Right Temporal Lobectomy recovery

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PeaceLilly
Regular Member


Date Joined Jun 2006
Total Posts : 49
   Posted 7/20/2008 12:33 PM (GMT -7)   
Hi there,
 
It has been a very long time since I have been on here.  I have had one problem after another but I finally after years of waiting have had my Right Temporal Lobectomy at the begining of May this year.  It has been postponed for the last year for numerous illnesses.  But I was so happy to finally get it past me and I wasn't even nervouse because I think I waited so long for it.  I haven't drivin in years and this was the main reason to get the surgery to get my life back.  It has been close to 3 months and I am always very tired.  I also have SLE Lupus which has become active since the surgery.  But I knew that it would.  I take a 2 to 3 hour nap every day. That is after sleeping a good 10 hours at night.  My meds have not been lowered because they said not until at lease 6 months would they consider it.  My head still hurts in many places.  I get headaches and migranes.  I am still emotional but not nearly like I was.  I think this is the best thing I ever have done but the pain is sometimes unbearable.  I am depressed and go to a therapist for reasons I do not want to say.   My therapist is wonderful.  But the pain can be terrible sometimes.  I am going to work part time.  But it takes a lot out of me.  I have heard that it takes the brain 6 months to heal, but I wonder if it doesn't take longer.  Sometimes at night I can't get comforable because the pain is so great.  Any suggesttions. 
thank you for listening.
Cindy

Beyond my Control
New Member


Date Joined Jun 2008
Total Posts : 16
   Posted 7/20/2008 9:37 PM (GMT -7)   
Hi Cindy,

After surgery for my L/H temporal lobectomy I too found it immensley hard to get comfortable and tolerate the constant pain. I found some level of comfort by listening to the sounds of the ocean on CD and imagine I was there and drift off to sleep. Sometimes, not always it worked for me. It took well over six months for my brain to heal fully, and yeah depression is directly linked with epilepsy. Over time it does get a lot better. Hang in there Cindy, things will definitely improve.

Stuart (author) Beyond my Control

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/21/2008 3:45 AM (GMT -7)   
Hi Cindy
 
Congratulations on finally getting the surgery! 3 months (Although it probably feels like a long time) is not a very long time for complete recovery. As your GP has said, it will take around 6 months for everything to settle down (Although minor stuff like behavioural changes can disappear in 5-10 weeks or so)
 
There is a thread you might be interested in that I have dug out for you: http://www.healingwell.com/community/default.aspx?f=23&m=1150247&g=1180919#m1180919
 
Hang in there and keep talking

Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
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hanrahan
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/18/2009 6:24 PM (GMT -7)   
confused  I am a 51 year old male who has had right temporal lobe eplipsy since I was 16.
Been on various meds  without complete control of my seizures and over the past few years
I have found that I've been falling more and hurting myself in various places.  To the point where I have looked into and am shortlisted for further testing, towards having a temporal lobectomy as I have heard only good things about it.  The fact that I want to be seizure and med free gives me hope.  However, from reading some of your comments, it is not as
cut and dried as that.  What are some of the most important things do I need to be looking into and taking into consideration also?  I would like to hear from some people my age who have had the surgery, what advice can you offer me?

hopefulmary
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/14/2010 2:48 PM (GMT -7)   
Hanarahan- I just have this surgery on March 31st(2wks & 2days) ago. I took over a year of testing to finally getting a date for surgery, I am 49yr old female and have had seizures since I was 11 months old. I have tried every medication on the market. I figured I have nothing to lose by having the surgery. Hopefully I will be able to drive and be off meds. I won;t be a prisoner in my own home. I am getting better every day, I might even go to work tomorrow. Most important is to have a good neurologist that knows all about this surgery. Lots of Mri's, CTs, WADA test, a week long EEG and various other tests. Hope this helps.
Mary Ellen

Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 4/14/2010 7:42 PM (GMT -7)   
WOW the memories you all bring back to me.
 
My husband had seizures since 6yo and finally was offered the temporal lobectomy aound age 50. He wanted so much to be off of meds. He is a tough cookie. But he had suffered a really bad status seizure 1 year earlier and it did damage with short term memory which was permanent.
 
What he did for his "recovery" was see my beloved chiropractor who has a gentle technique to eliminate obstacles in our brains and bodies. So he had treatments to help in his recovery of this brain surgery.
 
He never had pain or headaches since 2 weeks after his surgery. AND he had another brain surgery to take a "piece" near the temporal lobe and that caused some peripheral blindness which he had to adjust to.
 
Sadly for him his parents and I argued about adding more and more meds. Next he had the VNS added as he did return to seizures after both brain operations. I remember they even did an EEG ON his brain during the 1st surgery and was SURE they got it all.
 
Who knows..that is HIS experience so don't let it upset your recovery or decision ok?
 
The status seizure and stress from his parents I think added to additional seizures.
 
Good luck with all you are struggling with.
 
P. S. Now I Have lesions on both temporal lobe seizures.. amd jave SP and CP seizures..go figure
 
Warmly, Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


hopefulmary
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/17/2010 3:38 PM (GMT -7)   
Hi,
I was wondering if anyone could tell me how long it takes for the numbness of the scalp to come back after the brain surgery,
 
Mary Ellen
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