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.
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!
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
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
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
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
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
BRAIN SURGERY - I too had left temporal suregery, A left temporal anterior lobectomy. This was back in 1998. I just want to mention it could affect every one in different ways. I was not told all the FULL AFTER EFFECTS. I had severe pain, I had TOTAL LOSS OF MEMORY, and had to begin a new life over again. When I say total loss, I mean EVERYTHING. I didn't know who I or my family was, I could not read or write, I didnt even know what a pen was. The pain was severe!!!!!!!!!!!!.....to me it felt like a migraine X 10!!!!...tylenol 3 did not help, so my doctor had to put me on tylenol 4!!!...I was in bed and all I did was sleep for 5 weeks.
I then had to do my re-learning of everything. I was 31 years old at the time of the surgery. My scar is around 9 inches.
I Still have many things I can't remember of my past, as well as long and short term memory. I can not work full time again, I had to go on disability, and "cash in" all my savings. I now live on a low income, and honestly, it isn't fun. It is bad enough to lose the memory, physical activities, etc.
Being only 31 at that time was even a bigger challenge.
It did
however fix the complex partial seizure.
I do have trouble communicating, learning, and many other things as a result. I still get pain from physical activities(running, lifing, tension, etc). Something I was not told about. I am limited to extreme light things.
I do get laughed at by the way I speak, or having the lack of knowledge, again, I should have been told the after effects.
It is a new life!!. What I am saying is to do what you feel is comfortable with. If you aren't 100% ready, then maybe ask more questions, or get another neurolgist/neurosurgeon to do an evaluation. Many doctors think differently.
I also have been told by a new neurolgist I see that my BRAIN SURGERY WAS NOT NECESSARY. There were new things created that could have done the same job or better. It is a form of surgery, but not removal of the brain. It is the isertion of some device that sits between the brain and skull...this will "obsobre" the unecessary electrical disturbance in the brain that causes seizures. (similar how lightening is obsorbed by certain poles or rubber.
I was also told that even though they removed 1 1/2 inchs of my left temple, I will probably have seizures return at one time. I was told that yes, they removed the "main part" of the situation, but things will redevelop over time. (kind of like removing a majority of the cancer, but the remains could probably be growing again because not all was removed.)
if all of the effected part of my brain was removed, then I would not be mentally alive today....known as a lobotomy.(or similar).
so I recommened that you take this seriously and find out all the information you can get. Surgeons have legal rights to not tell you ALL the things they do, and even lawyers can't get that information.(Unless a miracle happens.)....sometimes patients are not told the full details because it could cause mental issues that could have the seizures returned, or affect them in other mental ways.(fears, anxiety,etc).
Don't let the fears take control. Yes, you will be frightened, however the more you learn and the more conficent you are, the easier your decision will be, plus also your recovery. Like many people here said, things went great. Plus as you see, even though my situation was more challenging, I still am here, seizure free(complex partial - other seizures had developed,but under control), and try to enjoy the life I now see.
regards
Bill
I then had to do my re-learning of everything. I was 31 years old at the time of the surgery. My scar is around 9 inches.
I Still have many things I can't remember of my past, as well as long and short term memory. I can not work full time again, I had to go on disability, and "cash in" all my savings. I now live on a low income, and honestly, it isn't fun. It is bad enough to lose the memory, physical activities, etc.
Being only 31 at that time was even a bigger challenge.
It did
however fix the complex partial seizure.
I do have trouble communicating, learning, and many other things as a result. I still get pain from physical activities(running, lifing, tension, etc). Something I was not told about. I am limited to extreme light things.
I do get laughed at by the way I speak, or having the lack of knowledge, again, I should have been told the after effects.
It is a new life!!. What I am saying is to do what you feel is comfortable with. If you aren't 100% ready, then maybe ask more questions, or get another neurolgist/neurosurgeon to do an evaluation. Many doctors think differently.
I also have been told by a new neurolgist I see that my BRAIN SURGERY WAS NOT NECESSARY. There were new things created that could have done the same job or better. It is a form of surgery, but not removal of the brain. It is the isertion of some device that sits between the brain and skull...this will "obsobre" the unecessary electrical disturbance in the brain that causes seizures. (similar how lightening is obsorbed by certain poles or rubber.
I was also told that even though they removed 1 1/2 inchs of my left temple, I will probably have seizures return at one time. I was told that yes, they removed the "main part" of the situation, but things will redevelop over time. (kind of like removing a majority of the cancer, but the remains could probably be growing again because not all was removed.)
if all of the effected part of my brain was removed, then I would not be mentally alive today....known as a lobotomy.(or similar).
so I recommened that you take this seriously and find out all the information you can get. Surgeons have legal rights to not tell you ALL the things they do, and even lawyers can't get that information.(Unless a miracle happens.)....sometimes patients are not told the full details because it could cause mental issues that could have the seizures returned, or affect them in other mental ways.(fears, anxiety,etc).
Don't let the fears take control. Yes, you will be frightened, however the more you learn and the more conficent you are, the easier your decision will be, plus also your recovery. Like many people here said, things went great. Plus as you see, even though my situation was more challenging, I still am here, seizure free(complex partial - other seizures had developed,but under control), and try to enjoy the life I now see.
regards
Bill
I just love how this forum takes license to "edit" our most heart rendered moments and water them down. The word "dam" becomes darn and I feel like we are in "Leave it To Beaver" world. It's kind of sad.
Eva Braun lives here. I didn't use a word that eludes to fornication or any other major vugar stray into literary obscene idiocity. At times, punctate is appropiate. Why couldn't the 'powers that be' leave that alone?
Eva Braun lives here. I didn't use a word that eludes to fornication or any other major vugar stray into literary obscene idiocity. At times, punctate is appropiate. Why couldn't the 'powers that be' leave that alone?
HI there,
We edit posts here because this is a 13+ website and as such we need to make sure that all the content (including references of a sexual nature, swearing and references of an illegal nature) is suitable for minors. We try and leave as much as we can and contrary to popular belief, we dont actually LIKE doing it.
Im not sure which particular incident you are referring to but if you feel like you have been treated unfairly, please feel free to email the administrator of the site. Unfortunately we are all human and sometimes mistakes can be made.
Darren
We edit posts here because this is a 13+ website and as such we need to make sure that all the content (including references of a sexual nature, swearing and references of an illegal nature) is suitable for minors. We try and leave as much as we can and contrary to popular belief, we dont actually LIKE doing it.
Im not sure which particular incident you are referring to but if you feel like you have been treated unfairly, please feel free to email the administrator of the site. Unfortunately we are all human and sometimes mistakes can be made.
Darren
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I had right temporal lobe surgery and they removed the hippocampus and amygdala.. I am asthmatic. Verbal skills are on the left side and organization on the right. I am also asthmatic and they wish to give me steroid inhalers. Does anyone know if steroid inhalers will affect the remaing hippocampus and make me lose the skills on the right side? I am still out whether this surgery is worth it. I am scared. I had it december 2009