After Surgery for Low Grade Glioma

mabelank · New User Joined: 13 Apr 2009 Posts: 6

My husband (29 yrs old) had a subtotal resection with the pre-diagnosis (it will be certain tomorrow once we get the pathology results) of low grade glioma in his left temporal lobe 10 days ago. He has no physical restrictions however, there is a huge decline in his intelligence along with major personality changes and verbal memory loss. It's like he has a become a totally different person, a 6 yr old stubborn boy. He has almost no short term memory, he keeps repeating the same things, can understand only short sentences and if you speak slowly and repeatedly.
He will probably have radiotherapy for the residual tumor but I am totally confused at this point. What do you recommend we should do now? Shall we start seeing a neuropsychiatrist? I am wondering if any of you or your loved ones have gone through this and if you have any idea if these changes will be permanent. I am worried that radiotherapy will worsen these symptoms but we may not have any other choice.
Any suggestions are greatly appreciated.

brainman

Hi mabelank, I am very sorry about your husband's cancer. He is so young too!!! There are a lot of things that can be going on with his mental status. Brain tumors can affect people in strange ways. All or part of his current condition could be cause by the tumor, swelling, steroids he is taking to reduce the swelling, post-pre-diagnosis depression... What does his medical team say about his behavior/memory/personality changes? He might find help from a psychologist or psychiatrist.

Depending on the cause, these changes might not be permanent ones... just temporary adjustments made to cope with a highly stressful situation.

You and your husband are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
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Twitter: @JimHawkins54

mabelank · New User Joined: 13 Apr 2009 Posts: 6

Jim, thank you for your very quick answer. You can imagine that I feel very desperate now, seeing him behave like a little child, I feel like we will never be able to live our beautiful moments-talking, laughing, travelling- again. I sometimes wish we did not choose to go with the surgery but it's too late for that now.
He will stop taking steroids today and continue with tegretol until radiotherapy is planned. I don't know what to do, the surgeon has also told that we will "wait and see".
I hope these changes will be temporary and he will at least regain his level of intelligence, -if not his memory-back. He did not smile, not even once- for ten days and I really miss that:(

brainman

I can imagine how devastating this all must be for you and your husband. I remember when I was first diagnosed that I too felt like all of my life-dreams had suddenly been yanked out of my life. Yes, the reality is that your life will never be as you thought it was just a few weeks ago. But this need not be the end. If it is indeed a low grade glioma as mine was, your husband could live many more years. With time, he will start to dream again and find new reasons to smile. Your love for him is very important right now even if he is not able or willing to tell you that. His intelligence and memory may never be the same; mine certainly is not. But over the last 16 years since I was diagnosed, I have found new ways to live and hopefully so will your husband.

Hugs {{{madelank}}}
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

petrit · Regular Joined: 15 Aug 2007 Posts: 36

hello madelank
I am sorry to hear about your husband. My father has surgey 2 years ago on left frontal lobe from astrocytoma annaplastic 3. After surgery he had lots of problems wit memory,speech, movement,but that did improve with time even though never as before surgery. His tumor was size of mandarine so he was very lucky to not have more deficits.
As for radiation my father didnt have a problem at all with , we think radiation just helped him more.

you and your husband are in my thoughts and prayer

petrit

mabelank · New User Joined: 13 Apr 2009 Posts: 6

Dear Petrit;

Thanks a lot for your message. I really need to hear that he will get better. It may sound selfish but I miss talking to him so much that, I feel it will be enough if he gets his understanding back.
Once again, thank you...

Mama 2 2

Hi Mabelank,

So sorry to hear about your husband. I can definately relate - my husband was 24 at diagnosis, and though intitially it didn't really affect him. After his surgeries ('02 and '05) there was a period of recovery, but not too bad. The radiation ('06) didn't affect him too badly either - but with each treatment there was a period of recovery and things did get better in time.

When his tumour grew significantly last fall, he started having a number of deficits - small at first, but a wife notices. Things did get better with the new chemo and naturopathic treatment we started, however now the tumour is growing faster and it's more the location and growth of the tumour that now is causing more problems.

The decadron/steroid can cause a lot of side effects - how many mg's is he on a day? My husband HATES the decadron and how it makes him feel. His short term memory is pretty bad and he asks the same questions over and over again, and he has a hard time figuring out simple things like is ipod, the remote or checking his email. He feels like he can't carry on conversations with other people as he thinks he won't make sense and/or he can't understand them. He was extremely frustrated at first, but has now come to an acceptance of sorts - but we are hopeful that things will improve once again as they have done in the past. I guess that's my point for you, was that things can improve - sorry, most here know me and that I'm pretty long winded. Embarassed

I do hope you can see his smile again - I know what that is like too. Somehow, through all of this we have found ways to smile and it definatley helps. So do hugs, so I'm sending you one.

~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

mabelank · New User Joined: 13 Apr 2009 Posts: 6

Dear C;

I am so sorry to hear about your husband as well, I have read most of your other messages and I think your husband and your children are really lucky to have someone like you.
Yesterday; he remembered something, just a little sentence I had told a few days ago and it really made my day. I never noticed until this situation that we take so many things for granted in life. I know I should remain hopeful and I am trying to.
I hope things will get better for your husband as well. Thank you so much for sharing and yes, I give him lots of hugs during the day although every time I do that, he looks at me with curious eyes, doesn't know what to do with this own arms and keeps asking "Why, why?" Smile

baxterbuddy · New User Joined: 21 Jun 2009 Posts: 2

Hi. I'm sorry you and your husband are going through such a tough time. I found out 2 years ago that I had a brain tumor in my left temporal area. I was 32 years old. I had a biopsy because it was located too close to very delicate areas to completely remove. It was also a Oligodendroglioma grade 2. It sounds like your man is going through alot of the same things I have endured. My short term memory is terrible and my ability to stay organized is a joke. This is frustrating for our spouses and it is a real life nightmare for us. We understand that we are not able to do all that we used to do. He has probably lost his job meaning he has lost touch with alot of friends. Visiting friends and family can be upsetting if he cannot always find the word he is looking for or forgets what he was talking about. (this is me) He himself must also face that reality of his diagnosis. Please love him and support him. I imagine he has had alot of personality changes however I believe anyone would be having some changes if they were not olny diagnosed with brain cancer but also a significant disability. Please try to help him. My husband has not been very supportive and it has hurt me deeper than when I found out I even had the cancer. I now know that I can still do many of the things I did before, I just have to do them differently. I write myself lists of things to do and I plan on taking pictures of my husband getting to certain places on the computer so I can also get there even when he cannot show me again for the millionth time. If these type of helpful things work for him I think you will see him start to feel better and realize he is still a great man!! As far as recovery goes I'm sure we are all a little different. My brain was pretty fogged out after surgery and of course I was on pain meds. I started to clear up a little and then it konked out again when I was taking chemo (Temodar). I was tired but not nauseated. I was just really irritated because I could think of alot of things that needed done but I could not make my mind peice it together. I still tell myself I need to do this or that but I can't seem to put it into action. My psychotherapist that deals with patients with brain injuries reports this to be very normal for those that have damage to the left temporal area. Hang in there! You are NOT alone in this. I will definitely keep you and your husband in my prayers!! God Bless, Valerie

Phil B · New User Joined: 23 Nov 2008 Posts: 8 Location: UK

Baxterbuddy,

I couldn't have put it better myself.
I was diagnosed 18 months ago and have noticed major differences in my abilities and personality. My tale of woe is on page 1 at the moment under 'New member in a quandry'.

To all that are suffering, you are not alone and we need to share our experiences so that we can try and help eachother through these very difficult times.

My heart goes out to all of you.
Phil

brainman

Phil, I added the a link to your story in your signature block so that others can find it easily Wink

I hope all is well with you.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

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