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Long term effects of brain surgery

keladavis
Posts: 8
Joined: Mar 2010

I had my oligodendroglioma tumor removed in 2008, I am still suffering from extreme fatigue and some small memory issues. Does anyone else have lasting symptoms? I am,however seizure free and would do it again in a heartbeat. Kelly

danielgharper's picture
danielgharper
Posts: 13
Joined: Apr 2010

I had a GBM, twice, and had brain surgery twice. The first time around I had some fine motor skills and coordination issues for a few weeks. I was super week, and also lost inflection in my voice. Second time around was a piece of cake. I got out of the hospital after two nights, and I went to church the third day. I went on a short rock-climb 10 days later in California (I had surgery in Vegas, but I live in Park City, UTah). I know people who have had long-term problems from brain surgery. A lot of it depends on where the tumor is. Fortunately, mine was in the right frontal lobe.

God bless, danielgharper

keladavis
Posts: 8
Joined: Mar 2010

Wow it sounds like you have done very well after surgery. Thank you for your reply. keladavis.

egerfen
Posts: 2
Joined: Jun 2005

I was diagnosed w/ GBM in 1992 and I am doing pretty well. I had surgery, radiation therapy and chemo. I have some balancing issues, but it is not too bad. I have had 3 TIA's in the past 5 years and one grand mal seizure in January and I was diagnosed w/ hardening of the arteries of the brain from the radiation therapy. Has anyone had this problem, and any treatments? My tumor was in the right frontal lobe.
Evan Gerfen

Angel8691
Posts: 2
Joined: Apr 2010

Hi keladavis - I am currently in recovery from the removal of a brain tumor and I too am very fatigue and my memory issues are sometimes quite frustrating. My doc said it takes up to a full year for recovery and it does not mean that I get full functioning back. At first, he thought that there may be another tumor in development, but that was not the case based on my recent MRI. Did you do chemo and radiation after surgery? I am asking because so far I have opted NOT to get either, due to the side effects and dangers associated with it. I also read in an article that radiation and/or chemo is not necessarily a recommended treatment as it does not have the desired outcome. The more I research this, the more I get confused :-)

keladavis
Posts: 8
Joined: Mar 2010

Thank you for your reply Angel18691. I haven't been in here in a while and it's nice to see replies. I did not have radiation or chemo after surgery. My oncologist didn't even suggest it, so I guess my choice was easy. I had chemo a few years before surgery so maybe that is why he said nothing. I don't know what to tell you about your choice. I think you are doing the right thing by researching it. It is your body and knowledge is power. Good luck! Keladavis.

single3rd's picture
single3rd
Posts: 18
Joined: May 2010

I had an astrocytoma recised in April 1998, and an oligo in Aug. 2008, both Grade II/III, and more or less in the same area - in fact, the second time, they used the same "flap" from the first surgery.

Both times, I was discharged 2 or 3 days after the surgery, and went back to work after a couple of weeks. I did suffer from cognitive deficits, exhaustion, and loss of appetite for a few months after both surgeries, but apparently was "back to normal" (or as normal as I could be!) within 5 or 6 months. Other than a recent recurrence of the oligo, I have had no neurological problems since 2008, but have been on chemo since a month after the last surgery (Temodar until last month, now PCV).

Both of my tumors were located in the right frontal lobe, and as somebody has already mentioned, if you desperately NEED a brain tumor, this is probably the safest place (other than third star on the right).

single3rd.

oystertaco24
Posts: 6
Joined: May 2010

I had an oligodendroglioma removed a few months ago (not quite 2008, I know!) - it was in my left frontal lobe, partially lodged in my speech centers. I've had six weeks of Temodar and radiation.

I remember being told that most of the side effects would disappear within a couple of months, and that much of what remained could be permanent.

I catch myself stuttering once in awhile, and my ability to remember the "correct" word for a phrase, while greatly IMPROVED (from before surgery, even!) at first, has gone down a fair amount. I also tend to forget where a car I was in is parked or where I've left something (my purse loves to walk away, for example), and I have half-empty drink cans or cups all over the house. In reality, though, my issues are small as you say your memory issues are. It's interesting to see what remains after the temporary side effects start to disappear.

egerfen
Posts: 2
Joined: Jun 2005

It is nice to know that I am not the only brain tumor survivor whose purse, Keys, Phone keep walking away....My husband is constanly want to know why these things keep disappearing and now I know why....
EGerfen

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I had a tumor removed from my parietal lobe a year and a half ago, followed by WBR, and boy, my keys and phone are always walking away. Not to mention, my keyboard keeps rearranging itself!
Deb

tommybear
Posts: 112
Joined: Oct 2009

I have a astrocytoma in my left temporal lobe - only partially resected in August 2009 - and yes, my keys love to hide (especially out in the open on the kitchen counter). And my teenage son is always laughing at me, because I say the wrong words all the time, for example, one day I saw someone vacuuming their front door mat (which was weird in itself) and I said to my son, "Gee, I have never seen anyone ironing outside before!" And then I said it like two more times before he repeated it back to me, while he was in stitches. Of course, I forget what I am saying also and have to just look at people and smile and nod.

I also do little things that some people might not pick up on. Like this morning, I was fixing waffles for my son, so I went to get a plate out and got a spoon out of the dishwasher. Doesn't sound like a big deal, but there was no reason for me to get a spoon. So, I am standing there thinking "What the heck did I get a spoon for? This isn't going to work."

So, anyhow, I can relate to everyone here and have been told that I have always been goofy. So, maybe, you are all just goofy also! :o) By the way, has anyone had any experience with their doctors NOT being funny? My neurosurgeon just looks at me sympathetically when I try to joke with him. After my surgery, he asked me what my name was and I told him George (I am a girl and my name is Michele) and he didn't laugh one bit!

I guess humor is one of the things that keeps me and my family upbeat. Sometimes you just have to laugh.

As far as other issues go...I have numbness and tingling on my right side - periodically. Sometimes I have "black outs" where I forget where I am or feel really nauseous and confused (these don't last too long, yet), I get very sleepy, especially when I am on the computer for a while (I believe the monitor triggers kind of like seizure type activity), I do have trouble staying focused on things now and catching details - like at work. I've been told that these are "absence" seizures and are common for people with brain tumors.

So, yeah, lots of weird things, not huge things, just weird things going on. Have to try to adjust to my new "normal" as they say. Sorry to ramble on....hope everyone has a good day!

zedgal
Posts: 4
Joined: Jun 2010

I had 6 wks of targeted integrated beam radiation. I still lose things, am forgetful or have "black outs". I am off most of the meds. Lingering stamina and energy issues plague me. I sick of being sick. I felt great after tumor surgery and had 100% resecction. Radiation kicked me to the curb. It's been a year since treatment and I still am having cognitive deficits and energy/stamina issues. I am beginning to feel it's permanent and am considering applying for disability. I just don't have the energy to follow through with much. I was let go from my job because of my inability to focus and be the worker I used to be. This truly is a long row to hoe. Any info would be appreciated. I would like to think there's a light at the end of the tunnel somewhere.

LauraLB
Posts: 1
Joined: Oct 2011

I just joined this website and even most of these posts about long term surgery effects are over a year old, I wanted to respond by saying I am so relieved to hear that others have had the same issues I have. I had an temporal lobe oligodendroglioma removed from my right temporal lobe in 2003. Since it was a grade 2 we opted out of any treatment deciding to save it if the tumor returned. I made another appearance in August of 2010 and I had surgery again with a complete resection. This time it was an oligoastrocytoma grade 3 so I did six weeks of radiation combined with chemo (Temodar) and then 6 months of just the chemo. I finished all treatment in June of this year. I've only started feeling strange, not focused and organized the way I used to be. I get lost driving to my mom's house which is only 2 miles away. Is there anyone out there who is on long term disability following surgery, radiation and chemo? I feel silly when I can't complete simply things or remember what I asked my teenage son moments before. I've laughed it off for a few months hoping it would get better but it seems to get worse. Even though I'm sorry some of you are going through the same thing, it sure helps to know I'm not alone:)

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