temporal lobectomy healing process

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!!!!!

 

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!!! 

 

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

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

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?

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...!

I posted my email, the icon is under my screenname. Please email me anytime!

Gail

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 :)

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

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

 

 

   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     

 

  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 .  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?

 

 

 

 

 

   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