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dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 3/31/2006 11:02 AM (GMT -7)   
I just had the WADA test and my next step is the Surgery and i am very scared. I am so happy for you. There is a small, real risk of some memory loss or language problems following the surgery due to the location of the tissue being removed on my left temple lobe. I AM SO SCARED.


Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.

Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.


Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 3/31/2006 8:11 PM (GMT -7)   
What exactly is the WADA test?  Good luck to you in everything.
 
Uhura

dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 3/31/2006 8:40 PM (GMT -7)   
Here are some Websites explainig what a WADA test is:
http://www.epilepsy.com/epilepsy/surgery_wada.html
http://www.mcg.edu/neurology/clinical/epilepsy/services/surg_wada.htm
http://en.wikipedia.org/wiki/Wada_test#Method
hope this helps
Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.


aussie2006
New Member


Date Joined Apr 2006
Total Posts : 15
   Posted 4/12/2006 10:48 PM (GMT -7)   

Hi there Dinger 57,

                     I am from Australia, and had the surgery done only 6 weeks ago. Yes it is extremely daunting and a frightening prospect to face, but, as my neurosurgeon told me ,it is less painful than having your appendix taken out. I had 5  centimetres of my left temporal lobe removed and the hippocampus behind that. I was concerned about loss of memory and other functions before the operation and was keen to have a wada test done for conclusive proof of what may be lost when the tempoaral lobe was removed, my nuerologist had me take a relative new test which is claimed ,( and proved for me), to be far more conclusive and less invasive than the wada test- this new test is called an fMRI standing for functional mri scan, it is very similar to a usual mri only you are required to think of nouns to the verbs they show on a screen in front of you whilst the scan is in progress, from this thwy can tell which side of your brain is active and would very likely have these functions .

For me this test proved that all these functions crossed from the left side of my brain to the right when I was a child , which meant the operation had little risk of loss of memory etc.

As far as the surgery itself is concerned , I woke up from surgery with no pain , I was given morphine during surgery and this didnt wear off until the following night ,yes I did get headaches but not violent ones like you may expect. The brain you see has no feelings which helps to minimize pain. I did not get a really severe headache until the night I came home from hospital 7 days later.

Please contact me if you would like more information,but I can assure you it is definitle worthwile, have you seen a nurosurgeon yet? has he given you an idea of what percentage of success would be in your case? In my case it was 70$ chance of cure 20$ chance of improvement  and 10$ chance of no change.

 One thing to remember ,every case is different and every one will be affected differently.

I return to work in 5 days time,I still have a little trouble focusing on close things but this is to be expected. 


dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 5/7/2006 7:06 PM (GMT -7)   
Hi Jen I am going in for surgery June 5.  I am so scared.
Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.


tra
Regular Member


Date Joined Mar 2006
Total Posts : 100
   Posted 5/12/2006 7:42 PM (GMT -7)   
I wish you lots of success with this surgery.  You will be in my thoughts and prayers.  I will be waiting to hear from you when you can post surgery so we know how all went.
Tra
 
mom to >
Kimberlyn-ACC, Seizure disorder and Brachial Plexus
Dylan-Bipolar, ADHD and ODD
Raeanne-ADHD and Anxiety disorder
Madalyn-our new addition


aussie2006
New Member


Date Joined Apr 2006
Total Posts : 15
   Posted 5/13/2006 10:54 PM (GMT -7)   
Hi Dinger 57
Keep a positive mind, it will be a big help. When I had the surgery March 1st 2006 I couldn't believe how little pain I felt when I came out of the anasethic . I was given morphine during the operation ,I did not feel any pain until the night after March 2nd, and even then it was not severe.
I hope your doctor gives you steriods,(if you are not allergic to them)it helps reduce the swelling a lot. around the eyes . My epilepsy was also left temporal lobe, the only problem that has arisen for me as a result of the operation is close vision,reading etc, but I am working on this now ,as I had to wait at least 7-8 weeks after the operation before considering replacing any prescription glasses because of the steriods I was given in hospital..
Make sure you take some sort of entertainment with you(radio,ipod or personal cd player) to help pass the days after the operation,over here the norm .is to keep you in hospital for at least 7 days after the operation for observation.
I hope you have family members who can support and help you during your time in hospital and recovery when you get home, you cannot under estimate how much having someone with you or just being there will help ,I personally believe the support and help my parents gave me assisted me enourmously. Good Luck

aussie2006
New Member


Date Joined Apr 2006
Total Posts : 15
   Posted 5/15/2006 4:08 AM (GMT -7)   
 
   A short note to anyone out there reading this forum who is still considering brain surgery or  undergoing the lenghthy process of tests to see if you are a suitable canditdate, speak tp your
neurologists about the fMRI test, (functional MRI ) this is a relatively new test ,so new it is currently NOT an item that can , be claimed on our public health system medical insurance scheme Medicare. The fMRI is a test that replaces the old WADA test,and is very similar to an ordinary MRI scan only the operator asks you to "THINK" of nouns that relate to a verb that is shown on a projector screen in front of you whilst the test is running.  It is relativly expensive at the momement but it is well worth it been non invasive like the WADA test. I wanted a WADA test until my neurologist told me about this new technology and believed to be as good if not more reliable than a WADA test.
     Good Luck to all Going through the processes of having the tests and confronting the surgery. It is a Life altering operation .
 

dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 5/19/2006 6:07 AM (GMT -7)   
They are going to put some kind of strips on my brain first to narrow it down were the seizer comming from even more. I hope I don't have alot of pain. I am so scared I am going to come out stupid or worse then I was before the operation. The doctor that is doing the operation told me what could happen after the operation and it scared me so much that I had seizers ever time I left his office. He said its deep in my left temperal lope and it might effect my short memory.  I need your support so bad or I will not make it. Thanks for responding.
Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.


aussie2006
New Member


Date Joined Apr 2006
Total Posts : 15
   Posted 5/19/2006 9:42 PM (GMT -7)   

 

   Hi Dinger57. I know this sounds easy for me to say, but there is no need to scared(although I must admit I was nervous also before my op), I assume you have been through all the various tests to see if you are a suitable candidate for surgery, telemetry EEG, spect scans , Physcologists  to test your current capabilities and other specialists to see if your body is mentally capable of handling the op,just to name a few. If your surgeon believes you are a suitable candidate and he has given you a good percentage rate of success, I would doubt you will come out of the op with any scary damage to you.( my surgeon told me my rate of sucess was 70% chance of CURE,which astounded me as no one has ever said they could cure me).   I am now approaching  12 weeks since my operation and have not had any turns.  

 I have experienced some problems regaining normal eyesight,by normal I mean the same as I had before the operation. I saw my surgeon last week and he believes my eyes will be normal within 6 months.When I was in hospital I was given steriods for my entire stay, twice a day, this is to help reduce the swelling around the eyes that occurs as a result of surgery,the swelling normally appears about 2 days after the op ,and the area around your eyes will go black-dont worry, if you are given steriods like I was it should disappear within 3-4 days.

 The only other evidence of my operation is some very slight swelling around the face near my left ear and of course the scar on my head from the cut ,which now you would not know was there as my hair has covered it completly and there is no pain from scar at all,I do have a slight numbness on my left side of head which I am only aware of when I brush my hair,the surgeon said the nerves there will take about another 9 months to reconnect ,so even the numbness  will go away eventually.

 One thing I did do before I went to hospital , because I wanted re assurance incase anything did go wrong,just like you are worrying now. I got an enduring power of attorney,for one of my parents to take control of all my financial affairs and to have the legal right to be able to do things on my behalf. I dont know what the laws are where you live but it must be an enduring power of attorney  here. Doing this helped give me peace of mind.

 I had no memory loss but that coulld be due to the fact that all the functions normally performed in the left temporal lobe,including memory, had switched to my right temporal lobe as a child. This was only discovered when I had the fMRI scan done.

I hope you have been able to get into a private hospital or at the very least single room accomadation in the hospital. I was fortunate and had both .

I wont go on with more at the momement I dont want you to worry un necessarily,take care ,and I hope that all goes really well for you. Keep in touch.

                                                    Aussie2006

 

                    

            

        

 

dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 7/28/2006 4:32 PM (GMT -7)   
I am into my 5th week of recovery after my brain surgery. I didn't what to do a thing after my surgery including eating, reading, watching TV, etc. I mean anything! I couldn't even stand to look at or smell food, but it is getting better even though I am still not eating much. I still have hardly hair were they did the surgery, but it is slowly coming back. At first I got very light headed when I stood up but that has mostly gone away. It does happen but not as much now. I haven't had any loss of memory at all. At first I was not able to sleep at night after the surgery. I still only sleep for about 45 minutes and I am awake, then I go back to sleep for another hour. I only sleep for about 4 to 5 hours a night, but I feel ok the next day. I have had what they call auras but NO seizures since my operation and I plan on Not having anymore ever again! I am still not to supposed to do any work until I get my strength back and the doctor gives me the ok.
Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.


dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 9/4/2006 6:57 PM (GMT -7)   
Its been almost 2 months since my surgery and I haven't had a seizure since. My hair is almost growed back and I am starting to sleep alittle better. I am also starting to eat better and gain alittle weight back. I lost my weight when I was in the hospital. Just what to thank everyone that has sent me a response, its been a real encougement to me.


Had My Brain surgery, and I was so scared, but the doctors made me feel good and and I did. They kidded with me before the surgery and before I knew it I was in recovery Thanks for helping me. Mine is on the  left temporal lobe. They say it is deep it my brain.


aussie2006
New Member


Date Joined Apr 2006
Total Posts : 15
   Posted 9/5/2006 4:45 AM (GMT -7)   
Thats great to hear its been 2 months since last siezure. I am now 6 months down the track after surgery and like you free of siezures.  Dont rush things, I was off work 7 weeks and was away from my favourite sport, dancing for 13 weeks. You may find, once you get back to normal life a few differences.  I still, walk in my office door, see my work colleagues ,and occassionallythier name is gone from my mind,even though I work with them every day.             I go for my post neuropsychology test tommorrow to see what chages,if any, have occurred.
I still occassioally, lose balance but I am able to quickly regain it again. Its little things lke this you may notice.  Good Luck  
                        Aussie 2006

sexysahar
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 11/30/2006 12:40 PM (GMT -7)   
hey every one I sopport all of u guys with your surgerys I had brian surgery 4 years ago it was painful wish u all luck in every thing. I just want to say I have been taken topomax and my head has severe bumbs I dont know if its because of the surgery or topomax I had a few bumbs after the surgery however after taken topomax it has worstened I dont know what to do

loulou0621
New Member


Date Joined Nov 2006
Total Posts : 10
   Posted 11/30/2006 9:13 PM (GMT -7)   
My daughter had her surgery on Friday Nov. 10th to have the intercranial with
leads done, it was about a six hour procedure. She was put into ICU after and
the data started to register on the seizures she was starting to have. On
Saturday the doctors came in to say that they were getting good data but that it
was on the edge of were the leads were and that they would have to go back in to
put more leads in.That took place on Monday Nov. 13th another six hour
procedure. She was back in ICU stayed over night and in a regular room on
Tuesday. They lowered her medication some because the seizure activity slowed
down. She was very uncomfortable, did not want to move her head. She had a
partial seizure and the doctors received the information they wanted to get. She
had a vision test done on Wednesday the 15th and they also tried to stimulate
some of the leads in her brain. The stimulation was bringing on a seizure so
they stopped it. That night she got very sick and kept
throwing up, it was awful. In the morning she was running a slight fever,but
the surgery still went on. She went in Thursday the 16th morning at 9:00 AM and
was done at 3:15 pm. I was so frightened wondering if the fever would get worse,
that infection was setting in, that when she opened her eyes that she would be
frightend if she lost any of her sight. I had so many different things running
through my mind and it all turned out wonderful. The doctors said that if they
did not do the intercranial the results might not have been the same, it helped
tremendously. It was a long hall and having three surgeries in less then a week
was such a toll on Victoria, but she was such a trooper. She has been through so
much and today is Saturday the 18th and she is up and about and feeling more
herself. We are waiting for a MRI, the doctors say that the percent of her being
seizure free is 50 to 70 percent. We hope it will never happen again and are so
happy that she did not lose any
eye sight. Thank You Dr Feldstein,Dr Goodman, Dr Gilliam and Dr.Pack.
Today is November 30th, Victoria has been having some problems with her left
eyesight. I was scared that she might be losing some of it now, the doctors say
that it would of happened right after surgery. She still has alot of inflamation
on the brain and it is the post op healing process, we are coming off the
steroids alittle slower and it seems to be working. Although her moods change
alot,but we manage. We go back to the doctors December 6th,we'll keep you
posted.
God Bless,
Fran and Victoria


sexysahar
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 12/5/2006 12:17 PM (GMT -7)   
hope everything is going good with your daughter

loulou0621
New Member


Date Joined Nov 2006
Total Posts : 10
   Posted 12/5/2006 8:47 PM (GMT -7)   

Victoria is still having some vision lost on her left side, it comes and goes. Yesterday she had four episodes. Today she said nothing. Reducing the steroids alittle more and seeing the doctor tomorrow.

Keep you posted

God Bless

Fran and Victoria


sexysahar
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 12/6/2006 7:28 AM (GMT -7)   
another method to cure  seziures is to use yantras When surgery and medication dose not work use a yantra they say it helps I used a yantra for my seizures it worked try this for your daughter they sell it in India HOPE THE BEST FOR YOUR DAUGHTER VICTORIA MAY GOD BLESS HER

loulou0621
New Member


Date Joined Nov 2006
Total Posts : 10
   Posted 12/7/2006 1:15 PM (GMT -7)   

Before my daughter went for surgery we went to a healer. He told us that she took his energy very well and that the colors would go away,that never happened. What does the yantra do? Do you have to meditate with it like yoga ? We were at the doctor yesterday. Told us that the weakness and the hand tremors can be from the steroids and that her body went through alot having three surgeries in a weeks time and that the body needs time to heal, we will just watch and see. Patholgy report showed some aggressive cell growth and that it was still a JPA. The MRI that they took after surgery was clean they say,although cells could of been left behind since the tumor is begnin the cells could become dormint or just die off, we hope. We wil have another MRI late February or March. Hope all is well with you.

God Bless

Fran and Victoria


mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 12/21/2006 6:59 PM (GMT -7)   
 
 
 
    Hi, I had brain surgery 4 years ago, and I'm doing great!   I had a right temporal lobe lobectomy.  I had seizures for over 25 years of my life before having the surgery, though my journey was very long, it has made me the person I am today.  I am Strong and full of compassion.
 
      Having the surgery was an answer to my life long prayers.  God does answer prayers, I had surgery on June 11th 2001, and have not had another seizure since the surgery.
 
    I would be more then happy to try and answer any of your questions that you may have about the surgery.
 
    Is there somewhere we can post our e-mail addresses so that we can get in contact with others who want to talk more one on one?
 
   Merry Christmas!
 
  
    Mercyme

seizures101
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 1/7/2007 11:22 PM (GMT -7)   
Hi everyone! I had my whole right temporal lobe removed back in 1999 to control my gran mal seizures.Back then I was 26 years old.I was a new father to a new little girl.Before the surgery I went in for all the electrodes to be put on my head and so on.Well to make a long story short my neuro.took out mt right temporal lobe.I was so scared before the surgery,but I would not go back and do anything different.
Since the surgery I have also had the VNS put in.I had it put in last year.I have not had any gran mal seizures in over 4 or 5 years.My short term memory is terrible,but that is a small price to pay to get rid of the gran mals.I still have break through seizures when I don't get enough sleep but this VNS really knocks them out when I fell them coming on.I've been on probably every medication out there in my 34 years.Right now I take 1800mg neurontin,1200mg dilantin,500mg zonegran,and 1.5mg clonazapam a day.I take alot of meds.but it seems to help.The only side effects I get are swollen gums from the dilantin.I also get moody from time to time.
Well it was nice talking to everyone.If you have any questions fell free to ask.

Michael T.

dancingfool
New Member


Date Joined Feb 2007
Total Posts : 1
   Posted 2/6/2007 9:52 AM (GMT -7)   
tongue Hi there, new to this forum. Had a Right Temporal Lobectomy on January 3rd 2007 and I have some questions regarding the recuperation process. If anyone can give me info on how long it took you to heal, and what kind of restrictions your doctors put you on regarding physical activity following the procedure I would appreciate it. I have had a rough time with my recovery. Probably due to unreasonable expectations! I really thought that I would just jump up off the operating table and return to life as I knew it right away. My doctors told me to plan on taking a month off from work following the operation but it looks like it will be at least two months. I had a LOT of swelling when I returned home and also debilitating headaches. I have gotten the swelling mostly under control and the headaches are better too now that I am about 4 weeks post op. But I still have terrible jaw pain, the incision hurts, and most of all my right eye is very painful. Probably because I still have quite a bit of swelling around the eye and it is putting a lot of pressure on it.
I keep hearing about people who had zero pain following the operation and who went back to work immediately and who started exercising immiately too. While I am happy for them I have to wonder why I seem to be one of the few who is struggling with recovery.
Any info would be most appreciated.
Thanks so much!

seizures101
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 2/7/2007 1:20 AM (GMT -7)   
   dancingfool when I had my surgery back in 1999 I was off work for about 2-1/2 months.My left eye was completly shut for about 5 weeks of that.I had no function of my eye at all.My Neuro.said before the surgery that there was a chance that he may cut a nerve that operates my left eye.Well when I woke up in the ICU and could only see out of one eye then I knew what had happen.My neuro.said that once the nerve grew back and the swelling went down  that everything would be fine,and about 5 weeks later I woke one morning and could see out of both eyes tongue
     As far as my head and swelling yeah I had LOTS of that also.My wife at the time said that when I was in ICU she could see my head throbing.I couldn't sleep for weeks on that side.Heck sleeping at all with that big wrap around my head was hard enough.I have to say though that between that surgery and my VNS my seizures are SO MUCH better.I haven't had a gran-mal in a couple of years.I still have the break through seizures from stress,or lack of sleep but my life today is much better than before the surgery.I only have one place on the right side of my head where my hair did not grow back as thick.Don't get me wrong I'm not bald at all,it's just where they made the insision where it's a little thin.Hey NO BIG DEAL. :-)
     I wish you all well and a speedy recovery.Just hang in there.I promise everything will work it's self out.
 
                                                                                                                                                Michael
 


Cbeecher
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/1/2008 5:04 AM (GMT -7)   
Looking for some info,  I am looking at having some brain surgery sometime some.  I have a blood clot a little smaller then a dime on the left side of my brian.  It is not active and just laying there but once in awhile it does bleed a little.  They are trying me on different drugs that I am not liking to help with minor convulsions in the head that causes the bleed.  My main concern is the surgery itself.  I know medications and surgerys have really come along way but still I have some concerns.  Any infomation that anyone can provide to maybe feel alittle bit better about this I would love it.  Thank you

Horsewhisper
Regular Member


Date Joined Jul 2008
Total Posts : 21
   Posted 8/1/2008 7:42 AM (GMT -7)   
Cbeecher,
I have had a craniotomy, although it was for a very large brain tumor. I am not sure if you need general information about brain surgeries, or need to know what someone's experience was. There is so much sterile information on the internet about almost every brain procedure there is, that I presume you would like some information regarding the experience. If I'm wrong, ignore me. :)

Having to do this more electively is infinitely harder, I am sure. Mine was not something I was able to ponder over. It was about 3 years ago. I had a prolonged tonic/ clonic seizure that led to its discovery. I was hospitalized in the ICU where I subsequently had a stroke waiting for my intracranial pressures to decrease so that they could perform the surgery. I was pretty out of it for the 6 days before the surgery, but I do recall being very anxious about it, yet knowing that it was inevitable that I had to have it done or die, yet also felt pretty certain that I was going to my death when I went to the OR. It was a strange, almost 'into battle' feeling. I don't know how else to describe it. I had been married only 8 weeks to the day when I went into the OR.

Going into the OR was the most lucid moment I had in over a week. I will never forget it. I am a trauma RN. darn that. I knew what everything was and what it was going to be used for. That just made it all the worse as I looked at the tables. The nurses realized this as I went in the room and saw the look on my face. They quickly covered everything up and started yelling at the techs. "He's a nurse, cover up that stuff, he's going to get sick." I almost laughed, almost. I've read 10,000 operative reports. I was "prepped and draped in the usual fashion." As they nailed my system with pre- anesthetic meds, I remember thinking, "this could be my last lucid moment."

Quite literally an instant later, I was in PACU (Post op), and my neurosurgeon was smiling at me (we were friends before the surgery but not after, darn that too). I had absolutely no discomfort at that time. A lot of vertigo and nausea, but no discomfort. Not even bone pain, oddly. I had some difficulty with everyone's name the first day, but that ended by the next morning. I slept like a baby that night. I remember being wheeled back to the ICU and being put back into my bed. I have NEVER layed in a bed that felt so good before or since. It was literally the most comfortable, soft, sweet smelling bed that I have ever been in before or since. It was absolute heaven. I can't tell you how grateful to God I was to just be alive and able to go to sleep in that bed. I zonked out for 14 striaght hours. Next morning, I woke to a pounder of a headache, but I was even grateful for that!

The experience is not one I would jump up and down to repeat. I was in the ICU for 3 weeks due to multiple other issues, and I had more going on. I will say that the craniotomy was not the horrid experience that I had in my mind prior to having had it. I would never personally fear it for myself to save or improve the quality of my life.

I hope this helps you to make a decision. Bless ya!!

HW
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