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To do or not to do, that is the TLE question. Whether tis nobler of the mind to suffer the slings and arrows of ....

Hello,

I am a new member and this is my first posting. I am looking for anyone who has recently had surgery on the left temporal lobe (hippocampus area). I think they are only considering taking out a part of mine at the moment. I have done all the tests Video EEG, MRI, FMRI, Wada etc.. They would be doing my surgery at NYU. Have any of you done it there?  I do not have scar tissue that can be seen in my MRI. It appears that my left temporal lobe is bigger than my right one in the xrays. They are suggesting a two stage operation where they will first put in the electrodes to find the source during the first week. The second week would be the operation (possibly a part of it I'd be awake). Have any of you done this operation? What is it like to be awake when doing it?  I am being told I will have a huge headache after surgery but I'm scared to death reading some of your past posts on how some of you have done the surgery and are now having on going migraine headaches that are not going away. I am only having one seizure per week. I am very tired for at least 2 or more hours every afternoon from the Keppra.  I am having trouble weighing it out whether or not to go forward with this operation. I don't feel I am getting enough information. Anyways are any of you like me or were you and what is your story? I do have a bit of a life. I am okay in the morning and evenings but can't drive or have a job since in the afternoons I'm on the bed.  The doctor is telling me the epilepsy will only get worse as I get older. My problem is how bad will my memory become? After surgery will I have the brain of a 70 year old or what? I don't know what to expect. Thanks in advance for any replies to this.

Isis

Comments

I had surgery on the left

I had surgery on the left temporal lobe.  During surgery I was awake.  During the surgery you are heavily drugged with a drug which can be raised and lowered easily.  Sometimes I was fairly alert and  at others completely unconscious.  I have no recollection of them cutting my skull or closing up after done.  I do remember the Drs eating lunch and me bitching at them about how hot it was in there.  They said the heater was broken (I found out later they need to keep it really hot because your brain is exposed).  I do remember them using various cards and having to give answers to the cards for several hours.   I remember the blue cloth covering they use to cover the surgery area.  You are so severely sedated it is not troublesome or painful.  I had the opposite effect as far as migraines I went from several years of having a continual migraine to within six or seven months of the surgery no headache at all.  It definitly will give you a whopping headache immediately afterwards.  If it is temporal lobe  you may have muscles for your jaw cut through which creates it's own headache and eating  difficulties.  It takes about six months for the muscles to heal (which is why I said six months for no headache, the migraines were gone with siezures about two months after surgery).  Immediately after surgery I had difficulties with memory, speech, reading and writing due to the swelling of the brain.  As the swelling went down each came back.  I also have had the experience of nerves reconnecting which is peculiar but the feeling doesn't seem to last long for me.  I would ask your Dr for specifics of what they believe could happen as a side effect of the surgery.  I was having hundreds of seizures in a day when I went through surgery, thus I had liimited choices.  I have been very fourtunate with the surgery I have been able to go back to college, go back to work, start driving, get married...  It is a hard deciscion you have to make. 

To do or not to do, that is the TLE question. Whether tis nobler

Yes I am frightened as hell to make this desicion because I'm only having the seizures once a week at this point. I don't want to come out of surgery worse than when I went in. I don't know what to do or what to think about the whole situation.  I didn't know about the cutting of the jaw muscles. I guess the surgeon didn't mention that to me yet because he doesn't know exactly where in the temporal lobe my problem lies???  Thank you so much for telling me about this because I had no idea of why people were complaining about the jaw pain. So are you still having attacks? or are yours all gone now?

Isis

To do or not to do...

Hello Isis and Earthmonkey...I only registered on this site earlier today and came across your entry Isis, and Earthmonkey’s response and have decided to put my two cents worth in as well.I have also spoken with a friend of mine a few hours ago, and with an ounce of luck, Paul may also register and give his experience, feedback and support soon. My neuro-psychologist phoned me seven or eight years ago and asked if I would talk with Paul because he had the same situation and circumstances as I had experienced in 1996. Paul and I have become good friends and keep in touch, albeit too infrequently!!! LOLAnyway, here we go…I had two “epileptic” seizures in March and April 1996. On both occasions I woke up in hospital 2 hours or so later “fighting a nurse” off.  I was initially diagnosed as having Mature Onset, Non-specific Tonic-Clonic (or Grand Mal) Epilepsy. On the second occasion, I was in hospital overnight and the two junior medic’s (a “Registrar” and an “Intern”) organised an MRI after having a CT scan.  The senior Neurologist vetoed their decision 10 minutes before the MRI was due to be done. The three argued this point at the foot of my bed which I found quite confronting.Anyway, I was prescribed Dilantin, and sent home without my drivers licence (drove my wife crazy as a “back seat driver” and I learned how to use the Public Transport system very quickly!!!). A few weeks later I spoke with a client of mine who I new had Epilepsy and he suggested I speak with his neurologist. I finally did this a few months later, ostensibly to regain my drivers licence. Upon visiting the neurologist he asked about any history of head injury and there were plenty… several sport related over many years; falling out of a tree as a kid; falling of the push bike on the road due to a tyre blow-out in the late 1970’s (long before helmets existed!!!) and other incidents over the years. One of the more serious events occurred a few years before the seizures when I fell off the roof! Anyway, the neurologist organised an MRI and in September 1996 he gave me the result… the MRI showed a distinct tumour in my Left Temporal Lobe. A few weeks passed while a WADA test, EEG and ECG were undertaken. Numerous testing procedures were instigated to test my speech, word selection, sort term memory and problem solving capacity due to the presence of the tumour… a daunting and tiring few sessions with the neuro-psychologist who eventually referred me to Paul a few years later! As the day for surgery approached, I was given the option to consider being awake during surgery. I did not hesitate to say "Yes", but in the end, the neurosurgeon/neurologist/neuro-psychologists team decided not to. On 1st Nov 1996 I went into surgery with many copies of silly “Far Side” cartoons being handed out to the staff covering medical procedures, nurses, doctors, surgeons, x-rays etc… and created lots of laughs!!!Anyway, I underwent a partial Left Temporal Lobectomy and the subsequent test revealed it was a Grade 1 Xantho-Pleomorphic Astrocytoma approaching the size of a golf ball. Fortunately, a Grade 1 tumour of that type is at the lower end of the malignancy scale.I spent 12 days in hospital and returned to work at a significantly reduced capacity within 6 weeks. I continue working to this day as a self-employed sole trader in the same business and am very thankful for having an Income Protection insurance policy in place to provide additional support income for the past 11 years. As mentioned, I was on Dilantin and this continued for some years post surgery.  A gradual reduction was undertaken a few years after and was fine for a month or two.  However, the “auras” returned with a vengeance, and Dilantin was taken again. In early 2004 I again experienced an increase in auras despite the medication and another MRI discovered a second tumour adjacent to the region of the partial lobectomy in 1996.  I then underwent 6 weeks of radiotherapy in June and July 2004. Each day I took a “Far Side” cartoon in as well and caused many laughs amongst staff and other patients. Being light-hearted and jovial about it was perhaps my way of dealing with it! Any way, I have short term memory and concentration problems and frequently loose a train of thought, get stumped for words and sometimes blend words together… eg the decision to use alternate words such as “dog” or “hound” becomes “dound” or “hog” and sometimes a similar sounding word such as “frog” or “bound” will be said… it can be quite amusing sometimes, but occasionally it can be embarrassing. I also still frequently undergo an "aura" or pre-seizure feeling and often need to rest after they occur. The skull region where the operation took place often aches somewhat akin to the feeling after being hit in the head with a baseball/cricket ball a few days ago.  This pain is almost always present, but I have pretty well got used to it. I rarely need to take any pain killer to relieve it and just put up with it. I have been on various medications to control seizures. I currently take Keppra (1500mg) and Lamictal (100mg). As said before, I was originally on Dilantin (varying between 350 to 600mg/day) but accidentally took a double dose one morning in Feb 2005 and suffered a toxic reaction and had the change to the new medication. I too suffer erratic tiredness and lethargy from the medications. Given that I was advised that I could be “dead in a year” by the “junior neurosurgeon” on the day before surgery in 1996, I guess I have been very fortunate under the circumstances. I tried to find him in Nov 1997 to tell him I was still there but could not find him. I tracked down one of the junior Medico’s to give him an update of what had happened and to sincerely thank him and his colleague for their attempt to instigate the MRI in April 1996. The medico I spoke to was very interested to hear from me. As mentioned before, I was asked by the neuro-psychologist to speak with Paul and his family which was principally done via phone and email until we finally met a few days before Paul’s surgery. I went to the Hospital to visit Paul a few days after his surgery in the same hospital Ward where I was in 1996. Some staff actually remembered me which was interesting! Somehow I left an impression… good or bad??? I’m not too sure!!! LOL I let Paul know of my second tumour in early 2004 and he took over my initial role with him… he came out to my home and spent several hours with me talking through his experience with his treatment of Radiotherapy… it was very comforting. Paul has had a second scare, but has actually been given the OK. He is having another MRI soon to check progress. As I hope Paul will explain, he had a Grade II tumour, but can not remember the exact name of it for sure but think it was a Glioma! Anyway, I hope this will give you some idea of what you may experience. I guess Paul and I did not have a choice. It would also seem that Earthmonkey had no real choice either. It looks like Isis does though! It is my feeling that the operation path may well be the best way to go… BUT, BUT BUT… speak with others, research it, give it fair and reasonable consideration and weigh up the pros and cons. There is another few websites that offer some further resources that I strongly recommend… there is a very good one here in Australia at http://virtualmedicalcentre.com/diseases.asp?did=158 and there is a huge amount of info on the http://search.medscape.com/all-search?queryText=epilepsy site…one in particular I just found that may be useful… http://www.emedicine.com/neuro/TOPIC506.HTM is titled “Identification of Potential Epilepsy Surgery Candidates”. You may also like to type in “epilepsy surgery” in the search area for more info. I guess I will leave it at that for now. Hopefully you can approach this whole issue in a fair and reasonable manner and make the right, and well informed decision. I offer the best wishes to you. Regards, Craig Watson

To do or not to do. That is the question. Whether tis nobler of

Wow Craig, you really have been through it. With my situation they are not saying I have a tumor. What they are basically telling me is a have too much brain mass on the one side and they don't know why.  Thanks so much for the URL's on where to look for more info. I am going to check them out today. And yes I would love to hear from your friend or anybody else to help me with this horrid decision. By the way Earthmonkey are you still on medication at present?

Isis

A few extras...

Hello again...

First of all, have you had a chance to look at the sites and have any of them been helpful in any way? 

Secondly, I forgot to ask about your family situation and how old you are. I was 37 when I had the operation. At the time there was no real support system in place and pretty much went at it alone. My wife, also 37, and two children then aged 11(F) and 13(M) had absolutely no support. Hopefully, you and your family can benefit from the fellow users of this site and other support services around the place.

Like I said in my closing lines, do the research, don't be afraid to ask questions, questions and more questions until you are satisfied with the answers and make a very clear and informed decision.

Another site that MAY be helpul is www.epilepsy.org.au where there is also a great deal of info... one page in particular http://www.epilepsy.org.au/surgery_story2.asp has the response of two people to the question... Is Surgery For Me?

I will leave it at that for now...

Regards,

Craig Watson

Yorketown, South Australia

Just looked at the last two

Just looked at the last two sites. Thanks. They are helpful. What you and Earthmonkey are doing for me are helping me form the questions I need to ask these doctors before I go through with this. If I didn't have you guys I wouldn't even be knowing what to ask in the first place so I am very very thankful for what you have both brought up to me thus far. I think my problem is I am not starting out as bad as you guys were so it is a horrible decision to make for me. I definatley don't want to come out of a surgery worse off than when I was before.

Isis

Re: Just looked at the last two

Hi!  I have had epilepsy for 50 years and medicine didn't do the job.  So when I finally decided on surgery, I went for it with open arms.  I neverr got to the main surgery.  They had to put electrodes on top of my brain to find out where it was coming from.  I ended up with bleeds and 2 strokes.  So for me I will never have any type of surgery.  As others have said - go for it if you feel secure but be sure to find out as much as possible about what could happen to you.  My neuro surgeon is highly gualified and yet led me to believe that having your brain opened and having the electrodes put in was simple and most likely nothing bad would happen.  Well to say the very least I have 2- 4 seizures every night, never know when I will have one during the day, can no longer drive, and had to retire from teaching.  Strokes are not fun!!!

I am currently on 200mg

I am currently on 200mg Tegretol xr a day. When I went through surgery I was on Phenobarbital and Dilantin then changed to tegretol 1200mg a day and started lowering it about two years ago after 11 years since surgery. I am only having myoclonic seizures at this point. Before surgery I had been having several complex partials seizures daily as well as tonic clonics, cluster seizures, and status epilepticus weekly this stopped within three months of the surgery.

I have to agree with Craig, really weight the options. I have to say nuerosurgery was not a pleasant experience even though the end result for me has been good. I also have lost part of my periferal vision. I also went through months of visual hallucinations following surgery. I also have asphasia from the surgery I get nouns mixed up with synonyms or  I can't think of the noun.  I see a lot of people on the web who seem to be feeling great shortly afterwards but it took me several years. It took me over two weeks to be released from the hospital due to status. I was able to return to work part time three months after surgery. But I did not work full time again for over a year. There are effects from nuerosurgery which can take as long as ten years to show up. One thing you have to keep in mind is anyone who can communicate and be on the internet within weeks of surgery is doing well but there are probably many people out there who would not be able to type or read within weeks of the surgery. I was not able to type well for months following the surgery. Also the effects on communication are going to be very different if the surgery is not on the side of your speech. Just the swelling alone can make speech very difficult immediately following surgery. basically there is a wide range of experiences from people who are doing great right afterwards, to people who it can take a while but they are doing fine later, to people who will never be doing fine from it.

I don't know what I would do in your position. I had two choices die or be completely incapasitated sometime very soon or go through surgery and hope things will be better than the other choice. Have they given you any ideas about the effect of too much brain mass? Have you gotten second opinions? I would advise that. I did have several Drs telling me to do the surgery and doing everything they could think of to get me to agree to it. Have the drs given you some ideas of what type of effects you can expect from the surgery? What is their estimate of recovery time?

I also had a tumor (gangliaglioma) which is what was causing the seizures. They called it a lesion until after surgery and then they informed me that it was a tumor. If you don't understand or are not sure what the drs mean keep questioning them until they clarify themselves. I have found, just keep asking the same question, they will eventually figure out you are not getting their method of answering.

Hi Earthmonkey and Craig

Hi Earthmonkey and Craig,

Okay here's the story on me. Right now I am 53 years old. I am married to a wonderful guy so I've lucked out where marriage is concerned. However all the rest of my family is very far away so I basically only have my husband here to help after if I have the surgery. I have one son who is in college now so there are no small children to deal with at least.

I got the epilepsy the first time when I was 32. I was only taking one Tegretol when I started at night so nothing bothered me for the first few years because I only took it then when I went to sleep. At first this did the trick. Years went by and by the time I was in my 40's they had changed me to Carbatrol and my attacks were coming through the medication. By the time I was 45 the Carbatrol wasn't working so the doctor decided to put me on multiple medications. That basically ruined my whole life for years afterwards. He added Lamictal and that totaly ruined my life. I was dizzy all day long for 4 or 5 years. The doctor kept telling me my dizzy problem was not the pills/ Finally after years of dizzyness and my life being totally ruined I had to take matters into my own hands and pull myself off the Lamictol all by myself. The only reason I felt I could do it was because I still had the Carbatrol base. I had to dump that doctor at that point. After that I had another Neurologist who tried tons of other pills on me (all multiple drug combinations) and nothing was taking care of the episodes and my life continued being hellish on the pills. Finally I changed Neurologists again. This guy was much better that the rest of them. Instead of wasting my time he put me on Keppra and sent me right away to NYU Epilepsy centre where they put me in the hospital for a week with the electrodes on my head to make sure I did in fact have the epilepsy. I am now seeing an epilepsy specialist at NYU. So it is only the NYU team that I have seen so far that has suggested the surgery. That's the story on that. 

Now I have a question Earthmonkey. You said I will have "communication" problems if the epilepsy is not on the same side as my speech? Do I have that point right? or was that a typo???? I have Left Temporal Lobe and the Wada has indicated that my speech is on the left side so it is on the same side as the speech and memory. I was thinking because it is on the same side that I would have problems possibly with memory and speech after. Not the opposite way around. So do I have this wrong? 

Also as for the brain mass thing the only thing I was told by the Neurologist is the MRI shows the left temporal lobe is bigger than the right. He is saying I guess that it is deformed???? He said it just has more brain mass there. He did not saying I have a tumor. So the question is do they know from the MRI's if we have a tumor or is it only after they go in and see what is there when they know exactly what we have? (I'm confused on that point now.) 

Now going back in my history when I was a kid (2 years old) I apparently fell off the porch. My mother told me I broke my leg and there was a big bruise on the left side of my head over the ear so I'm not sure if my brain grew abnormal there as a result of that fall or if it just grew wierd all by itself. See what I mean? There is no scar tissue apparent in the MRI.

Anyways Craig I'm going to go back now to your last post and look at the last two sites you told me to look at. I'll do that right now.  Some of the other things at the other places you sent me originally I had already seen. By the way thank you both for taking the time to help me here. I'm so confused as to what decision to make. At the moment we are trying to get an appointment with the Physcology people at NYU. My doctor at NYU told me they are the department that can give me more answers on what to expect with my memory after surgery. So I'm not doing anything until after I see that doctor now. Anyways this it the very latest on my situation thus far.

Isis

 

I must have mistyped.  I

I must have mistyped.  I was trying to say that if the surgery is on the same side as speech it will have more of an effect on communication.   So you had it right.  I know they didn't tell me till after surgery, I don't know if it is on a case by case basis where for some people it is obvious and some not or if it is what they do. 

Okay, thanks.  I

Okay, thanks.  I appreciate all the help you've been giving me here.

Isis.

Hi Isis, I've had

Hi Isis,

I've had Epilepsy for 12yrs. Starting in 1995. I averaged about 5 seizures a month. Since trying different meds and no improvement, I had Right Temp. Lobe Surgery done in August of this yr. I wasnt awake during the operation. But when I awoke in icu, I had a horrific headache from the surgery site. But nothing that the pain killers they gave me couldnt help. That and along with ice packs did wonders for me. My jaw did hurt awhile afterwards, but only if I tried to open it too wide. I went home after just 5 days after having surgery.I have some small periferial vision loss in my left eye, but nothing too severe. But I knew that was a risk beforehand. My eye doctor told me that it wouldnt hinder me from driving, when that time comes around :). My memory and speech were not harmed since it was my left side that dominated all of that. As of this writing I have been seizure free going on 5 months! I too was very scared about the thought of surgery. But looking back on it all now, and seeing how much it has given me a better quality of life, I don't regret having any ounce of it done. I do still take Lamictal and Keppra, but I'll eventually start wheening off of it.

Take Care & God Bless,

Becky

RTL Surgery

I had surgery 5 years ago yesterday (Jan 17th) and have documented the process below:

http://users.eastlink.ca/~kehoe/

Kevin

 

 

 

I have just read your story Kevin...

Hello Kevin and Isis,

 I have just read through Kevin's story and it is very inspiring... Isis, if you haven't paid a visit, I STRONGLY suggest you do.

Glad to hear that the operation was so helpful to you Kevin and recommend everybody facing the decision about an operation read Kevin's story.

Regards,

Craig Watson

Yorketown, South Australia

Yes Craig. I did read all

Yes Craig. I did read all through Kevin's story twice already.  It's interesting how different everybody is with this epilepsy business eh? 

Isis

Progress Report!!!

Hello Isis,

Just wondering how you are proceeding along the decision making path? I would love to get an update.

Regards

Craig Watson

Yorketown, South Australia

Progress Report

Sorry I didn't get back to you earlier Craig. Monday was a holiday here in the USA. Nothing new to report as of yet. Still trying to get an appointment to get more answers from the doctors. If you want to talk to me one on one email me at hatshepsut100@yahoo.com

Isis 

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