It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
What is your experience with fatigue and how do you handle it?
From what I read many, if not most, people experience fatigue/exhaustion following brain surgery. I'm wondering if it involves all brain surgery or is it worse depending on the area your tumor was in. So, what area was your surgery, how bad is your fatigue, and how do you handle it?
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Replies to This Discussion
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Permalink Reply by Jane Edgell on -
*I had a meningioma removed July 2009 from the cerebellumpontaine. I went back to work full time in October. I would do much better working 5 or 6 hrs a day, but have to work full time for insurance coverage. By 3 pm every day I can hardly walk and still have 2 hours to go before I drag myself to my car. My job is not physically strenuous so I don't know have those of you who are on your feet most of the day do it.
*Once home I just crash on the couch but it seems that I do get a little more energy after I have time to relax a couple hours.
*My NS said this can last at least a year or longer. From what I read some people have suffered for years with it. I find that if I do anything out of the norm one day..shopping, going to movie, etc., then the next day I have no energy at all. A few weeks ago I went to bed at 10 PM on Friday and was only out of bed about 10 hrs all weekend until I got up for work at 6:00 Mon morning. I slept most of that time.
*Any special advise you can give us fatigue suffers?
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Permalink Reply by Pam Trarup on -
No advice from me unfortunately - I had a cerebullar hemangioblastoma removed in June 2009, and still have a great deal of fatigue. I went back to work on a very graduated basis in Oct and tried to work my first whole (8 hour) days a few weeks ago. I was tired the first day, but it was my first full day since June. The second day, I came home, sat on the couch, and couldn't get up enough energy to get a glass of water. It was just like the first few days after I came home from the hospital. The next day I had terrible balance issues, which normally only happens if I'm very overtired. I went to my regular doctor, and now have a medical note saying I can only work 6 hours a day and/or 24 hours a week.
I am very lucky, in that I do not have to work full time - my employer has been great, and is determined to work things around what I can handle. I haven't had to leave work on my own, but have been sent home twice because they felt I was too tired.
I spoke with my brother today, who has a permanent brain injury and is on a pension. It took him about 2 1/2 - 3 years to get back his energy - not great news! I try to sleep 9 hours a night, I used to manage quite nicely on 7. I have balance issues (I list to the right) when I am tired. I probably should carry my cane all the time, but don't - a bit of vanity, a lot of stubborness!!
I think I should just be back to my old self, but as my family has pointed out, I had major surgery in June, it hasn't been even a year yet and things will get better. I have improved greatly, as I'm sure you have, and we just have to be patient for awhile yet! :)
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Permalink Reply by Jane Edgell on
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Russ,
I knew you would have a good response. I was talking with another member and she asked me about fatigue. So I told her I would do a post about it so we could have a lot of others responses. I think the more we hear from others the more informed we are. You know the saying "there is strength in numbers" ..well there is strength in knowing there are lots of others going through the same things we are!
Have a good day!
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Permalink Reply by Tracey Burton on -
i had an astrocytoma II taken out of my left temprol lobe , dec 11,2008 and im still tired, but it gets a little better each month.. in the beginning , i couldnt even keep my eyes open..
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Permalink Reply by Pansy Canary on -
My surgery was in the right temporal lobe and sphenoid sinus area. One way I handle fatigue is to rest for a while. If I have pushed myself too far then sleeping for hours is all I can do. During fatigue periods and sleeping I don't recall dreaming. I'm out like a light! Before surgery I had always been very energetic so, this has been a real kick in the seat. Even a cup of coffee doesn't rev me up like it used to. I return to work on the 15th and I am apprehensive. I'm going to work 5 hours a day and hopefully after a month go back full time. Gotta have the insurance. The company I work for has been wonderful. My boss assures me I have nothing to worry about. But....
It's good to know that I'm not sailing by myself. Thanks to all for the information and support.
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Permalink Reply by Bonnie on -
Hi Jane,
“All of the above”.
We’re each different in how we recover from surgery – but a common thread is the fatigue.
Following my surgery (12/7 to remove a large meningioma from left parietal area) and once home, I went thru the extreme fatigue where I was too tired to even eat (me?!). My fatigue was different in the hospital (there 3+ weeks) which is likely due to my not needing to do anything (except therapy). But once home, that all changed. It was hard to get up in the morning (I’m a morning person who used to jump out of bed at 4:30 AM - this was new to me). By afternoon, I felt like my brain and body were shutting down. I’d perk up a bit around dinner, but then downhill after that. I slept a good 9+ hrs. regularly (still need 8-9 hrs for me to be my best). I did not start back to work until about 8 wks following surgery – part time, from home.
Now, it’s 2+ years later. I still need to sleep 8-9 hrs; I still experience fatigue. But things have improved a lot. While I can still wear myself out (physically or mentally), it is not like it was, esp the 1st year. Also, I continue to work from home full time, which is a big help as I would otherwise be in a very large noisy stressful office and have a 2+ hr commute each way. I continue to do the physical & occupational exercises/movements in addition to regular exercise daily. I have come to know my limits and how much I can push myself – I do push myself to help my recovery and to improve and hopefully get back to my old energy level.
These are the things I try to do every day to deal with both mental & physical fatigue:
Get 8-9 hrs of sleep
Eat a healthy diet (lots of veggies, fruit, fish)
Enjoy something sweet as a treat every day (esp chocolate!)
Drink coffee or tea in mid afternoon if needed – and/or a snack
Drink a lot of water
Exercise
Work during early part of day (start 6 AM)
Take breaks
Try for consistency in my days
Keep things organized
Do something I enjoy
I use a little of my vacation time every week so that I am paid for 40 hrs but actually work ~36
Connect with God
Also, I am taking 3000 mg of the generic version of keppra – one side effect is fatigue/sleepiness. I am guessing that this is also affecting me.
I think you have to try some different things to see what works for you, but keep in mind that recovery will take a while. I think it comes down to listening to your body.
Sending prayers for your recovery, and ((HUGS))……Bonnie :-)
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Permalink Reply by Vicki Huebner on -
Hi Pam. Thank you for the candid note. I had a meningioma removed from the right base of my skull in January 2010. I went back to work at the end of work in March on a 4 hour per day basis. I will be on part time status until at least until the end of this month. My employer has been great, but business is business and they would like to know when we go back to normal.
Like you I have balance issues if I get overly tired. It seems like the fatigue comes and goes. Sometimes it's worse than at other times. Since you are a little ahead of me dealing with this, would you mind letting me know if you are still fulltime and what your experience has been like? Any tips for dealing with your employer?
Pam Trarup said:No advice from me unfortunately - I had a cerebullar hemangioblastoma removed in June 2009, and still have a great deal of fatigue. I went back to work on a very graduated basis in Oct and tried to work my first whole (8 hour) days a few weeks ago. I was tired the first day, but it was my first full day since June. The second day, I came home, sat on the couch, and couldn't get up enough energy to get a glass of water. It was just like the first few days after I came home from the hospital. The next day I had terrible balance issues, which normally only happens if I'm very overtired. I went to my regular doctor, and now have a medical note saying I can only work 6 hours a day and/or 24 hours a week. I am very lucky, in that I do not have to work full time - my employer has been great, and is determined to work things around what I can handle. I haven't had to leave work on my own, but have been sent home twice because they felt I was too tired.
I spoke with my brother today, who has a permanent brain injury and is on a pension. It took him about 2 1/2 - 3 years to get back his energy - not great news! I try to sleep 9 hours a night, I used to manage quite nicely on 7. I have balance issues (I list to the right) when I am tired. I probably should carry my cane all the time, but don't - a bit of vanity, a lot of stubborness!!
I think I should just be back to my old self, but as my family has pointed out, I had major surgery in June, it hasn't been even a year yet and things will get better. I have improved greatly, as I'm sure you have, and we just have to be patient for awhile yet! :)
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Permalink Reply by Pam Trarup on
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I am still working only 6 hrs a day, or 24 hours a week. I can not handle full time work on a consistent basis. That being said, I have just finished a 2nd stretch of 5 days straight, and am not as fatigued as I thought I would be. I still need at least 8 hours a night, and really have balance issues and the tingling mentioned in other forums here, if I don't get the sleep. I drove to Vancouver last week to see my son, about a 4 hour drive and I definately felt it! Things are getting better though, after feeling like I had plateaued for 3-4 months.
I am in British Columbia, and it is law that accomendations (sp) have to be made for me. My employer is great, but I know how you feel, business is business, and how can they keep giving me shorter shifts. I work for a grocery chain, and it's run with a pretty tight ship. I spoke to my manager about it, because I know that he can't keep giving me these hours, but he told me not to worry about it. I also know the general manager for this grocery chain, and he know what my situation is, so maybe that's helping.
As my family tells me all the time - it won't be a year until June 19th. We have all dealt with very major surgery here, and have to get over the healing. I really thought that I could just jump back into my life, turns out that the fatigue factor is too much, and I have had to back away from 2 organizations that I have been involved with. Things are getting better, fatigue, balance, what have you, but it really does take time!
Vicki Huebner said:Hi Pam. Thank you for the candid note. I had a meningioma removed from the right base of my skull in January 2010. I went back to work at the end of work in March on a 4 hour per day basis. I will be on part time status until at least until the end of this month. My employer has been great, but business is business and they would like to know when we go back to normal.
Like you I have balance issues if I get overly tired. It seems like the fatigue comes and goes. Sometimes it's worse than at other times. Since you are a little ahead of me dealing with this, would you mind letting me know if you are still fulltime and what your experience has been like? Any tips for dealing with your employer?
Pam Trarup said:No advice from me unfortunately - I had a cerebullar hemangioblastoma removed in June 2009, and still have a great deal of fatigue. I went back to work on a very graduated basis in Oct and tried to work my first whole (8 hour) days a few weeks ago. I was tired the first day, but it was my first full day since June. The second day, I came home, sat on the couch, and couldn't get up enough energy to get a glass of water. It was just like the first few days after I came home from the hospital. The next day I had terrible balance issues, which normally only happens if I'm very overtired. I went to my regular doctor, and now have a medical note saying I can only work 6 hours a day and/or 24 hours a week. I am very lucky, in that I do not have to work full time - my employer has been great, and is determined to work things around what I can handle. I haven't had to leave work on my own, but have been sent home twice because they felt I was too tired.
I spoke with my brother today, who has a permanent brain injury and is on a pension. It took him about 2 1/2 - 3 years to get back his energy - not great news! I try to sleep 9 hours a night, I used to manage quite nicely on 7. I have balance issues (I list to the right) when I am tired. I probably should carry my cane all the time, but don't - a bit of vanity, a lot of stubborness!!
I think I should just be back to my old self, but as my family has pointed out, I had major surgery in June, it hasn't been even a year yet and things will get better. I have improved greatly, as I'm sure you have, and we just have to be patient for awhile yet! :)
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Permalink Reply by Iris Novoa on
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Hi, Jane.
I had a meningioma removed November 2003, pressing the medula oblongata between C1 and C2, and I still have neck pain, fatigue, exaustion and dissiness.
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Permalink Reply by Wendy Felsenthal on -
Hi Jane-
I don't know anyone who has any kind of head injury that doesn't have fatigue issues.
Everyone is different maybe on how long they might have fatigue ( I call it 'fuzz') , but I haven't run across anyone who doesn't deal w/ it at least on a temporary basis(rare), but more so long term( common).
My son is two years out from his crainiotomy to remove an astrocytoma from his left frontal lobe-Fatigued as hell and fuzzy all day, most days he was that way when he was not on meds and is that way on Depakote( started about 5 weeks ago).No difference he says in the fatigue. He works 20-40 hours a week and is going to college fulltime regardless though( off for two months for summer), but he pays the price I fear, in that he has alot of headaches still, mainly from stress and lack of sleep and , well, brain being opened if you ask me...
I had my crainiotomy a year ago April to remove a meningioma from my right temporal lobe, and some weeks are better than others. I feel like I have static or fuzz in head still....my eyes, especially my right one, where the tumor was located behind, feels like its numbish or heavy and my eyes feel very weary and tired. I just recently ( 4 months-ish) have started paying attention to my sleep patterns more and find that I need a good 9 hours to feel decent, and like Bonnie says, I keep all my appointments and work stuff in the morning hours -after 2-3 PM I am toast on most days. I take that time, especially if I know I will be doing something in the afternoon or evening to lay down in bed, close my eyes and put a wet, cold cloth on them and rest for like 30 minutes. It makes a big difference to me being able to do that. Like taking a 20 minute nap. I feel like I am recharging somehow by shutting it all down for a bit. i don't always sleep, sometimes I start to dream and then wake up, but I take how ever long it takes until I feel better.
I know of some folks who have had closed head injuries and have the same issues. I know folks who have had strokes who have the same issues. I know of a person w/ MS who has the same issue. I really think the brain is very 'touchy', and isn't meant to be touched(duh, it would have a hatch there already) and messed with. Any injury to it, however it may occur, causes it to be different....For some its life long. For some its not, but maybe just 'different' from now on...
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Permalink Reply by REBECCA HUTTON on -
I had gamma knife surgery Feb. 26 for a low grade glioma on my brainstem. Before that, I seemed to always have energy. Worked out about an hour and a half, four times a week. And felt pretty good other than the headaches/dizziness. But now I just can't get over how fatigued I am. I dread getting up in the morning, look forward to getting home from work so I can nap. I nap almost every afternoon because I'm just completely exhausted by the end of my work day (even on the weekends when I'm doing nothing). I am trying to at least get on the treadmill for 30 minutes a few times a week (not working out too well) and when I do, it kicks my behind. I plop on the couch afterwards and look forward to bedtime. This is something I'm just not use to but it just doesn't seem to be going away. I used to stay up till 12 or 1am every night and get by on 5 hours sleep with no problem. Not anymore.
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Permalink Reply by abby brody on -
Jane, I had surgery in Feb. of '05 for a skull-based MNG and I think I was exhausted and cognitively challenged for a full two years. What tires me now is trying to function in a busy/noisy environment. I lost my balance nerve and hearing on the right from the surgery, which instantly gave me a vestibular disorder (see www.vestibular.org). Apparently, it's common to have problems trying to THINK while in a room with lots of people and activity. And, it makes me exhausted.
So, as I think about going back to work (I went back to college in '07) I'm wondering what kind of job/environment would best suit me. I'm guessing a quiet workplace where I'm alone with just a few people who don't move around much! Sheesh.
Abby
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