I'm a seventeen year old female with temporal lobe seizures, who is thinking about getting surgery to prevent seizures. I was wondering if there was anyone who has had the surgery done and what your experience was after the surgery. thanks
I had brain surgery to remove a tumor & I was having right temprol lobe seizures, so my situation is different. But I did have a co-worker have brain surgery for seizures, and as far as I know, it had worked for her. Brain surgery is the RISKIEST kind of surgery, you can suffer hemrage, stroke, brain damage or dealth if something goes wrong. I had a stroke during mine, took me years to recoup (again mine was diff) but the brain is the most sensitive organ. RESEARCH other peoples outcomes, search all over the web & get as much research about your medical facility & surgeon as you can.
I was diagnosed with seizures 15 yrs ago, and I underwent Right Anterior Temporal Lobectomy April/2008 (age 26), and so far I been seizure free. Its not a easy decision to make, It wasnt for me, but it was the best decision I could have made in my life. To begin, they will need a series of test done to figure out what type of seizures you have and where they originated. To decide wether you are or not a candidate they must make sure that surgery is not going to effect your motor skills, speech, or memory. My surgery was a success Thank God, Im still on meds, but Neuro is thinking of taking me off next April so I can finally Become pregnant... The surgery itself was not bad, but post surgery recovery annoyed me since I had to wait months 2 get back on my feet. Anyways I hope you are a candidate and that surgery could help you, since nowdays its a very common procedure. If u have other concerns write, but remember to write all major questions down, to ask your neuro..
Thank you both for your response. I will have a video EEG done soon and will find out more about the pros and cons and whether or not I'm a good candidate. Hopefully it will be an option for me. I have seizures on a frequent basis (2-4 a month) and it makes it impossible to drive and keep a job. I want to go to college and live a normal life as much as possible.
Thanks again, I'll keep you posted with any updates.
I had a left anterior lobectomy.I am 45 and starting having seizures
at age 4.I can tell you since surgery I haven't any problems as
far as speech,my memory is not any worse than it was before due
to all the seizures I had in my life.But,unfortunately my seizures have
not all went away,I still have seizures,but, no where the amount I did
prior.Before surgery I had them every two weeks,due to hormones,
I have catamenial epilepsy.The month right before surgery I had 32
seizures that month,now I might have one every 6 or 8 weeks.I have
also noticed since surgery I have a little blurred vision,and I had to
get much stronger reading glasses, and if I read too long I will get a
very bad headache that may last a few hours,since then they started
me on migraine pills,but,it only controls a little.Sorry for the bad news,
but,don't let this discourage you,my family keeps reminding me how bad
everything was before surgery.If you have questions,I'll be more than
glad to help the best I can.
In early June 2007, I was diagnosed with epilepsy caused by a brain tumour, apparently within my left temporal lobe. I underwent surgery later that month to remove the tumour, following which I was informed that my epilepsy was "gone". I continued to have seizures (complex partial), but was assured by my neurosurgeon that these were panic attacks. All of my subsequent MRIs appeared fine.
In July 2008, I began having seizures on a non-stop basis, and was admitted to hospital through emergency. A new MRI was performed (from a new radiology clinic) and it was revealed that a tumour apparently the size of a tennis ball remains in my head. A comparison was made between my earliest MRI and my most recent - it shows that there has been no tumour growth, but rather that only a small (golf ball sized) portion of the tumour was removed.
I was very frustrated as I was never told that there was any tumour left behind - in fact, I was told the opposite, and made to feel as though it was my fault that the seizures were apparently continuing.
As my seizures have not responded to any medication to date, I am scheduled for further surgery in January 2009. The surgery is apparently "too risky" because of the area involved - I have to travel interstate to have it performed, as each neurosurgeon in this state has refused to treat me.
In terms of side effects from my first surgery, I suffered memory loss and general lack of normal interaction skills for the first couple of weeks after surgery (most likely also as a result of the heavy medication that I was on). I now have no memory (or very few memories) of the first few weeks after surgery. After that time, I noticed some speech difficulties (difficulties in finding words) which frustrated me greatly. However, this improved within a couple/few months of the date of surgery. I also became quite depressed and suicidal, and at no time was comfortable being left alone. I was also constantly distressed at the scar, and the loss of hair.
I understand that the next surgery carries greater risk of damage to my memory and language. I am very uncomfortable with this, as memory and language are the central requirements of my profession. However, I am currently unable to work at all, as I am generally having seizures on a daily basis (or sometimes several times a day) - although I have now not seized for around 4 days.
I'd recommend diarising your seizures - write down when they happened (both dates and times), what you were doing/how you were feeling beforehand, the particular type of seizure you had and what that involved (including whether it was especially severe, mild etc), and how you felt afterwards. This provides me with a good reference point as I generally do not remember my seizures (or rather, I remember that there was one, but I don't know when it was), or exactly how it felt. Although I have not done this, I imagine that you could have someone else keep the record for you if you were not able to do so due to tiredness/sleep etc afterwards. I'd also include any other relevant information such as dates of medication alterations, hospital admissions - anything that is important to your particular case.
I'm happy to discuss this with you further if you like
Kyestar, Im very sorry to hear of your first surgery, but due hope things turn better on your second surgery next year. I had my right temporal surgery also in 2007 but thankfully been fine since. I due hear the left temporal is more complexed. I will keep you on my prayers, but let us know how it goes... Best of luck to you
which lobe is your surgery R/L? This surgery will be similar to mine. I had Right Anterior Temporal Lobectomy for Mesial Sclerosis (hardend tissues) due to brain injury, and I had intractable epilepsy (which meant meds couldnt help my problem, only surgery)... I had a quarter of my right temporal lobe and medial Hyppocampus removed, but it was necessary for my freedom. Have you had all your exams done (EEGs, MRIs, and pre-surgical test, such as the WADA test done?) What is the surgeon's prognosis on your case? make sure your satisfied with their findings and decisions before you undergo such procedure. In my case I must say I was scarred but very hopeful of a brighter seizureless future, so if this is what it takes I tell you to go on. Do study lots I did for 2 years, any other questions you'll like to ask, Im here... Things will be just fine
I've had epilepsy since I was 3 after falling down a flight of stairs. My complex partial seizures could never be controlled with medication. I had 2 to 3 seizures per week until the neuorsurgery in 1990. I had right temporal lobe surgery performed at Tufts Medical Center in Boston. I'm 40 now and have not had a seizure in over a decade. Last one I had was when I forgot to take tegretol that morning. I still have epilepsy but the seizures are controlled with 1500mg of Keppra per day.
The nerosurgery had no effect on my brain function. I got a BSEE degree with a 3.8 GPA in 1994. The neurosurgery was life risking but was well worth it.
I know exactly how you are feeling. Today is actually been 1yrs and 8 months since my surgery, and so far so good. I felt just like you prior to my surgery, but I know if this is going to change your life forever after so long, your wife will be so happy as well. Yes its difficult at first, I only had my husband helping me and cooking for me, but he was happier to help me for a few weeks than a whole life putting up with my seizures...lol Trust me as long as your mentally ready, which is the most important thing, and you know you'll be surrounded by loving people after surgery, you should feel lucky. Remember that you will have to be immobile for the first few days, well u need to avoid pushing or pulling things, no bending over, no exercising, and noise and lights will bother you for a while, it did to me. I was in the hospital for 9 days, but I had high fever that wouldnt go down without antibiotics, aside from that everything else went good, I didn't even take pain killers after arriving home. I had a lot of emotional changes due to brain swelling, crying and anger for no reason, but its normal. Do what I did, sit down and speak with your wife and family of all changes to come, and they will understand, make sure you teach them about the procedure and what to expect post-surgery, trust me it helped my husband (I was surprised of his understanding and help). As for you, study all about the procedure, prepare your house, so everything is reachable without bending, and your bed needs to be raised for your head, to avoid blood cloths or pressure. There is lots to discussed when it comes to this surgery, but for now make sure you asked your surgeon about post-surgery effects, and recommendations. I lost my upper left eye peripheral vision, but was told prior to surgery, it was a small price to price to pay for freedom, but I'm used to it now. Anyways sorry for a long post, but keep me updated. Trust in God things will be fine, Ill be praying for you....
In general due to memory and speech locations in the brain, left lobe surgery is more complexed than right lobe surgery. I underwent right temporal and prior to my surgery I had very bad memory and my neuro-psych eval. showed problems in short term memory either through vision or verbal.. Post-surgery neuro-psych showed the opposite effects, my memory had been restored, and even my reflexes were better. According to the doctor, the bad tissue in my right lobe was suppressing my left lobe causing memory problems, but since they removed it, my memory had return and my left hemisphere is much stronger since it's what my brain is depending on..lol i can say for sure that same results can or cant result in your case, but I have spoken to individuals who underwent your type of surgery and they had amazing results, 10 yrs seizure free, no memory problems and better lives. Once again only your neuro surgeon knows for sure how your outcome will turn out depending on where he's cutting. Make sure you ask if it's necessary to invade and cut through such areas, what will the outcomes be, and if they can be avoidable? So far how was your neuro-psych eval?