the 25th and I'm just hoping and praying that my BF is ok. I don't know much about brain surgery so I don't know the chances of something having happened to him during his recovery or not but I'm praying he's ok and recovering well and that he will contact me when he is able. And I will also pray that all of u will continue to heal and recover as well

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by prettyeyes96, Aug 03, 2015
Also my BF is 21 so I have heard that, that's a good thing going for him but now I'm not really sure or not

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by MBeno, Aug 04, 2015
To Hartley73 - I want to wish you the best tomorrow - I am eight years out of surgery and also had severe balance and other related issues. You will come through with flying colors and would like to share with you 2 things that were told to me that proved to be helpful. One, although cliche but really helped me focus ( take it one day at a time ) and before you know it your recovery will take shape and you will make strides although not always in a straight line it is ok and you will get back to yourself. Second, there is going to be a disparity between what your body can do and what you want it to do that difference changes over time and again you WILL get back to yourself  - I called my Dr. many times after my surgery asking him if this is where I am going to be in terms of my recovery( as I wanted to manage my expectations) and he assured me and was right, you will get back - it takes time - so if I can share that with you it will help reduce your anxiety and you will progress even quicker. Simone has great advise in telling you to channel your nervousness into strength and determination - she is WISE - again want to wish her and you the very best!!! - Mike
    

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by Whormsie, Aug 14, 2015
my husband had a benign meningoma removed one month a go yesterday from the lower right side of his brain. He opens his eyes when you call him name but is still on breathing assistance. Is there anyone out these who can give me an idea of how long this will last or who has gone thru this and can give me an idea of when he will wake up totally and start to respond. He is on a treak collar at the moment and is breathing on his own nicely with that. Before he had the surgery he was a happy go lucky dad if five with just a small bit of dizzyness and a headache once in a while. Is was a bone mass and his surgery took about 12 hours.

Thank you so much i feel so alone with this and no one can tell me what to expect. They are suppose to be moving him to an LTAC facility soon. While he get more help with this then in the ICU?.

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