temporal lobectomy healing process

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positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/10/2008 12:35 PM (GMT -7)   
Hi, I am new here and just had a right temporal lobectomy 3 weeks ago!! 
 
I'm so very upset at all the changes, I did alot of research and asked the doctors but they did not say that I would change!!!
 
Did anyone experience behavioral changes?  I also have partial paralysis on my face!! and my head is so foggy all the time, i'm soooo emotional and crying all the time over everything!  whether it be happy or sad...i'm crying!  I used to be so independent and now i'm soooo needy!!  I'm in rehab right now and sit in front of doctor's office every day to make sure he will see/speak to me!!
 
All this paranoia, neediness, anxiety....is so not me!!  Part of me regrets this surgery....I didn't expect it to change me!!!  I liked the old me....i want to be able to think clearly...and it's so tough to stay positive right now...please can anyone help?  What are some hints to stay/think positive and how can I help my brain heal faster??  Is there such a thing??  I need help PLEASE!!!!
 
My family all say it's too late for regrets and they are totally right!!!  I just need to live with my decision even though i really wish the doctor did not listen to me then!!  I was only supposed to go in to get electrodes in (for monitoring), then when they removed electrodes, one got stuck so a couple days later they did the surgery (i think it was cuz they had to operate to remove the last electrode anyways).
 
My mom is so worried about me, because basically it's brain surgery 3 times within span of one month!  I still have alot of swelling by my right temple...I tire easy and since last week, i've been experiencing something similar to restless leg syndrome!!!  I hope that goes away soon!!
 
Also, because of all the drugs they gave me (some narcotics) i've been going through so many changes (hallucinations, and even more paranoia than i currently have)....I've pretty much refused all drugs except for my epilepsy medicine.
 
And now i'm scared of everything....scared to be alone, scared i'll have seizures again (so far 3 times i had "funny feelings" that we don't know if they were auras), scared to go back to work....but i want out of rehab....the one weekend pass i got to go home, i was sooo overwhelmed!!
 
Please, please....if anyone can help...or have gone through this......can tell me how long this will last or if these things go away......I would appreciate it soooo very much!!!!!
 
 

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 6/11/2008 4:42 AM (GMT -7)   

Hi there and Welcome to HealingWell,

I am really sorry that you are having a hard time with this at the moment. Brain surgery always carries a certain level of risk in that behavioural changes can occur and the doctors should have warned you about that. Not doing so is, at best, unethical. Please try not to worry about this too much though as the changes can be (and more often than not) are only temporary... although the length of time can vary to person to person. There is not much you can do to help your brain heal any quicker but having a good balanced diet and drinking plenty of water will help your brain get all the nutrients it needs to heal. If the behavioural side has not changed in the next 5-9 weeks I would suggest seeing a neurologist to have him explain what is happening and why.

Please continue to talk to us and we will continue to help you in any way we can

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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positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/11/2008 5:38 AM (GMT -7)   
thank you so very much for your words of comfort djdaz!!
 
I need to wait another couple months to see if I return to normal????  :(   I know everyone keeps trying to tell me "baby steps" but i'm having such a hard time with it, and I need to go back to work soon because I need the income and i'm worried the insurance may not process my claim fast enough (or reject my claim) for long term disability!!!
 
I'm going through compulsive behavior and alot of impatience and such....trying to change but it's soooooooo hard!!!
 
I'm also desperately trying to find a girl I was in Toronto Western EMU a month ago who has a dog (i think it was a poodle) who helped with her seizures to alert her parents!!!  I want to get in touch with her sooo very very badly!!!  please, if anyone can help or knows of her, please help!!  She gave me her contact info but I lost it when they shuffled me around the hospital and then did surgery on me!!!
 
Or please pass on to her that i'm looking for her....if she could please get in touch with me!!!  She did crafts and made me a beautiful bookmark too!!! 
 

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/11/2008 9:41 AM (GMT -7)   

HIya,

Im from the UK so I cant help much with the poodle problem. As for the personality change... it maybe just a temporary thing in which case there is nothing that you can do about it other than wait. It is an unfortunate occupational hazard of brain surgery since the brain is so complex. Personally I would wait a couple of months to see how things pan out (unless you start to get serious problems) but if you wanted to put your mind at rest, a neurologist is your best bet. Family doctors are unlikely to be able to help you as much as a neuro.

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
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


pharmgal89
New Member


Date Joined Nov 2007
Total Posts : 18
   Posted 6/11/2008 4:56 PM (GMT -7)   
You are almost telling my story. Unfortunately it is part of the healing process. I feel like it was never told to me in advance so it makes it that much more difficult. I found a support group and asked when will the "old Gail" be back? I am now 7 months postop, she has been back for a few months now :-) . Not to say I am not still emotional. I never cried before surgery and now I cry often, but appropriately. I have anxiety attacks also, but in place of a seizure. BUT, as far as the head spinning, feeling out of control, paralysis and am I having an aura or could I have a seizure, that is gone. I do hope your recovery is quick. Stay positive. I prayed a lot and sought answers from others like you are. Best of luck and God Bless you.
Gail

positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/11/2008 6:41 PM (GMT -7)   
Oh Gail thank you so much for your reply...it sounds like there might be hope I might one day be me again - but it feels so awfully long! :( it's so tough to be patient and stay positive - thanks again and I'd really like to keep in touch with you, to understand what is normal or not...so far I'm not getting a lot of those answers from team here at rehab and I'm also feeling that only someone who has gone through this experience can truly relate/understand! Looking very forward to hearing from you again :)

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/12/2008 3:30 AM (GMT -7)   
Thank you for sharing your story with us Gail! I can only do so much and say a limited amount of things because, although I know about the technicalities of the surgery, I have never had it and I have always believed that experience makes you the expert.
 
Positive, I hope that Gails story has helped put your mind at ease that the effects can be temporary and she has also given you a time frame to work with as well. Please keep talking to us and let us support you though this difficult time
 
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
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


pharmgal89
New Member


Date Joined Nov 2007
Total Posts : 18
   Posted 6/12/2008 4:23 AM (GMT -7)   
Positive,
We can plan a chat if you would like. I am off on Friday. HA, I thought I would never be able to work again, lol!! I can meet you here on Friday night since I will be busy during the day, but resting at night since I am working all weekend. If 7:30 or thereabouts sounds good, let me know.
Hang in there, this too shall pass. I repeated that quite frequently.
Gail

positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/12/2008 4:44 AM (GMT -7)   
Oh no! I can't do friday or this weekend- I have a pass outta here for weekend, so I don't know if I"ll be by a computer! Can you do aother day before? And I don't know how to do chat...is there any way we can exchange email addresses?

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/12/2008 5:16 AM (GMT -7)   
Hiya,
 
You cant exchange email addresses in the open forum but you can add your email address to your profile (By clicking CONTROL PANEL on the left in the blue bar). This is just for members safety as this is a public forum. As for chatting, simply click CHAT on the right in the blue bar) and select which room. It will also show you a list of everyone in chat at that time and which room they are in.
 
Hope that helps
 
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
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/12/2008 8:49 AM (GMT -7)   
Thanks Darren!! That does help! If i show my email address...does that mean just anyone can see it though? or just members can see my profile??

Gail: would you be interested in emailing each other? Or would you prefer to just chat here in forum? And I thank you for the time frame as well....and also, how long before you were able to go back to work too??

This morning i got all emotional and started crying for no reason!! Wish that would go away....the waterworks are making my swollen face more swollen.....and i'm praying that they only might have damagaed the nerve and didn't cut my facial nerve!!! I've been researching to see....and hear if it was only damaged it can heal.....but i can't find out which one "partial paralysis" would fall under...and would surgeon know for sure what happened?.

Darren: are you a doctor? you seem so knowledgeable....or just experience with alot of us?

Gotta run...rehab time again...!

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/13/2008 2:27 AM (GMT -7)   

So many people tell me that! Im not a doctor, I just believed that when I was forst diagnosed that knowledge was the way to cope. Im also a psychology student so I study the brain, my mum is epileptic and I have moderated here for about a year now so I am always learning. I guess because I am a student, I just absorb info!

YOur email will show on your profile only, and there will be a link to it (The envelope icon on posts). The main reason for not putting it in posts is to stop malicious software picking it up. (And most spammers cant be bothered looking manually!)


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
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


pharmgal89
New Member


Date Joined Nov 2007
Total Posts : 18
   Posted 6/13/2008 5:41 AM (GMT -7)   
I posted my email, the icon is under my screenname. Please email me anytime!

Gail

positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/14/2008 2:16 PM (GMT -7)   
Thank you Gail!!!! I will definitely email you when I can...hopefully by tomorrow afternoon!! My name is Sandy - so you know it's me when you receive it!!

positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/25/2008 1:24 PM (GMT -7)   
Sorry for taking so long to give an update!

Today was huge for me! I went into a couple of stores and a small diner for lunch with my family!!! I haven't been able to be around more than one or two strangers since the surgery and have freaked at the idea of going out anywhere...so being able to do so was such an accomplishment!! And all that without any panic attacks too!. I know it sounds like so little...but such an accomplishment for me.

I still say i'm emotionally "fragile" still...but not as bad as before! None of what I termed "emotional storms" where i used to cry for hours on end (like a good 4 hours once)...it has been a while since those! I still get alot of panic attacks, but when my hubby or friend turns to me and says "breathe, slow down, clam, relax", or even "one day at a time" - all those buzz words....where they used to irritate me but now they calm me down!!

My vision is still a problem (main reason i've avoided computer for the last while) and wanted to wait to see if it'll improve. Doc says it "might" but they don't know "how much". Kinda sucks since i had laser surgery done on my eyes a couple years ago. I still worry and stress over everything....but hopefully i can get that under control with some help (if i can get in with some therapy)!

The days still drag on and it's tough going...but you are all right...it's getting a little bit easier as time goes on....i'm really hoping it will get even easier than this. If my vision returns, that would be nice, then maybe i can read to pass the time! I still tire very quickly...and take alot of naps.

I still get panicky over anything to do with responsibility...shrink says it's becuase i don't trust myself yet and as self confidence grows, that should subside. Sure hope he's right!!!

The swelling by my temple is still there, not going to worry about that though. I've finally got some follow up appointments soon and i have a list of questions i want to ask the doctors. Hopefully they can answer them and i hope i like the answers *wince*.

I'm out on a pass...and there's a family function this weekend. It's going to be alot more "firsts-since-the-surgery"....and i don't want to think about it yet.....I'm also trying the "one day at a time" so i don't stress too much and wait "to see how things go"...SIGH....I sure hope I become much more laid back type person and learn patience through this experience and SOON :)

Thank you all...and with all your support...i have just made it over the one month mark! Though I can't believe it's only been a month...it feels like it was so much longer :)

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/25/2008 2:41 PM (GMT -7)   

Hiya,

Im glad that you are starting to make progress after your surgery... Hopefully you can keep making these "firsts" and start to grt back towards something of a normal life. Remember to take it slowly though... dont try to run before you can walk! tongue

Thanks for the update

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
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


pharmgal89
New Member


Date Joined Nov 2007
Total Posts : 18
   Posted 6/25/2008 7:36 PM (GMT -7)   

Be kind to yourself. You have been thru a lot. You won't believe how fast time will go and you will look back and feel so proud of your accomplishments! I will be 8 months postop in a couple of days and that amazes me. Take each day as it comes, even if it is two steps forward and one step back. It's good to hear from you and stay well.

Hugs, Gail


mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 6/26/2008 4:12 PM (GMT -7)   
 
 
   Hang in there, trust me I know how hard it is, I had a right temporal lobe lobectomy in 2002, it's been six years this summer, I can't believe it!   about a month after my surgery, I began to deal with some emotional issues, I cried at the drop of a hat.  I seriously thought I was loosing it, I had never fealt like that before, it was terrible.  The neurologist told me I was dealing with depression and told me this was very common after brain surgery, it didn't make it any easier, but at least I knew there was a reason for my emotional state.
 
   I'm happy to say I'm doing great, no seizures since the surgery six years ago. As for the emotional side, I still deal a little with anxiety, I just can't take things like I use to get very stressed out easily.  But I can deal with that as opposed to have seizures again. It feels good to have my FREEDOM back and not worry about having a seizure.
 
 
   If you want to chat some time let me know, would be more then happy to chat with you. I know what it feels like to be going through the emotional stuff.  Take care and I'll say a prayer for you :-)
 
 
   God Bless,
 
   Mercyme

Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 6/28/2008 3:58 PM (GMT -7)   

PositiveEnergy,

I have just now read your thread.  Do you realize how amazing you are?  You need to go back and see how much you have accomplished in less than a month.  You are so lucky to have several supporters who have already gone through this surgery.

They have been an awesome support team for you and I'm sure they will continue to be.  That's how it works on HealingWell.

With love and prayers,

Carla

 


Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


positiveEnergy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 7/12/2008 6:30 PM (GMT -7)   
Carla: Thank you for pointing that out...you're right, I have been very lucky to have met such supportive people here on healingwell!!

Mercyme: that is such wonderful news!! You being seizure free for six years!! There is such hope for me...knowing there are so many people who have success with this surgery and that things get better. I am not freaking out as much as i did a month ago- i think that already shows improvement!!

I also get discharged in a week, from rehab! That's great too, must mean i'm getting better with all the mental stuff :) Things are looking up :)

Thank you all so much for the support and encouragement - i just realized it's going to be 2 months CP free in a few more days!! YAY!!!

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 7/13/2008 6:44 AM (GMT -7)   
 
 
   Hang in there Postive energy, things really do get better. I went through all the emotional stuff as well, depression, anxiety, stress through the roof, but things are a 100% better now, and with God's grace you will get through it too,  I will be thinking of you.
 
    Blessings,
 
    Mercyme   :-)   

PeaceLilly
Regular Member


Date Joined Jun 2006
Total Posts : 49
   Posted 7/21/2008 5:38 AM (GMT -7)   
Mercyme,

Did you get migranes that were so bad that you were in bed for a day and a half. This is the second one in two weeks. I can tolerate pain but this I cant. I do hope they will go away. Thank you for thinking of me.

Cindy- Peacelily

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 7/21/2008 1:50 PM (GMT -7)   

 

  Yes, I had terrible migraines, the bad part for me is I still have bad migraines. I have 2-3 a week which makes it impossilbe to work.  I have an appt Aug 5th to see my neurologist to see what med we can try now sad .  I've just dealt with it for so long, it's just part of my life.  I do hope you and your doctor will be able to get your migraines undercontrol, so they don't control your life.

   I just got back from my neuro  surgeons office, I've also had back surgery, it's been a uphill battle for me. The doc gave me another steroid injection, and I start pool therphy next week. nothing really helps back pain either, but I'll get through it.  My Faith is in God, and He gives me strength everyday for whatever may come my way. Without Him I would never be able to endure all this.

   God Bless,

    Cindy

 Maybe we can chat online sometime?

 

 

 

 


ets mom
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/6/2008 10:43 PM (GMT -7)   

PositiveEnergy,

I would like to know how you are progressing.  Your story has been very helpfull to me. My 4 year old son just had a temporal lobectomy 2 weeks ago.  He had a grade 2 tumor as well as abnormal tissue which caused his complex partial seizures.  His seizures became uncontrollable with his meds due to the tumor.  After he went throught the 72 hour video EEG and neuropsyc testing they found that the seizures started to cause complications with his speech, memory, word finding abilities, and word comprehension.  They determined the best course of action would be to do the temporal lobectomy and it needed to be done quickly.  The surgery went well.  He was is alot of pain afterwards but seemed to recovery pretty quickly.  He is very emotional at times and cries alot it seems.  From your experience and others that I have read about I guess that is to be expected.  We have been concerned about the swelling and what should be normal.  It doesn't seem like it has gone down at all since we left the hospital.  His follow up isn't until the 15th and the hospital is 2 1/2 hours from where we live so I call the nurse about every other day to ask more questions but it would be good to hear from someone who has been through it.  They have told me it is possible that some of the CSF will leak into the tissue causing some of the swelling but not to be concerned unless there is leaking from the incision. How long was it before you were able to see some improvement with the swelling?  He complains quite often of headaches and we are giving him motrin and tylenol regularly. He is really active and I think he is over doing it and not resting enough.  Do you have any suggestions?  How was it for you as far as getting around. What can I do for him that I am not that will help with the pain/swelling?  I hope you are continuing to improve and doing well.  Thank you for any suggestions and information :-)


mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 9/8/2008 5:35 PM (GMT -7)   
 
 
   Hi, I just read your post, I don't really know what to tell you about a four year old. I don't remember alot of swelling, but I do remember the headaches for a while.  But as time goes by each day will be better.  With kids I know it's hard to tell when they are so young, and trying to get them to rest can be hard.  It's still very early, so I'm sure you will see daily improvements in him.  wish I had more adivse to give you.
 
    I am still having migraines, I really don't know if it's from the brain surgery though. I go tomorrow to have a MRI done of my brain, I'm sure everything is fine, but for the life of me and the doctor I don't know why I deal with these migraines so badly.  I am a substitute teacher and working has become very hard  not knowing any minute when a migraine is going to strike.  I've been having daily migraines so I'm really hoping to find a medication that will help control them.
 
  I pray all goes well with your little guy and if I can help you in any other way just let me know.
 
  God Bless,
 
  mercyme/Cindy
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