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6 months after brain surgery..

Dec 15, 2008 - 10 comments
Tags:

surgery

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after brain surgery

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confusion

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brain swelling

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Memory

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Headache



Havent felt well lately. i feel waterlogged all the time. My head pains wont go away and I still have issues with confusin, memory and dizzy. - no meds work and I think I need to be trated for the swelling not the headache.I think I need another MRI or CT Scan becaus I know my head is still swollen-MRI showed it was in Sept and Im not due for another until next June. Hopefully I dont have a CSF leak -that wont be fun.

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by lindylu64, Apr 21, 2010
Hi, I can't believe all the others who are going through similar problems that I have. I had surgery for a brain tumor in November 2009, I'm still having these awful headaches & I think my family thinks I am exagerating the headaches, I'm not, & even though I'm so sorry to hear about your pain & your problems I feel that I'm not so alone. It's so frustrating that everyone thinks I ought to be just fine & I'm not. I think sometimes that I'm still in shock from the whole experience. A brain tumor!! I want to feel better & I know that's what we all want. God bless you & thanks for letting me vent.

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by SusanStaggs, Apr 25, 2010
I hear ya....sorry things are not going so well for you.  I am only 1 month post craniotomy for a right temporal lobe tumor and people sure are expecting a whole lot out of me.  I get my own food and drinks, but that and taking a shower sure do take a lot out of me.  You are not alone.  Vent anytime you wish.

God bless!!

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by Suzyq282, Jun 14, 2010
Hi Everyone. I am in shock reading this blog, because I thought I was crazy, I am 2 months after 5 cm meningioma was removed from the left lobe, and I have been going crazy with headaches, and scabs that seem to appear out of nowhere, I just came from an EEG and thank God all is normal but the doctors are not finding the headaches so inportant, the neurosurgeon told me to see the neurologist and visa versa. This stinks because I do not want to take drugs for the rest of my life, can anyone help with the relief of headaches, and share their horror stories. I AM TRULY BLESSED THAT I AM HERE WRITING THIS BLOG, BUT I AM DISSAPOINTED ON THE DOCTORS PASSING THE BUCK ON EACHOTHER, AND TRYING TO FILL US WITH DRUGS......IS THERE ANY OTHER WAY????? PLEASE HELP
God Bless all of you for surviving, may God bless you all.

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by lindylu64, Jul 08, 2010
Hi everyone, just a report to say it has now been 7mos. & I'm still having the headaches. There is a constant pain all the time but once in a while it gets so bad it's almost unbearable. I have asked the Drs. how long am I going to be in pain? They all say the same thing, you will hurt for a long time. That doesn't tell you much, but at least I know I'm not crazy anymore & for a while members of my family treated me as if I were brain damaged. Maybe I am & just don't know it. I still get really tired & have to rest. I can't do too much, but I have started going out to eat & shopping for a little bit & that has helped my morale a lot. I like to do those things & for awhile none of that even interested me. I believe there's hope for us but we are all different & our healing will be different too. I am praying that everyone has a full recovery. God Bless All!! Lindylu64

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by RPark, Jul 08, 2010
Like many of you have stated, I am glad I ran across this thread also. I had a blood vessel tumor removed from my skull 2 months ago, recuperated at home for 6 weeks and I returned to work 3 weeks ago full time. I never had headaches as a symptom, I just had a tender spot that was painful to the touch which would last for a while after someone touched my head and there was sharp, debilitating pain shooting to my eye.
I was fortunate to have a good surgeon, however, he failed to tell me what I might go through after surgery. My last visit, I told him that I still get tired easily and my head starts hurting by afternoon. I also find that I am unable to sleep at night, I am not sure if this is related or not. By the time I get home from work, I am EXHAUSTED. I feel like I ran a marathon, my heart even feels like it is throbbing harder. My head hurts where the incision is, as if it wants to crack open. The surgeon informed me that it is part of the healing process and the nerves returning. I get dizzy...I find that I have to sit in my car after doing 15 minutes of simple grocery shopping before getting out.
I try not to complain at work because I don't want people to think I am taking advantage of my situation and there are some points of the day I do feel ok, but the pain is so unpredictable...I can feel fine right now and not even 5 minutes later, I feel like crap. UGH! So I have decided that I may try to attend a brain tumor support group, besides the pain, I did not have a chance to really accept the fact that I went through such a major event.
Keeping you all in prayer (and thanks for listening to me vent),
RP

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by CJAL3102, Mar 15, 2011
Like  all of you i can relate had a crainotomy to remove a tumor (left side) 5 months ago still having headaches but they seem to last  for days and much more extreme.. tired too after a days work went back to work  full time 5 weeks after surg. but still have terrible pain in my knees and feet ? dont understand that either,  my family seems to get mad everytime i have a headach  they figure that part of my life should be over that i should be headach free, i was hoping it would be as well . but hoping in time it will get better but when the headaches become unbearable and i find my self taking more and more meds it does get a little frustration... I dont think any of us were prepared to hear we have a brain tumor let alone under go brain surgery it still seems like a bad dream.. hope you all have a full recovery and get the life back you deserve ( headach free)  A brain tumor support group ?  sounds like a plan for sure..
God Bless...
CJAL3102

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by emisere, Jul 13, 2011
I read this after myself having a tumour removed in July 09 this was the most frightening time of my life and i was in a really awful relationship to I am now in recovery and im still finding it really hard to cope with life day to day i don't feel im me any more. I was 25 when i had it removed and never expected it i don't no much about the recovery side of things and cant remember much about it this scares me.Im still in a lot of pain with my head and its hard trying to get others to understand which is making me really depressed i try to stay positive but its hard i often feel confused and forget things. Im glad i blessed to be given a 2nd chance in life but im finding it very hard to move on from it.

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by Jackieo108, Jan 18, 2012
I also had a very large tumor removed in 2011 May it was like a week long dream and I thank God my fiance was there. Apparently, I feel to the ground he brought me to the hospital and they misdiagnosed me with stress.  I fell to the ground again 6 hours later (don't recall any of this) it's what he told me.  They did a cat scan and told him I had a very large tumor on the frontal lobe.  It's been almost 9 months now and it can be so frustrating.  I also am happy to be alive and thank God each day.  I am a  Accountant and Personal Trainer I used to be very sharp, now just trying to get through each day.  I have episodes of being unbalanced, migranes, exhaustion and just a sense of being in a fog at times.  I am awaiting the results of my 2nd MRI now after the surgery.  I do have faith but I do not feel myself at all.  I was told to exercise and I try. Each time I do I have set backs.  My Mom has been in  the hospital 3 times last year and I am trying to be supportive to her as well.  She is my prayer warrior or used to be and Angel.  I find myself being short with her at times, she suffers from severe anxiety and panic.  Recently she has dropped 50lbs and not eating well.  My step-father is at his wits end and again  I am trying to be supportive.  My fiance has been my rock.  Of course God is what gets me through each day and my fiances support.  Just know that each of you are not alone and I wonder sometimes if I am ever going to be able to return as an Accountant.  Probably TMI, however on another subject I am wondering if any of you had blood in your stool?  I get these headaches so bad and blood in my stool was present before.  I have not had any recently thank God but it was quite scary.  While going through all this I had a good day and was cleaning out my closet and dropped a box from  a high shelf so I have a broken right thumb as well. It's healing slowly but it is.  God Bless all of you who are suffering with these post operative symptoms but as I read and this and its hard sometimes to accept we had brain tumors! It still feels like it was a week long bad dream and battling with the supplemental insurance company that claims to be there when  you need them? Well I could write a book on that issue alone. Keep your heads up and have faith. It has to get better. P.S. Yes, I also still have a very tender area on the left side of my head and deep depression there as well.  In the shower I can  see sometimes still parts of the scab washing away strange to me after 9 months.  Lastly, knowing what I want to say but cant seem to say the right thing or find the right words is real frustrating.  Makes a person feel stupid and I used to be a straight A student. My best advice cherish everyday.  God Bless all of you

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by momoftwo1996, Feb 11, 2013
my now 19 year old son had a brain tumor removed with 2 surgeries, 1 lasting over 14 hours on 7/21/11).  It was a pilocytic astrocytoma and full removal of the tumor was successful.  The problem he has now is that (Per his latest MRI of 2/5/13) "There is stable prominence of the lateral and third ventricles consistent with mild hydrocephalus. Configuration of the surgical cavity appears stable. Surrounding T2 signal abnormality also does not appear significantly changed. No new areas of signal abnormality are noted. There is a stable nodular focus involving the wall of the surgical cavity on the right, image 11, which demonstrates slight intrinsic T1 shortening with no enhancement. However, there is a new tiny nodule of enhancement involving the posterior margin, image 12. This is only seen on the axial post gadolinium sequences. This cannot be confirmed on the coronal or sagittal images. No additional areas of abnormal enhancement are identified."
What concerns me is that he has had a dramatic change in behavior recently and from everything I read about hydrocephalus, this is one of the signs.  He does not, however, have frequent headaches or vomiting or really any of the other symptoms.  What I am trying to figure out is if his change in behavior is because he is 19 or if it could be because of his condition?  Any suggestions and/or stories shared are greatly appreciated!


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by lindasong10, Oct 21, 2013
My brother had brain surgery. He had a pilocytic astrocystoma in the middle of the two love in the center. They did the frist surgery to remove the tumor and the next day he started building fluid in the head they had to take him back to surgery to remove the right side of the skull them they had to put two tubes to drain the fluid out that's when we were told he wasn't going to make it. But hours later he started to follow commands, but was bedridden for over a month. He had to get a peg tube, two shunts place in the brain ( but was two different surgeries for the shunt) and last will need to put the skull back. Now, he understand everything you say to him but doesn't talk much, still very weak but is able to walk with assistant and a walker. Do you know if we still have faith as to him rocovering not 100% but a least 90 % and how long will it take???

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