Coping With Epilepsy Neurofeedback & Counseling Associates
10% off neurofeedback training for CWE members - Las Vegas, NV and Denver, CO
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > Surgery Central



Reply
 
LinkBack Thread Tools
  #1  
Old 11-01-2013, 10:59 AM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post

Anxiety after brain surgery?


Hi,

I've had epilepsy surgery two weeks ago in the left temporal lobe. The operation itself has gone pretty well and I'm back home now to spend the next couple of months recovering. But I find some days I'm very nervous or anxious for no particular reason, and I'm wondering if anyone else has experience of this effect post-surgery, or how you deal with it?

Thanks,
Reply With Quote
  #2  
Old 11-01-2013, 11:14 AM
KatieCoy83's Avatar
Weaving the Community Fabric
 
Join Date: Sep 2013
Location: Fairview, Oregon
Posts: 114
Thanks: 15
Thanked 26 Times in 20 Posts
I had my surgery 4 years ago on my right temporal lobe. I was on keppra but I don't recall feeling different than the effects from that. I was more excited thinking they fixed me. My recover was pretty quick. I was in the hospital for 3 days after and a week after I went to a big BBQ before my cousin left for Iraq. I had to keep pressure on it so I wore a bandana. I was more so grossed out I could was my hair and get the glue crud out cause the did a quick eeg before they released me. I moved in with my fiance a month later.

I still have PC seizures from the scar tissue that built up but much better than the violent outbursts I had before. She is switching me to lamictal for anxiety and memory effects from the keppra. My issues sank in slowly for who knows why.

Could it have something to do with a bit of swelling or where they operated? With me they got in pretty close to the hippocampus so they did a ton of tests to find possible long term bad complications.

Last edited by KatieCoy83; 11-01-2013 at 11:22 AM.
Reply With Quote
  #3  
Old 11-01-2013, 11:34 AM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
Yeah, I suppose it could be down to the swelling or where they operated. My face is still pretty swollen on the left side, but it's slowly going down, so maybe that is something to do with it.

I was warned in advance that there could be side effects similar to this, mainly psychological things, but I'm mainly curious to see how long they last, etc. Still, it's good to hear yours went well, even if you're still having PC seizures, that sounds better than the main type.
Reply With Quote
  #4  
Old 11-01-2013, 11:47 AM
KatieCoy83's Avatar
Weaving the Community Fabric
 
Join Date: Sep 2013
Location: Fairview, Oregon
Posts: 114
Thanks: 15
Thanked 26 Times in 20 Posts
Now they only effect my senses and I'm alert. Before I'd start screaming, run around but have no memory I'd done any of that.

It's still in the back of my mind though. The started out of the blue and all hell broke loose for months. I'm always wondering if it'll change up on me. Doc said I could have a little PTSD but haven't really looked into it.
Reply With Quote
  #5  
Old 11-01-2013, 12:00 PM
qtowngirl's Avatar
CWE Supporter/E Hater
 
Join Date: Jun 2011
Location: northern British Columbia
Posts: 2,557
Thanks: 1,102
Thanked 1,946 Times in 1,048 Posts
welcome jimbo
mine was left temporal as well, removed 1/3 hippocampus and 1/2 of amygdala on august 9th. mostly i was excited (took me a long time to decide yes on the surg, so once i went through it i was stoked! new life!). in a way it was anticipation, and i smoothed that out by counting the days, which i started on day 27 seizure-free. it was an exciting, calming, and reassuring feeling all at once. how about a bit of background?...

what part were they removing and reason, was there a lesion or tumor or simply removing your focal area? was it a specific surgery, such as an SAH (selective amygdalo-hippocampectomy)? recovery is different for everyone and there's no standard 'this is how it has to go.'
have you been eating much?
how's personal stress?
what type of szs did you have prior?
do you have help at home or taking care of post-op yourself?

regular daily details play a big part in recovery. myself tho under massive personal stress i held on to my excitement (no damn way stress was taking me down after battling e for 20 years and risking brain surgery). i can guarantee you on that... the more smiles, pats on the back, achieving your own little goals, and respect you show yourself for the soldier you've been to go through this, the better you'll feel. it's a day to day thing (i'm coming up to 3 months post-op and not completely myself yet), but the pride you give yourself (and really, LOTS of pats on the back!) will go a long way towards the future ahead

my best EFF knows it well... soldier of two surgeries and very educated in preserving self-strength, reminding yourself that you're strong and you can do this. the brain is already looking to build new pathways and 'learn' who its new self is, it's normal to have a few highs and lows but if you can take it all in as 'i just had brain surgery it's okay to sometimes feel anxious' it can be soothing. a huge key is avoiding your usual seizure triggers as well.
__________________
For a gallant spirit there can never be defeat. -Wallis Simpson

Last edited by qtowngirl; 11-01-2013 at 12:07 PM.
Reply With Quote
  #6  
Old 11-01-2013, 12:32 PM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
Hi qtowngirl,

You got it in one, I had a lesion which they found after years of MRI scans and other tests. They removed that in the surgery, but to get to it in the amygdala, they had to remove a small part of the temporal lobe as well.

I'm not eating more or less than normal I think, just the usual three meals a day. Personal stress isn't too bad, I'm taking a couple of months off work after the surgery which takes a lot of stress off me, and all my family and friends are being really helpful, so that's not really a problem, but I do occasionally get frustrated when I'm talking about someone and I can't remember their name, or some details like that. I've been told that this memory issue is expected, and shouldn't be so bad after a couple of months.

My own seizures prior to the surgery were usually complex partials. I haven't had one since the surgery, so that's a good start. I'm living with my parents and sister, so I have plenty of help during the recovery.

You definitely make a lot of sense about getting over the surgery. I think maybe I'm just nervous at sitting at home all the time, I should get back to getting outside. Just out of curiosity, it sounds like your surgery was very similar to mine; How long afterwards did it take you to get your energy back, get back outside etc.?

Thanks,
Reply With Quote
  #7  
Old 11-01-2013, 01:20 PM
nelly's Avatar
Joined the Party
 
Join Date: Apr 2013
Location: Minnesota
Posts: 76
Thanks: 32
Thanked 14 Times in 14 Posts
Hi Jimbo and Welcome !!

Brain Surgery can be a rough journey. Like KatieCoy83- I was excited as well. mine surgery was right temporal lobe in 2003. My recovery was stressful I became very depressed headaches, sleeplessness. I felt uncomfortable in my our skin. I think it was related to Keppra. I was out of work for 5 mos. I did alot of self-help especially on depression. I started journaling, exercising, eating whole superfoods. (I still practice all)

I hope you feel better soon, I'm sure you will.
Reply With Quote
  #8  
Old 11-01-2013, 01:22 PM
qtowngirl's Avatar
CWE Supporter/E Hater
 
Join Date: Jun 2011
Location: northern British Columbia
Posts: 2,557
Thanks: 1,102
Thanked 1,946 Times in 1,048 Posts
wow right on the money haha! i still have strong intuition i see, great!, either that or we're twins in another life... they didn't find my lesion for years either, many mri's eeg's catscan yada yada. seven radiologists missed it between 2004 and 2011, then a new (one from a way bigger hospital) came to do some work here, and bang... you have a lesion.
after one of my worst tonic clonics (physically and mentally, and first one i'd had alone) i went for tests and she found it right away. i cried for months (always had an arachnoid cyst as well which they said wasn't the issue), so when i learned it was two things in my head and intractable epilepsy, well, *shudder* in one phone call i became a woman who had to face brain surgery. emotionally thought i'd die.
i found out earlier this year from last year's eeg unit (was in 17 days) that the lesion began in my mom's womb, and i got very lucky not having seizures until i was 15. to be 34 and learn your heads been f'd since before you were born... eye opening to say the least

SO GOOD to hear all your regular daily stuff feels normal, sleeping eating etc. and that you have lots of help! that is so relieving! trust me (others on here as well) we feel we went through it alone, so HUGS to anyone who has lots of support, lots of hugs going around where you are too i bet.
so the 'small part of the temporal lobe as well' they removed, which part was it? the amygdala is in the temporal lobe, just very deep, so my guess is same as me... the hippocampus? should say the specific surg name on your discharge papers if they didn't already tell you.

as for memory, it has only been two weeks my dear, throw that worry away. memory issues are part and parcel of brain surgery, pretty much everyone deals with it, whether it's only for a month or lasts for years. what type of surg you had and reason behind it plays a big part too. if you can't remember someone's name etc., remind yourself "i just had brain surgery. will be recovering for months. i'm doing my part by looking after myself every day and having hope for the future. today i'm at *enter here* days seizure-free and i'm making it!"

sitting at home is what it is, i lost my license 7 times prior to the surg, so though it feels you're being held hostage some days, you'll get through it. this is a once in a lifetime (for most) experience friend, take it all in, even being low on energy and stuck in the house. these are safe, inside, warm, and i can't add the amount of times i've been told (from friends to family to my epilepsy nurse) TAKE IT EASY. RELAX. DON'T OVERDO IT OR YOU'LL PAY FOR IT (omg that is still true for me jim, at two weeks it's demanded that you don't do much, so sit on your ass!!! movies, play cards etc.).
i started cleaning house after a month, going for short walks to get the mail around the two month mark (outside and alone), and now have 'most' of my energy back, but, same as before, if i push it... woooh, not fun. we deserve to feel this way... agreed to have parts of our brain removed to save/improve our life. HUGS.
__________________
For a gallant spirit there can never be defeat. -Wallis Simpson
Reply With Quote
  #9  
Old 11-01-2013, 01:40 PM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
Hi Nelly,

I'm on Keppra as well, 1000mg twice daily (as well as Topamax). I keep forgetting that can cause problems like this, but that may be part of the problem here too I suppose. Still, exercising, etc. sounds like a good plan.

Qtowngirl, I honestly can't remember which exact part of the temporal lobe it was, and I don't have the discharge forms handy, but I think it was part of the hippocampus.

And I do like your wisdom here: ""i just had brain surgery. will be recovering for months....." etc. I think you speak the truth. I guess I just need to relax and remind myself it's only been two weeks.
Reply With Quote
  #10  
Old 11-01-2013, 01:52 PM
qtowngirl's Avatar
CWE Supporter/E Hater
 
Join Date: Jun 2011
Location: northern British Columbia
Posts: 2,557
Thanks: 1,102
Thanked 1,946 Times in 1,048 Posts
Originally Posted by jimbo1 View Post:
And I do like your wisdom here: ""i just had brain surgery. will be recovering for months....." etc. I think you speak the truth. I guess I just need to relax and remind myself it's only been two weeks.
yeah!
we'll click our 'coffees' and celebrate together, we can do this!
reminding yourself does go a long way, as time goes on it's not the only thing on your mind (pardon the pun), so we need to keep telling ourselves we are still recovering, life will get better and a fresh start will begin... when we're ready.

(haha i poured us another one )

ps- if it was your hippocampus then we basically had the same surgery, removal of part of the hippo and amyg to extract a lesion. only difference being that my lesion was also part of the hippo so it was coming out anyway. and *smile* my other recent surg friend (2ndchances on here) and i agree... we just had parts of our brain removed and we're still smarter than most! go jim!!!
__________________
For a gallant spirit there can never be defeat. -Wallis Simpson
Reply With Quote
  #11  
Old 11-01-2013, 01:53 PM
Cint's Avatar
CWE Supporter
 
Join Date: May 2008
Location: Denver, CO
Posts: 5,507
Thanks: 1,153
Thanked 3,165 Times in 2,056 Posts
Originally Posted by jimbo1 View Post:
And I do like your wisdom here: ""i just had brain surgery. will be recovering for months....." etc. I think you speak the truth. I guess I just need to relax and remind myself it's only been two weeks.
Hi jimbo1,

I had a left temporal lobectomy 20 years ago and I feel like I am still recovering. I had a bad case of depression after surgery and still suffer from it to this day as well as memory loss, aphasia, and more seizures. The surgery wasn't successful for me and they couldn't do a 2nd brain surgery because the damage is deep in my hippocampus and I could end up in a vegetative state if they did go there again. No thanks!

Depending on where in the brain the surgery was and where the seizures originate, that will have a lot to do with your long-term recovery. If you had a lesion removed, you have a high chance of a good recovery, but it takes a while. Hang in there!
__________________
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Reply With Quote
  #12  
Old 11-01-2013, 02:07 PM
nelly's Avatar
Joined the Party
 
Join Date: Apr 2013
Location: Minnesota
Posts: 76
Thanks: 32
Thanked 14 Times in 14 Posts
Absotutley right!! It's only been 2 weeks. so, give yourself time and premission to heal.

Jimbo1I 'm sorry I didn't mean to say that Keppra was was no good, Just didn't for me.

I take
Lamictal 200mg 2x day
Vimpat 15mg 2x day
Reply With Quote
  #13  
Old 11-01-2013, 02:13 PM
qtowngirl's Avatar
CWE Supporter/E Hater
 
Join Date: Jun 2011
Location: northern British Columbia
Posts: 2,557
Thanks: 1,102
Thanked 1,946 Times in 1,048 Posts
hey there nelly... was on the two of those as well prior to surg (as well as carbamazepine) and HATED the vimpat. similar to keppra it is not a drug for everyone, extreme side effects for many on the v, there's actually a few threads on here regarding just that. BUT, just as you're saying to jim, for those it works for, it works. awesome to hear.
__________________
For a gallant spirit there can never be defeat. -Wallis Simpson
Reply With Quote
  #14  
Old 11-01-2013, 02:23 PM
nelly's Avatar
Joined the Party
 
Join Date: Apr 2013
Location: Minnesota
Posts: 76
Thanks: 32
Thanked 14 Times in 14 Posts
Hi Cint,

I too still suffer from depression. I'm also on a anti-depressant. Effexor 225mg 1 a day
I'm sorry that you still have seizures, despite having surgery. I see my neurologist every 6 mos. I resently have a EEG done and I still have seizure activity and that my leision is still there, I guess once a scar always a scar.
Reply With Quote
  #15  
Old 11-01-2013, 03:05 PM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
Hi Cint,

Sorry to hear the surgery didn't work for you. I guess that's a risk everyone has to take with epilepsy surgery, but it's a shame.

Nelly: Yeah, with Keppra I'm never sure really. I've been on it for years, but so many people complain about the mood issues, etc., sometimes I wonder if it's actually affecting me or not. But my epilepsy was so problematic that my doc was reluctant to try me on anything else, because at least Keppra kept the tonic/clonic seizures under control, if not the complex partials. Still, maybe if this surgery works I can get off it altogether.

And qtowngirl: Right back at you;
Reply With Quote
  #16  
Old 11-01-2013, 03:38 PM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Aussieland
Posts: 3,821
Thanks: 1,855
Thanked 1,309 Times in 938 Posts
Hi Jimbo1,
Welcome to CWE, I hope the anxiety eventually settles down & the rest of your recovery goes well.

I had surgery on my left temporal lobe (to remove scarring) in March 2011.
I had a fairly good recovery but I took it slowly & gave myself time to recover.
I spent 5 days in hospital then had to stay in the city for a week before I went back to the hospital for my 2 week check up with the surgeon, neurologist & neuropsychologist to get the all clear to go back home. I live on my own so when we got back from the city I spent about 4 weeks at my parents place.

The only issue I did have after my surgery was a couple of days after being released from hospital (7 days after my surgery) I heard a strange noise in my head (it was a noise I had never heard before). The noise freaked me out & I had a panic attack because when I went to tell my Mum (who was with me) I burst into tears & had trouble explaining what the noise was. My Mum rang my epilepsy nurse who spoke to me but I was so upset that I was having trouble explaining to my epilepsy nurse what was wrong. My epilepsy nurse said she'd follow it up with the epiologists / neurosurgeon & get back to us.
The nurse got straight back to Mum & told me that she spoke to the specialists & they said it was most likely my brain adjusting after surgery.

I still had the strange noises after that but they eventually settled down after a week.

I am now coming up to 3 years since my surgery & I am one of the lucky ones that had success as I am still seizure free.
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!

One small positive thought in the morning can change your whole day

Last edited by CQ:); 11-01-2013 at 05:10 PM.
Reply With Quote
  #17  
Old 11-02-2013, 04:39 AM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
Hi CQ,

Glad to hear the surgery worked for you. Out of curiosity, what kind of noise were you hearing? I find I sometimes hear a ticking noise in my skull when I'm lying in bed, that seems to match my heartbeat. It depends on what way I'm lying too, if my head is turned a certain way I won't hear it, but other ways it's much more obvious.
Reply With Quote
  #18  
Old 11-02-2013, 05:02 AM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Aussieland
Posts: 3,821
Thanks: 1,855
Thanked 1,309 Times in 938 Posts
Originally Posted by jimbo1 View Post:
Hi CQ,

Glad to hear the surgery worked for you. Out of curiosity, what kind of noise were you hearing? I find I sometimes hear a ticking noise in my skull when I'm lying in bed, that seems to match my heartbeat. It depends on what way I'm lying too, if my head is turned a certain way I won't hear it, but other ways it's much more obvious.
Jimbo.
The 1st noise i heard just after my surgery was like someone going tap tap tap, the other noises were similar.
When my epilepsy nurse let me know the 1st noise was probably from my brain adjusting to the surgery i said great so my brains having a party
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!

One small positive thought in the morning can change your whole day

Last edited by CQ:); 11-02-2013 at 07:06 AM.
Reply With Quote
  #19  
Old 11-02-2013, 05:46 PM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
That's curious...at least it settled down for you eventually.
Reply With Quote
  #20  
Old 11-03-2013, 04:03 AM
Getting Comfortable
 
Join Date: Nov 2013
Posts: 17
Thanks: 2
Thanked 1 Time in 1 Post
Okay, another question: Did anyone else find that one or both eyes got very dry after the surgery?

In the last time after the surgery, my left eye gets extremely dry at night, to the point where it's stinging so much that I have to wake up and put drops in. All the skin on the left side of my head is pretty dry anyway after the surgery, so it's probably related, but I'm just wondering if it eventually heals up?
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
For those who did or are going to have brain surgery... qtowngirl Surgery Central 10 03-03-2013 12:19 AM
Considering brain surgery jemsister Surgery Central 49 12-07-2012 08:01 AM
My Head after brain surgery AngelwithDentedHalo Surgery Central 5 08-09-2012 11:48 PM
epilepsy from residual scar tissue on brain after brain surgery pab86 Surgery Central 5 01-23-2012 12:25 AM
Brain surgery moxiecat74 The Foyer 14 10-11-2007 08:01 AM


All times are GMT -5. The time now is 09:30 AM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.