"Hi Jane. I have a very large mengingeoma and required brain surgery in August 2011. The fatigue was imediate with what my body had been through. I had 30 days of radiation during December and January. I wasn't working and took naps and rested…"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Jane Edgell's Discussions
What is your experience with fatigue and how do you handle it?
16 Replies
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…Continue
Started this discussion. Last reply by Ann Manzi Sep 15, 2012.
A funny thing happened on the way to my meningioma!
5 Replies
I know brain tumors are not funny but sometimes I think we just need something to make us smile. I know I need something to uplift me right now, so maybe you will find a little humor in your…Continue
Started this discussion. Last reply by Bonnie Nov 18, 2009.
What are your longterm deficits and how do you cope with them?
4 Replies
I have balance issues, facial paralysis and deafness in right ear following surgery for a CPA in July. I'm told my hearing will not come back. Anyone had hearing ever come back after losing it? I…Continue
Started this discussion. Last reply by Bonnie Nov 18, 2009.
What is the long term prognosis for facial paralysis?
3 Replies
I had surgery July 17th, 2009 to remove a meningioma that had wrapped around my facial and hearing nerves. My balance was very bad and could not walk without help ( now about 80% better), I lost…Continue
Started this discussion. Last reply by Jane Edgell Feb 1, 2010.
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Ann Manzi replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?
Gisela Lashley replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"Hi on August 1 2012 i got a craniotomy now is pass a month and still tired they say is due to the meds am on Keppra 500mg twice a day this is for seizures which i never had suffer until July 31 2012 my husband found me seizing and unconscious call…"
Tracey Mutum replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"I had surgery to partially remove a Meningioma in the left temporal lobe and sphenoid sinus area, unfortunately not all was removed at once due to this being very close to my optic nerve and I am still on 9monthly MRI scans & 6monthly eye…"
Jane Edgell replied to Darin Wedemeyer's discussion Confused, disorganized and I can't seem to catch up."*Yep..that's me! Sometimes I wonder if I am really disorganized or the things that were once important to me just don't seem as important to me anymore...so I don't do them. However, I do know that lack of energy has a lot to do with…"
Jane Edgell replied to Beth Rosenthal's discussion Ophthalmologist and audiologist"Virginia,
I had tinnitus and hearing loss, too before my meningioma diagnosis. During surgery they found it had wrapped around my hearing nerve. I did lose hearing in that ear but at least the ringing stopped!"
Jane Edgell replied to Beth Rosenthal's discussion Ophthalmologist and audiologist"Has anyone had the gold weight put
in their eyelid to help with closure? What are the pros and cons of having this procedure done?"
Jane Edgell replied to Beth Rosenthal's discussion Ophthalmologist and audiologist"Is there any chance hearing will come back when hearing nerve was damaged during surgery for removal of meningioma?
Would a cochlear implant help?"
abby brody replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"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…"
REBECCA HUTTON replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"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…"
Wendy Felsenthal replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"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…"
Iris Novoa replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"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."
Pam Trarup replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"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…"
Vicki Huebner replied to Jane Edgell's discussion What is your experience with fatigue and how do you handle it?"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…"
Jane Edgell replied to Vicki Huebner's discussion Going back to work"- I called the NS and asked if I could work 4 hrs per day 6 weeks after surgery. He approved 3. I called again at 2 1/2 mos and asked release for fulltime. (I was not ready for fulltime but one of the girls doing my job kept complaining about it. In…"
Jane Edgell replied to Ralph Hill's discussion unplanned MRI"Ralph, I will pray for you tonight for good results with your MRI tomorrow. Summer is coming so hopefully the kids can be outside and work some of their rambuntiousness off. Sorry about the marriage problem...wish I could help but can't...just…"
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- Meningioma- right side cerebellumpontaine angle
- What kind of info do you want from this site?
- Actually coping pretty good. I found out May 2009 that I had a tumor. I prayed that night that I would have peace about it because my 87 yr old Dad was in the process of dying and I did not want to have surgery until after his death. That occured June 1st and I had surgery July 2009. I did have peace thru the wait for surgery, thru Dad's death, and now after surgery. Am I happy I lost my hearing, eye does not blink, and right side of face does not move? NO. But I am alive, God gave me what I prayed for--peace. I do facial excercises daily and wait for a better recovery.
- What city & state or city & country are you located in?
- To hear from people with similar surgeries and how their recovery progressed and things they did to maybe help speed it along.
- How did you find itsjustbenign.org? Please be as specific as possible.
- Ohio
Comment Wall (10 comments)
- At 2:45pm on January 20, 2010,
Tonya Penn-Snyder said… - Hello, Jane. I am so grateful for this website and being able to read comments from other survivors like my 11 year old son, Trevor. As understanding as I try to be...the school and others around us just don't seem to get it! He's been through so much in the past 2 years...2 craniotomies (just less than a year apart: Jan 11 & Dec 26, '08) and 6 weeks of radiation right in between (over the summer of 2008) yet most people look at him like he's perfectly normal, refuse to adjust their expectations (so that they are more realistic) and make accomodations (at least for the time being until he fully recovers and he are totally aware of the late effects of it all). So frustrating as a mother to first help my son survive then deal with the ignorance of others! Thank God for this wonderful site!
xoxo
Tonya
- At 9:26am on January 18, 2010,
Bonnie said… - Hi Jane – that is wonderful news about your recovery! : -))
Hang in there and keep working at it. It’s those baby steps taken over time that all together make for your recovery.
The scripture I posted helped me (& is helping me) through my recovery.
((HUGS)) & prayers…Bonnie
- At 1:10pm on January 17, 2010, Jane Edgell said…
- *FYI, Thanks for your comment and asking how I was doing. I had a big boost in recovery 3 weeks ago. I was looking in the mirror while doing facial exercises...had thought about giving up on them a few days before, but decided to keep going. Anyway, I notice a slight twitch on my cheek. My husband could not see it, but I could. (I think he gets tired of me asking him to watch something.) That twitch is more pronounced now and I can get some movement if I try hard up by my eye. My mouth now has a slight turn up instead of drooping down. So I am very happy. I went to church this morning and someone that had not seen me for 3 weeks ran up and made a comment on how improved my face looked since she had last seen me.
*I like the scripture on your page.
- At 8:03am on January 16, 2010, Bonnie said…
- Hi Jane!
How have you been doing? Looks like the 6 month mark for you (yea!) – and no, I did not remember – I had to check your page : -) but, my memory is improving – I’m officially at the 2 year anniversary (as of last month).
Hope you are doing well….sending (HUGS)).....and prayers…..Bonnie : -)
- At 6:04am on November 23, 2009,
Beth Rosenthal said… - Hi Jane. I don't think that I received them. I get 1,000 emails a day so I can double check later. Can you send them again? Otherwise, I'll email you tomorrow about them. Thanks.
- At 8:49pm on November 17, 2009,
Kathryn DeDominicis said… - Jane. Thank you for saying hi. I too am newly diagnosed and am looking to share information and stories with others who can understand what I have and am going through. I too feel very lucky to be alive. Good luck working on your facial excercises - my surgery was only last December and I feel that my vision impairments, gait disturbances, and cognition has already improved 10 fold. Every day is a new improvement. I hope this finds you well. Take care, Katie
- At 3:13pm on November 17, 2009, Heather Hutchinson said…
- All went well yesterday at the doctors a small meningioma that we are going to check in 3 months. Dr Allen said he would be very surprised if it got any bigger (about 1cm).Thank you all for you kind words and support.Wishing everyone all the best and I will be spreading the true meaning of "IT"S JUST BENIGN"
- At 3:34am on November 11, 2009, Heather Hutchinson said…
- Hi Jane, Thanks for your kind words and information. The hearing doctor said it was a small meningioma but could not advise me about it as it was not his expertise. That was last Thursday. To day I finely go on to the neurosurgeon and have an appointment for Thursday 17th. Its about a 5 - 6 hour drive to get to the doctor, i am not looking forward to the drive as I have neck and lower back pain. Thanks for leaving a comment I don't feel so scared now. Will let you know how I get on. Cheers for now Heather
- At 7:08pm on November 2, 2009, Pat Krick said…
- Hi Jane,
That would be great. For my balance I found the Wii Fit balance games were great! My scores went up everyday and that kept me motivated. Physical therapy worked with me for a few weeks after the surgery but the Wii Fit was when I saw the most improvement. My physical therapist gave me facial exercises to help with the initial droop (which is gone now) and the nerves but I really haven't had much feeling yet so I'm not sure what's working. I can blink but since my eye is numb then I wasn't bothering so my eyes were extremely dry. Now the neuro eye doctor is having me use eye drops 4 times a day and that is very helpful.
- At 7:51pm on October 30, 2009, Beth Rosenthal said…
- Hello Jane and thanks for joining. I started this site several months ago because I had such difficulty finding benign brain tumor survivors, like myself. I'm a long term survivor ( but have many side-effects): diagnosed in 1985 at age 11. Besides connecting with survivors, we can exchange medical info, get support, etc. Please message me with any questions or comments. Thanks again for joining.
Also thanks for that sweet message. I hope that the site helps. Did you lose hearing in both ears? I can't hear in my left ear.It's remarkable that you sound in good spirits.
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