Let's talk about brain surgery

[Nancy]

Hi Mat ....
Here's the message you posted:
"I know all to well about having to describe those feelings,and i hope your doing well.I am about to have surgery,left side.Can you tell me alittle about the surgery,are you back to work,if so how long were you off?How bad is the pain on a 1-10?What if any is the differance between surgery 1-2? I have done all the tests,and go thurs.8/14/08 for consletation and to set a date.Can you tell me what to exspect?Thank you for your time.Mat"


I hope you don't mind that I copied it and pasted it here. I wanted to start a new thread with it. Lots of people who frequent this forum have experience with surgery .... I sure have.
Feb., 2006 I had surgery on my left temporal lobe and it hurt like heck for about 4 or 5 days. Then it quickly started easing up and was all gone within a week.
My next surgery was the same spot in May, 2007, and the pain was MUCH easier and a much shorter length of time .... I haven't had a seizure since then.
I wasn't working then (or now) so I can't tell you how much I missed ... I "think" I would have missed at least two weeks .... maybe three, but no more.

More people will be here very quickly. Ask all the questions you want.
WELCOME ABOARD. We're glad to meet you and hoep to help.

 

[ashmstng]

Hey Mat~

I wanted to answer some of your questions and help you just like Nancy did. About going back to work it is about 2 mths. I took 2 in a half mths off just to be on the save side and it was my first big surgery I have ever had. But the doctors say at least 2 mths.

I had my surgery on May 22 2008, left temporal lobe. As for me I had alot of headaches until the stitches got taken out.

I go back to the doctors on August 25th for a MRI and EEG check-up.

I hope we have helped you some. Anymore questions just ask. Take care!

 

[mat]

Thank you all so much,Icant express how much i love this web-site!!Can any one tell me what you remember during surgery,from what i'v read your awake?Is it simular to the wadda test,and how about pain 1-10 scale?And what are the chances you have to have a second surgery?Has anyone had more than 2?

 

[ashmstng]

During the surgery I was asleep. I think it depends what side they are doing the surgery on. If your are having a left temperol lobe, you shouldnt be awake that I know of. During the surgery you are out and cant feel anything until you wake up. But like me when I woke up I had a huge headache. But the headaches continued on and off until everything healed. The pain I cant really say much cause everyone is different. Plus all of the meds they give you. And the chances going back for a second surgery depends on you and how the surgery comes out. Or if you have anymore seizures after the surgery. I havent had any so far so I am not sure yet if I have to go back again. I just know I am going back for my check-up at the end of the month. I had one brain surgery so far. Nancy has had 2 and I think Elaine H on here has. I am not sure who else.

Anymore questions just keep asking. We will see what we can answer for you. Take care.:hello:

 

[Elaine H]

Hi Mat

I just read this, I thought I'd reply here aswell mate. As you know I've had two surgeries, a Temporal Lesionectomy Sept 2000, and the Right Temporal Lobe Resection 7 weeks ago. I sure as hell wasn't awake during either, I know there is some brain surgery where you remain awake, but it's not very common, I've certainly not spoken to anyone or heard of anyone that was, although I watched a documentary on tv about it years ago. Some people have to remain awake so that the surgeon can stimulate parts of the brain, and get reactions from the patient as he's operating. Both my surgeries were in the same spot, the first op was to remove a lesion from the surface of my brain, and the second to remove my right Hippocampus, I was up and about within a couple of weeks after both operations, and no one could believe it, I think we are meant to be bedridden for months afterwards, brain surgery does seem drastic, but honestly, I can't say there's no pain, but you really do come through it pretty quickly, and it just messed my hair up!! That was my main concern.

You'll love the guys on CWE, we all have so much in common, and any problems or worries you may have, there's always someone here who can help out, they sure did with my second surgery.

Keep us posted with how you are getting on won't you?

Cheers
Elaine x

 

[Elaine H]

Hi Ash

I don't think I realised that you had surgery recently, if I did know I'd forgotten, I saw that you see your specialist on 25th August, I see mine on August 20th, I just hope to Christ that I don't have to have an MRI!!!!!!!!!!! I hate the bloody things, being stuck in there terrifies me, even if I shut my eyes and pretend I am standing in front of The Great Pyramid in Giza!!!

We must keep each other informed as to how we get on ok? Best wishes!

Love

Elaine x

 

[Nancy]

I go in for my next MRI on ....hmmmmm..... I think it's Oct 3. The paperwork is on the 'fridge - lol -
I've had so many of those things I've gotten over my fear. Now I find the ear plugs myself, climb into the machine, wiggle into comfort and go to sleep.
Barnes Hospital (well, the section of there I visit) has a new thingy so you aren't pulled out for the dye stuff .... that's automatic. It's so much faster and easier. Wow - I love that place.
I'll wait 10 or 15 minutes, be handed the films and then carry them to my neurosurgeon to talk about them with him.

Mat - you've had your meeting ------- How did it go?

 

[Cint]

Left temporal lobectomy

I had my surgery back in 1990 on the left side. I was seizure free for 14 months. The surgeon said he couldn't get all the damaged hippocampal area, otherwise I would end up like an advanced Alzheimer patient for the rest of my life. I know the procedures have improved since then, so I sure hope those who are considering surgery have a much better outcome than I did! :brain:

I've since had two VNS surgeries, with better control, although still not completely seizure free.

Cindy

 

[mat]

Yes,I went to the Dr. Thursday.My Dr. says my sz are on right instead of left.I dont think that makes much of a differance,may be a little better?Anyway he says he has to meet with the surgon for me to call him the day after Labor Day.He also said as far as he was concered I will be home recovering by the end of September,to me thats great news.My next step is meeting with the surgon to get all the facts,and to set a date.So until then keep on typing all your advice has been helpful! thanks Matt

 

[Nancy]

It's good to "see" you again Mat .... I've been thinking about you and hoping you would come back after seeing your Dr. on Thursday.
Could I ask what tests you've had ....I wonder if you've had that neuropsych thing and VEEG and what you thought of those.
And could I be nosy and ask how old you are and how long you've had epilepsy and stuff like that?

When I had my first surgery it was on my LEFT temporal lobe Feb.14, 2006, but I'm not clear of the difference between left and right. Maybe someone will come along and tell us something.
God bless you, Mat.

 

[mat]

Hi Nancy,Thanks for all your help.A year ago i had the video EEG I was taken off my Meds. for 3-4 days then admitted in to the hospital for a week with all the electrodes put on my head.Ihad 25-30 sz that week all caught on tape. I sometimes wish i could have seen that tape because i wonder if people tell us everything that happens but i guess some things are better left alone.Anyway i HATE that test,when i left the hospital they gave me a toxic injection of Trileptal,when it kick in Iwas kicked back in my Lazy-boy at home.I could not breath and was very weak.My wife was cleaning a room in the back and i couldn't make enough noise for her to hear me.I finally broke a glass and she came and called 911 back to the ER we go.Ifelt like I was going to die for sure that day. I also had the Wadda test done in january where they put half of your brain to sleep and ask you to remember things,I didnt mind that on as much but still i dont want to repeat it, as for neuropsych i'm not sure what that is.IS that another name for the Wadda Test,or somthing completly different?

 

[Nancy]

Wow - that INJECTION of Trileptal sounds BAD ..... both times I had the VEEG I entered the hospital on full meds (taking my full amount) THEY quickly started reducing my dosage but just one or two pills at a time. When it was time for me to head home I went back on full dosage (just pills never an injection!!) with one dose of .... hmmm ...there goes my memory again .... that stuff that starts with "A"...lots of us take it on a regular basis but I don't .... Anyhow, it was such a large dosage I did just fine physically but can't remember that day very well - lost some memory of it.

The neuropsych test ...... My epi and neurosurgeon both said it was pretty vital to learn how my brain works (lol - or how it doesn't) I had my first a couple of months before my first surgery and the second one EXACTLY 6 months after it. They wanted to see how my brain reacted to the surgery.
When I needed surgery again the did the neuropsych test again EXACTLY 6 months after it.
It shows how my brain/memory/reaction/many, many things like that were doing.
My hospital uses a neuropsych test process that takes about 4 - 4 1/2 hours. Some still use one that takes up to 8 hours !!! It's like an intense test you took in high school ...... in a very large closet with one teacher

Here's a site that talks generally about neuropsych
http://www.brainsource.com/npassmnt.htm

I didn't like it or enjoy it. For me it was torture. When told I should have it the second time I told the doc I would rather have surgery again, he roared laughing.

I've never had WADA. I guess we all go through different things - whew

 

[brain]

A word from the Moderator

I have sticked this thread and renamed it
"Let's talk about brain surgery"

So that all those who have had Brain Surgeries,
or will undergo it - can all post in one thread
and this thread won't get lost.

 

[Belinda5000]

HI Nancy,
I had a RTL in 1982 and I was awake.Just as my husband was awake for his in 1972 when he had a LTL and they got all the white mass in his brain his seizures stopped except for his auras. My seizures are on my left side side and that's a know know to do both sides I'll loose everything if they operate on my LTL after doing my right and removing the scar tissue the doc caused.

Belinda:brain::agree:

 

[Nancy]

Yes, Brenda -- when I started seizures again - 14-15 months?? - after my first surgery there was mild panic at the hospital and I was quickly slammed back in for many, many MRIs, PET, VEEG. The neurosurgeon said quite clearly they were MORE concerned about seizures being on the OTHER side (right instead of left) of my brain than a new spot of that tumor developing.
He said AGAIN they can never do surgery on the right side of my brain.
Because the seizures were definitely, no question, on the left side again, I had more surgery May, 2007, and haven't had a seizure since then!!

Maybe someday in the future surgery on both sides of the brain will be possible ..... it sure seems to be impossible now.

I was sound asleep -- I want to see a film but they won't let me .

 

[Elaine H]

Hi All

I was down in London yesterday 20th August, it was a waste of time and money really I guess, I didn't get to see the brain surgeon as we were 10 minutes late, I got to see his Registrar instead, but it wasn't the same, you build up a rapport with people don't you, and although he was a very nice guy, and seemed genuinely interested in my case, I would like to have seen Andrew, the man who put his hands in my head!
Anyway, he had a look at my scar, asked me all the usual questions, and seemed happy enough, I have to go back again February 25th next year, it's good that they want to keep their eye on me I guess, it's just an expensive trip when you aren't working, we had a wander round the British Museum, and a few drinks in a bar in the city centre, it was just so nice to get out of the house, it is driving me crazy being stuck here all day!! I find it hard having so much time to sit and think, and had a bad Complex Partial Tuesday night, I was eating my tea, the next thing Mark saw me put my cutlery down, and stick my fingers into my sausages and vegetables, and drag it all off the plate and onto the table! I had no warning, no aura nothing, I just cried afterwards, I'd been doing so well, Mark thinks I was worrying about the hospital appointment, maybe. I just know that if I can get a decent job and get busy again, I'll be so much better!
Hope everyone is ok and smiling? I'm trying!!

Love

Elaine x

 

[ashmstng]

I so sorry to hear you had a seizure. I really hope things get better for ya. Stay strong and positive. It sure takes time and patience to wait for things to fall into place you want it to. I am tired of waiting to go to school for what I have always wanted to do and drive. Not happening to depend on friends or parents. I want to be able to do things on my own. You take care and I hope evrything gets better for you. As of now the storm here is not fun. Too windy and alot of rain. I dont feel confortable until it is over. Talk to you soon.

 

[haird18]

I will be back in Dalls to determine if more surgery is needed!

Well friday Sept. 19th I will find out if the dictors will want to do a right hemipherectomy or be admitted for more testing to determine what the next steps will be in getting control of my seizures! I am already use to everything that they do so it will not bother me.
David

 

[stilldancing_98]

Oh David. I wish I could be there with you. I hope you know that. I did the WADA I did the grid, I did the surgery.I am here and back you up in any desision you decide. I will be your other wing. Teresa

 

[ashmstng]

*David-
I am so sorry to hear that. I really hope everything goes well for you. God Bless.


*Elaine~
How are you? I went to the doctors on August 25th. I had to have a MRI & EEG and visit my Neurologist. I can say I dont like either of the testings but I am used to it. It just feels like time goes by too slow. The one I hate the most was the Wada test. Which they said I wont have to do again. But the visit went well. So far no seizures and if it stays that way until November of this year I can get my license. I am not jumping in a car that fast. I will wait alittle bit. But we have taking me off one medicine Lyrica so far. Not sure when the other meds will be started.


*Nancy~
I seen you posted about the Neuropsych test. When I go back which will be 6 mths after my surgery. That is in November of this year. I have to redo that testing again. That one sure is long and boring. Reminds me of school but your in a smaller room. LOL...